The books I just bought:
--War and Peace
--C.S. Lewis, On Stories
--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen
--What Jane Austen Ate and Charles Dickens Knew
--Elizabeth Berg, Dream While You're Feeling Blue
Wow.
And am still reading Queen Isabella, which is a great read thus far. I have finally made it to part II. Yay!
Well at l;east I'll have stuff to read in the car when we go to Pittsburgh this weekend!
Thursday, May 10, 2007
Wednesday, May 09, 2007
For mother's day
Great story from Human Events:
For Mother�s Day - A Mother�s Determination
by Tom Purcell (more by this author)
Posted 05/09/2007 ET
Updated 05/09/2007 ET
It was 1994. She thought she’d heard a faint wheezing in her baby’s lungs. She took her baby to the doctor right away, who sent her to a specialist.
The doctor said it was nothing -- probably a touch of acid reflux. He said it was common for new mothers to overreact. He said he’d run some tests to be safe.
Later that night, she was preparing for bed. The phone rang. It was the doctor. Her daughter tested positive for Cystic Fibrosis.
The doctor warned her not to panic. The tests could be wrong – he’d run them again the following day. He warned her to avoid reading about the illness until it was confirmed.
But she couldn’t wait. She threw a rain coat over her pajamas, grabbed her sleeping baby out of her crib, then rushed out to a late-night book store. As she cradled her baby in her arms, she read everything she could about CF.
It is an hereditary disease that causes a child’s lungs, intestines and pancreas to become clogged with thick mucus. It is fatal. She’d be lucky if her daughter survived into her 20’s.
She broke down in the book store. She slid to the floor, crying uncontrollably as she held her baby tightly. She cried as though her baby had already been taken away.
The doctor confirmed the lab results. The pain was unbearable. She and her husband did not know what to do.
She reached out to a friend. Luckily, her friend knew plenty about CF. She knew former NFL star Boomer Esiason and his wife Cheryl. They have a son with CF. They’ve done extensive fundraising for the Cystic Fibrosis Foundation, and now head their own foundation.
The Esiasons contacted her right away. They understood her pain well and consoled her. They shared everything they knew about the illness.
She was instantly transformed. She began channeling her pain into mastering CF. She learned how to apply medications and treatments to give her daughter the best hope.
She learned of CF’s other challenges, too. Though there are 30,000 Americans who suffer from the illness, the number is too small to spur drug companies to do research. The CF market cannot generate enough revenue to recoup the millions needed to develop new drugs.
So she took the bull by the horns. She quit her job and jumped into the CF fundraising business full time. She joined boards and chairs events. She gives speeches wherever she can.
The money she raises goes to the Cystic Fibrosis Foundation. It hires its own scientists to advance its own medical breakthroughs (90 percent of the funds raised go directly to research). Thanks to so many just like her, the average lifespan of a child born with CF has jumped to 36.5 years.
But that isn’t good enough for her. In 1998, her second daughter was born with CF. There was only a 25 percent chance that she and her husband, both CF carriers, would have another CF child, but fate struck again. They felt unbearable pain again.
Every day is a battle for her now. Every day, her girls must take a collective 34 pills and an array of oral medicines. They must complete 10 breathing treatments and six 30-minute therapy sessions. The treatments and medicines are designed to extend their lives.
Every day, she works tirelessly to raise money to advance any technique or medicine that might extend a CF child’s life a little longer -- that might, if promising new research goes as hoped, cure this dreaded disease.
Hers is the story of a mother’s love -- a mother’s powerful determination to breathe life into thousands of children.
Her name is Angela Kinney and she could use a little help. She’ll be participating in the Great Strides walk in Pittsburgh on May 20th (an event that is held throughout May in cities across America). To contribute to her efforts go to www.cff.org/great_strides/angiekinney or contact her directly at angiekinney@comcast.net.
You might want to wish her a Happy Mother’s Day while you’re at it. She’s certainly earned it.
Sunday, May 06, 2007
Ear notes
Something I've noticed...
A lot of people seem to think that since I need a C.I., that I'm deaf and can't hear anything. That's not exactly true. I'm always getting asked "can you hear that?" or "I hope you can hear this" if I'm at a concert.
It's not a question of "hearing." I can hear sounds. I know when people are talking and I know when people are talking to me. It's a question of deciphering what I'm hearing, which is what the CI will help with. Right now, there aren't that many of the "Hairs" left in my cochlea that pick up sound. As a result, my brain has sort of "forgotten" what certain things sound like. So it's the translation of sound into information. I can still hear certain things, even though some upper pitch ranges are gone, which is why I usually can't hear phones or doorbells or microwave ovens. It's also why men's voices are easier to understand than kids or some women.
Wanted to clear that up for all of you--I can still hear , I just might not be able to understand .
A lot of people seem to think that since I need a C.I., that I'm deaf and can't hear anything. That's not exactly true. I'm always getting asked "can you hear that?" or "I hope you can hear this" if I'm at a concert.
It's not a question of "hearing." I can hear sounds. I know when people are talking and I know when people are talking to me. It's a question of deciphering what I'm hearing, which is what the CI will help with. Right now, there aren't that many of the "Hairs" left in my cochlea that pick up sound. As a result, my brain has sort of "forgotten" what certain things sound like. So it's the translation of sound into information. I can still hear certain things, even though some upper pitch ranges are gone, which is why I usually can't hear phones or doorbells or microwave ovens. It's also why men's voices are easier to understand than kids or some women.
Wanted to clear that up for all of you--I can still hear , I just might not be able to understand .
Thursday, May 03, 2007
"Suffering"?
Here's a thought...
I just got an email today from someone who's doing the CF Great Strides fundraising walk this weekend. She said that she was motivated to do it because she knows afamily who has a 2 YO boy who "suffers" from CF.
I never used the word "suffering" or its derivatives to describe my experience. It was normal life for me. Sure, there were times that were not so fun. But "suffering" or "CF suffer" always sounded, well (OK this is punny) "insufferable" to me. It just sounds so needy/beggy/whiny.
Is that just me?
I just got an email today from someone who's doing the CF Great Strides fundraising walk this weekend. She said that she was motivated to do it because she knows afamily who has a 2 YO boy who "suffers" from CF.
I never used the word "suffering" or its derivatives to describe my experience. It was normal life for me. Sure, there were times that were not so fun. But "suffering" or "CF suffer" always sounded, well (OK this is punny) "insufferable" to me. It just sounds so needy/beggy/whiny.
Is that just me?
Monday, April 30, 2007
Writer's block
Not a lot going on around here, health-wise (thank God!), so that's fantastic. Had a meeting w/ Kathy today, which was always helpful. Psychotherapy can be great.
I've been thinking about the Book idea again. Everyone is always saying "you should write a book." Well I don't know. The problem isn't so much the writing (writing is, after all, my job), but how to organize the material. How to make it interesting. I'd like to write a book that's informative but also a mixture of things--funny, serious, with faith thrown in there too (of course), and it seems a bit beyond my grasp as a writer. And there's the Anne Frank idea; who would be interested in the "unbosomings" of a 25 year old? Even if I do have more lives than a cat. I know that I'm tired of seeing/reading books that perpetuate old transplant/CF myths and I'd like to dispel some of them (in a humorous and thoughtful way, of course).
Any thoughts on this would be greatly appreciated. I have the CI surgery coming up so I will have an abundance of free time, at least for awhile. So I could get started if I felt that someone other than my mother (hi mom) would actually read it. And actually, she probably wouldn't get to it for years given her current reading pace (kidding!). So let's amend that to my parents. And maybe my siblings.
I've been thinking about the Book idea again. Everyone is always saying "you should write a book." Well I don't know. The problem isn't so much the writing (writing is, after all, my job), but how to organize the material. How to make it interesting. I'd like to write a book that's informative but also a mixture of things--funny, serious, with faith thrown in there too (of course), and it seems a bit beyond my grasp as a writer. And there's the Anne Frank idea; who would be interested in the "unbosomings" of a 25 year old? Even if I do have more lives than a cat. I know that I'm tired of seeing/reading books that perpetuate old transplant/CF myths and I'd like to dispel some of them (in a humorous and thoughtful way, of course).
Any thoughts on this would be greatly appreciated. I have the CI surgery coming up so I will have an abundance of free time, at least for awhile. So I could get started if I felt that someone other than my mother (hi mom) would actually read it. And actually, she probably wouldn't get to it for years given her current reading pace (kidding!). So let's amend that to my parents. And maybe my siblings.
Tuesday, April 24, 2007
Eat update...
Went to see Dr. Willett, my lovely ENT today, and we are still on for May 23rd for my C.I. surgery (cochlear implant, if you're just joining us). And apparently he saw another CF kid today who needs one, too! I told him we were going to start a whole new side business for him--CF kids with ruined ears.
I was actually there for a sinus clean-out, since that needed done, but we did talk C.I. a little. Everything should be smooth sailing from now until the 23rd...I just have to fax him the disability forms the state is making me fill out, even though I'm not technically disabled. Oh well. Whatever. I'll be glad to get this done, let me tell you.
I was actually there for a sinus clean-out, since that needed done, but we did talk C.I. a little. Everything should be smooth sailing from now until the 23rd...I just have to fax him the disability forms the state is making me fill out, even though I'm not technically disabled. Oh well. Whatever. I'll be glad to get this done, let me tell you.
Thursday, April 19, 2007
Yay good clinic!
Good clinic today--Yay! PFTs up four more points, so that's exciting. Closing in on the high of 60% (or so) which is also exciting. I go back the week before my C.I. surgery, so not until mid-May. Whew. It's so nice to go in, see people, and then leave. :)
The Vigil
She turned away and I noticed that her chin quivered as she started to speak. As she turned back, her tear-filled eyes met mine. "So, how do you thank someone for a life?"...
"You give it back, Jenna. You give it back."
--Richard Paul Evans, The Timepiece
Last night was LOOP's annual Candlelight Vigil, which celebrates transplant recipients, honors donors, and provides hope for those who are still waiting (that's about 96,000 Americans, by the way). Last year was my first year attending (I also spoke), but this year I was a member of the planning committee and was a greeter, which was easier for me since I didn't have to prepare remarks (even though I love to talk).
The transplant community is really a great, warm group of people. You have recipients, who just seem to be naturally drawn to each other, no matter what organ you received. Really, the experience is fairly universal--the waiting, the recovery, the immense gratitude and the feeling that "thank you" is totally inadequate to express what the gift of life really means to us.
But you have donor families in the community, too, and so often, they are glad just to see that we are alive and doing well. I once told a donor's dad that "thank you" feels like so little compared to what they gave. And he said that it's enough to know that we are healthy and happy. In a way, life goes on. At the Vigil, there is a video tribute to the donors, and some of them are so young--babies, even. But all of them elicit stirring thoughts, the paradox of donation--you are alive, watching the video, because they died. It can be quite eerie.
Then you have people who are "supporters of the cause"--they work on behalf of donation because they believe in it. They may not know a donor, or a recipient (they do after coming to work for LOOP!) but they want to be involved. They love to hear your stories, too. :)
It's a great community, very open and very caring. For everyone involved it's so emotional that these events are great ways to share all of that. Even as transplants have become more "common", they're still far from being totally mainstream, and a lot of people are afraid of them, or have a lot of misconceptions. Being with people who know the story makes it a lot easier. Especially since, with CF, I didn't have this kind of community because we had to "stay away" from each other, physically, to avoid infection. So you become fairly isolated. But the transplant community is close, and I love that. It's great to be able to share these feelings and spread the word about donation as you do it.
"You give it back, Jenna. You give it back."
--Richard Paul Evans, The Timepiece
Last night was LOOP's annual Candlelight Vigil, which celebrates transplant recipients, honors donors, and provides hope for those who are still waiting (that's about 96,000 Americans, by the way). Last year was my first year attending (I also spoke), but this year I was a member of the planning committee and was a greeter, which was easier for me since I didn't have to prepare remarks (even though I love to talk).
The transplant community is really a great, warm group of people. You have recipients, who just seem to be naturally drawn to each other, no matter what organ you received. Really, the experience is fairly universal--the waiting, the recovery, the immense gratitude and the feeling that "thank you" is totally inadequate to express what the gift of life really means to us.
But you have donor families in the community, too, and so often, they are glad just to see that we are alive and doing well. I once told a donor's dad that "thank you" feels like so little compared to what they gave. And he said that it's enough to know that we are healthy and happy. In a way, life goes on. At the Vigil, there is a video tribute to the donors, and some of them are so young--babies, even. But all of them elicit stirring thoughts, the paradox of donation--you are alive, watching the video, because they died. It can be quite eerie.
Then you have people who are "supporters of the cause"--they work on behalf of donation because they believe in it. They may not know a donor, or a recipient (they do after coming to work for LOOP!) but they want to be involved. They love to hear your stories, too. :)
It's a great community, very open and very caring. For everyone involved it's so emotional that these events are great ways to share all of that. Even as transplants have become more "common", they're still far from being totally mainstream, and a lot of people are afraid of them, or have a lot of misconceptions. Being with people who know the story makes it a lot easier. Especially since, with CF, I didn't have this kind of community because we had to "stay away" from each other, physically, to avoid infection. So you become fairly isolated. But the transplant community is close, and I love that. It's great to be able to share these feelings and spread the word about donation as you do it.
Tuesday, April 17, 2007
Candlelight Vigil
If you're in the Columbus area, tomorrow night is LOOP's annual Candlelight Vigil, which celebrates donors, recipients, and those still waiting for transplant. There will be speakers representing all the different aspects of donation (donor families, recipients--I spoke last year!--people waiting, families of people who died waiting), a slideshow tribute, and the lighting of a candle representing each person who is waiting for a transplant. If you've never been and are somehow connected to donation, you should go. It really is a powerful evening. For more information, head to Lifeline'ssite and click on "events" at the top of the page. It starts at 7:30, rain or shine...
Monday, April 16, 2007
two for the price of one!
Hear ye, hear ye... (OK, yes, I'm being dramatic here)
Amber (the second lung tx kid at Children's...OK, no kid, she's a college student!) and I will be performing (she's speaking, I'm singing) at the Lima Walk for Donation on April 29th. The event begins at 2:00 and we should be doing our thing around 3:30, 4:00. More more information go to Lifeline and click on the "events" link at the top of the page.
Amber (the second lung tx kid at Children's...OK, no kid, she's a college student!) and I will be performing (she's speaking, I'm singing) at the Lima Walk for Donation on April 29th. The event begins at 2:00 and we should be doing our thing around 3:30, 4:00. More more information go to Lifeline and click on the "events" link at the top of the page.
Saturday, April 14, 2007
Yes!
And the Pens won, 4-3, against Ottawa at Ottawa. Series at 1-1.
Go Pens!!!
(Yes, I am a hockey fan, for those of you who are unaware. And I'm sooo glad one of my teams in in the playoffs!)
Go Pens!!!
(Yes, I am a hockey fan, for those of you who are unaware. And I'm sooo glad one of my teams in in the playoffs!)
Support groups
Last week a few of the transplant families from Children's got together to have our first "support group" meeting, and I have to say, it was fun, probably because it didn't involve sitting around talking about "our feelings, " which would have been hard to do, given the group make-up.
There were two recipients: me, and then a 15 mo. old heart tx, who was just sooo adorable. He was 3 mo. old when he received his transplant, and he's just so cute. Love him. His mom and two older sisters were there with him. My parents had come with me, and the day had been organized by the mom of a heart-lung recipient, who was also around 3 months (I think) when he was transplanted. She brought her new baby, who was also very adorable. So, as you can guess, I was happy because there were a lot of cute kids.
We met in the library of the Ronald McDonald House (which is awesome...it has a reading room, a play room, a living room, all sorts of things. The kitchen was super-cool and very high-tech. There was, of course, a room totally devoted to the Buckeyes (well, it did say "In Honor of Jim Tressel" on the plaque outside, so you know...). But the library really needs some better adult books. I think I need to take care of that!
Anyway, we talked about how we got to the point of transplant, and some random things, like how the moms get their boys to take the drugs (I have a hard time with some of them--the predinose, for example, just tastes gross, and there are some days where I am sorely tempted just to spit it out.), activity, stuff like that. It was pretty general but a lot of fun. I wish Amber could've been there but 1) she was in Miami (lucky dog) and 2) it would've been a long drive for her since she lives upstate. The rest of us live in the general Central OH area.
But it was fun and I got the contact info. for everyone so hopefully we will be meeting again. Sorry to cut this short, but I'm having my 25th birthday shindig with my friends tonight in...oh....a half hour, and I need to get ready!! Eek! At least the cake is baked....yummy. :)
Oh, and I got my Donate Life plates! They are on my car and look awesome! If you live in Ohio be sure to go tot he BMV and ask for them ! They are $15 extra with $5 going to the Ohio Second Chance Trust Fund to raise awareness of organ and tissue donation throughout the state. Lifeline's website (link in the blogroll) has a link to the BMV, so go!
There were two recipients: me, and then a 15 mo. old heart tx, who was just sooo adorable. He was 3 mo. old when he received his transplant, and he's just so cute. Love him. His mom and two older sisters were there with him. My parents had come with me, and the day had been organized by the mom of a heart-lung recipient, who was also around 3 months (I think) when he was transplanted. She brought her new baby, who was also very adorable. So, as you can guess, I was happy because there were a lot of cute kids.
We met in the library of the Ronald McDonald House (which is awesome...it has a reading room, a play room, a living room, all sorts of things. The kitchen was super-cool and very high-tech. There was, of course, a room totally devoted to the Buckeyes (well, it did say "In Honor of Jim Tressel" on the plaque outside, so you know...). But the library really needs some better adult books. I think I need to take care of that!
Anyway, we talked about how we got to the point of transplant, and some random things, like how the moms get their boys to take the drugs (I have a hard time with some of them--the predinose, for example, just tastes gross, and there are some days where I am sorely tempted just to spit it out.), activity, stuff like that. It was pretty general but a lot of fun. I wish Amber could've been there but 1) she was in Miami (lucky dog) and 2) it would've been a long drive for her since she lives upstate. The rest of us live in the general Central OH area.
But it was fun and I got the contact info. for everyone so hopefully we will be meeting again. Sorry to cut this short, but I'm having my 25th birthday shindig with my friends tonight in...oh....a half hour, and I need to get ready!! Eek! At least the cake is baked....yummy. :)
Oh, and I got my Donate Life plates! They are on my car and look awesome! If you live in Ohio be sure to go tot he BMV and ask for them ! They are $15 extra with $5 going to the Ohio Second Chance Trust Fund to raise awareness of organ and tissue donation throughout the state. Lifeline's website (link in the blogroll) has a link to the BMV, so go!
Tuesday, April 10, 2007
OSU results
The results are in...I have a normal heart. Shocking, isn't it?
I love spending time at OSU discerning things we already knew! But I guess it's better to be careful when it comes to surgery prep.
I love spending time at OSU discerning things we already knew! But I guess it's better to be careful when it comes to surgery prep.
Whoa
I read this on wiki's page on lung allocation scores...how they decide who ranks where for lung transplants. This is nuts. It's amazing I got mine at all.
My lungs came from Minnesota and the woman was a lot older than me (I know more about my donor than most people because of the press surrounding my transplant). So how I got her organs I have no idea. It's just nutty to think about.
For example, a lung from a 16 year old donor would first be offered to the person in the age group 12-17 with the highest lung allocation score and matching blood type in the vicinity of the transplant center. If there no suitable recipient in that age group, it would next be offered to the highest LAS-scoring candidate who is under 12 years of age. Finally, it would be offered to the highest LAS-scoring person of age 18 or older. If there is no suitable candidate within the area, the lung may be offered to someone farther away, within certain time and distance constraints.
My lungs came from Minnesota and the woman was a lot older than me (I know more about my donor than most people because of the press surrounding my transplant). So how I got her organs I have no idea. It's just nutty to think about.
Monday, April 09, 2007
It's my birthday!
Yes friends, I am 25 today. Woohoo!
But seriously, I do have to thank my donor family, whoever they are, because without their generosity I know I would not be here today to celebrate with my family and my friends (well the friends are on Saturday). I am so grateful for the gift they gave me!
I will hopefully have some pics up later..stay tuned... :)
But seriously, I do have to thank my donor family, whoever they are, because without their generosity I know I would not be here today to celebrate with my family and my friends (well the friends are on Saturday). I am so grateful for the gift they gave me!
I will hopefully have some pics up later..stay tuned... :)
Sunday, April 08, 2007
popcorn time!
We haven't had a good popcorn time in awhile, so here's what I've been watching:
--Charlotte's Web: Dakota Fanning and the voices of Julia Roberts, Oprah, Robert Redford, and others. I loved the animated version I had seen as a kid, but this one was a lot closer to the book, I think, and I loved the mix of real animals w/ CGI. You couldn't even tell the difference, which was very cool. Dakota was awesome as Fern, and her brother Avery was hysterical. Her dad seemed a bit too young to be her dad, though. The voice work is also great, and the fact that they're celebrities doesn't detract from it. You're not thinking every time Charlotte talks, "Oh that's Julia Roberts." Her voice is perfect for the part. Very funny, too, especially the geese, and the references to farm animals, like one of the sheep telling the other sheep they don't need to blindly follow each, they can think for themselves! Amusing but also sad, esp. the ending. (If you haven't seen it or read the book--all two of you--I won't ruin it) Excellent, and not just for kids. If you loved the book you will love the movie.
--Return to Me: Wrote about this in the post below, but it really is good. Takes place in Chicago, where Bob Rueland is married to the love of his life, Elizabeth, whom he's been dating since they were 15, and married to since they were 20. On the night of a big benefit for Elizabeth's zoo (she's an ape keeper), they get into a car accident and she dies. In the same hospital, a young woman, Grace, is waiting for a heart transplant. The film then goes to a year later. Grace got the transplant, and Bob's friend Charlie, who used to work with Elizabeth, sets Bob up on a blind date at the Irish-Italian restaurant that Grace's grandfather (Carrol O'Connor, in his last movie role) runs with his friend Angelo, and where Grace is a waitress. Grace and Bob hit it off and Bob comes back. They start dating. You can figure out the rest. Also stars Bonnie Hunt as Grace's friend (and the daughter of one of the restaurant's partners), with James Belushi as her potty-mouth Chicago cop husband (they are a hysterical couple). The old guys who run O"Malley's are also a great group of people, arguing over the best singers and ball players while they play poker in the back. One of the few transplant movies I've seen, and it's very accurate. Love that!
--A Good Year: Haven't finished this one yet, but I like what I've seen. Russell Crowe plays an uptight London stockbroker who inherits an estate and vineyard in Provence from his late Uncle Henry, who he used to spend summers with as a kid. In hot water with the government for some recent trade practices, he starts to think about keeping the place and moving down there. I can't tell you anymore because, liek I said, I haven't finished it, but it's good so far, and there will definitely be a girl involved. Freddy Highmore (Finding Neverland) plays a younger Russell Crowe in flashback sequences, and he's very good. He's good in everything, what am I saying?
Right now I'm watching The Sound of Music, and I don't think we need a review of that. Capt. Von Trapp is taking Maria to task for the Play Clothes Incident. :)
--Charlotte's Web: Dakota Fanning and the voices of Julia Roberts, Oprah, Robert Redford, and others. I loved the animated version I had seen as a kid, but this one was a lot closer to the book, I think, and I loved the mix of real animals w/ CGI. You couldn't even tell the difference, which was very cool. Dakota was awesome as Fern, and her brother Avery was hysterical. Her dad seemed a bit too young to be her dad, though. The voice work is also great, and the fact that they're celebrities doesn't detract from it. You're not thinking every time Charlotte talks, "Oh that's Julia Roberts." Her voice is perfect for the part. Very funny, too, especially the geese, and the references to farm animals, like one of the sheep telling the other sheep they don't need to blindly follow each, they can think for themselves! Amusing but also sad, esp. the ending. (If you haven't seen it or read the book--all two of you--I won't ruin it) Excellent, and not just for kids. If you loved the book you will love the movie.
--Return to Me: Wrote about this in the post below, but it really is good. Takes place in Chicago, where Bob Rueland is married to the love of his life, Elizabeth, whom he's been dating since they were 15, and married to since they were 20. On the night of a big benefit for Elizabeth's zoo (she's an ape keeper), they get into a car accident and she dies. In the same hospital, a young woman, Grace, is waiting for a heart transplant. The film then goes to a year later. Grace got the transplant, and Bob's friend Charlie, who used to work with Elizabeth, sets Bob up on a blind date at the Irish-Italian restaurant that Grace's grandfather (Carrol O'Connor, in his last movie role) runs with his friend Angelo, and where Grace is a waitress. Grace and Bob hit it off and Bob comes back. They start dating. You can figure out the rest. Also stars Bonnie Hunt as Grace's friend (and the daughter of one of the restaurant's partners), with James Belushi as her potty-mouth Chicago cop husband (they are a hysterical couple). The old guys who run O"Malley's are also a great group of people, arguing over the best singers and ball players while they play poker in the back. One of the few transplant movies I've seen, and it's very accurate. Love that!
--A Good Year: Haven't finished this one yet, but I like what I've seen. Russell Crowe plays an uptight London stockbroker who inherits an estate and vineyard in Provence from his late Uncle Henry, who he used to spend summers with as a kid. In hot water with the government for some recent trade practices, he starts to think about keeping the place and moving down there. I can't tell you anymore because, liek I said, I haven't finished it, but it's good so far, and there will definitely be a girl involved. Freddy Highmore (Finding Neverland) plays a younger Russell Crowe in flashback sequences, and he's very good. He's good in everything, what am I saying?
Right now I'm watching The Sound of Music, and I don't think we need a review of that. Capt. Von Trapp is taking Maria to task for the Play Clothes Incident. :)
Saturday, April 07, 2007
Hollywood wisdom
Of course I'm happy. What else am I gonna be? I don't feel like I should have "days." I should be happy just to be alive. And I am! I'm alive because someone else is dead. I should just shut up and be happy, right?
--Grace, Return to Me (she received a heart transplant)
Great movie, takes place in Chicago...go watch it. It may be the only transplant movie I know of. :)
Friday, April 06, 2007
OSU round 2
So Yesterday was OSU round 2, and it went better, as in we actually got all the testing done. :) After the IV was put in (they're amazingly good at that), we drank water (but not as much as last time), then had the scan taken. 15 minutes of lying under a big Xray thing, lots of fun, let me tell you. Then we waited for the treadmill test itself, which involved lots of sticky (cold!) probes put on my torso and more nuclear stuff in the IV line (so far I haven't been glowing in the dark, but we'll see what happens at the Vigil tomorrow! Heh heh).
The test itself was, um, stressful . The beginning wasn't too bad--10% incline at 1.7, then 2.5, miles an hour. That was OK. When we cranked it up to 12% incline I got a little iffy, and once it started going 3.5 at that incline I was done . No thank you. Besides the fact I haven't even gone 3.0 in my regular workouts with no incline. My BP was OK, an I guess my HR was OK but I was hyperventilating to beat the band. So we stopped there, in "stage 3." I have no idea what that means for me, but I guess I'll find out. Then we did another heart scan/X ray thing for the "post" and then we were home. Whew. My stomach was not entirely happy with me, having been NPO for so long, but I did eat dinner before heading off to Mass.
Today I'm pretty sore and I've got a headache, probably because my eating is all off. I'm trying to fix that. Maybe a nap is in order...
The test itself was, um, stressful . The beginning wasn't too bad--10% incline at 1.7, then 2.5, miles an hour. That was OK. When we cranked it up to 12% incline I got a little iffy, and once it started going 3.5 at that incline I was done . No thank you. Besides the fact I haven't even gone 3.0 in my regular workouts with no incline. My BP was OK, an I guess my HR was OK but I was hyperventilating to beat the band. So we stopped there, in "stage 3." I have no idea what that means for me, but I guess I'll find out. Then we did another heart scan/X ray thing for the "post" and then we were home. Whew. My stomach was not entirely happy with me, having been NPO for so long, but I did eat dinner before heading off to Mass.
Today I'm pretty sore and I've got a headache, probably because my eating is all off. I'm trying to fix that. Maybe a nap is in order...
Monday, April 02, 2007
Learning from CF
This is a great article over at the Canton Repository. Here's the beginning:
Read the whole thing. As for me, I agree. It's amazing how many people are totally insensitive to this issue. Like just because I had CF or whatever I shouldn't have any goals, shouldn't want a normal life like everyone else. I should just languish here and let nature take its course. In fact, soon after I was diagnosed, one of my classmates said to me, "Why are you studying? You're just going to die anyway." That was a great thing for an 11 year old to hear, let me tell you.
People can be so crass. And they just assume that you shouldn't do anything, that your life isn't worth living if it isn't perfect. GRRRRR.
Recently, a co-worker, an intelligent but brash young man, asked me a question about my late husband, Jim, that irritated me.
He said, "You knew about his cystic fibrosis before you married hihttp://beta.blogger.com/img/gl.link.gifm, didn't you?" In other words, Jim was "damaged goods," and what was I thinking to marry him? The question also implies that illness precludes one from happiness and a normal life. How could a sick person possibly be a good mate?
I swallowed my pride, thinking this young man hadn't had life experiences that would allow him to understand why I had married under those circumstances. Then he asked, "Didn't your husband hate being alive?"
That one blindsided me. I answered as calmly as I could that Jimmy had loved living. Yes, he was short of breath. Yes, a bulky oxygen tank encumbered him. Yes, he had to do daily therapies, but at no time did I hear him say, "Gee, I'm sorry I woke up today!"
Read the whole thing. As for me, I agree. It's amazing how many people are totally insensitive to this issue. Like just because I had CF or whatever I shouldn't have any goals, shouldn't want a normal life like everyone else. I should just languish here and let nature take its course. In fact, soon after I was diagnosed, one of my classmates said to me, "Why are you studying? You're just going to die anyway." That was a great thing for an 11 year old to hear, let me tell you.
People can be so crass. And they just assume that you shouldn't do anything, that your life isn't worth living if it isn't perfect. GRRRRR.
Thursday, March 29, 2007
The OSU experience
OK, so we weren't able to actually do the tests, but the people were really nice, which is a plus. Here's how it went:
Got there around 10:30, our appointment being at 10:45. We went to the Ross Heart Hospital, checked in w/ the outpatient (or "ambulatory") office (like a little cubicle), and then the receptionist took us down the hall to the Cardiac Lab. I was taken promptly (after having to fill out one of those god-awful forms with NEVER enough room for all my drugs). The techs had to put in a peripheral, which only took 2 tries, amazingly. One of the techs said they get a lot of cancer patients whose veins are shot from chemo, so they're good about getting the hard sticks, of which I definitely qualify.
Through the IV was injected some sort of radioactive material that would go to my heart so it would show up on X-rays and what not so they could get a nice look at the muscle itself and vein structure. I had to wait 45 minutes to an hour so it would absorb. And I had to drink a ton of water, like 2 1/2 bottles, in that time frame.
Now for most people I imagine this wouldn't be a problem (except for the bathroom thing). Well it is for me. I cannot drink a lot of water on an empty stomach. For some reason, it makes me nauseous, and it's also why I can't take pills w/ plain water (chalky ones, I mean. Capsules are fine.). So as I frantically tried to drink all this water (I did get about one bottle down), I was starting to feel nauseous. Plus my blood sugar was probably all out of whack since I'd been NPO for about 14 hours now.
When I went back for the heart scan (like the one chest scan that measures gas diffusion in your chest, but I forget what it's called now), I was nauseous, so the woman brought in a bag (they use bags and not basins. Those actually kind of work better.). I almost made it through the test...three minutes left, and all that water (plus bile) came back up. And since i was lying flat, it was an interesting process. So we have to do the test again, but there was no way it was getting done that day, because until I ate something substantial I would just throw up again. My blood sugar was 84, so yeah, it was low. The test is now rescheduled for next Thursday in the AM, so hopefully we can avoid the nausea problem. I hope so.
The place is HUGE. All the different hospitals seem like they're interconnected, and there are a lot of good signs, but it's still huge. And you've got the two extremes--the power walkers and the slooooooowwwwww people. There's almost never anyone in the middle.
Overall, not a bad experience at an "adult" hospital. Part II next week!!
Got there around 10:30, our appointment being at 10:45. We went to the Ross Heart Hospital, checked in w/ the outpatient (or "ambulatory") office (like a little cubicle), and then the receptionist took us down the hall to the Cardiac Lab. I was taken promptly (after having to fill out one of those god-awful forms with NEVER enough room for all my drugs). The techs had to put in a peripheral, which only took 2 tries, amazingly. One of the techs said they get a lot of cancer patients whose veins are shot from chemo, so they're good about getting the hard sticks, of which I definitely qualify.
Through the IV was injected some sort of radioactive material that would go to my heart so it would show up on X-rays and what not so they could get a nice look at the muscle itself and vein structure. I had to wait 45 minutes to an hour so it would absorb. And I had to drink a ton of water, like 2 1/2 bottles, in that time frame.
Now for most people I imagine this wouldn't be a problem (except for the bathroom thing). Well it is for me. I cannot drink a lot of water on an empty stomach. For some reason, it makes me nauseous, and it's also why I can't take pills w/ plain water (chalky ones, I mean. Capsules are fine.). So as I frantically tried to drink all this water (I did get about one bottle down), I was starting to feel nauseous. Plus my blood sugar was probably all out of whack since I'd been NPO for about 14 hours now.
When I went back for the heart scan (like the one chest scan that measures gas diffusion in your chest, but I forget what it's called now), I was nauseous, so the woman brought in a bag (they use bags and not basins. Those actually kind of work better.). I almost made it through the test...three minutes left, and all that water (plus bile) came back up. And since i was lying flat, it was an interesting process. So we have to do the test again, but there was no way it was getting done that day, because until I ate something substantial I would just throw up again. My blood sugar was 84, so yeah, it was low. The test is now rescheduled for next Thursday in the AM, so hopefully we can avoid the nausea problem. I hope so.
The place is HUGE. All the different hospitals seem like they're interconnected, and there are a lot of good signs, but it's still huge. And you've got the two extremes--the power walkers and the slooooooowwwwww people. There's almost never anyone in the middle.
Overall, not a bad experience at an "adult" hospital. Part II next week!!
Monday, March 26, 2007
Two good clinics in a row!!
Today I had another good clinic--huzzah! PFT, DLCO, NiOX numbers all satisfactory. We are starting Zithormax (I think as another way to keep the "pool clean", to use my prophylactic analogy), but it's only MWF (like the Bactrim...what is up with that? No idea. Oh well). And my next appt. isn't until the 19th of April. woohoo!
Tomorrow I go to OSU to have my heart checked out--apparently one of the EKGs we did when I was in house came back slightly abnormal, so we want it checked before my ear surgery (mya 23rd, baby). I'll let you know...
Tomorrow I go to OSU to have my heart checked out--apparently one of the EKGs we did when I was in house came back slightly abnormal, so we want it checked before my ear surgery (mya 23rd, baby). I'll let you know...
Friday, March 23, 2007
Is it worth it?
This is a question I asked a few times (OK, more than a few times) before my transplant. It's a question that can come up in the observation/pre-op process, too. You have to be willing to accept the transplant and that alll the crap you'll go through will, eventually, be worth it. And some people decide that it's not; they want to 'cash it in,' so to speak.
I can relate to that on some level, because I thought that a few times. When we first began talking about the transplant I was very reluctant, because I was still pretty functional. The problem is, you have to be listed before you really are non-functional, because they can't do the transplant if you're too sick.
And recently, with all the IV crap, I've thought "wow, why did I do this again?" But then I thought about it, and it'll be two years in July. In four months. And that's two years that I am about 99% sure I wouldn't have had if I haven't gotten the transplant. Some great things have happened in that time span, and even the ordinary things take on air of greatness when contrasted with the fact that you might not have been here to enjoy it otherwise.
What brought this to the foreground again? I was reading an article in the Arizona State University paper about two students w/ CF. One was a graduate, and one was a graduate student (I think). The one who had graduated also had a sister with CF, who died two years after a transplant. So she (the student) decided she didn't want to get one because everyone she knew that had one only lived about two years.
Now like I said above, I am sympathetic to this viewpoint. Well, to a point. Because let me tell you, when I started to get really sick, I was glad I was on that list. Knowing that your mortality is nigh makes you really wish it weren't, sometimes. I absolutely wanted that surgery. It was crazy.
And having almost hit the two year mark myself, I can't imagine not living these two years. They were good ones. And I don't know how this girl will feel if she gets worse and has said no to a transplant. Hopefully she'll be content with it. I hope so. Because you have to do what's right for you. But I wouldn't've been able to live with myself if I didn't go for it. I'm not really sure how people can turn down the second chance at life. Because before transplant, "my life was stolen from me...I [was] living a life I had no wish to live." (The Hours--great movie)
Like I said, everyone's different. But something about it just doesn't jive with me. But that's just me.
I can relate to that on some level, because I thought that a few times. When we first began talking about the transplant I was very reluctant, because I was still pretty functional. The problem is, you have to be listed before you really are non-functional, because they can't do the transplant if you're too sick.
And recently, with all the IV crap, I've thought "wow, why did I do this again?" But then I thought about it, and it'll be two years in July. In four months. And that's two years that I am about 99% sure I wouldn't have had if I haven't gotten the transplant. Some great things have happened in that time span, and even the ordinary things take on air of greatness when contrasted with the fact that you might not have been here to enjoy it otherwise.
What brought this to the foreground again? I was reading an article in the Arizona State University paper about two students w/ CF. One was a graduate, and one was a graduate student (I think). The one who had graduated also had a sister with CF, who died two years after a transplant. So she (the student) decided she didn't want to get one because everyone she knew that had one only lived about two years.
Now like I said above, I am sympathetic to this viewpoint. Well, to a point. Because let me tell you, when I started to get really sick, I was glad I was on that list. Knowing that your mortality is nigh makes you really wish it weren't, sometimes. I absolutely wanted that surgery. It was crazy.
And having almost hit the two year mark myself, I can't imagine not living these two years. They were good ones. And I don't know how this girl will feel if she gets worse and has said no to a transplant. Hopefully she'll be content with it. I hope so. Because you have to do what's right for you. But I wouldn't've been able to live with myself if I didn't go for it. I'm not really sure how people can turn down the second chance at life. Because before transplant, "my life was stolen from me...I [was] living a life I had no wish to live." (The Hours--great movie)
Like I said, everyone's different. But something about it just doesn't jive with me. But that's just me.
Update!
Yeah OK it's been awhile but! we DC'd all the drugs yesterday: vanco, the pill, the TOBI aerosol. PRAISE GOD. I am so excited. I took a real shower this morning and my hair ROCKS!!! :)
I'm feeling a lot better and hopefully my appointment on Monday will go swimmingly. I really don't want to have another setback. let's rock and roll!
Also, my ear surgery is tentatively scheduled for the week of Memorial Day weekend. At least I can celebrate my birthday and go to my cousin's First Communion bash without issues. So that's good.
I'm feeling a lot better and hopefully my appointment on Monday will go swimmingly. I really don't want to have another setback. let's rock and roll!
Also, my ear surgery is tentatively scheduled for the week of Memorial Day weekend. At least I can celebrate my birthday and go to my cousin's First Communion bash without issues. So that's good.
Monday, March 19, 2007
tax breaks for organ donors?
Paying Big to Be A Donor
Gifting an Organ Can Be Costly. Would a Tax Break Cross a Moral Line?
By Jason Feifer
Special to The Washington Post
Tuesday, March 20, 2007; Page HE01
Before Michael Friedberg donated a kidney to his wife last year, he underwent multiple tests and battled the usual jitters. Then he took one other step: He refinanced the family's home.
Friedberg, 60, works as an auto mechanic in Bladensburg, and he's paid on commission. Lifting heavy car parts soon after the surgery would be impossible, so he wanted to prepare for a drought of income by reducing his mortgage payments. The drought came: After the operation, he was out of work for two months and lost about $14,000 in wages.
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Michael Friedberg of Bladensburg lost about $14,000 in wages last year while recuperating after he donated a kidney to his wife. Some states help compensate organ donors for expenses they incur, but such moves stir debate.
Michael Friedberg of Bladensburg lost about $14,000 in wages last year while recuperating after he donated a kidney to his wife. Some states help compensate organ donors for expenses they incur, but such moves stir debate. (By Lois Raimondo -- The Washington Post)
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"I didn't have a choice," he said. "It was that or my wife was going to die. The waiting list was, at that time, like eight years to get a kidney."
There were 6,196 living-organ donors last year, and Friedberg wasn't alone in his financial losses. The recipient's health insurance typically pays for the donor's medical costs such as the surgery and various pre- and post-op tests, but donors are on their own for the rest: travel expenses for the numerous trips to the hospital, nearby hotel rooms before and after procedures and wages lost while they recuperate.
Transplant advocates fear those costs are a deterrent to donating, and so have been searching for ways to compensate living donors, who can give kidneys, bone marrow and a few other body parts. But by doing so, they're inching up on a loaded question: Is it morally wrong to pay people for their organs -- or at least for some of the costs incurred in gifting them?
Virginia Gov. Timothy M. Kaine may weigh in on the question when he decides whether to sign a bill that would authorize an income tax deduction of as much as $5,000 for living donors to help cover uncompensated expenses.
The proposal is modeled after a $10,000 deduction that Wisconsin enacted in 2004. At least 10 other states have adopted similar incentives, and more are considering it.
Other reimbursement models have targeted donors' lost wages: The federal government and some states -- including Maryland and Virginia -- give their employees 30 paid days off if they donate an organ. Advocates have asked large companies to follow suit. But such measures, while appreciated by many donors, haven't solved their financial problems.
Ed Nicholson, of Eau Claire, Wis., was the first person to take advantage of his state's law. He lost about $3,200, mostly in missed wages, in donating a kidney to his brother; the tax law let him recoup a few hundred dollars. That's typical of the law's savings.
"It helps," Nicholson said, "but it doesn't go far enough."
Those who hoped a tax break might attract more donors have also been disappointed. Since the Wisconsin law passed, living-organ donations there have dropped from 199 in 2004 to 167 last year.
That's just the normal ebb and flow of organ donations, said the bill's sponsor, state Rep. Steve Wieckert. As the tax-break idea gains traction around the country, he predicts, organ donations will increase.
Who Pays -- and How
Some advocates see donor tax breaks as a matter of government responsibility.
"If a citizen is willing to step forward and . . . donate their own body, the least the state can do is pick up the expenses," said Idaho state Sen. Mike Burkett, the leading force behind a law in that state that allows living donors an income-tax credit. (A credit is more generous than a deduction: In Idaho's case, a donor can reduce his state tax bill by as much as $5,000 to compensate him for expenses associated with giving up an organ.)
The federal government is also preparing to provide compensation, through a four-year program that is expected to begin reimbursing donors later this year.
Donor reimbursements sidestep the law against trafficking in human organs, supporters say, because nobody stands to profit. Nor do they raise the kinds of ethical questions attached to buying and selling organs: They don't run the risk, for example, of turning retread organs into luxury items available only to the wealthy or of inducing murder because of a good organ resale price.
Still, while the medical community generally endorses reimbursement, health-care practitioners know they're on a slippery ethical slope, regardless of whether the practice increases organ donations and saves lives.
"I think that we have to be very careful about the debate, because I think the American public has shown that they're willing to donate but they have a lot of internal reservations about how to do it," said Cindy Speas, director of community affairs at the Washington Regional Transplant Consortium.
But economist David E. Harrington said the states' tax deductions are already tantamount to outright payment. If states were more direct about it, he said, more donations might follow.
Harrington, who teaches at Kenyon College in Ohio, compares the issue to the donation of cadavers to medical schools. The schools frequently pay for funerals or cremations after the cadavers have been used; in states where funeral costs are higher, more bodies are donated, Harrington said.
"Why don't you do the same thing with organ donation?" he said: Think of it as paying for the donor's eventual funeral expenses, rather than for his organ.
But other medical experts fear such gestures could upset the public. A report published last year by the Washington-based Institute of Medicine and co-authored by James DuBois, director of the Center for Health Care Ethics at St. Louis University, soundly rejected the idea of paying organ donors -- even for their funeral costs.
The report, however, didn't object to tax breaks for living donors. The difference, DuBois said, is that covering funeral costs can seem like a financial incentive, while tax breaks are generally considered an effort to remove a barrier to donation. It might be semantics, he said, but it makes a difference: "Will the public interpret [payment for funerals] as a sign of gratitude, or as a deceitful way of trying to buy organs?"
Making Do
In the meantime, living donors have had to find ways to cover their costs.
Some, like Hagerstown, Md., resident Lillian Ecton, said it's a matter of planning ahead. She knew for a year that she'd be donating a kidney to her brother, so she saved up as much vacation time as she could. In the end, she still had to forgo a week's pay last year, but she wasn't bothered by it.
D.C. resident Sahra Torres-Rivera donated a kidney to a friend in 2001 and took three weeks off to do it. She thought her company's medical leave policy would cover her surgery and recovery but learned that as a temporary employee she was not eligible.
Co-workers petitioned the company to reimburse her lost pay from an emergency fund into which they had contributed. "It was overwhelming, the support that I got from my co-workers," Torres-Rivera said.
Ultimately, the company decided to pay the wages itself.
And, of course, some have taken to the Internet. Luke Sams, a Seattle resident, last year launched a Web site through which he solicited -- and received -- $3,000 to cover his expenses in donating a kidney to a friend.
Although some donors interviewed for this article said the process had caused them financial hardship, none regretted their decision. A few weeks or months of lost wages doesn't compare to the potential loss of a loved one or friend, they said.
That's how Friedberg, the auto mechanic, sees it. His wife, Mary, is alive thanks to his kidney, and now he's hard at work, making up for the money he lost.
"The kidney's working good for her, and I've got good body parts," he said.
"I kid with her. I said, 'Listen, it's lasted me 60 years, so you should be able to use it for another 60.' " ?
Friday, March 16, 2007
For my Jewish constituency (if I have one)
Curious about donation? Here's an article that might clear up some things:
Nov. 15 marks the fourth anniversary of Mark Abrams’ heart transplant, and still he is reluctant to talk about it, especially in public.
“I rehash it every day in my life,” he says of an ordeal that has included 20 additional hospitalizations, a slew of medications and bouts of gout, early-onset osteoporosis, bleeding ulcers, and mini-strokes.
But then, he said, he thinks about the second chance he was given and of all the other patients who need transplants and might not get them, and he knows he must tell his story.
“The problem is the science is there, the technology is there, but what is not there are people” willing to be donors, said Abrams. “People are still afraid to even think about it. It’s not something they want to think about — it happens after their death.”
The Short Hills man spoke about his experience during High Holy Day services at Temple B’nai Abraham in Livingston, where he is a member. Last week, just after a weekend that was designated Organ Donor Sabbath by the New Jersey Organ and Tissue Sharing Network, he sat down with NJJN to talk about his own transplant and urge people to sign up as organ donors.
Abrams was 37 years old when he was diagnosed with dilated cardiomyopathy — a disease of the heart muscle. After that, he said, he sought opinions from cardiologists all over New York and New Jersey and ended up at Columbia Presbyterian Hospital, where they told him his heart was pumping inefficiently but not badly enough to put him on the transplant list. Instead he was put on medications until three years later, when his appendix burst. After that he spent five years in and out of hospitals before being admitted in August 2002 to the hospital to await a heart. One became available that November.
Now 49 years old, he still deals with the side effects of the heart disease and medicines. He also goes for weekly blood tests and still rarely drives his wife, Lisa, or his daughters — 12-year-old Samantha and 10-year-old Alexandra.
But he tends to focus on what he gained — especially the time he spends with his children. He missed out on some things — for a couple of years he couldn’t play catch in the backyard with his daughters or teach them how to ride their bikes. Now, on good days, he can play catch. And next month he will be there to celebrate Samantha’s becoming a bat mitzva.
“I try not to dwell on the past too much,” Abrams said. “I take it day by day and try to look to the future…. My wife’s been wonderful. If it wasn’t for her I wouldn’t be here today…. I can’t say I feel okay all the time, but the alternative is death, so I’m thrilled to wake up every day.”
In a sermon delivered on the eve of Yom Kippur, B’nai Abraham’s Rabbi Clifford Kulwin urged his congregation to spread the message of organ and tissue donation — and invited Abrams to the bima to tell his story. As part of this month’s Donor Sabbath, the NJ Sharing Network organized a conference call with Kulwin, the network’s president and chief executive officer Joe Roth, and a pastor. The interview will be available as a podcast on the network’s Web site.
Kulwin was moved to address the issue after hearing of Abrams’ experience and that of a woman awaiting a kidney transplant.
Kulwin was hospitalized while on vacation in Glens Falls, NY, for emergency gall bladder surgery. While recuperating, he walked around the recovery floor and noticed a woman sitting alone in a room. He walked in and talked to her. She was a dialysis patient, waiting for a kidney to become available for transplant.
It wasn’t Kulwin’s only transplant-related encounter.
“When I was getting my driver’s license renewed, I asked and learned some facts,” Kulwin said. “All of that I found profoundly moving. There are so many things in this world we can’t do anything about, and here’s something we can do. There’s no excuse not to.”
Rabbis across the denominational spectrum agree that, contrary to some stubborn myths, organ donation is permissible under Halacha, or rabbinic law, said Kulwin.
And yet not enough people are willing to volunteer. At any given moment, roughly 90,000 people nationally are waiting for an organ transplant, with a new name added to the list every 20 minutes. In New Jersey alone, roughly 3,000 people are on the list, according to the Sharing Network.
The donor Sabbath was intended to encourage people to sign donor cards.
“It’s an important way for our major religions to show support for organ donation,” said Myra Burks-Davis, spokeswoman for the Springfield-based Sharing Network. “We’re trying to raise awareness and get a multiethnic point of view.”
The New Jersey Organ and Tissue Sharing Network, with offices in Springfield, can be reached at 1-800-SHARE-NJ, 973-379-4535.
Wednesday, March 14, 2007
UM scientists finding exciting things...
From the Ann Arbor News:
A University of Michigan study involving a type of lung stem cells suggests they may be able to help with lung disease and donated organ rejection.
That's significant because a large number of lung transplant patients experience chronic rejection of donated lungs, with rejection rates of about 60 percent during the first five years after transplantation.
The researchers studied mesenchymal stem cells, a type of progenitor cell that most commonly originates in the bone marrow.
They found that the MSCs in lung transplant patients are not derived from bone marrow, but rather that they reside - sometimes for many years - in the lungs, and that the cells have the capacity to differentiate into multiple connective tissue cell types.
One of the most telling findings was that, in cases where the transplant donor and recipient were not of the same sex, nearly all the MSCs, about 97 percent, originated in the donor, indicating that they were present in the tissue since the time of transplantation.
Tracy Davis, News staff reporter
Monday, March 12, 2007
A good Clinic
Today was a good clinic day: PFTs at 54%! (much better than the 40% they were last time!). Weight good, NiOx good (like an 8) and the DLCO was 38%, which was up 8 points from last time. So all is happy. I will go back next week to be checked again.
The only thing is my vanco level was high so we're going to an 18 hr. schedule for a bit. This creates some work problems. Oh well we'll just have to figure out something, but at least I can take a real bath tomorrow since we have to change the port anyway.
Also I am going to Riverside to have my hearing aids re-programmed on Thursday, thank God! So maybe everyone will stop sounding like Charlie Brown's teacher!!
The only thing is my vanco level was high so we're going to an 18 hr. schedule for a bit. This creates some work problems. Oh well we'll just have to figure out something, but at least I can take a real bath tomorrow since we have to change the port anyway.
Also I am going to Riverside to have my hearing aids re-programmed on Thursday, thank God! So maybe everyone will stop sounding like Charlie Brown's teacher!!
I am smarter than a 5th grader!!
From that new Jeff Foxworthy show (h/t: Number 1 Happy St. )
ANSWERS:
1) Andrew Johnson during Reconstruction
2) October
3) The Mayflower
4) No they don't even live in the same place; Polar Bears at the North Pole, Penguins at the South. If you've seen Happy Feet you know penguins have other things to worry about (like seals).
5) No idea. I hate math.
6) Rapid Eye Movement. It's when you're dreaming.
Here are last night's questions:
- Who was the first President of the U.S. to be impeached?
- What month does Columbus Day fall?
- What's the name of the ship that the Pilgrims used to sail to America?
- Do polar bears eat penguins?
- If the area of a triangle is 16 sq ft and the base is 8 ft, how many ft is the height?
- What does R.E.M. stand for?
ANSWERS:
1) Andrew Johnson during Reconstruction
2) October
3) The Mayflower
4) No they don't even live in the same place; Polar Bears at the North Pole, Penguins at the South. If you've seen Happy Feet you know penguins have other things to worry about (like seals).
5) No idea. I hate math.
6) Rapid Eye Movement. It's when you're dreaming.
A good idea for donation?
From the Rocky Mountain Times (Denver):
The death last month of Rep. Charlie Norwood, R-Ga., may serve as a blessing for some of the estimated 70,000 kidney patients whose lives depend on receiving transplanted organs.
Norwood, who succumbed to lung cancer, was the lead sponsor of H.R. 710, a bill that will let living organ donors engage in "paired exchanges of human kidneys" without fear of prosecution.
The congressman, who waited six years for a lung transplant after his initial diagnosis in 1998, championed the bill in his final months. In his honor, H.R. 710 passed the House 422-0 Wednesday and it is expected to quickly move through the Senate.
As The Associated Press explains, "Paired donations allow a patient with a willing but biologically incompatible donor - such as a friend or family member - to match up with a similarly incompatible pair so both patients can get transplants." The United Network for Organ Sharing is but one organization that maintains databases of donors and transplant candidates.
By formally facilitating paired donations, the waiting list for kidneys could immediately shrink by 1,000 per year. This change alone could increase transplants by 14 percent, according to one study.
Paired donation is legal, but a number of hospitals have refused to participate. They've operated under the misguided notion (promoted by some ethicists) that donation should be an anonymous process, and that donors that find recipients and jump to the head of the line have received "valuable consideration," which is illegal. So the bill simply states that shared donation does not involve "valuable consideration" for an organ transplant.
The current interpretation literally is a killer: 60 percent of those on the waiting list at any time will die before they can find a recipient. It's also quite costly, as over time dialysis is much more expensive than a transplant. The Congressional Budget Office estimated that the bill would save taxpayers $470 million in spending on public health programs over the next 10 years.
Meantime, legislation is moving forward at the state Capitol that would simplify organ donation for Colorado residents at death.
House Bill 1266 would align state law with guidelines established by national transplant organizations so that, for example, people who want to make their organs available for transplant can link up with specific charities. It would also let those who do not wish to be donors more clearly make their intentions known.
These bills, federal and state, meld compassion with common sense. Both should quickly become law. Such personal acts of generosity should not be delayed by red tape or shrouded in legal ambiguity.
Sunday, March 11, 2007
Spring! Spring! Spring!
Wow it's like 60 degrees here, and if anything can lift a girl's mood, that is it. :)
I went back to work for the first time (again...) on Friday. Since we're going to be busy busy this week I thought it would be a good idea to hit the desk on Friday, when we're slow, and clear as much chaos as possible, including the 100+ emails in my inbox. So now I feel ready to go for this week.
Appointment with Dr. A tomorrow at 7:30, as usual. I'll let you know how it goes but I certainly hope things go well. I am not getting up at 5:00 for nothing I hope.
Funny story: last night my friends and I went out to celebrate Branden and Andrea's birthdays (they're a day apart). Tiff came over around 4:30 and we were going to leave around 6:30. I had started the vanco IV early so that it would be done by the time we left, but it wasn't. It finished sometime on Main St. So I had the saline and heparin flushes with me and as Tiff was navigating the roads, I was disconnecting the ball and flushing the port. I had forgotten to bring a bag for the stuff, though, so I just left it on the seat.
Tiff locks the car and looks at me. "You know, if anyone looks in my car, they're going to think..."
I laughed. "Yeah, I should've brought a bag."
Such is life, eh?
Thursday, March 08, 2007
Bookshelf: Nineteen Minutes
Just finished Jodi Picoult's new book, Nineteen Minutes , about a high school shooting in New Hampshire. Alex Cormier is the local judge whose daughter, Josie, is one of the injured students; however, Alex is due to have the case appear on her docket. Additionally, Josie and the shooter, Peter Houghton, used to be friends, until peer pressure and the desire to be liked forced them apart.
I found it to be a good read, not as good as My Sister's Keeper , which is my favorite of all her books, but it's up there. The timeline goes back and forth from the present day to 17 years previous, when Peter and Josie's mothers (Alex and Lacy) first met. Two characters from previous Picoult books, Det. Patrick DuCharme ( Perfect Match ) and Jordan McAfee ( The Pact ) also show up in this book. I can't talk too much about the plot because I don't want to give too much away, but if you're interested in finding out more you can visit the author's website here.
Not a fast read, there's a lot of material to digest, and the ending is pretty cool. Totally blew me away. Overall one of her more enjoyable installments.
I found it to be a good read, not as good as My Sister's Keeper , which is my favorite of all her books, but it's up there. The timeline goes back and forth from the present day to 17 years previous, when Peter and Josie's mothers (Alex and Lacy) first met. Two characters from previous Picoult books, Det. Patrick DuCharme ( Perfect Match ) and Jordan McAfee ( The Pact ) also show up in this book. I can't talk too much about the plot because I don't want to give too much away, but if you're interested in finding out more you can visit the author's website here.
Not a fast read, there's a lot of material to digest, and the ending is pretty cool. Totally blew me away. Overall one of her more enjoyable installments.
We're back!
Well OK, I feel like I'm back. I've been sleeping, eating, doing all that good stuff. I even went to choir last night (although my hearing aids--or "listening devices"--need a serious update after the amakacin did a number on my ears). I am feeling really good which is such a nice thing after three months of blah!!!
Going back to work tomorrow--huzzah! Who thought I'd be excited about work?? And Tiff and Andrea come home from IU this weekend for Spring Break so double huzzah. :) Branden's birthday dinner tomorrow night, too! So all this fun and excitement. Cannot wait. Will have to find a cake for Branden, though....hmmm. This could prove challenging.
Going back to the apt. tonight!
Going back to work tomorrow--huzzah! Who thought I'd be excited about work?? And Tiff and Andrea come home from IU this weekend for Spring Break so double huzzah. :) Branden's birthday dinner tomorrow night, too! So all this fun and excitement. Cannot wait. Will have to find a cake for Branden, though....hmmm. This could prove challenging.
Going back to the apt. tonight!
Tuesday, March 06, 2007
Home
Finally home! Dad and I got here around 6:30 and then mom, dad, Bryan and I went to dinner at Longhorn. I also got to go to B&N afterwards (Aunt Patty sent me a gift card!) and got Nineteen Minutes, the Bob Woodward book, and An Ordinary Man, the autobiography of the man who inspired the movie Hotel Rwanda . So book reviews will be forthcoming...
So glad to be home!
So glad to be home!
Homeward Bound: The Incredible Journey!
It really is an incredible journey....
First I thought I'd get out of here at 4 b/c we do the vanco at 2. But no. We did vanco levels around 1:30 and had to wait to see if we wanted to adjust the dose. Well I guess we didn't. Then we had to wait for the dose to come up because we may do some here and then some at home. Then we decided (OK, The Powers That Be decided) to do the whole dose here. Starting at 4:10. Which means I don't get to leave for like another hour.
GRRRR.
But at least Julie came by and we went over the discharge stuff so we are cool with that. And now we're doing the vanco every 12 hours (Q12), which is easier but also a pain w/ work in the AM. So I think we're going to do a 5 and 5 schedule so I can get to work at my normal start time of 7:30. This is where showering at night is actually a benefit. And I can do the TOBI at 6:00 am while I finish the vanco infusion. So this will all work out and hopefully I can go to work on Friday! I am planning on going to the Soup Supper and Choir at church tomorrow night which should be good. I want out of here....
First I thought I'd get out of here at 4 b/c we do the vanco at 2. But no. We did vanco levels around 1:30 and had to wait to see if we wanted to adjust the dose. Well I guess we didn't. Then we had to wait for the dose to come up because we may do some here and then some at home. Then we decided (OK, The Powers That Be decided) to do the whole dose here. Starting at 4:10. Which means I don't get to leave for like another hour.
GRRRR.
But at least Julie came by and we went over the discharge stuff so we are cool with that. And now we're doing the vanco every 12 hours (Q12), which is easier but also a pain w/ work in the AM. So I think we're going to do a 5 and 5 schedule so I can get to work at my normal start time of 7:30. This is where showering at night is actually a benefit. And I can do the TOBI at 6:00 am while I finish the vanco infusion. So this will all work out and hopefully I can go to work on Friday! I am planning on going to the Soup Supper and Choir at church tomorrow night which should be good. I want out of here....
Homeward bound...
Getting out of here probably around 4 after my last (well, in-house) vanco IV infusion. I will be going home on that (it's every 12 hours-Q12- which isn't bad, but it's two hours. Which is bad. Oh well we'll figure out something...), plus TOBI aerosol and levoquin oral med. Not too bad if you think about it. Not that i wouldn't love to not have the port accessed but at least today I got to take a bath and wash the skin around the port AND MY HAIR so that's good. And I am dressed and wearing make-up; these are all large accomplishments!
All in all I feel pretty good, which is a great thing after feeling like crap for so long, as we know. I am excited to get back to real world and hit Barnes and Noble for some book purchasing since I am behind. And get Peter Pan on DVD because I just love that movie.
And happy happys to: Branden, whose 25th birthday was yesterday, and Andrea, who turns 24 today!!
All in all I feel pretty good, which is a great thing after feeling like crap for so long, as we know. I am excited to get back to real world and hit Barnes and Noble for some book purchasing since I am behind. And get Peter Pan on DVD because I just love that movie.
And happy happys to: Branden, whose 25th birthday was yesterday, and Andrea, who turns 24 today!!
Monday, March 05, 2007
Getting sprung (again)
Looks like tomorrow I will be out of here, since solid food eating and the re-introduction of some oral meds is going well. I'm supposed to come back Monday for a follow-up which means I could be back to work as soon as Tuesday. Huzzah!
Sunday, March 04, 2007
FOOD :)
I am eating a hamburger. Life is good.
Why all of the silverware was individually wrapped in plastic, I am not sure. But I have food in front of me. That is all that matters. :)
Why all of the silverware was individually wrapped in plastic, I am not sure. But I have food in front of me. That is all that matters. :)
Saturday, March 03, 2007
Real food!
OK, really not real food. Jello. Broth. Juice. And usually all the same color...well, except for the broth, which has about a 10 minute lifespan of goodness before it's just not even worth eating. Oh well. Dad and Mom were very cruel and brought in Chipotle and Panera and ate it in front of me. This, as we know, is wrong and violats one of Emily's Hospital Rules. But oh well. Dad did try to make up for it by brining me chips that I may be able to eat tomorrow. May. We'll have to see what the numbers and Dr. A say, but if I can keep down these delectable meals then I should be able to try something actually worth eating, eh? That's what I thought. And I am so hungry. I've been planning menus for the game night party that I'm having soon and thinking about my birthday dinners (one with family, one with friends) and getting very hungry doing that. VERY hungry. So maybe I should stop. Oh well.
I am also off the constant fluids and we're going to sloooowly try to get oral meds back in the picture. Woohoo!
I am also off the constant fluids and we're going to sloooowly try to get oral meds back in the picture. Woohoo!
Did I say home?
Heh, spoke too soon. We're back!
But this time, it's round 7 or 8 or pancreatitis, which I haven't had in two years, so I guess that's a good thing-- 1) we know for sure what it is and 2) we know how to treat it. Basically I haven't eaten since Wednesday morning but tomorrow I might get to try broth and jello! Woohoo! And if that goes well then I can eat "real" (OK, low fat) food and then get out of here. Woohoo! And then I think we'll have fixed everything there is to fix around here. And I am eating Longhorn when I get out of here....shrimp, rice, bread...key lime pie.... :-D
So we'll see how the weekend goes. I will try to keep you posted.
But this time, it's round 7 or 8 or pancreatitis, which I haven't had in two years, so I guess that's a good thing-- 1) we know for sure what it is and 2) we know how to treat it. Basically I haven't eaten since Wednesday morning but tomorrow I might get to try broth and jello! Woohoo! And if that goes well then I can eat "real" (OK, low fat) food and then get out of here. Woohoo! And then I think we'll have fixed everything there is to fix around here. And I am eating Longhorn when I get out of here....shrimp, rice, bread...key lime pie.... :-D
So we'll see how the weekend goes. I will try to keep you posted.
Tuesday, February 27, 2007
We're home
OK I'm home. Why am I using the royal We? I am, most definitely, not royal. Of course yesterday had to be the latest discharge on record, since we got out at 7:00 PM, but I think one of the babies on the floor was having issues, and the kid in the room next to me was definitely having issues that involved a lot of banging and quite possibly yelling. Whatever. Just glad I wasn't in that room.
Gotta love it when doctors take away psychiatric drugs and DON'T TELL YOU. I was on celexa post-tx, because I have a tendency to get waaay too worried about things I can't control and generally drive myself insane. Before the celexa I was on something else since I was about 16. So that's like almost 10 years of solid meds and then they're gone b/c they interact with the Mighty Antibiotic I'm on right now. Which I understand, but dude, tell me and give me something else! No wonder all the nurses thought all the chest pain I was having was anxiety-related. Sheesh. Here's a tip: don't just stuff a girl with adivan, give her something else, please. Thank you.
My stomach, in general, hates me. The idea that it and I have to co-exist has never really hit home with it. So I just try to do whatever it's currently telling me to do. Which isn't always a good idea. Oh well.
No work, absolutely, by order of High Command, until at least next week. Taht's OK with me. March, Spring, and Branden's 25th birthday!! Yay!!
Hopefully I'll be feeling OK by the weekend so I can maybe go to the opera. We'll see. But glad to be home.
Gotta love it when doctors take away psychiatric drugs and DON'T TELL YOU. I was on celexa post-tx, because I have a tendency to get waaay too worried about things I can't control and generally drive myself insane. Before the celexa I was on something else since I was about 16. So that's like almost 10 years of solid meds and then they're gone b/c they interact with the Mighty Antibiotic I'm on right now. Which I understand, but dude, tell me and give me something else! No wonder all the nurses thought all the chest pain I was having was anxiety-related. Sheesh. Here's a tip: don't just stuff a girl with adivan, give her something else, please. Thank you.
My stomach, in general, hates me. The idea that it and I have to co-exist has never really hit home with it. So I just try to do whatever it's currently telling me to do. Which isn't always a good idea. Oh well.
No work, absolutely, by order of High Command, until at least next week. Taht's OK with me. March, Spring, and Branden's 25th birthday!! Yay!!
Hopefully I'll be feeling OK by the weekend so I can maybe go to the opera. We'll see. But glad to be home.
Monday, February 26, 2007
Day 6
Still here, nothing new. EKG, blood draws, breakfast, RTs coming down to pound on me. :) No one of any importance has been here at all. Oh well.
Sunday, February 25, 2007
hear ye, hear ye!
Got this from the Central Ohio CF Foundation...you people should do this if you live ihn the Columbus area. :)
Please join us in celebrating the Grand Opening!
BJ’s Restaurant & Brewhouse
1414 Polaris Parkway
Columbus, OH 43240
(Polaris Fashion Place)
You and three guests are invited to a complimentary dining experience as BJ’s puts their final touches on weeks of thorough training. All food is complimentary. Donations collected during the opening will directly benefit the Cystic Fibrosis Foundation.
Space is limited, so please choose the day and time most convenient for you and call today for a reservation.
(614) 885-1800
March 6th and 7th:
11AM - 1PM or 5:30PM - 7:30PM
March 8th, 9th and 11th
11AM - 8PM
Thank you and we look forward to seeing you!
Please join us in celebrating the Grand Opening!
BJ’s Restaurant & Brewhouse
1414 Polaris Parkway
Columbus, OH 43240
(Polaris Fashion Place)
You and three guests are invited to a complimentary dining experience as BJ’s puts their final touches on weeks of thorough training. All food is complimentary. Donations collected during the opening will directly benefit the Cystic Fibrosis Foundation.
Space is limited, so please choose the day and time most convenient for you and call today for a reservation.
(614) 885-1800
March 6th and 7th:
11AM - 1PM or 5:30PM - 7:30PM
March 8th, 9th and 11th
11AM - 8PM
Thank you and we look forward to seeing you!
Days 4-5: The weekend
(Ahhh! I had this written and then it got erased!)
OK, so Saturday, not so much. Actually the 'not so much' began on Friday night. I was having really awful chest pain and, since tylenol was now the only pain med on my chart, we had to call RTs and docs and get the nurses all involved, which takes forever. So eventually around midnight (this began around 9:45), I was given Adavan, which I took. It's a nice drug. :) But it doesn't relieve pain, it just knocks you out. So when I woke up Saturday, not only was I still sore, but I had slept a good 9-10 hours, so I was even more sore from having slept that way, if that makes sense. I also had Dr. W flush/drain/sample sinus tissue/fluid/stuff that morning and that was lovely. Not his fault (I love Dr. W); it's just not a very lovely procedure.
Dr. M (also know as God to early readers of this blog) was the POC (Pulmologist on call) for the weekend so she and Dr. A were powwowing to see what was going on, because I'm weird. And my body does weird things and likes to hate me.
Sunday (aka today) has been a lot better. My parents were here, which was good (they were here yesterday too and were very helpful in the "let's talk to doctors and get the real deal and get real stuff happening! department), and Sundays here are generally tombs. There's no one around unless you're like Code Blue or something. Mom helped me wash my hair, which was great because it really needed it. As we know I am Queen of the Bath Products and not being able to have them here is driving me crazy. As is not being able to bathe properly. But since I'm not on IV meds (yay!) I'm only accessed for blood draws, so as soon as I'm outta here, we are going to the bath goodies. :)
Ah, yeah, getting out of here...Dr. A said this morning that if I'm good for 24-48 hours I can go home but absolutely no work for a week. I can deal with that. I don't want to be back here any time soon, either. So Tuesday is a possible ETD. We'll see. I'll let you know. I'll be living with the parents for that period, which is helpful for me. I might break out to see The Marriage of Figaro with some kids over the weekend, but hey, it's culture! Everyone knows the Marriage of Figaro, even if they don't think they do. Trust me. :) And I've sang "Voi, Che Sapete" enough that I could hear it by a professional. The best part about Opera? Subtitles, baby, subtitles. :)
One nice thing about this admission has been the use of 4AE/5T nurses for the night shift if they're running short down here or just need extra hands. I miss those guys, because you see them, they take care of you for how long (12 years in my case) and then you don't see them after tx because you're on a different floor. That is a bummer. It's great to see them again. And Rita, known to readers of this site as the BNE (Best Nurse Ever) has sniffed out my existence and visited yesterday and today. She is a riot--I've got to get her to teach me how to quilt.
All right, Oscars on in what, 1/2 hour? Something like that. So I better find the channel. I hope Little Miss Sunshine Wins the Big Prize because I loved that movie. There are some other good ones up, too, like the Queen, but LMS was just so funny. How can you resist that?
OK, so Saturday, not so much. Actually the 'not so much' began on Friday night. I was having really awful chest pain and, since tylenol was now the only pain med on my chart, we had to call RTs and docs and get the nurses all involved, which takes forever. So eventually around midnight (this began around 9:45), I was given Adavan, which I took. It's a nice drug. :) But it doesn't relieve pain, it just knocks you out. So when I woke up Saturday, not only was I still sore, but I had slept a good 9-10 hours, so I was even more sore from having slept that way, if that makes sense. I also had Dr. W flush/drain/sample sinus tissue/fluid/stuff that morning and that was lovely. Not his fault (I love Dr. W); it's just not a very lovely procedure.
Dr. M (also know as God to early readers of this blog) was the POC (Pulmologist on call) for the weekend so she and Dr. A were powwowing to see what was going on, because I'm weird. And my body does weird things and likes to hate me.
Sunday (aka today) has been a lot better. My parents were here, which was good (they were here yesterday too and were very helpful in the "let's talk to doctors and get the real deal and get real stuff happening! department), and Sundays here are generally tombs. There's no one around unless you're like Code Blue or something. Mom helped me wash my hair, which was great because it really needed it. As we know I am Queen of the Bath Products and not being able to have them here is driving me crazy. As is not being able to bathe properly. But since I'm not on IV meds (yay!) I'm only accessed for blood draws, so as soon as I'm outta here, we are going to the bath goodies. :)
Ah, yeah, getting out of here...Dr. A said this morning that if I'm good for 24-48 hours I can go home but absolutely no work for a week. I can deal with that. I don't want to be back here any time soon, either. So Tuesday is a possible ETD. We'll see. I'll let you know. I'll be living with the parents for that period, which is helpful for me. I might break out to see The Marriage of Figaro with some kids over the weekend, but hey, it's culture! Everyone knows the Marriage of Figaro, even if they don't think they do. Trust me. :) And I've sang "Voi, Che Sapete" enough that I could hear it by a professional. The best part about Opera? Subtitles, baby, subtitles. :)
One nice thing about this admission has been the use of 4AE/5T nurses for the night shift if they're running short down here or just need extra hands. I miss those guys, because you see them, they take care of you for how long (12 years in my case) and then you don't see them after tx because you're on a different floor. That is a bummer. It's great to see them again. And Rita, known to readers of this site as the BNE (Best Nurse Ever) has sniffed out my existence and visited yesterday and today. She is a riot--I've got to get her to teach me how to quilt.
All right, Oscars on in what, 1/2 hour? Something like that. So I better find the channel. I hope Little Miss Sunshine Wins the Big Prize because I loved that movie. There are some other good ones up, too, like the Queen, but LMS was just so funny. How can you resist that?
Friday, February 23, 2007
Starting on Day 3
Whew things have been exhausting around here. Sometimes I feel like we're all running around like chickens w. our heads cut off.
I've seen lots of docs today but nothing definitive or new. Dr. A said I looked better, and I guess I'll just take that at face value, since I can never tell how I look. I guess since I'm always looking at myself that makes sense. :) I've had labs, CXR, and an RT's come in to bang on me, and now I'm getting a lovely 3 hour drug infusion that I'm not quite sure why it takes three hours to do. Actually, it appears like no one is sure why it takes three hours to do. So I don't know.
Dr. W is supposed to come tomorrow and drain my sinuses. That's good. I got through last night with only two tylenol so that is also good. I'm pretty sure I will be here all weekend, though, and who knows when I'll get back to work. Right now I don't believe anyone is talking discharge and if they are I need to talk them out of it, because when I leave here I don't want to be back in two weeks. I want to leave here with a game plan and not come back for a good long while. This is just getting really old.
Kathy was just here which is always helpful when you are in-house. My parents are also here but I sent them on a beverage quest since I'm ridiculously thirsty (it's so dry in hospitals)and am drinking things like a madwoman. You know, Cherry Coke Zero is actually very good, which shouldn't surprise me because Coke Zero is good. But I digress. At least while I'm here I can catch up on my novels, blogging, blog reading, and movies. And my parents'll buy me fun things. :)
Oh, and a product plug: LL Bean fitness fleece is the best thing ever. I brought the jacket with me and it is so light but warm, it is great. I can wear it for procedures, sleep in it, whatever. It's the perfect weight. It also doesn't wrinkle so it looks good and makes me feel human. :) They come in lots of pretty colors which you can see here.
OK that's today's commercial. :)
I've seen lots of docs today but nothing definitive or new. Dr. A said I looked better, and I guess I'll just take that at face value, since I can never tell how I look. I guess since I'm always looking at myself that makes sense. :) I've had labs, CXR, and an RT's come in to bang on me, and now I'm getting a lovely 3 hour drug infusion that I'm not quite sure why it takes three hours to do. Actually, it appears like no one is sure why it takes three hours to do. So I don't know.
Dr. W is supposed to come tomorrow and drain my sinuses. That's good. I got through last night with only two tylenol so that is also good. I'm pretty sure I will be here all weekend, though, and who knows when I'll get back to work. Right now I don't believe anyone is talking discharge and if they are I need to talk them out of it, because when I leave here I don't want to be back in two weeks. I want to leave here with a game plan and not come back for a good long while. This is just getting really old.
Kathy was just here which is always helpful when you are in-house. My parents are also here but I sent them on a beverage quest since I'm ridiculously thirsty (it's so dry in hospitals)and am drinking things like a madwoman. You know, Cherry Coke Zero is actually very good, which shouldn't surprise me because Coke Zero is good. But I digress. At least while I'm here I can catch up on my novels, blogging, blog reading, and movies. And my parents'll buy me fun things. :)
Oh, and a product plug: LL Bean fitness fleece is the best thing ever. I brought the jacket with me and it is so light but warm, it is great. I can wear it for procedures, sleep in it, whatever. It's the perfect weight. It also doesn't wrinkle so it looks good and makes me feel human. :) They come in lots of pretty colors which you can see here.
OK that's today's commercial. :)
Thursday, February 22, 2007
They change fast!!
Well I did have to get some of the fluid drained to send to the lab, but it wasn't nearly as bad as I thought. The worst part was the novocain to numb the site and even that wasn't bad. It was...interesting-looking, kind of bloody. I have no idea how it got there, but at least it's giving us a reason for my pain! I can just say,"hey,look at the sample! I'm not making it up!" :-D
Getting ready to watch the finale of the 3-part series of Grey's...dude, if they kill off Meredith, I will be tempted to kill someone! (Just kidding, but I will be upset, like many other kids, I guess)Meredith can make it! We can't leave McDreamy all alone! And how is she supposed to solve all her parental issues if she's dead ?
All right that was totally off topic. :) Oh well.
Getting ready to watch the finale of the 3-part series of Grey's...dude, if they kill off Meredith, I will be tempted to kill someone! (Just kidding, but I will be upset, like many other kids, I guess)Meredith can make it! We can't leave McDreamy all alone! And how is she supposed to solve all her parental issues if she's dead ?
All right that was totally off topic. :) Oh well.
The times they are a-changin'
So to update:
--Had a talk w/ Kathy this afternoon, very good. Always is.
--Dr. A and Julie came in and talked about what to do next.My O2 sats are still pretty low (as I write this they're 94%), so he doesn't want to send me home w/ O2. I heartily agree! So it looks like I'll be here until at least Monday, because on Saturday Dr. W (my ENT) can come in and drain my sinuses, since the CT that was taken this morning showed they're a wee bit congested. That will help because nasty bugs like to incubate up there and if you don't flush them out every once in awhile they can drain down (like when you get a cold) and go into the lungs where they cause lots of problems. So we're dealing with that.
--There was supposedly fluid on the CXR, but when Mom and I went down to Ultrasound, the techs couldn't find any! So maybe no big scary needles. Huzzah! :)
--Dr. A also wants chest PT (I thought we were sooo done with this) 4x/day to help loosen up the secretions that are hanging out in my lungs. He also talked about me starting to use the Flutter Valve again. The Flutter is basically a device that looks like an overgrown playground whistle. Inside is a small cone which holds a metal ball. You blow into it and the ball sends vibrations down into your chest to loosen mucus. Now I've never really liked it because 1) I never got any results with it and 2) you really have to think when you use it, like what is the proper technique and all that. If you don't, it doesn't work. That's why I liked the Vest, because all you had to was strap in and turn in on. But I digress. I'm not sure if I will do the Flutter at home, or not. I suppose I'll find out when I'm discharged.
I am waiting on dinner (the food here really isn't bad!)and for my parents to come back from theirs (in the lovely cafeteia, oh the joy!). And two packages came for me today! One from Nordstrom and one from Crane's stationery, which has part of Branden's birthday gift. :) So at least there are some fun things going on with all this drama.
--Had a talk w/ Kathy this afternoon, very good. Always is.
--Dr. A and Julie came in and talked about what to do next.My O2 sats are still pretty low (as I write this they're 94%), so he doesn't want to send me home w/ O2. I heartily agree! So it looks like I'll be here until at least Monday, because on Saturday Dr. W (my ENT) can come in and drain my sinuses, since the CT that was taken this morning showed they're a wee bit congested. That will help because nasty bugs like to incubate up there and if you don't flush them out every once in awhile they can drain down (like when you get a cold) and go into the lungs where they cause lots of problems. So we're dealing with that.
--There was supposedly fluid on the CXR, but when Mom and I went down to Ultrasound, the techs couldn't find any! So maybe no big scary needles. Huzzah! :)
--Dr. A also wants chest PT (I thought we were sooo done with this) 4x/day to help loosen up the secretions that are hanging out in my lungs. He also talked about me starting to use the Flutter Valve again. The Flutter is basically a device that looks like an overgrown playground whistle. Inside is a small cone which holds a metal ball. You blow into it and the ball sends vibrations down into your chest to loosen mucus. Now I've never really liked it because 1) I never got any results with it and 2) you really have to think when you use it, like what is the proper technique and all that. If you don't, it doesn't work. That's why I liked the Vest, because all you had to was strap in and turn in on. But I digress. I'm not sure if I will do the Flutter at home, or not. I suppose I'll find out when I'm discharged.
I am waiting on dinner (the food here really isn't bad!)and for my parents to come back from theirs (in the lovely cafeteia, oh the joy!). And two packages came for me today! One from Nordstrom and one from Crane's stationery, which has part of Branden's birthday gift. :) So at least there are some fun things going on with all this drama.
The song that never ends...
OK, or the medical drama that never ends...
Go to clinic on Tuesday (all dressed up in a new suit, looking good :-)). PFTs down again this time to 45%. DLCO down. Box is down. My inflammation score (the NiOx), however, is down, which is a good thing.
So I see Julie and Dr.A and (surprise!), we do yet another bronch. Which means I miss the second day of session. Grrrr.
So we do the bronch. Apparently there's a lot of stuff on the left side, so it was a big wash-out. I was taken up to C5, where, instead of my usual practice of just going home, decided to stay the night.
Good thing I did. I have never had such a bad night after a bronch. I couldn't keep anything down, so I was given IV phenergan (gift of the gods), and I was having intense, severe pain all along my left lung, with it concentrated around the middle of that side. Normally after a bronch I'm sore, but this was sharp, impossible-to-ignore pain. For that, we did dilaudid and percocet (not together!), with the percocet finally winning out.
I was here all day yesterday, on O2 because my sats were low, and all sorts of other monitoring gizmos. We switched to oral phenergan and percocet (They don't make you as loopy) and did some new CXRs.
Well today we found out that it's pneumonia--back again! So we dropped the amakacin, are still doing the meropenum, and don't know what else yet. I'm due to go down to Ultrasound soon because there is also fluid in my left lung. So they're going to look at it, try to determine what it is, and then "tap" it with what I'm assuming is a big, scary needle. Emily don't like big, scary needles. So we'll see how that goes.
For now I am on O2 (I think about 2 L), and I've been disconnected from the telemetry/monitoring stuff, so I just get regular vitals taken, usually at the beginning and end of every shift change.
Sleep has been somewhat elusive, the first night because of the pain and last night...well I don't have any ideas about last night. But whatever.
I'm also mad because the amakacin did a number on my hearing so now I'm even more deaf. Which just thrills me. But I ddi see Dr. W today and he's going to flush my sinuses here on Saturday,which will help the infection situation by getting rid of bad mucus and germs that like to hang around up there. He's also going to talk to Dr.A about re-scheduling my surgery ASAP.
I am so frustrated and tired of dealing with this bugabear.I certainly hope this next course of whatever dos its job, and I won't be living at Children's. I want to get back to my 'normal' life ASAP.
Will keep you posted (so long as I can guard this PC..ha ha)
Go to clinic on Tuesday (all dressed up in a new suit, looking good :-)). PFTs down again this time to 45%. DLCO down. Box is down. My inflammation score (the NiOx), however, is down, which is a good thing.
So I see Julie and Dr.A and (surprise!), we do yet another bronch. Which means I miss the second day of session. Grrrr.
So we do the bronch. Apparently there's a lot of stuff on the left side, so it was a big wash-out. I was taken up to C5, where, instead of my usual practice of just going home, decided to stay the night.
Good thing I did. I have never had such a bad night after a bronch. I couldn't keep anything down, so I was given IV phenergan (gift of the gods), and I was having intense, severe pain all along my left lung, with it concentrated around the middle of that side. Normally after a bronch I'm sore, but this was sharp, impossible-to-ignore pain. For that, we did dilaudid and percocet (not together!), with the percocet finally winning out.
I was here all day yesterday, on O2 because my sats were low, and all sorts of other monitoring gizmos. We switched to oral phenergan and percocet (They don't make you as loopy) and did some new CXRs.
Well today we found out that it's pneumonia--back again! So we dropped the amakacin, are still doing the meropenum, and don't know what else yet. I'm due to go down to Ultrasound soon because there is also fluid in my left lung. So they're going to look at it, try to determine what it is, and then "tap" it with what I'm assuming is a big, scary needle. Emily don't like big, scary needles. So we'll see how that goes.
For now I am on O2 (I think about 2 L), and I've been disconnected from the telemetry/monitoring stuff, so I just get regular vitals taken, usually at the beginning and end of every shift change.
Sleep has been somewhat elusive, the first night because of the pain and last night...well I don't have any ideas about last night. But whatever.
I'm also mad because the amakacin did a number on my hearing so now I'm even more deaf. Which just thrills me. But I ddi see Dr. W today and he's going to flush my sinuses here on Saturday,which will help the infection situation by getting rid of bad mucus and germs that like to hang around up there. He's also going to talk to Dr.A about re-scheduling my surgery ASAP.
I am so frustrated and tired of dealing with this bugabear.I certainly hope this next course of whatever dos its job, and I won't be living at Children's. I want to get back to my 'normal' life ASAP.
Will keep you posted (so long as I can guard this PC..ha ha)
Monday, February 19, 2007
Update
I have just finished my (hopefully!) last IV treatment! Woohoo!
Tomorrow I see Dr. A @ 7:30 and then Dr. H, my endocrinologist, after that. Woowee.
And we have our first session of the year at work tomorrow. Let the good times roll!
I'll let you know how it goes...
Tomorrow I see Dr. A @ 7:30 and then Dr. H, my endocrinologist, after that. Woowee.
And we have our first session of the year at work tomorrow. Let the good times roll!
I'll let you know how it goes...
Sunday, February 18, 2007
There is hope!
32 degrees tomorrow.
FORTY-TWO (!) on Tuesday!!
And my new bookshelf comes tomorrow and I'm getting a new suit.
So maybe things are getting better. :)
Friday, February 16, 2007
Winter blues
Have hit me full-force.
Yes, we're (probably) stopping the IV course on Tuesday, when I go in to see both High Command and Dr. Hardin, my endocrinologist. But one never knows. Yesterday I just felt like absolute crap, and today didn't help either. Of course, at this point, I'm sure a lot of it is psychosomatic, and, as we know, I don't readily say that. I can tell the difference.It's just so cold, and everything takes so much effort...even getting to your car, to make sure you don't fall. Then warming it up. De-icing it. Making sure you can see out the windows, etc. Now this is a pain for normal people, it is especially a pain if only half of your lungs are working. I have been good and met my (very, very modest) goal of 2 yoga sessions and 1 cardio this week, but it was a real cardio. I'm just trying to get slowly back into things. It doesn't help that in order to get to the gym I have to cross the Alaskan tundra. My aerobics videos aren't recommended right now, either, since w/ my HR being what it is, slow and steady increases, like what one gets on a treadmill, are the best best. I guess I should just keep my Pumas in my car so that when I'm at my parents I can use the machine there. At least I did something. Work is also driving me mad, and I just want this IV course to be over.
The ears are also not helping. it seems like they've gotten worse , if at all possible, and now hearing some people is almost impossible. I need to get that surgery scheduled STAT, but now they're not scheduling until April or May, so that's a bugger, because that's when we're busy at work. So I am going to have to powwow with Dr. A on Tuesday and say, "look, we MUST get this done because I am going nuts." I really am, and it is not good. Especially since I had a little "traffic incident" with Lilo and I've been on the phone with insurance people, who I don't know, whose lips I obviously cannot read and have devil of a time understanding. Fortunately I've managed to get all the vital info. without majorly screwing up anything (yet), except my stress level. With the blizzard or whatever this week I was driving a car I knew nothing about. Let me tell you how much fun that was. Anyway, I should have my car back in a week. But things are just so crazy right now all I want to do is medicate and sleep...but that's not an option.
Thank God for the long weekend, and Doughnut Sunday this week. I am going to try to get as much done as possible before the next snow hits, because I'm kind of running low on food. At least the car is gassed up and ready to go. It takes a rather surprising amount of torque to get over some of these snowbanks. My next car is so a CRV.
Any happy thoughts are greatly appreciated. David did send me roses for valentine's Day and they are beautiful on my table. They are a happy thought amidst the snow, ice and work agonistes . As is my new Simon and Garfunkle CD :)
Yes, we're (probably) stopping the IV course on Tuesday, when I go in to see both High Command and Dr. Hardin, my endocrinologist. But one never knows. Yesterday I just felt like absolute crap, and today didn't help either. Of course, at this point, I'm sure a lot of it is psychosomatic, and, as we know, I don't readily say that. I can tell the difference.It's just so cold, and everything takes so much effort...even getting to your car, to make sure you don't fall. Then warming it up. De-icing it. Making sure you can see out the windows, etc. Now this is a pain for normal people, it is especially a pain if only half of your lungs are working. I have been good and met my (very, very modest) goal of 2 yoga sessions and 1 cardio this week, but it was a real cardio. I'm just trying to get slowly back into things. It doesn't help that in order to get to the gym I have to cross the Alaskan tundra. My aerobics videos aren't recommended right now, either, since w/ my HR being what it is, slow and steady increases, like what one gets on a treadmill, are the best best. I guess I should just keep my Pumas in my car so that when I'm at my parents I can use the machine there. At least I did something. Work is also driving me mad, and I just want this IV course to be over.
The ears are also not helping. it seems like they've gotten worse , if at all possible, and now hearing some people is almost impossible. I need to get that surgery scheduled STAT, but now they're not scheduling until April or May, so that's a bugger, because that's when we're busy at work. So I am going to have to powwow with Dr. A on Tuesday and say, "look, we MUST get this done because I am going nuts." I really am, and it is not good. Especially since I had a little "traffic incident" with Lilo and I've been on the phone with insurance people, who I don't know, whose lips I obviously cannot read and have devil of a time understanding. Fortunately I've managed to get all the vital info. without majorly screwing up anything (yet), except my stress level. With the blizzard or whatever this week I was driving a car I knew nothing about. Let me tell you how much fun that was. Anyway, I should have my car back in a week. But things are just so crazy right now all I want to do is medicate and sleep...but that's not an option.
Thank God for the long weekend, and Doughnut Sunday this week. I am going to try to get as much done as possible before the next snow hits, because I'm kind of running low on food. At least the car is gassed up and ready to go. It takes a rather surprising amount of torque to get over some of these snowbanks. My next car is so a CRV.
Any happy thoughts are greatly appreciated. David did send me roses for valentine's Day and they are beautiful on my table. They are a happy thought amidst the snow, ice and work agonistes . As is my new Simon and Garfunkle CD :)
Wednesday, February 14, 2007
A discovery
I like bubbles.
OK, so maybe that's not really a discovery, per se. At least not one worth posting about. But bubbles do figure into it.
One of the things that I have bemoaned about being accessed is the inability to shower/bathe properly. You have to wash your body, and then your hair, and the hair, as we know, is interesting. That usually takes up all the time (and the complaining/commentary).
But one thing I've noticed during this course is that, since I have to wash my body separately and cannot get my upper chest wet, I can use bubble bath. I have a ton of it, since I love it, and normally I never get to use it. I mean, who has time for a real bubble bath these days? On Saturday mornings I use all my scrubs and fun gels and everything, but I don't take a bubble bath since the bubbles will mess up my hair that I just spent five minutes deep-conditioning.
So the port has actually offered me the ability to use the yummy-smelling bubbles and take bubble baths. I've taken one every night and it is great. It gives me time to read, and just relax, since really all I have to do is just sit there.
Very odd what sort of blessings one will find when doing IV meds. Why did it take me so long to figure this out?
OK, so maybe that's not really a discovery, per se. At least not one worth posting about. But bubbles do figure into it.
One of the things that I have bemoaned about being accessed is the inability to shower/bathe properly. You have to wash your body, and then your hair, and the hair, as we know, is interesting. That usually takes up all the time (and the complaining/commentary).
But one thing I've noticed during this course is that, since I have to wash my body separately and cannot get my upper chest wet, I can use bubble bath. I have a ton of it, since I love it, and normally I never get to use it. I mean, who has time for a real bubble bath these days? On Saturday mornings I use all my scrubs and fun gels and everything, but I don't take a bubble bath since the bubbles will mess up my hair that I just spent five minutes deep-conditioning.
So the port has actually offered me the ability to use the yummy-smelling bubbles and take bubble baths. I've taken one every night and it is great. It gives me time to read, and just relax, since really all I have to do is just sit there.
Very odd what sort of blessings one will find when doing IV meds. Why did it take me so long to figure this out?
Monday, February 12, 2007
However...
I have really started working out again! On Saturday David taught me the basic Swing dance pattern and w epractice for about 30-40 minutes. Whew! I used muscles I didn't even know I had . And I have to keep practicing here or I'll forget, but it was good fun.
Today I actually...wait for it... went on the treadmill . For more than 5 minutes! Wooohoo! I didn't go very fast b/c I was monitoring my HR pretty closely, but it was still good! And I did Yoga last night. So I am really coming back with the whole working out thing, which I think will help me feel better faster. I just don't want to overdo, so I will carefully monitor the stats and everything.
Today I actually...wait for it... went on the treadmill . For more than 5 minutes! Wooohoo! I didn't go very fast b/c I was monitoring my HR pretty closely, but it was still good! And I did Yoga last night. So I am really coming back with the whole working out thing, which I think will help me feel better faster. I just don't want to overdo, so I will carefully monitor the stats and everything.
Strange things, mystifying...
(points if you know what the title is quoting!)
That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.
So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...
That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.
So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...
Sunday, February 11, 2007
kidney allocation debate
Recently, there have been changes to the way kidneys are going to be allocated. More precisely, the way people will be listed will be changed. They are going to change it from "length of time" on the list (i.e., the longer you've been waiting, the higher up you are) to how well you'll survive after the transplant.
Now I am all about this. Right before my transplant the lung allocation system was changed to be this way. That way the "sickest" patients could be priority. I was #1 on the AB+ list.
Transplant allocation is a fine line; you have to be sick enough to need one, but healthy/strong enough to survive the actual surgery and rehab. I had to go through pulmonary rehab before my transplant so that I could survive the rigorous after effects of a major surgery. Some people aren't healthy enough or didn't take good enough care of themselves before to qualify. A host of psychological, physical and social factors go into deciding who makes a good transplant candidate, because there are so few organs to go around. With every transplant, you want to make sure that you are giving to a person who will: 1) survive the operation 2) follow the very strict regimen post transplant 3) have a support system in place to help you follow this regime 4) and make sure that you can psychologically handle all the changes that will happen post transplant. Some people can't. Some people, believe it or not, have made their entire lives about being sick. It has defined them. They can't do anything else. They didn't finish high school, didn't go to college, don't have a job. Believe me, I know people like this. Or, coversly, they decided they were going to live fast since they would "die young" and have four babies by different boys, don't take care of themselves, and are on the fast track to hospice. I also know people like this. They are not good transplant candidates because they never adjusted to living a real life with their illnesses to begin with.
Some people talk about how organs sohuld go to "children or young adults". Well, OK. Or that by changing it to sickest/most likely to survive, old people won't have a chance. The thing is, medically, someone always has an edge. No one is equal. It doesn't matter how much money you have, who you are, or what you do. Medically, someone is ahead. Someone is always a better match. And in transplant medicine, you want the best match possible for the transplant to succeed. Dr. A used to talk about finding "optimal" organs for me. This is a delicate science. By putting someone who is not medically capable of handling the surgery and its after effects, you're not only putting the recipient's life in danger, but you are also, in effect, denying someone who is a better match for the organ the chance at life. You're sort of "wasting" the organ. I know that sounds callous, but it's true. 18 people die every day waiting for an organ. We need to make sure that the best candidates are getting them. Yes I can say that because I got mine. But still, it's true.
So many people are ignorant of this aspect of transplantation. They still think it's about money, or status, or prestige. The only "status" that matters is your medical status: blood type, tissue type, height, weight, and various other factors depending on the particular organ. It's not about the money. It's about the person who is medically right for the organ.
Now I am all about this. Right before my transplant the lung allocation system was changed to be this way. That way the "sickest" patients could be priority. I was #1 on the AB+ list.
Transplant allocation is a fine line; you have to be sick enough to need one, but healthy/strong enough to survive the actual surgery and rehab. I had to go through pulmonary rehab before my transplant so that I could survive the rigorous after effects of a major surgery. Some people aren't healthy enough or didn't take good enough care of themselves before to qualify. A host of psychological, physical and social factors go into deciding who makes a good transplant candidate, because there are so few organs to go around. With every transplant, you want to make sure that you are giving to a person who will: 1) survive the operation 2) follow the very strict regimen post transplant 3) have a support system in place to help you follow this regime 4) and make sure that you can psychologically handle all the changes that will happen post transplant. Some people can't. Some people, believe it or not, have made their entire lives about being sick. It has defined them. They can't do anything else. They didn't finish high school, didn't go to college, don't have a job. Believe me, I know people like this. Or, coversly, they decided they were going to live fast since they would "die young" and have four babies by different boys, don't take care of themselves, and are on the fast track to hospice. I also know people like this. They are not good transplant candidates because they never adjusted to living a real life with their illnesses to begin with.
Some people talk about how organs sohuld go to "children or young adults". Well, OK. Or that by changing it to sickest/most likely to survive, old people won't have a chance. The thing is, medically, someone always has an edge. No one is equal. It doesn't matter how much money you have, who you are, or what you do. Medically, someone is ahead. Someone is always a better match. And in transplant medicine, you want the best match possible for the transplant to succeed. Dr. A used to talk about finding "optimal" organs for me. This is a delicate science. By putting someone who is not medically capable of handling the surgery and its after effects, you're not only putting the recipient's life in danger, but you are also, in effect, denying someone who is a better match for the organ the chance at life. You're sort of "wasting" the organ. I know that sounds callous, but it's true. 18 people die every day waiting for an organ. We need to make sure that the best candidates are getting them. Yes I can say that because I got mine. But still, it's true.
So many people are ignorant of this aspect of transplantation. They still think it's about money, or status, or prestige. The only "status" that matters is your medical status: blood type, tissue type, height, weight, and various other factors depending on the particular organ. It's not about the money. It's about the person who is medically right for the organ.
Tomorrow...
Yet another Dr. A appointment, because it's Monday! 7:30 blood, CXR, PFTs, the whole alphabet soup shebang. Hopefully it will all go well. I will let you know how it goes! Weekend went well, had a Valentine's Day dinner with David at Scali's and it was fantastic. :)
More tomorrow...
More tomorrow...
Tuesday, February 06, 2007
Perfect sentiments
This post from Cathy Siepp is so indicative of a lot of my personal experience that I'm just going to post the whole thing. Comments after...
Me again: Oh, the part about washing the hair is so true. If you've read this blog for awhile you know how much the Washing of the Hair can turn into a Wagnerian Drama with all sorts of sturm un drang . Even with short hair, sometimes it is so just not worth it. I hate my hair very often when doing IVs and to have someone who would actually do it voluntarily, like Rita and some of the hospital nurses, were great (even if I was sooo tired I didn't want to).
And about being boring, that is true too. There is often a lot you can't do, other than sit there and have people talk to you, or watch movies. People that will just come over and talk, or bring food YOU LIKE, are great. They make you feel like you are still a person. After I was in the ICU in 2001, our church buddies got together an entire Thanksgiving dinner. It was amazing, and we never would've thought about it otherwise, because we certainly were not traveling to Pittsburgh that year and we didn't think it would be a good idea for people to come to us.
I know it can be a fine line. But, as Cathy illustrates, sometimes it is much easier to do the little things that "normal" people think are so inconsequential and easy that they don't count. They most certainly do!
I'm afraid I had a little melt-down yesterday when I discovered that a friend had delivered not only the brisket she said she would, but also a giant pot of soup, which she'd made Maia transfer to one of my pots and put downstairs in my dad's fridge while I was lying down. So this, of course, meant a lot more work for everyone around here: Getting poor Emmanuelle to wash out the pot (which I could no longer use until it was cleaned), and divide the soup into small freezable containers, while I sat there and wondered why-why-why?
This friend is not a dolt, but one who I'd complained to many times about other people who bring stuff that won't fit in my fridge. And she was sympathetic. But I guess she figured it didn't apply to her.
Why don't they just listen?
Besides which, there's something kind of insulting about the expectation that I should eat the same giant pot of whatever all week, like dog chow, and be grateful. I guess people want the credit for cooking, if they like to cook, but they don't want to really bother cleaning or dividing or really making any effort to make it easier for the recipient.
It actually looked like pretty good soup too, otherwise I would have just asked Emmanuelle to pour the whole thing into the sink.
Now I'm trying to fend off someone who wants to drop off a giant pot of chili, "with all the fixings." I explained about the small containers, rather than a giant pot, but doubt the message will get through. If it doesn't, my new rule is anything that arrives here in a giant pot goes right back into the kindly charity-giver's car without ever entering my house.
I just can't take all the extra work and stress, which no one seems to want to hear. They think I look "great!" They can't believe I'm not really as festive and energetic as I used to be. Maybe they assume if they shove some music into the CD player here and turn what really should be a low-key visiting event into a cocktail party that will make everything fine. It doesn't.
Probably I should be firmer, but I don't want people to avoid me because I've become so horribly boring. What on earth is going on? Is all this really that difficult a concept?
Anyway, there are many people who do understand and really are so relaxing. Debbie helped me wash my hair in the sink this weekend and took Maia and I out for a little lunch at a local cafe. Emmanuelle got a flat tire on our way back from the dr yesterday but fortunately took care of it via Triple AAA without really any trouble. We arrived at Jerry's Deli for a milkshake and conveniently sat there while looking through the window for the truck to arrive at her parked car; it only took 20 minutes, thank God. Many other people are just considerately quiet and low-key and helpful, and understand when I say "no plus-ones" for these visits. And of course, the most important thing of all is just offering to help, and really being available to do so.
Me again: Oh, the part about washing the hair is so true. If you've read this blog for awhile you know how much the Washing of the Hair can turn into a Wagnerian Drama with all sorts of sturm un drang . Even with short hair, sometimes it is so just not worth it. I hate my hair very often when doing IVs and to have someone who would actually do it voluntarily, like Rita and some of the hospital nurses, were great (even if I was sooo tired I didn't want to).
And about being boring, that is true too. There is often a lot you can't do, other than sit there and have people talk to you, or watch movies. People that will just come over and talk, or bring food YOU LIKE, are great. They make you feel like you are still a person. After I was in the ICU in 2001, our church buddies got together an entire Thanksgiving dinner. It was amazing, and we never would've thought about it otherwise, because we certainly were not traveling to Pittsburgh that year and we didn't think it would be a good idea for people to come to us.
I know it can be a fine line. But, as Cathy illustrates, sometimes it is much easier to do the little things that "normal" people think are so inconsequential and easy that they don't count. They most certainly do!
Monday, February 05, 2007
"I rule!"
I sure do, kids, because I actually had a good appointment today! Yay!
I didn't know for sure how things would be, so I was happy when they were good! blood work-good. CXR--good, shows good clearing in the lower lobes where the infection was (is?). PFTs-- 56%! Up five points from last week and only about 3 points off from my all time high back in November, right before I got sick. Woohoo! DLCO was good, and the Niox (which measures inflammation) was down from about 9 something to 7.5, which is good. Dr. A and Julie also heard many fewer crackles in the bases, which means stuff isclearing. My cough is a lot better, as is the nose, and my heart rate/ sats are finally better, so I guess that means no more excuses in the exercise department.
The plan is to do the IV drugs for another two weeks, then see where we are. My next appointment is next Monday at 7:30--woohoo! Hopefully things will continue to go well and I will finally kick this bug. Even though the port drugs are driving me nuts, I am glad they are doing the trick. We also raised the CellCept to 1000 mg and moved the tac back down to 1 mg AM and PM. So more changes to remember, but it's all good.
Now I"m going to make syringes for the next three IV infusions. Oh the joy!
I didn't know for sure how things would be, so I was happy when they were good! blood work-good. CXR--good, shows good clearing in the lower lobes where the infection was (is?). PFTs-- 56%! Up five points from last week and only about 3 points off from my all time high back in November, right before I got sick. Woohoo! DLCO was good, and the Niox (which measures inflammation) was down from about 9 something to 7.5, which is good. Dr. A and Julie also heard many fewer crackles in the bases, which means stuff isclearing. My cough is a lot better, as is the nose, and my heart rate/ sats are finally better, so I guess that means no more excuses in the exercise department.
The plan is to do the IV drugs for another two weeks, then see where we are. My next appointment is next Monday at 7:30--woohoo! Hopefully things will continue to go well and I will finally kick this bug. Even though the port drugs are driving me nuts, I am glad they are doing the trick. We also raised the CellCept to 1000 mg and moved the tac back down to 1 mg AM and PM. So more changes to remember, but it's all good.
Now I"m going to make syringes for the next three IV infusions. Oh the joy!
Yeah I've been there.
This
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...
Sunday, February 04, 2007
OK I have to...
be a real geek and finish the Macbeth quote. I swear on my Catholic honor that I am not cheating.
She should've died hereafter
There would have been a time for such a word.
Tomorrow, and tomorrow, and tomorrow
Creeps in its petty pace from day to day
Until the last syllable of recorded time
And all our yesterdays have lighted fools the way to dusky death.
Out, out, brief candle!
Life's like a walking shadow
A poor player who struts and frets his hour upon the stage
And then is heard no more.
It is tale, told by an idiot,
Full of sound and fury,
Signifying nothing.
(V.II.)
She should've died hereafter
There would have been a time for such a word.
Tomorrow, and tomorrow, and tomorrow
Creeps in its petty pace from day to day
Until the last syllable of recorded time
And all our yesterdays have lighted fools the way to dusky death.
Out, out, brief candle!
Life's like a walking shadow
A poor player who struts and frets his hour upon the stage
And then is heard no more.
It is tale, told by an idiot,
Full of sound and fury,
Signifying nothing.
(V.II.)
Tomorrow
"And tomorrow/ and tomorrow" --Macbeth
"I love ya, tomorrow/ You're only / a day away!" --Annie
"I'll think about that tomorrow."
"After all, tomorrow is another day!" --Gone with the Wind
OK, so there are some quotes for your edification. :) But really, tomorrow, I have another appointment with Dr. A (how about "I've Grown Accustomed To Your Face / It almost makes the day begin..." ?) at 7:30. Woohoo! So I will, of course, let you know what is up.
And hopefully this quote obsession will have stopped by then. :)
"I love ya, tomorrow/ You're only / a day away!" --Annie
"I'll think about that tomorrow."
"After all, tomorrow is another day!" --Gone with the Wind
OK, so there are some quotes for your edification. :) But really, tomorrow, I have another appointment with Dr. A (how about "I've Grown Accustomed To Your Face / It almost makes the day begin..." ?) at 7:30. Woohoo! So I will, of course, let you know what is up.
And hopefully this quote obsession will have stopped by then. :)
You know you're abnormal...
when you're watching the Super Bowl and you're putting together saline and heparin syringes for the next three IV infusions at the same time. And the scary thing is, you really don't even have to think about what you're doing.
Saturday, February 03, 2007
Pictures
Yes, OK, I have been very, very remiss on the pictures from Christmas, as of late. So here are a few, for those who care:
1. Me and my adorable 9-year old godson, Ryan
2. Some of the huge family: L-R: My Aunt Patty (Ryan's Mom, one of my mom's younger sisters); my cousin Diane; her dad, my Uncle John (my mom's oldest brother); my grandma, and me.
3. Cutest kids: my youngest cousins (they're also siblings) Brendan and Paige (who just turned 6 at the end of January).
4. Diane and her fiance (well, he wasn't then), Matt, at Smith and Wollensky's, a steakhouse near our hotel with awesome food and tremendous banana splits. Mmmm.
Dos and Dont's in a hospital
Courtesy of Cathy's World,hereis a helpful list of things to do/not to do when visiting someone in the hospital:
I totally agree on the phone calls, especially since half the time there are people in the room and you can't talk anyway. Or you start to talk, and people come in, and you have to cut them off. If I ever cut you off in the hospital, it's because Big Important People have arrived and they have Vital Information, or some flunky from transport has come to take me away. In the second case I'd rather talk to you, but I have no choice. So don't be offended. Also, if I've just been drugged, there is no way in Hades I am answering the phone. None. Unless you're God, and even then, I won't know you're God, so...
Also, bringing magazines is good. I love my books, but magazines in a hospital are generally easier to handle. As is chocolate, or chips. But ask before you bring food because some drugs really screw up your taste buds.
Don't freak out over every little beep or hiss or whatever. Most likely the patient (AKA, me) is used to it and will hit the appropriate button to get the machine to shut up. Don't freak out going "oh my gosh ?! What is that?! Are you going to die?!" Trust me, if I was in eminent danger of death, the beeping would be a lot louder and I'd probably be several shades of blue...
1. I always unplug the hospital phone as soon as I get there and use my cel phone instead, thus avoiding a ringing phone intended for the checked-out (or dead?) person in the room before you.
2. When in doubt -- that is, you are not really a close friend of the sick person -- email really is better than a phone call. I feel bad at having to turn away callers who only mean well, but I'm often trying to sleep and sometimes, when not quite awake and fumbling around, make the mistake of picking up the phone when I really shouldn't. And then I have to explain that, sorry, but I'm really not up for chatting, etc.
3. Not a suggestion, but a query: Why do visiting nurses seem so much LESS competent than hospital nurses? I'm not that only person who's noticed this, and it's disturbing, because you're really at their mercy. The nurses I ask say the visiting nurses get paid just as much, and really have to be even better since they're working not under a dr's direct supervision, so it's a mystery what the problem is. At this point, I'm having my dr's office nurses change my dressings for me, because the visiting nurse they've sent so far just doesn't inspire a lot of confidence.
I totally agree on the phone calls, especially since half the time there are people in the room and you can't talk anyway. Or you start to talk, and people come in, and you have to cut them off. If I ever cut you off in the hospital, it's because Big Important People have arrived and they have Vital Information, or some flunky from transport has come to take me away. In the second case I'd rather talk to you, but I have no choice. So don't be offended. Also, if I've just been drugged, there is no way in Hades I am answering the phone. None. Unless you're God, and even then, I won't know you're God, so...
Also, bringing magazines is good. I love my books, but magazines in a hospital are generally easier to handle. As is chocolate, or chips. But ask before you bring food because some drugs really screw up your taste buds.
Don't freak out over every little beep or hiss or whatever. Most likely the patient (AKA, me) is used to it and will hit the appropriate button to get the machine to shut up. Don't freak out going "oh my gosh ?! What is that?! Are you going to die?!" Trust me, if I was in eminent danger of death, the beeping would be a lot louder and I'd probably be several shades of blue...
Thursday, February 01, 2007
Day In the Life...
From http://www2.blogger.com/img/gl.link.gifNutmeg:
My day yesterday: (Wednesday)
6:05: Alarm goes off for meropenum dosage.
6:15: Back to bed
7:25: Alarm goes off
7:35: I actually get up
8:00: Leave the house.
8:01: Realize must scrape car.
8:05: On road, where people cannot drive in light snow.
8:45: Arrive at work.
9:00: Find, much to my surprise, that clips are done!
9:30-12:45: Work on press releases, clip work, etc.
12:45: Leave for Children's
1:00: Arrive in Infusion Clinic
1:20: Change port site, give amakacin and meropenum doses
1:40: SoluMedrol arrives, start infusion
2:20: Nap time
3:15: done with infusion
3:45: Go to pick up glasses at Dr. Tracy's--new Kate Spades!
4:00: home, Bible, mail.
5:00 Time for dinner--Golden Grahams!
5:30-6:00: Some Fly Lady cleaning
6:00-6:30: run music for rehearsal
6:30: Leave for choir
6:40: arrive at church
7:10: run responsorial psalm for Sunday
7:30: Rehearsal begins
8:40: Rehersal ends--sang great stuff!
8:50: Home, bath.
9:00: More reading, cleaning, blog checking. :) Insulin, CellCept
9:30: parents over to deposit drugs
9:50: parents leave
10:00: Meropenum dosage
10:25: bedtime, read more of Masque of the Black Tulip
My day yesterday: (Wednesday)
6:05: Alarm goes off for meropenum dosage.
6:15: Back to bed
7:25: Alarm goes off
7:35: I actually get up
8:00: Leave the house.
8:01: Realize must scrape car.
8:05: On road, where people cannot drive in light snow.
8:45: Arrive at work.
9:00: Find, much to my surprise, that clips are done!
9:30-12:45: Work on press releases, clip work, etc.
12:45: Leave for Children's
1:00: Arrive in Infusion Clinic
1:20: Change port site, give amakacin and meropenum doses
1:40: SoluMedrol arrives, start infusion
2:20: Nap time
3:15: done with infusion
3:45: Go to pick up glasses at Dr. Tracy's--new Kate Spades!
4:00: home, Bible, mail.
5:00 Time for dinner--Golden Grahams!
5:30-6:00: Some Fly Lady cleaning
6:00-6:30: run music for rehearsal
6:30: Leave for choir
6:40: arrive at church
7:10: run responsorial psalm for Sunday
7:30: Rehearsal begins
8:40: Rehersal ends--sang great stuff!
8:50: Home, bath.
9:00: More reading, cleaning, blog checking. :) Insulin, CellCept
9:30: parents over to deposit drugs
9:50: parents leave
10:00: Meropenum dosage
10:25: bedtime, read more of Masque of the Black Tulip
Steroid letdown
Well I had my last infusion yesterday, and today actually went pretty well. I did almost a full day of work, getting to the office around 8:20, doing clips, a column, and some press releases for Controlling Board items to be released on Monday. But when I got home around 4:00, I was beat. Sooo tired, I didn't even get to baby-sit, and I think I let the crock-pot meal I was making go a little long. That's the thing I hate about steroids. You feel OK and then you get hit with the side effects and you become so tired. So I'm going over to my parents' house tonight to sleep, probably won't go to work tomorrow, and I have another amakacin blood level tomorrow at 1:00, to make sure my kidneys are hanging in there. Oh the joy! The last two venipunctures have left nice brtuises, one about 1" and another about 2 1/2", on my left arm, so they are a beautiful eggplant color. Really adds a nice touch to the ivory skin tone I've got going on, you know?
Hopefully I will be OK to go by the weekend, since I want to go shopping w/ Richelle for some new things for the apartments--pillows and blankets, especially, since we are apparently heading for a deep freeze!!! Brrr!! Thank goodness I get paid tomorrow. I am so ready for spring it isn't even funny...and I am ready to kick this bug! But other than being tired I don't feel too bad. The chest pain is getting better so that's a good thing, and my nose is clearing up a little. So these are happy things. :)
More tomorrow....
Hopefully I will be OK to go by the weekend, since I want to go shopping w/ Richelle for some new things for the apartments--pillows and blankets, especially, since we are apparently heading for a deep freeze!!! Brrr!! Thank goodness I get paid tomorrow. I am so ready for spring it isn't even funny...and I am ready to kick this bug! But other than being tired I don't feel too bad. The chest pain is getting better so that's a good thing, and my nose is clearing up a little. So these are happy things. :)
More tomorrow....
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