Of telephones and tune-ups

I had my second CI tune-up today (go back next Thursday for another), and today we mostly refined some of the programs and added another speech processor, called SPEAK. So I have two now--ACE (the original) and this one. Next week I'll decide which one I want to use for good. I also started using the telecoil, which is the CI's phone deciphering channel. If you call me on the phone, this is what I use to understand you. :) It can be set to a variety of ratios, so I can either hear only what's coming through the phone, or the phone in conjunction with other sounds (like sirens if I was on a cell phone, or whatever). Right now it's 75% phone and 25% other noise, which seems to work OK thus far, even if people's voices do sound a bit odd (like Greedo in Star Wars). But I can have an actual phone conversation--I've had two today!--which is pretty cool. I just have to turn to the telecoil program before I talk to you. So if you call me, it might take me a minute to answer while I adjust my head. :)
Hopefully I'll be out to see a movie tonight--I really want to see Ratatouille, and check out the CI in a theater!





Gee, think I want to see this one?

Tune-up 2

Is occuring tomorrow, when we set the "C-levels" (I forget what those are, at the moment), but it should be good times...continuing hearing improvement.
I could actually understand the homily yesterday!

Hearing :) :)

Great weekend spent w/ my family in Pittsburgh; it was my cousin Di's wedding shower yesterday, plus my grandma's 77th birthday AND my parents' 28th wedding anniversary. And I heard everybody! I was able to have actual conversations! Some of the kids took awhile to get used to, but overall it was great! I was very excited.
I was also excited to be able to hear the homily in Church. Woohoo!
I go back to see Beth and have the CI tuned some more on Tuesday, so everything is going well so far. I'm really happy with it.

"I can hear you now!"

I can even hear my own illustrious typing--huzzah!!
OK so we went to Dr. W's and first he checked the site to make sure everything was kosher...we were good to go. Beth says there's still a tiny bit of swelling but that's OK. Apparently roller coasters are kind of a no-go unless I take off the CI and secure it with someone else, but I think I can handle that (not all my friends are coaster riders). So anyway, I go back to see him in 3 months just to make sure everything is OK.

Then I saw Beth. First we checked all the electrodes (22) to make sure they worked, which they did (yay!). Then we did the first map which was threshold markers; basically soft and loud sounds. It's pretty crude, but whatever. So I had to indicate whenever I heard the random beeping in my ear. Now this can take a while to master, but eventually we got it done. Once we had this first map (which took awhile since there were 22 channels to check out), Beth activated the thing and let me try to understand speech with it. At first I heard Beth's voice and a lot of what sounded like radio static. Then her voice sort of merged with the static and I got this cartoony kind of thing, but it didn't really matter, because I knew what the heck she was saying. And I didn't have to slavishly follow her lips and guesstimate!! Huzzah! At first it's still sort of hard for me to understand you but the more you talk to me the more I get used to you. And everyone's voices sort of sound the same (Mickey/Minnie) in the beginning, until I get used to your sound. But the point is, even if it's sort of crude, I can freakin' hear you! Mom and I actually had like real conversation in the car on the way home which DID NOT happen before. Cars were actually the worst because I couldn't look at the person's lips and there was road noise to contend with. But I could hear all of her "father from a Christmas Story" comments on the other drivers. Not sure if that's a good thing or a bad thing (kidding mom). So anyway, keep talking to me so I can get used to you!
I went home and practiced the music which went really well. My singing is already a lot better even though sometimes I get static in my ear. But I can hear the pitches again and that rocks my world! I have choir pracgice tomorrow night so we'll see how it really goes. But Beth said it will just keep getting better b/c the brain is so adaptable. I know mine is.
Had a Parish Council meeting here tonight which was GREAT! I actually got everything! Well, almost everything. Not totally everything. But that's OK. So I am looking forward to work tomorrow to see what happens. I warned my boss that they might all sound liek Mickey. :) But who cares? This is awesome!
I really don't want to take it off. Is that weird???

CI...

activation later today. Yeah I'm excited. Hope the darn thing works. :)
Will keep you posted...

Continuing the happy streak...

Another good clinic yay me!
PFTs 60%--haven't been that high since like November of 2006! Yay! DLCO good, NIOX good (like 9.0, so that's good; that's the test that measures inflammation in the lungs), CT/CXR good. Dr. A said there's a tiny tiny polyp thing that showed up on the CT but he's not too worried about it; we'll just watch it.
Weight...ehhhh. Maybe if I can get Dr. A to adjust the prednisone it'll help, because we all know I'm doing the low-fat thing and even working out! So I'm blaming steroids!
Lunch with Amber was awesome, we went to Mongolian BBQ at Easton after her infusion clinic stint.
Tomorrow..CI activation!! Woohoo!

Another day in Paradise...

Yup I'll be at the resort tomorrow! Woohoo!
The normal--Blood, CXR BUT with a CT scan too (bonus!), PFTs/DLCO, and the visit with Dr. A and Julie. Let the fun begin...well, OK fund starts afterwards with Amber! Yay!!

Amazing

I just spent 45 minutes in the gym. Yes, that's right.
45 Minutes.
Without being told to do it.
I'm not quite sure what's possessed me....

Wicked pics

Me and Mel before we went to Wicked last Wednesday, which. Was. Awesome. I want to go again!

This week!

Busy week in the world of Emily's tx...

Monday, I have an appt. with Dr. A and Crew: labs, CXR, Chest CT (woohoo!), and the normal PFTs/DLCO fun stuff. Tiny possibility of bronch since my two year is approaching (!), but it probably won't happen. It better not, because Amber and I have post-appointment lunch plans!

Tuesday is CI activation day! First I see Dr. W at 1:15 and then Beth starts the CI stuff at 2:30, which takes about 2 hours. Hope all goes well!

To top all this off, I have Parish Council on Monday, Parish Council Retreat Meeting on Tuesday, Choir practice for our pastor's last Mass on Wednesday, Kathy at 4 on Thursday, and Di's Wedding Shower this weekend!! Eek!

Happy birthday, Mom!

From Dad's par-tay at Scali's

Happy Birthday Dad!

"Heartland" starts tonight...

10 PM on your TNT station...

The market and organ donation

I've posted a few things here before re: organ donation and ways people have come up with to reduce the shortage. Most of them involve paying people for their organs, or having organizations like Lifesavers, where only people who are organ donors them selves can receive organs.

One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):

How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.

First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."

Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?

The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.

If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?

As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.

Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.

Breakthrough!

I can sleep on my left side tonight! This excites me.
The fact that this excites me--does that make me 1) very boring , 2) very weird or 3) very appreciative of the little things in life? or a combination of all three?

Transplant TV!

Just read on the WaPo site that Treat Williams is starring in a new TNT drama series, "Heartland," about a transplant center in Pittsburgh. How cool is that? He plays (even more cool) a lung transplant surgeon. It's going to be on Mondays at 10. Not sure when it starts...check your papers. But I found this to be waaaaay cool.
If I don't currently get TNT I would upgrade my cable so I could watch this. :)

So much to do...

It's really amazing.

--Father's Day on Sunday--gotta get the gift. :)
--Dad's birthday on Tuesday--see above.
--WICKED on Wednesday! Woohoo!
--Mom's birthday on Friday--get the gift!
--Next Monday: Dr. A appt. and lunch w/ Amber!! And PC meeting
--Tuesday: CI ACTIVATION! And PC meeting, but here.
--Saturday: Diane's wedding shower in Pittsburgh--gotta get, um, the gift!

Whew.
And then there's the regular house chores, the writing of Lily and Archibald (working title), which is coming along nicely (I think). And the blogging and the reading...all sorts of fun things to do.

Oh, and a little thing called work. You know, employment.

I will take some pics of the new things I've got up around the apt. and post them here...probably later today. My camera needs new batteries...always more to do.

And ofr course there is the very tempting Vera Bradley sale at Feather Your Nest....

Two weeks!

Well less than two weeks now (since it's 9:30...) until my CI activation! Woohoo! I go on the 26th, first to have Dr. W check out the incision and surgical stuff, and then to have Beth (My CI Audiologist) work her magic as we get the first "Map" of my hearing done. Apparently this will involve another lovely audiology map test, checking my hearing before we activate the CI to make sure nothing's changed there. I hate those tests, they make me feel so stupid, because you have repeat words back. Well if you can't hear the word or understand it...I usually just end up sitting there going, "um..." But anyway. These appointments take about two hours so we'll see what happens. Hopefully it's good stuff!

transplants in popular culture: The Last Summer (of You and Me)

OK, if you want to read the above book, haven't yet, and hate spoilers, CLEAR OUT.

Room clear?

OK Good.

I just finished reading this book last night. I had read a lot of good things about it and I do like my modern fiction as well as the greatness of Jane. The plot revolves around two sisters, Riley (24) and Alice (21), and their friend, Paul (who I guess is around 22, 23). They have always spent their summers together at a Long Island beach, but now a relationship is springing up between Alice and Paul.

Anyway, Riley ends up having congestive heart failure and a lot of damage to her heart, possibly due to the two bouts of rheumatic fever she's had, the one recently caused by failing to finish a course of antibiotics for strep throat. Riley ends up getting sicker and sicker and is eventually placed on the heart transplant list. Her illness, and the secrecy she has sworn Alice to (she asks Alice not to tell Paul), leads to the disintegration of Paul and Alice's fledgling romance, at least until after things with Riley are resolved.

Now I am always glad to see organ donation in literature, movies, etc. in a positive/accurate way, since it has potential to bring the cause before a lot of people in a way that non-profits often can't. This particular writer, for example, wrote the widely popular series The Sisterhood of the Traveling Pants, so she already has a large following, and since this book is more adult than those, she has the potential to attract new readers (like the Sisterhood's readers' mothers). So I am glad for that.

However. (You just knew that was coming, didn't you?)

I do wish that the author had done some more research or presented the facts of transplantation a bit more clearly for her audience. There are a few things that are glaringly questionable:

1) From the outset it's made clear that Riley hates taking pills and is ambivalent about following rules. She doesn't finish her first round of antibiotics because she loses her beach bag, where the drugs were placed. Yet she doesn't try to get a new script. When you're evaluated for transplant, compliance is one of the main things centers consider, because they're not going to give an organ to someone who isn't going to take care of it. Riley's history of not liking to take drugs, as well as her lack of compliance in something as simple as treating strep, would not make her a good candidate.

2) Riley is a lifeguard; in the novel, she continues to swim even after she is placed on the list, in fact, she swims right up until...well, whatever. Now I have no doubt that that can happen. Heck, I worked until two days before my transplant! It's important to live your life as much as possible while you're waiting, or you'll go nuts. But she is portrayed as extremely sick; the author talks about her lips and complexion being bluish. She would've been on home oxygen therapy at some point, and thus unable to swim.

3) The family gets a beeper. NOTE TO AUTHORS/MOVIE WRITERS: You don't get a beeper anymore! For most centers it's too expensive, and with everyone having cell phones, you just get their numbers. Karen had every single number in our family, including Bryan and Mel's cell phones, so she could ALWAYS get ahold of someone. Which leads to point

4) Riley gets the call for a heart but she left her beeper at home and thus missed it. Note that this story takes place in TODAY'S time period. As per point 3 this would not have happened. The coordinator would've called all the other numbers on the list and they would've found Riley. Now whether or not she would've gotten the heart could've been done more realistically by having it be a 'dry run' as opposed to Riley not having her beeper with her and missing it that way. Because only having one number to call wouldn't have happened. The center did also call the house but, as usual in novels, no one was home.

OK I think that's it. Like I said, I'm glad to see transplantation becoming more prevalent in the media and popular culture. And I am aware of the dramatic element--that is, wanting to up the drama so that it's compelling. When I used to watch ER they usually had at least one CF case a year, and of course they were always pathetically sick. It made for good drama; it made explaining to my friends that I could have a normal life difficult.

Yes!

You know how I like to complain about washing my hair when the port's accessed? Or I'm in the hospital? Well I can complain no more.
Tonight I found shampoo that you spray on. And you don't have to wash off! It just absorbs oil and you are on your merry way! Now I haven't tried it yet (duh), and I imagine that at some point my hair would require a real wash, but this is great! For those of you who are curious, it's Frederick Fekkai's Summer hair Wash and Wear instant shampoo spray ($20), and it can be found at CO Bigelow, larger Bath and Body Works and larger Victoria's Secrets (Like ones that sell a lot of beauty stuff). Or, I'm sure, online.

Duck Fuzz

Remember how I mentioned that for the CI surgery, a small part of my head had to be shaved? You can't see it because the other layers cover it, but it feels odd to have hair and then...no hair

However I do enjoy running my fingers over it. We've reached the point now where I guess it's about, oh, maybe 1/4 inch to 1/2 inch long, so it feels like a little boy's crew cut. Or duck fuzz. Or something. But it's kinda cool. I just have to make sure I don't turn into a head-rubbing freak. :) Since no one can see it it would just look odd.

Memeing...again

Got this from Adoro and I liked it!

Here are the rules: Share four things that were new to you in the past four years. Four things you learned or experienced or explored for the first time in the past four years. Then share four things you want to try new in the next four years.

Four New Things in the Past Four Years: (2003-2007)

1. I graduated from college
2. I got new lungs. :)(OK maybe that should have been first)
3. I got my apartment
4. I got my first real job

Four Things in the Next Four Years: (2008-2012)

1. I hope to be married. :)
2. I hope to have something published other than in our local papers :)
3. I will have bought a house/townhouse/something
4. Maybe a Master’s? We’ll see…

A bag of emotions--updated

**This may be a rambling piece. If it is, I apologize.

One of my job responsibilities is reading and cutting the daily papers from around the state every morning. Two of our interns help me out, but since I've been doing this for almost four years now I'm extremely adept at cutting and clipping, so I usually do about 3-5 papers a day. This means I get to read many, many editorials and op-eds, which can have the unfortunate tendency of "getting my dander up." It hasn't happened for awhile though, and on some topics I've almost become immune to the idiocy that's spouted off like gospel.

But today that didn't happen.

The Cincy Enquirer runs a regular feature called "Your Voice" where readers can write their own op-ed columns. Generally this is a pretty cool idea and it's nice to read what "ordinary" people are thinking about current issues.

Today, however, not so cool.

The author of today's piece is an "environmental activist" and was writing about abortion. Now that should've told me everything I needed to know right away. But I am a glutton for punishment, apparently, so I read the thing. Even though I tried to resist.

She wrote about how pro-lifers really don't care about the woman's life. That sometimes abortion is necessary, even though no one wants it. Because it will save a child a life of suffering, or a slow death, or keep it from being abused by its parents because it is unwanted, or ending up in jail because it wasn't raised right. And then she gives us Jocelyn Elders: "every child should be a planned and wanted child."

Then there's the footnote that says she had two brothers that died of CF.

Well that just about did it for me.

I don't even know where to begin. I've covered the whole idea of the selfishness involved in abortion, to some degree--the idea that your life cannot be "interrupted" by a baby. As Mother Teresa said, "It is a poverty that a child must die so you may live as you wish." I've also talked about how you've made the "choice" to possibly hvae a baby the minute you had sex. The Pro-life movement emphasizes responsibility. Once the baby is conceived, once that sperm meets that egg, you've got a person. Deal with it appropriately--by not killing it. Please. If you don't want kids, DON'T HAVE SEX. Thank you.

It's the stuff about the child "suffering" that gets me. Who is SHE--who are any of us?--to say that?! How arrogant! As Charles Dickens wrote in A Christmas Carol:

Will you decide what men shall live, what men shall die? It may be that, in the sigght of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh, God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!

It is the height of arrogance. How blind we are. So that child doesn't deserve love, even if it is only for a few hours (i.e., as seen in Karen Santorum's elegiac Letters to Gabriel?)? More proof of the softness of our age. Suffering in any form is seen as so horrible that we would rather die. That's crazy talk.

And then the CF reference.

I'm confused by it. Does it serve as some sort of qualification for what she writes? If so she's insulting thousands of people with CF and their families. I certainly have never wished that I had never been born. I certainly never wanted my parents to have killed me. I love my life, always have. Sure, there are some parts that have been less than fun. But I would rather have had my life, with those moments, than no life at all.
CF isn't a cakewalk. There are complications, strange things, multiple hospitalizations, and emotional issues that most people will never go through in a lifetime, let alone as a child/teenager/young adult. You have to grow up fast. Your family's dynamic is forever altered. But the life is still worth living.

I cannot believe that this writer, who had two brothers with CF, could write a piece like this. I don't think she's implying that we should all be killed off. But it's just chilling to think of it. Didn't she see the rewards that come to a family from these situations? The growth? The bonding? The way you have to take care of each other? Either she missed it or it didn't happen.

We can be so selfish. These babies want nothing but to be loved and cared for. And to be given a chance. If you don't want the baby, give it up for adoption. I'll take it. I know many, many people who would take it. Killing the child is not the answer. And, in the long run, it will probably just make things worse. Groups like Project Rachel attest to the damage abortion does to women. So where is the benefit to the practice?

Easy answer: there isn't one.

I realize then that we never have children, we receive them. And sometimes it's not for quite as long as we would have expected or hoped. But it is still far better than never having had those children at all. 'Kate,' I confess. 'I'm so sorry.'
She pushes back from me, until she can look me in the eye. 'Don't be,' she says fiercely. 'Because I'm not.' She tries to smile, tries so damn hard. 'It was a good one, Mom, wasn't it?'
I bite my lip, feel the heaviness of tears. 'It was the best,' I answer."
--Jodi Picoult, My Sister's Keeper

Stories

Some of you are aware that I like to write creatively. I took classes in high school and college and have kept a journal since I was about 11. Fiction writing has always appealed to me, as has memoir/autobiography (as we know).
So when I turned 25 I got the crazy idea to try to write 25 short stories during this year. Don't ask me where it came from, it just did. So I've begun and I'm up to five. Two are actually accomplished and three are still being worked on. It's the most current that's given me the thought that it could (emphasis on COULD) grow to be something more than a short story.

I love the musical The Secret Garden. It has a fantastically complex score, a wonderful book and great characters. When I was in college, "How Could I Ever Know?" was standard recital fare for all sopranos, while "Hold On" was a chestnut for the altos. And for the men, "Lily's Eyes" is one of the best. duets. ever. I also loved the book as a child and even had a "secret garden journal", which was beautiful--creamy ivory pages, original illustrations and quotes from the novel throughout.

Anyway, my story idea is how Lily and Archibald met. They are Mary's aunt and uncle, whom Mary is sent to live with in the novel. (Well, OK, just the uncle since Lily's dead) The musical has a number called "The Man Who Came to My Valley" where Lily and Archie recollect their first meeting, until Mary stumbles upon her uncle, alone, in the portrait gallery (Lily is a ghost in the musical who appears throughout). The musical's other numbers also provide background into their relationship, as well as Lily's relationship w/ her sister, Rose, and Archie's with his brother, Neville.

I thought it would be awesome to use some of this material, the novel, and, of course, my own ideas to flesh this out. The musical actually focuses more on the adults than the kids, which I enjoyed, and lead me to think of this idea. So that's what I'm working on right now. Of course that means a re-read of The Secret Garden and ordering a copy of the musical's book on Amazon...like I need an excuse!!

I'm very excited about this project...will keep you posted...

I am the Household Queen

Today was like "Let's Rehabilitate the Apartment that I Neglected for Two Weeks Whilst I Lived With My Parents" day.

**I went to Feather Your Nest (great store in downtown Pickerington, antiques, Stonewall Kitchen and Vera Bradley!) for some mango chutney (new recipe I want to try uses it) and a soap dish for my kitchen.

**New cookbook on sale at Barnes and Noble.

**TJ's trip for staples--I cleaned out my fridge and tossed a lot of stuff, thereby necessitating the trip. But really, do I need a reason to go to TJ's? I think not.

**MASSIVE kitchen cleaning. Cleaned cabinets, cleaned stove top, cleaned a floor a bit. Tomorrow I'm going through the cupboards.

I love getting off work at a reasonable time. :) Nopw all that's left is the disaster known as my Kitchen Table...when you can see it...

We're your friends!

H/t: Wheelie Catholic

This is a lovely bit of "right to die" mumbo-jumbo from the left (actually, the Huffington Post): (my comments in bold)

Russell Shaw
Disability Advocates, Get Over Your Fear of Us Right-To-Die Folks

I live in Oregon, the only U.S. state in which physician-assisted suicide is legal.

I recall a conversation I had a few years ago with one of the major advocates for this legislation. She told me that some of the most vocal opponents were disability rights advocates.

In this, the week that admittedly creepy Jack Kevorkian is released from prison, we're hearing murmurings again from the disability community.

According to the website DiversityInc:

"The furor over Kevorkian's release is being led by Not Dead Yet, a national disability organization that views assisted suicide as the "ultimate form of discrimination (that) has been ignored by most media and courts." The organization states that "For some, a disabled person's suicidal cry for help was ignored, misinterpreted, or even exploited by the right-to-die movement."

Admittedly, I don't have the immediate personal sensitivity to this issue that some disabled persons might have. But as to physician-assisted suicide, I have noticed the cascading inefficacy of pain killer pharmaceuticals administered to some dying friends and loves in their last days on Earth. Look, pain control is NOT an issue. At all. There are plenty of drugs that will make you pain-free. Now, they may be in doses that are dangerous, or may impair cognitive function/breathing/etc., but if you're dying, what do you want? To be sane and in pain, or out of it and pain-free? Becoming a junkie isn't a major concern at this point. To say that pain is THE issue is, um, wrong.

From where I sit, I don't see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity oh the magic word!to those whose pain can no longer be nursed which is NOT possible, at all, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.If you want to stop treating us like second-class citizens, then build more restrooms for us. Don't stare at IV ports or insulin pumps or wheelchairs. Don't ask stupid questions. Do/don't do a lot of things. But killing isn't really an option.

Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?" Well not to put too fine a point on it...but let's look at it this way: the number of childrne born with Downs Syndrome is decreasing. It's not because we've found a cure, kids.

While I don't have the life experience to see things from your perspective, I have to tell the disability advocate community that such a mind-set strikes me as a bit paranoid. I liken it to the fear in some minority communities that some forms of contraception are really efforts at medically sanctioned genocide. Have you read Margaret Sanger? Have you read early abortion-rights literature? That's what it was, honey. It was an attempt to limit the growth of minority, specifically black, populations. And they weren't exactly subtle about it.

Disability advocates, please understand we right-to-die types are not your enemies. We are your friends. Suuuuure. OK.

As they say, "With friends like these, who needs enemies?"

Another meme...because I like them!

From Nutmeg:


“For this meme, each player lists 8 facts/habits about themselves. The rules of the game are posted at the beginning before those facts/habits are listed. At the end of the post, the player then tags 8 people and posts their names, then goes to their blogs and leaves them a comment, letting them know that they have been tagged and asking them to read your blog.”

**I must read something before I go to bed at night. Even if it's only for a few minutes, I cannot go to bed without reading.

**I make really, really good pasta, taught to me by my father and he learned from his mother/grandmother before him. So, therefore, I am making you REAL Italian pasta and not this quasi-pasta stuff so many places give you!

**I love to scrapbook and take pictures.

**I cannot draw.

**I always got "refrains from unnecessary talking" checked on my grade school report cards. It didn't do much to stop the habit, apparently.

**I bite my nails. Always have. Always will. Can't stop.

**My first theatrical role was as Snow White in my preschool's Parents' Day production. I got nervous and hid behind the kitchen set. :)

**My middle name is spelled with only one "l". People mess that up a lot. But not as often as they mispronounce/misspell my last name. That's annoying because it's not that hard!

Um, I don't know eight people to tag. So hmmm. Anyone who feels like it. :) But come back here and let me know you did it.

Work!

Back to work today--I even got there early! Well, OK , part of that was due to my stupid uneven head which led to an inability to sleep (I am so doing the Tylenol PM tonight kids. So definitely.), which lead to it being pretty easy to get up when the alarm went off.
I am all caught up, and even started doing some regular work, so I am proud of myself. I thought I'd be super-behind since we were supposed to be busy today. Don't get me wrong, we were busy, but the boys had most of it in hand and didn't need reinforcements, so I was able to catch up and get organized. Fantastic.
Head feeling OK, it can still be a pain in the butt though. I'm wary of starting pilates/yoga again due to some of the positions my head would be in. I suppose I could modify them, or just skip them. Parish Council went long tonight so I'll just do some minimal stuff and try the modified yoga tomorrow.
Hoping to get some letter writing/reading/journaling in before bed...started A Wonderful Welcome to Ozlast night by reading the Gregory Maguire introduction, and am hoping to read the beginning of Mansfield Park tonight.
Oh, btw, saw the bill for my surgery today....$77 THOUSAND. Can I say how much I love my insurance company right now? We don't have to pay any of it. Mwah insurance company. Mwah.

Back to life

I am back at the lovely apartment, with most of the unpacking done, and getting ready for what will be a wild week at work...yay Budget Highlight Doc! And Controlling Board tomorrow so we will be a busy place. But it will be nice to get back to work and be a productive person again (not that reading like a fiend and shopping occasionally didn't make me productive... :).

Ha ha!

All right, stitches out. Woohoo! I don't have to go back to see Dr. W for another 3 weeks, which we managed to aline w/ the day I get my C.I. activated, so I'll be spending a lot of time there on the 26th, let me tell you. But it's better than going back and forth...back and forth...
I know I've said this before, but even after the initial activation on the 26th, I still will not have great hearing. In fact, I have no expectations. I'm guessing it will be better than it is now, which is, essentially, no hearing in my left ear. So anything is an improvement. It will take many months until it is really where we want it, and adjustments continue for up to one year post-surgery. So warning to all of you who know me--the Bionic Hearing is not Immediate. :)
In other news...working in War and Peace, which, I've decided, is actually just a bunch of stories woven together, and as such, it's not a bad read. Also reading The Grapes of Wrath which I am (shockingly) really enjoying. Also finished P&P and will start Mansfield Park sometime this weekend. Whew. Good thing we didn't do surgery on my eyes!

Update time

Tomorrow will be the "one week" mark, and things are, in general, going OK. Sleeping is still a very off and on proposition, which irritates me, because we know how much I love my sleep. :) It also doesn't help that's it's been pretty humid here, with a lot of thunderstorms, which I generally like, but they don't seem to like my head. (Or my head doesn't like them. One of the two.) But in the grand scheme of life, things aren't too bad.
Still reading like a fiend...read Elizabeth Berg's Until the Right Thing Comes Along last night, which was pretty good. Not my favorite of hers, but it's OK. It was a quick read, which is what I wanted, to take away from the War and Peace and B XVI book madness!
Also watched The Painted Veil...check out the 11th Commandment for more on that. :) (Yes, a shameless plug. Hah!)

GRRR

Back to not sleeping! Since sleep isn't happening I might as well blog...or at least update the side bar (which I have done).
On the plus side, I love these low-cal fudge bars that I eat whenever I can't sleep. It seems like hunger or my head, or both, are conspiring to keep me awake. Sigh.

I knew it!

Elizabeth Bennet

Often called Lizzy, Elizabeth is the heroine of Pride and Prejudice. The seceond eldest of five sisters, she is witty and intelligence, though her prejudice prevents her from recognizing her true love when he appears. However, Mr. Darcy, though he appears proud, wins her love and respect, but not before she believes she's lost him forever.

Which Classic Heroine are You?

Voodoo time

No, not really, don't panic.
One of the things I forgot to mention about the surgery was that Dr. W used tiny needles to indicate the placement of my facial nerves, so he wouldn't get too close and nick them during surgery (or, heaven forbid, do worse). I was like a little voodoo doll--I noticed I have a very very tiny mark on my forehead from where one must have been.
Sleeping is still sort of a weird thing; I sleep in spurts and then want to get up at like 5 a.m. This is very weird for me (but I don't have to tell you that). The sutures seem to be doing OK. Overall it feels like someone put a dollar coin in my head right b ehind my left earlobe. It's weird to tuck hair behind it. But I am lucky that I have hair to cover it. The shaved area isn't all that big but I can deal with the purple-ish bruise a little better.

Funny :)

A quote from Disney that seems applicable right now:

"No! Don't pull on her head! She's recovering from surgery!"--Lilo, Lilo and Stitch



Lilo and the aforementioned doll. Oh, and Dr. W did a better job than Lilo did on the closing. :)

Dressing's gone!

So I look slightly more normal! The area behind my left ear is bruised pretty good (sort of an eggplant color, from what I can see), and I'm not totally sure what the scar looks like because I can't turn my head quite that far. But I washed my hair (w/ mom's help) and we put neosporin on it to keep it clean, so it doesn't look too bad. I'm glad I'm not a boy, though, because at least my hair covers the spot. I love my hair right now. :)
Overall am feeling really good, surprisingly. Hopefully the trend continues...

Pictures...

Haven't had a few in awhile, so here for your viewing pleasure:

I'm baaaack!

And we're back!
So to wrap up:

Well, the surgery time kept getting pushed back. First it was 9:30 then it was 11 something and then, finally, we settled on 1:30 (which was more like 2, but oh well). So Dad came over to my apt. around 11, and we cleaned out the trash, did some final packing, etc. before we headed over to Riverside.
The campus is nice, and it wasn't too hard to find a place to park, since everything is color-coded (yellow, red, green, purple, blue, etc). I was in the "yellow" section but we parked in Green, which meant a short jaunt through the hospital to the surgery waiting area, where we arrive promptly at noon like we were supposed to. Boy was it crowded. I don't think I've ever seen one that crowded. Dad said the one at Children's isn't like that, but Mount Carmel (where he goes w/ Mom for her surgeries) is.
The women at the desk were nice (actually, everyone here was nice--good thing) and we registered and waited a few minutes until a woman from surgery came down to get us. The cool thing was this wide-screen monitor that listed all the patients and where they were in the surgical process, from check in and post-op. Very cool. :) I liked that. Dad said they had one at Children's but since I've never waited for anyone to come out of surgery I obviously wouldn't know. :)
We were taken up a floor to the pre-op area, where I got a bed, a gown and huge hospital socks. :) These gowns were somewhat nicer than Children's since the sleeves button, so when nurses wanted to access my port we didn't have to pull down the whole gown and give everyone a great view of my chest. But I guess you can't do button gowns at a kids' hospital because you'd probably have a bunch of naked kids running around as they figured out how to undo the buttons!
I had three nurses, but I mostly saw Ann, who was really nice. We did the usual pre-op questions, and I was very glad we had brought my med bottles in with me because all I had to do was give the bottles to Ann and she could just write them down, along w/ the time I took them each last. It made life so much easier! We also accessed the port and started IV fluids.
Dr. Willett came in right away and talked to me about what to expect, etc., both pre and post-op. They would "check" the implant right away to make sure it was working and in the right place. Now that doesn't mean I can hear now (because I can't, not until I get the outer part of the implant at the end of June) but they were able to check it and I did respond, apparently, so it's in the right place and once we activite it I will be able to hear. This is a complicated thing to explain, no? Sorry. I'm doing my best here. He also said there would be a lot of buzzing (which there is) and stuff like that.
I also had to do the lovely pre-surgery pregnancy test (even though I am never pregnant, oh well). Right before we went back I met the anesthesiologist, who talked me through it and asked me if I had any questions. He was very business-like but good. Knew what he was doing. :)
Around 2 I went back to the OR--the last surgery had run a little long. I got to keep my glasses and my hearing aid until right before we started, which was nice.
The OR itself was medium-sized, which was nice, because those big ones can be kind of scary. Even though I could still see and hear, I got a little freaked out right before we started; there's all these people working on you, and they're so close, that it can freak out the most calm person, I think. I received the oxygen maskl and right after that the Doc slipped some sedation materials in my line, and I was gone. :) Yay!
The susurgery took about five hours, and I finally woke up (well, kind of) in a room hours later. The room was a double but I was the only one in it; Dad spent the night and took the other bed, which was nice for him, since he didn't have to sleep in a chair like he normally did. I threw up a few times, but Dr. W was great about having pain killers and anti-emetics given to me, and the nurses were great about giving them! So overall I was pretty comfy.
Dr. W came in this morning around 7:15 to change the big dressing to a (slightly) smaller gauze dressing; it looks kind of like a big-fat headband. :) Obviously it is thicker on the left side than the right and I can't lay on my left side (not that I would want to, anyway!). About an hour later I got to go home w/ some scripts (a pain killer and an antibiotic) and tomorrow we can take off the big dressing and just put neosporin on the stitches twice a day until I go to see Dr. W next Friday, when he'll remove the stitches. I can even wash my hair, albeit gently, so that's a good thing.
All in all, things going well so far. Happy about that. I'll let you know how things go tomorrow...

Surgery tomorrow!

Well the time's been moved to 1:30, so we have to be at Riverside at noon, which means Dad will be over here around 11 to help me move stuff into the car and clean up the apt. before we leave. At least I'll have time to get stuff done in the AM, but I'm going to be grouchy being NPO that long, which is why I am pigging out now. :) Ha ha. I figure the next two days will be light eating-wise. So enjoy it now....
No blogging tomorrow, possible resume on Thursday. Not sure.

Books! Again!

I love this meme, from Fr. Z and the Hermit. So even though no one's tagged me I'm doing it, darn it!

Three fiction books everyone should read:
1) Jane, Pride and Prejudice
2) Michael Cunningham, The Hours
3) Milton, Paradise Lost

Three non-fiction books everyone should read:
1) Thomas Howard, On Being Catholic (even if you're not Catholic, dag nab bit)
2) David McCullough, John Adams or 1776 (depending on your stamina)
3) JPII, Crossing the Threshold of Hope

Three authors everyone should read:
1) Jane! Jane! Jane!
2) Dostoevsky (at least once)
3) C.S. Lewis

I tag Nutmeg and Liz. If they read this. :)

Countdown: 2 days

Well only two more days until the C.I. surgery...oh the joy! Like I said I'm not so much excited as I just want to get it over with, you know? Being able to hear even slightly better will be a big boost to me and will certainly make everyone around me happy. (Or happier)

We go to Riverside on W morning, the time is TBD. Last time I believe the surgery was set for 9:00 so that meant we had to be there at like 7. Not that I'll mind because I'll get to sleep plenty. I will be staying over night so there won't be any blog activity from Wednesday to Thursday for sure. Potential re-blogging to start on Friday. I will be at home during the recovery so I will have wireless, which may mean more posting once I'm up to it. :)

The surgery can take anywhere for 1 1/2 to 5 hours, although we're only doing one ear (my left) so it shouldn't take five hours. You can do a heart transplant in 5 hours, come on! I have no idea what it's going to really look like, post, so I'm sure that'll be a fun discovery. It's very odd to consider having things done to my head, you know?

I have some new books, of course: Jesus of Nazareth, Reason to Believe, The Grapes of Wrath, The Painted Veil. So I will be entertained, at least. And the Jane Austen project continues apace; I finished the Cambridge Guide and am working on The World of Her Novels, which is fantastic. Loved it.

book update

So here's how the reading from the massive Book Binge is going: (bold means I've read it, a star - highly recommended)

--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 *

Now reading: Introduction to Jane Austen, Jane Austen: The World of Her Novels
I am also going to re-read Late Have I Loved Thee (*) for a POTENTIAL submission to Dappled Things.

Two in a row!

Yes, another good clinic!
PFTs good, NiOx was broken, so can't tell you what that was about. All the labs are good. So we are set for surgery next week. Oh the joy!
Everyone keeps asking me if I'm 1) nervous and/or 2) excited aboutt he surgery. The honest answer? I just want it done. I want to be able to decipher sound. That would be really, really great. Even though it will never be as good as natural hearing, it's GOT to be better than what it is now, with everyone sounding like Charlie Brown's teacher and me being unable to really use the phone. I will say that I like the fact that no one calls me at home. It's nice for it to be so quiet. :) But I also miss the communication aspect of it. And I'd like to be able to hear everything in session at work, too. And the benefits for my music will go without saying. :)
AND I exercised today! Go me!

Major book binge

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 least I'll have stuff to read in the car when we go to Pittsburgh this weekend!

Major book binge

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!

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.

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 .

"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?

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.

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.

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.

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...

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.

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!)

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!

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.

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.

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.

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... :)

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. :)

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. :)

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...

Learning from CF

This is a great article over at the Canton Repository. Here's the beginning:

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.

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!!

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...

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.

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.

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.' " ?