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.

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

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!!

I am smarter than a 5th grader!!

From that new Jeff Foxworthy show (h/t: Number 1 Happy St. )

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.

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?

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.

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!

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!

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....

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!!

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!

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. :)

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!

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.

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.

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.

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!

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?

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. :)

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.

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.

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)

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...

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. :)

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 :)

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?

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.

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...

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.

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...

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...

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!

"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!

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...

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.)

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. :)

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.

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:

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...

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

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....

Last infusion! (for now...)

So today marked Day 3 of the Steroid infusion, which went pretty well. The last two days I have taken to napping, which is quite nice. :) Today I was running a little fever, about 99.1, but that's OK. We only worry about fevers if they're over 101. So that was OK. And, I gotta say, with it being like 20 degrees, I wasn't going to complain about part of my body being warm!

Actually got a real amount of sleep last night! I had to wake up at 6 to do my meropenum, but that wasn't bad, since I went back to bed until about 7:15, which was nice. It's nice to wake up when the sun is actually present. We changed the IV schedule to 6, 2, and 10, which isn't bad except for the 2 p.m. one which I'll have to do at work. Oh well. I'm sure I can find some place to do it...I hope!!

Not feeling too bad...a little tired and some headache action, but I think I'll be able to make it to choir tonight. And if I feel bad, then I'll just leave early. No problems with the CellCept so far (huzzah!). So overall, not feeling too bad. Still kind of short of breath, but I'm sure that after a few days more of drugs we should be able to kick that. I hope. I see Dr. A again on Monday at the lovely hour of 7:30, so at least I get a Children's break until next week. Yay!!!

Day 2: Infusion

Well, last night was not high-quality fun. I believe I got about 3 hours of real sleep, having gone to bed at 10:15 and waking up at 7:30. Yay, lots of fun. The sleep actually came around 4:45, so some productive night.

Blood level at 8:45, then I actually got to work today! Got almost my entire to-do list done, and will get to work tomorrow. Huzzah! Then went to infusion at 12:45 to get amakacin and SoluMedrol. Julie stopped by and we are stopping the levoquin since it doesn't show up on any of the sensitivities. One more drug off the chart...yay! I did manage to take a cat nap during infusion, which was helpful.

So cold here, which is not helping my mood! But at least things are looking a little better. Hopefully I can get some sleep tonight. the only real bugger is washing my hair, as usual, even though it's a lot easier now that it's short.

Another change: this is the first IV course I'm administring entirely solo. My parents are mixing the drugs but I am pushing them and making sure they get done. Pretty cool, eh?? :) I am actually kind of proud of this.

I'm going to pitch a tent

Seriously. In the lobby of Children's, and just live there until all this craziness is resolved!! (warning: possible ranting ahead)

So I go to Children's today, per usual, hoping, hoping, hoping that I'll actually get to work. Blood draw at 8:00 in infusion, where I find out that I've been scheduled (tentatively) for a steroid infusion at noon. The steroid infusion I was not supposed to have. But whatever. I figure I'll wait and see what Dr. A says. Then CXR,as usual, looking about the same. PFTs, the same was last week, except the DLCO numbers were better, I believe. They kind of tanked last time, so at least they're better. Weight, the same. BP still a little high, heart rate OK, SATs like 96.

I see Julie, and we go over meds, talk about my symptoms, which are the same as Thursday minus the hand swelling. Dr. A comes in, and we talk. Here's the deal:

--the culture didn't grow any fungus so we can stop the aerosol med. YAY!
--We are also changing the Imuran to CellCept, another immuno-suppressant that is taken twice a day, an hour after the tac/prograf (so 9 am for me) to avoid stomach issues (which, as we all know, are something I like to avoid as much as possible). I start that drug tomorrow.
--We are doing 3 days of steroids because there was a lot of inflammation. So MTW in infusion at 1:00 (well earlier today but 1:00 every other day). Oh the joy. But I'm not taking prednisone while doing this, so maybe that will help.
--I am starting IV antibiotics--Again. This time it's the meropenum (oh the joy!) and amakacin, which involved a blood draw at 5;45 TONIGHT and another at 8:45 tomorrow morning to check drug levels so we don't screw up my kidneys. 'Cause you know, I don't need more screwed up organs. This will be at least a two week course, with the first drug being every 8 hours (Q8) and the latter being every 12 (Q12). So the joy. And I get to do them by myself mostly, so I don't have to live at home and can GO TO WORK. Because I am trying to have a life and a job, y'know. Minor consideration. GRRRR.

So I go to infusion, get the first doses of the IV drugs and the SoluMedrol (steroid). I'm there until about 2:00, go home and sleep until about 4:45, then trek out to Children's Urgent Care on Broad St. for a blood draw. I'm there 30 minutes for what should take 2. Fortunately the nurse who drew my blood (veinipuncture, of course, we can't just do the finger stick) was magic and got me on the first stab. That never happens, as we know. I finally ate dinner around 7. So, needless to say, it was a crazy day. And tomorrow, at least, I get to sleep in, get the blood draw, work for a few precious hours and then get more steroids. What fun.

Hopefully all of this will do the trick because I'm tired of all this crap!!!! Wow OK that was a lot of ranting. Sorry :) But it was a long day. And it's still not over because I have to give drugs later. Sigh. Oh well.

So that's the news from here...hopefully tomorrow's infusion will go OK.

Too young

I was reading another blog post today where someone wrote that a person who, at 59, had just died, had "died too young." Comments like this bug me, because to me, 59 is pretty good. You're one year shy of sixty, six years out from retirement. You've had almost 6 decades on earth to study, marry (or not), live your life, and enjoy it (hopefully, if you have the mind to). Fifty-nine's not young. Six is, or 14, 17, 25, or even 30. Babies dying is "dying too young." But 59? That to me is kind of pushing it. I know this is the era where everyone expects to live to be 80+, and, believe me, if my parents, who are both 50, died tomorrow, I would be upset beyond belief. But I wouldn't say they "died too young." I would mourn the fact that they didn't see Mel graduate from high school, or Bryan from college, and never saw us get married or know their grandchildren. Those things are sad, and things they should have enjoyed, under the 'normal' scheme of life. But "too young"?

I know this might come off as insensitive, but it's just the way I feel. Of course, I'm biased. When I was younger I thought 30 would be pretty good. Now that that's only, um, about 5 years off, not so much. But it's another reason to live every day to the fullest and not get bogged down in the stupid things ( soo much easier said than done, I know. Right now I feel like I'm bogged down in nothing but stupid things). Thought I'd share...

Listening

This post from The Anchoressreally struck a chord with me, so I thought I'd share my thoughts on it here. In a strange coincidence, I will be posting this on both this blog and my Catholic Girl blog, since they have to do with both health and faith, two things very close to me.

The Anchoress talks about the day her doctor told her she was losing her hearing due to Lyme Disease. Well, having lost a good deal of my hearing due to drugs pre-tx, I can relate to her feelings of shock and dismay. And even anger. Both her sons are musicians. I am a musician. Of all the things that had been taken from me, this was the one that really hit home. I mean, it was what I did. I was a singer. I had been trained in classical singing. Music was the thing for me. In college, I really developed and ear and was coming up with good relative pitch (OK, not as good as Tiff, who has perfect pitch, but we can't all be perfect). We first noticed (well, my friends noticed) in my later years at college that I wouldn't hear them when they asked me things, or were talking to me. I chalked it up as being distracted or involved in my work. Even as a kid, when I was reading, if you tried to talk to me it could be very hard to get my attention.

But I didn't just have good hearing, I had great hearing. I could hear my name being whispered two rooms away. It drove my parents crazy. I never did the loud rock concerts, loud walkmans, whatever, that ruins your hearing. And yet, the drugs that saved my life in the end took away quite a bit of it.

Fortunately, God has blessed me with the ability to still have my music. Some of the upper, upper registers are gone but I have pretty good musical memory. And that's what singing is, hearing the pitch in your head. So if it's a song I know (and, thank God, I know many) I'm OK. I can go to musicals that I've known and loved and still enjoy them. I can learn new pieces, as well, and my musicals abilities haven't abandoned me. In regular conversation, however, it's another story. People get frustrated because I can't hear them. Well, I'm frustrated because I can't hear them. When I'm in a noisy restaurant and everyone's complaining because they can't hear each other, I always say, "welcome to my world." It makes them a bit more conscious. There's nothing more inane about being mad at someone for being unable to physically do something. It's stupid.

The Anchoress also writes about the Dark Night of the Soul, how God uses people in their weakness. I love the concept of the Dark Night. To me, it is very comforting to know that those who are closest to God can also be, at times, the farthest from him. St. Terese of Avila, I believe, calls these periods of "aridity," like being in the desert. Immediately before St. Therese of Lisieux's death, she was in severe aridity. She couldn't pray, she doubted her vocation, she doubted the existence of Heaven. Now I haven't doubted the existence of Heaven, but I have been in one of these periods lately. Not just because of the hearing problems, but because of the health issues overall, and how dependent they can make you. Dependent on other people, when we all want to be as independent as possible. We don't want other people giving us meds, washing our hair. These are things we have been able to do since childhood, or can handle ourselves. To be reduced to an almost sub-child position can be intolerable. But to not have the support is the worst of all. And when it seems God is silent...

I remember something I read once, from a letter Mother Teresa wrote to her confessor (I think). She said that sometimes she found her mission almost too hard to accept. She couldn't do it. And she would pick up her rosary, very deliberately, and just say it. The Creed. The Our Father. The Hail Marys. The mysteries. Just going through it, almost, if I may say, mechanically, until she reached the end. And it would be enough.

I have taken this strategy to heart. When it is too much, I take my beads, whichever set is handy, and just pray them, letting whatever is in my heart be opened and presented before God and Mary. They know what is there. And, in the end, it is enough.

Blah!

Have yet another Dr. A trip tomorrow. Am not too thrilled. Also not thrilled with the fresh snow onslaught. I wish we could figure out what was going on so I'd start to feel better and actually be able to, I don't know, go to work, get work done, do the things I like to do instead of 1) not sleeping 2) not sleeping 3) not sleeping 4) having the port accessed all weekend for no good reason, so not getting good hair washes (although a lot better now with short hair than with long, let me tell ya), and 5) having all sorts of other issues with work and other things. Sigh. When it rains, it pours, you know? Hopefully Dr. A will have come up with some positively brilliant ideas over the weekend so that we have a game plan. I have faith.

The Phone Call

So Julie called around 5:00, and the deal is:

--appt. on Monday morning at 8:00 for blood, CXR and PFTs, and to talk about what the cultures grew over the weekend.
--Lots of inflammation but no signs of rejection thus far.
--changes the tac dose to 1.5 AM and 1 PM (which is the same)
--Back on the levoquin b/c there was some strep that grew out of one of the cultures.

So we will see what happens Monday. We could do another IV course (GRRR!), or we might have to talk to Dr. G...who knows. We'll see. But at least I'm OK this weekend.

Bronch 101

So one of my friends Andrea asked me today precisely what a bronch entails. I thought since I talk about them so often here, an explanation might be a good idea. So here we go.

Basically a bronch is a way of seeing what's really going on inside the lungs. A basic bronch is with "lavage," which is a fancy way of saying they squirt a lot of saline in there to loosen up secretions and suction out some for sampling. It's kind of like a lung car wash. They take about 45 minutes. A bronch w/ biopsy also involves lavage, but the 'biopsy' part involves the taking of a bunch of small pieces of tissue to test for rejection and stuff like that. So we check secretions and tissue pieces to get a full picture of what is going on down there. Post-tx, they are done at 1 month, 3 months, 6 months, 9 months, and 1 year, with yearly ones after that, and whenever one is warranted. I've had three in the past two months, so it's a good thing I like them. As far as testing goes, they are not bad.

You are NPO (Latin for nil per oram(l), "nothing by mouth") at midnight before the exam. This can be tricky if they randomly decide to do one, but they basically just tell you not to eat or drink from that point forward. You want your stomach empty so it doesn't, um, "empty" itself during/after the procedure. It's a 23-hour admit, so if it's scheduled you end up going to Admission around 7 am, check in, and go to a room to wait for them to come get you. Blood is taken ( for my drug levels and such), a pregnancy test is done, and usually around 9, 10:00 one of the RTs or the nurse on the floor takes you down to the bronch suite. Now we have a brand-spankin' new suite, which I wrote about in a post below. It is awesome. (Note: now they might just admit us to the bronch suite, since there are pre/post procedure rooms. Not sure.)

A bronch involves a lot of personnel: 3 RTs (respiratory therapists), a nurse (or two--usually now it's just Julie), Dr. A, and the pulmonary fellow or someone else (this time, it's been the fellow, named Steve. He and I are getting very chummy.). And, of course, I'm there.

The procedure starts with the RTs attaching little monitoring probes to your chest: one for your heart, and the others monitoring reps per minute and breathing. You get a SAT monitor on your finger and a blood pressure cuff which measures your BP every 5 minutes. This information is broadcast on two little TV screens at the foot of the gurney. You get a nasal cannula with about 2L of oxygen running through it to start, although sometimes during the procedure I've gone up to 4, depending on coughing and stuff like that.

Once you're all rigged up, you're strapped to the table, arms and legs, so you don't move or try to remove the scope or anything fun like that. You kind of feel like Frankenstein's monster. After that, the fellow has usually arrived, as well as the nurse, and the fun parts begin. The fellow starts to numb your throat with a very nasty-tasting spray so that you can't feel the bronchoscope as it goes through. There are about 4-5 sprays of about 5-10 seconds each, and it's kind of nasty. Sometimes, though, they do this once you're sedated, so it's all good. Concurrently Julie will be giving me fentanyl and versed through my port. The first is for pain (I usually get about 300 mg) and the versed is so you don't remember the procedure (6 mg). It's a great cocktail, let me tell you. I like to be out, or out soon after, my throat is numb, because it's a very odd/panic-inducing feeling to not be able to feel yourself swallow. Do not recommend it. The "happy drugs" are not administered all at once--it's about 3 or 4 separate injections, so you nod off gradually, which is nice. I usually feel pretty loopy. For a bronch they don't want you completely out, because you have to be able to follow commands when they give them, but they don't really want you conscious, either. I believe it's called the "twilight" state. But I'm usually pretty easy to sedate, so I go to sleep very nicely. I also bare my soul during bronchs and say some interesting things, so it pays to be present for them. :) Considering that all bronchs at Children's are taped, I bet there's some pretty interesting stuff on my tapes....scary thought.

Anyway, once I'm out, they start the actual procedure. I may or may not have seen Dr. A before we start, usually not. It takes about an hour, and then you go to one of the post-procedure rooms to kind of wake up. When you've waken up a bit they take you to the floor where you continue to shake it off. Once you're coherent enough, you have to swallow to prove your gag reflex is back, and usually eat something. After all that, they will discharge you, unless there were problems, but I've never had any. You can't drive for 24 hours post-bronch, and it usually takes me about 36-8 hours to totally shake off everything. You sleep really, really well following this procedure, let me tell you.

So that, everyone, is how a bronch works. Great test--happy drugs, you get to sleep, and you get good samples for testing. So yay!

housekeeping

This weekend I will be upgrading my internet browser so that I can have some new features on the blog, like links and long-quote formats, to make it more user-friendly. Hopefully this will work out for all of us!

So it goes...

So yesterday I went in, we did blood, CXR and PFTs. Well the PFTs were down five points, which isn't happen, and the DLCO was down even more than that , which also wasn't happy. That, plus the shortness of breath and fast heart rate, and other things, led to another bronch! Woohoo! But this time it was in the nifty new "bronch suite," which has two bronch rooms and 7 or 8 pre/post bronch rooms, with TVs and stuff, which are really cool. We have come a long way from the broom closet that the bronch suite used to be. And I'm serious about that. It really was the size of a closet; I kept expecting a janitor to come in looking for mops, or something. So we did that, spent some time on C5 until I was reasonably coherent, and then I came back here and slept. I had two bagels yesterday--that was my entire food consumption. I'm obviously not at work, which is a good thing b/c my blood sugars are all nutty and I've got a big headache, plus sleeping is still really, really high on my to-do list.

So here's the plan--if it's still infection, then we just have to come up w/ a better way to treat it. If it's rejection, since we've already done 2 steriod courses, we might change the Imuran to another drug. Sometimes that's all it takes. If we still can't tell, then I might have a date w/ Dr. G, who can do a more "surgical" biopsy and remove a nice big piece for us to look at. This will require some "resort time" since a chest tube (ugh, ugh, UGH I hate chest tubes!!!!!!!) will be involved,but it would give us some definitive answers. However, Dr. A felt we should do one more regular bronch before we called in Dr. G. So we'll see. I am awaiting a phone call to let me know what's what. I sure do a lot of waiting by the phone....

Update time...

As you can see from the post below, I am going to Shangri-la tomorrow. May have bronch, may not. Am NPO after midnight--oh the joy!! Better stock up now....ha ha.
I will let y'all know how it goes...

I'm not crazy!!

One of the things I hate about doctors, health care workers in general is the tendency to move things to the "it's all in your head" category when they can't find a real reason for your pain, problems, etc. Now, granted, some things might be psychosomatic, meaning that you are, mentally, causing them to happen, consciously or not. But I know my body. I've been around the block a few times. I know when it's my head and when it's actual physical symptoms.

Case in point--the last few days, my heart rate has been really high, like 150. That's a resting heart rate. Normally my resting heart rate is like 118, 120. 150 is what I try to hit when I work out. So this is not so happy. I've also been having recurring chest pain (again), shortness of breath (again), etc. So I called High Command today and we moved my appt. from Monday to tomorrow, which I like. But at one point someone asked me "are you nervous? Are you OK?" and it's like, "Um, hello!?" Now I know that the person was being solicitous and really wanted to know. But so many times it just gets shifted to, "oh, it's all mental. She's worried about something so she's flipping out and this is what's causing everything." Um, no. Last night I was in the middle of dinner with my friends, talking about the Oscar race, and I got chest pains. I so wasn't even thinking about it. Stress, of course, comes when you are sick and you don't know what the heck is going on with your body, or when it's going to get back to normal. It's a vicious cycle. But I know when I am just freaking out and making myself all twitterpated and when my body is doing it of its own accord.

Update time...

So I went to the resort today, and I didn't have to stay for torture! Yay!! I am going in on the 29th for an appt. and potential bronch, which means I have to go NPO, which doesn't make me happy, because if we don't bronch, then my first order of business post-appt. is breakfast. Which I will have to get at work. And will throw off BSLs, probably. oh well.

But anyway, back to today. PFTs holding steady, although my FVC (forced vital capacity, which I think measures the total amount of air you take in in toyr lungs) was 67, which is up a ton from last week. Go me!! The FEV1 (how much air you blow out in 1 second) was 56, which is about the same as last week (55). Weight is the same (whew, last week was a really bad eating week so I was worried), and the CXR looked OK. There are still some crackles in the lower lobes, but (!) we have reduced the evil aerosols to only once a day, yay!!

So the 29th will be innnteresting...hopefully nothing exciting (on this front, anyway) happens before then!

Tomorrow...

I go to The Resort for the weekly check-up at 8:00 (at least I get to sleep a bit! Huzzah!). So far, we've got labs, CXR and PFTs scheduled, and hopefully Dr. A won't want anything else! I will be the only one in the office tomorrow so I need to be there and not on a guerney in the Bronch Suite. But I will let you know what happens...good thoughts!!

You Gotta Have Friends

One of the most important things I learned, both pre- and post-tx, is the importance of a good support system. Now this might sound like some psychobabble, but its importance cannot be underestimated. Without a core group of people that you can depend on for various things, from helping with grocery shopping to just coming over and listening when you're having a meltdown, these folks are very, very important. They're so important, in fact, that having or not having one is an important part of the transplant evaluation, because if you don't have people to help you, you can (and probably will) be so overwhelmed after transplant that you won't be able to care for yourself properly. And that's no good since it jeopardizes the success of the transplant.

I have been very fortunate on many fronts. My family, especially my parents, have always been fantastic when it comes to dealing with meds, talking to doctors, and getting what we need. That doesn't mean that we haven't had our moments--far from it. There have been plenty of swearing, yelling, throwing things, and generally questionable practices. :) But my family has always been on top of getting the meds, taking me to appointments, and making sure we (OK, I) was really, really compliant. That's very improtant when considering transplant, because if you aren't compliant before, what indication does the center have that you will be after? My younger brother and sister were also great, even learning to mix IV drugs and give me the meds when my parents couldn't do it. I've seen plenty of families where the parents are not interested at all in their child's care, with bad results. I am very fortunate that I was not one of those kids.

Secondly, and maybe even more important, are my gerat friends. It can be so hard to find people outside your family who are willing to befriend someone who isn't "normal." But in grade school, and, later, high school and college, I was blessed with great friends who were willing to be buddies and take on all my issues in stride. Tiffany, Branden, Milia, Troy, Tom, Sean, et al. , have been particularly great and I want to thank them. Now if you've read my post about the roomie from Hell, you know that this is often not the case. But these guys are awesome. I can test my blood sugar in front of Tiff, have IVs given, whatever, and she doesn't bat an eye. That is so valuable in a friend. They've come and visited me in the resort, come over when I've had IV drugs to do, and been very compliant whenever I couldn't drive or if I had to leave a party early to do drugs. Sure, they weren't perfect, and there were times they would "forget" I wasn't normal, but that's better than it being a constant reminder.

So many people do not have the capacity to deal with those of us who are not "normal." To paraphrase As Good As It Gets , it's often a "bit too much reality" for everyday. Being friends with someone who might die is hard for people. It's disconcerting to visit a 15 year old in the hospital and see IVs and such, but it can be even more jarring at home, when syringes are in the fridge next to the Coke and a sharps box is next to the trash can. Some people were incapable of providing the emotional support I needed, especially as I got closer to transplant, and could do less and less but needed people more and more. It was scary and I needed others outside my family to talk to, since my family was just as stressed as I was. And I was their daughter/sister--I couldn't be completely open with them. I felt a strange desire to protect them from how I really felt, something that's not all that uncommon among people with health issues.

I am so grateful to all these people who have been my supports. I don't know what I would have done without them. I never taken them for granted and I am so lucky that they were there--and continue to be here--with me as I go along this road. Without their support it definitely would not have happened.

Finally....

a really, really good weekend, Noah's Flood notwithstanding!
I actually felt good this weekend, which was helpful because David was here for the first time since the first weekend in December...it had been way too long!!


Friday I made an awesome apple "tatin" thing from Ina Garten (aka The barefoot Contessa), which is so divinely good I will never eat apple pie again because I can have this. Branden, Andrea and Tom came over and they wanted to the eat the tart, but I said nooooo because I was saving it in case David wanted any. (As usual, he didn't. He's really not a dessert guy. But oh well) It was nice to be able to have people over and not feel like I wanted to fall asleep!

Saturday I managed to get some things done around the apartment (I was like freakin' Martha Stewart, I'm telling you) and David came around dinnertime. I made a great Greek dinner--tomato and shrimp casserole (more like a really good stew, it's so yummy!), pita with tzatzki , a sort-of yogurt dip with mint and cucumbers that is sooo good, and asparagus with lemon and olive oil dressing. So that was really yummy. We also watched Thank You For Smoking --if you haven't seen it, you must, because it is great! Aaron Ekhart plays a lobbyist for the tobacco companies who is also trying to impart moral living messages to his impressionable 10 year old son. Great cast including Maria Bellow, Robert Duval, Katie Holmes (before she became Mrs. Cruise, she is really enjoyable in this film) and Rob Lowe as a hysterically funny Hollywood producer (great scene in a kimono).

Sunday we went to Mass (duh!) and had lunch at Longhorn (mmmm steak...well, for David), hung out at my parents' house while we did laundry, and then came back here. Sean, Andrea, Tom and Branden came over and we had pizza, watched Desperate Housewives and played my new game, Imaginiff?, which is like, "Imaginiff Emily was a road sign, what kind of road sign would she be?" and you get 6 choices. Then everyone votes. It's quite nice. The funny thing is, it's based on how well you know people, and David won. He's met everyone, um, once, and we've known each other for going on 10 years. Go figure. :)

David left around lunchtime today and I've got choir tonight. But it was nice to have a normal weekend for a change!!

Way too true....

From Dream Mom, a new blog I've discovered. She's talking about treatment options for her son, who has a variety of medical problems (read the blog for more details, http://dreammom.blogspot.com, I think):

The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.

That is so true. We meet ours every year, usually around August. It's good, because then everything is covered after that, but sad, because that means you've used a heck of a lot of money on health care.

Back to work...

Gone to work two days in a row, woohoo! And haven't left early! These are good things. And since MLK Day is on Monday, I get an extra day off. Yay! My next Dr. A appt. is on Thursday, so we'll see what happens then...


Trying to ease back into the fitness routine. Have done two strength routines and some stretching, which may sound wimpy by stretching is really important for me. For one, I have, in the words of one of my PTs, the "tighest hamstrings [she'd] ever seen," so I stretch them regularly or they get really cranky. I also do a yoga routine to focus on them (as well as other parts of my body. I really like yoga and pilates. I'm probably a geek :-D). I also do hand stretches and strengthening exercises on my right hand, which had the skin graft post-tx. While the new skin is still growing I"m trying to keep up the range of motion, which is very important for the piano playing and just working in general. So far I'm doing pretty well, and I think part of my short of breathness is the fact that I'm just weak. It'll be a little hard to get back to where I was, but I 'm going to try. I definitely want to get a yoga workout in tonight. Going back to work has also helped, although it makes it harder to eat better because of all the temptations around.

On the BSL front, I'm doing carb counting now, which means that I should have to take less insulin, which should also help my weight. Some of the levels are still wacky but I'm pretty sure the vfend and other drugs may have something to do with that, too. We'll see what happens there...

Two steps forward...

and like 1 1/2 back...

So I go to clinic yesterday, feeling really, really tired, like the air is gone from the balloon, and I'd been having chest pain the night before. So sleeping was fun. Do the normal--blood, CXR, PFTs. PFTs actually dropped a little but the CXR OK. I am really frustrated because I didn't know what was going on. If the steroids are supposed to help then shouldn't they be helping ? Shouldn't I not feel like crap? Dr. A said this was normal, and I'll guess I'll have to take his word for it, but I don't like a normal where every day/ every few hours is decided by how I feel. That's not cool. Because I was still having pain we did a CT with contrast. DO NOT put contrast in a port! It doesn't work, it just gets really really puffy and sore! So I had to go to infusion and have them try to put a peripherial line in (God bless Valerie who got it to work), and it's 1:30 and I'm hungry because I can't eat anything until the stupid scan is done and I'm all winded from traipsing around CH with my stuff, so I am about ready to fall apart. GRRRRR. We finally get the scan and I went home, ate a burger, slept, ate cereal, watched 1 quarter of the OSU game, and went to bed at 9:45. Yes, 9:45. And guess what? Slept like crap, again. Cannot win. So no work today, but I did manage to find a patch of decent time to go grocery shopping and get jeans that fit, because I am (yay!) losing weight and my old jeans are just falling off me. It was totally time for some new ones. So that was a bright spot, at least.

Am feeling OK now and will hit the work desk tomorrow. Hopefully nothing else crazy will happen...

Done!

With the steroids for now, that is....we'll have to see what Dr. A rules tomorrow post blood/CXR/PFTs. My oxygen sats have been OK (they were 98% when I checked this morning), and the heart rate seems OK, so hopefully we might have turned a corner. Of course I slept like crap last night, so who knows. Steroids do such bizarre things to your body it isn't even funny. But the blood sugars also seemed OK this morning, not the 300 something it was yesterday before breakfast! Yikes!!! So we'll see how the day goes. I'd like to feel OK today because I have grocery shopping to do and that's not fun if your body is kicking your butt. So we'll see...

Donation record set in central Ohio!

Today's Dispatch had a story about how organ donations in central Ohio (LOOP's territory) topped 100 last year, beating the old record of 86 donors in one year. This is great--thanks Ohioans!

But, it emphasizes how much more work still needs to be done. Over 70% of people think that donation is a worthy goal, yet so few people actually do it, or have their wishes followed by their families. Please, please if you haven't already, take the time to hop over to Lifeline's website (link on right!) and register. If you have already, get your families to. It makes such a huge difference in so many people's lives. I know I've said this before, but I'll keep saying it! Slightly more than 100 people donated last year. Can we top that this year? I hope so, because it will save so many people, and keep so many huysbands, wifes, sons, daughters, friends, cousins, nieces, nephews, etc., alive and bringing joy and happiness to so many people. There is nothing like the feeling of new life you get after transplant. It is remarkable. Please help spread that feeling!! Besides, you aren't going to be using them!

Steroids, round two!

Today's bout was not as bad as yesterday--the weird taste is not so bad, and the tremors/ tiredness as not as bad as yesterday. My face is really flushed, however, and feels warm, so I hope I don't have a fever. The nurses took my temp at the end of the infusion and it was OK, so I don't think that's it.
The only real issue is that my lower lobes (the bottoms of your lungs) are really, really sore. Julie and I think it's from the coughing from the 1) bronch and 2) the aerosol drugs. I am getting up a lot of stuff, mostly from the bronch, which is good, but it also hurts. Doing the aerosol also hurts because it's opening passages that are 1) already open to the point of pain and 2) causing more coughing, which leads to--you guessed it!--more pain!! woohoo! But as long as it doesn't get too bad (it's about a 5 on the 1-10 scale), I'll be OK. Julie did say to call if it gets worse. And the shortness of breath is still an issue, but hopefully we can start to see some changes there.
Last (hopefully!) infusion tomorrow but it's at home (oh lovely Children's Homecare nurses!) so that's good, and it's at 1:00, which is also good. My port behaved today and we didn't have to re-access so I hope it does the same tomorrow. it's been a real bug-a-bear lately.
Sats, last time I checked, were 98 and my heart rate seems to be settling down. It was really high (like 150, 140) after the treatment and now it's about 122, which is still high but not as high. So I'll take that. And my blood sugar levels are all wacky, but I'm doing the best I can--that is totally because of the steroids. Oh, the joy. I see Dr. A again on Monday so hopefully things are good!

But!

An unexpected benefit of the steriods is that ice cream is really one of the only things that gets rid of the nasty taste. But I don't want to eat so much that I lose any ground I've gained weight wise (you know, I really hate talking about losing weight. I really, really do. Why can't I have good lungs and weight 115 pounds or so? Huh???). So it's a dilemma. But I do have to eat something. So ice cream and cookie crisp (cereal works well, too, as does oatmeal, I would imagine. But that's tomorrow's breakfast).

Post-infusion tremors have set in pretty well so my handwriting looks a bit suspect. Times like this I really, really love computers. Oh well. At least I'm going to be now so it's not like I have to do anything for the next seven + hours...huzzah!

Back in the trenches!

I have at last returned to work!! Yeehaw!! Even though I had to leave early (12:45) to get the first of three consecutive steroid infusions, I didn't mind. I was at work and being a productive member of society. I was wearing nice clothes and make-up that actually mattered. It was great. :)

It turns out that, under the infection (which I had), I also had "mild acute rejection", which basically means hit the body with steriods until the white blood cells calm down and go back to ignoring the fact that my lungs don't, technically, belong to me. So we're doing 3 steroid infusions, about 2 hours each, to make this happen, we hope. I go back to see Dr. A at 7:30 on Monday so we can see how we're doing. On the infection front, I am feeling a lot better there. The cough is better (mins the residual bronch/biopsy coughing, which goes on for awhile, since they like to really rummage around down there), the nose is better, so these are good things. The oxygen sats are still kind of bonkers but that's probably due to the rejection and not infection. It goes up to 98% or so, you just have to wait a little bit for it. It's like the Little Engine That Could, or something. So that's that. But hopefully we are on the right track now. Wooohoo! And tomorrow is already Friday. Beautiful, eh?

The bad thing about the steriod infusions is that you have the lovely metallic taste of steriod in your mouth the rest of the day. It starts about 45 min.-1 hr. in and then you're stuck. So I ate lunch before then, thankfully. The other thing is that your body really like steriods--it makes joints and such really happy. So when they stop them, things get cranky. Not looking forward to that so much. But since it's only once a day, and not 4x a day for almost a week like it was when I was an in-patient, I'm hoping it's not so bad this time. We'll see...

Way to start 2007...

with a day at the resort! I had hoped to go back to work today, but nooo, probably not until Thursday at the earliest now.
I had an appointment at 7:30, NPO in case Dr. A wanted to do a bronch. So we do labs, CXR, PFTs (57% today, up 3 points). We do the DLCO (also up, I forget by how much). But Dr. A wants to do a bronch, so we get set up to do that, started around 10:30. They must've done a lot of digging because I'm very sore and felt congested afterwards, but the nurses/Julie/Dr.A told me that they put a lot of "wash" (saline) down there to get samples so that's probably why. I didn't wake up on C5 until probably about 2, 3:00...must've had a lot of good stuff, let me tell you. :) So we're going to see what "grows out" of what we took, and we may do a 3-day 2-3 hour steriod infusion (outpatient) if we need to. We also re-started the Levoquin.

Whew, so that was fun! I came back to the apt., slept, and then my parents came over around 8 to make sure I took my drugs and to see that I was OK, because I was kind of not so OK when I came home--nauseous, etc. But I feel OK now.

On the plus side, I lost 5 pounds! Woohoo! So I guess this whole "let's eat better" thing is working. Or maybe it's because I've got my energy back and I'm moving. I don't know. But I'll take 5 pounds. Although it is still so weird to talk about losing weight as a good thing about 11-12 years of it being verboten . Very odd. I still have to get my mind around all this.

Happy New Year!

Some updates:
OK, I lied...we're still on 2x/day aerosols. Grr. But at least it gives me time for reading..I read the whole LOTR trilogy in two days while doing them!! (for more see the CPG blog). Seeing Dr. A tomorrow at 7:30 (oh the joy!) for blood, CXR and PFTs. If everything is well, I skip off to work! If not, we wil either do : 1) a two hour (grr) infusion of steriods in the infusion clinic or 2) a bronch! Oh the joy!! I am hoping everything is good! My home sats have been about 98, which is good, and the PiKo numbers ( a thing that measures FEV1s that I can do at home) have been OK, too. So I hope things go well tomorrow because I want to go back to work!!

My resolutions:
1) Spend more time on my writing
2) Actually work out 3-4 times a week like I'm supposed to. I will hopefully get started on that today. I want to improve my time for the LOOP 5K in July, so I better get cracking!
3) Stick to a budget...at leasty until the first Coach bag sale at Macy's....sigh.