Sunday, August 27, 2006

Long days and short nights

So while I had all these things going on during the day, there were other things that happened, too. This is probably more of a hodge podge entry, but here are some of the things I remember...

-Fr. Mark came around a lot. He had Wednesdays 'off', so he would come by and watch movies. One night we watched Phantom of the Opera which was a lot of fun. Would've been more fun if I'd sung along but I didn't want to wake up everyone. Hah hah. He also dropped by a lot during the day, which was nice.

-I got a ton of cards. My room looked like a Hallmark store, and I stil have them. They were great!!

-Eventually the walking got better. I actually started picking up my feet and walking like a normal person. :) But there were still days when it was hard to do. It's amazing how completely your body can abandon you.

-Eating was sort of a hit or miss proposition. The plus side was I could eat whatever I wanted as long as it would stay down. Maybe we should've done a stomach tx at the same time....hmm.....

-my friends came; Maggie, Michele and Aaron from work and the h.s. buddies. Branden was amazed that I could stand up and walk...he was pretty funny. I liked having them around and as I got mentally stronger and could focus longer they stayed longer.

-I caught up on all my old TV shows. Every day I could watch Family Matters, Step By Step, Full House (sometimes 4 episodes in a day!), all the old TGIF shows. Awesome. :) Of course I also had to sit through about 1000 viewings of Harry Potter III because it played constantly on the in-house movie channel. Grrrrr.....

-Eventually I started doing PT in the rehab gym, which was a lot better, because then I got to see other kids and many of them were just adorable. You ever want to complain about something, go down to the PT gym and you won't want to any more. Those kids are warriors, man. They are awesome.

After a month on the floor, I was getting ready to go home. I wanted my bed, I wanted real food, I wanted to go home. I'd been in the hospital long enough. Dr. A was awfully slippery about a release date....

Thursday, August 17, 2006

Boot Camp

So, I believe it was about 6 days after the tx, that I moved down to 6AW, aka "The Heart Center," where they were temporarily stashing all the tx patients until we got our own floor. The Heart Center had all the special monitors we needed and huge rooms (which were great)...I'm talking a room the size of a college dorm room. I had a mini-fridge, two big cushy chairs (dad loved that), and the rest of the normal hospital stuff. The reason they're so big is because they used to be double and triple rooms, back in the day, but now they were mostly singles. At least all the tx rooms are singles, because you don't want any germs after transplant. Everyone had to put a mask on and nurses and such had to gown up. Everyone looked really, really good. :) (lol)
So once I was down there, I thought "all right, here we go, just gonna kind of hang out." Oh, wrong. SOOO wrong. Not even close to being right in any estimation. No way. This was high-intensity boot camp, kids.
My days usually began at 6:00 a.m. Yes, 6 a.m. Now I am not a morning girl. Never have been. So this was not fun. At all. Especially since we were just taking a trip down to radiology. For like the first day or so I got rides down. But PT started immediately, so then I had to walk.
Let me explain why this was an issue. After transplant, just sitting up is a big accomplishment. Your chest feels so heavy that it's weird. For me it wasn't painful, it was just a lot of pressure. So then you try standing up. And walking isn't even walking, it's more shuffling along. Now I will give them props and say I didn't totally walk down unescorted (i mean, without someone even brining a chair) for two weeks or so. It was a awhile. But it wasn't a lot of fun. especially at 6 a.m., when I'm thinking, 'um radiology is open all day . Why do we need an x-ray at 6:00!?' (especially since Dr. Astor won't even be in to see me until 11????) But there was no room for discussion.
So every morning, CXR. Then the nurses would be magnaminous and usually let me get back in bed until the breakfast trays came. Getting into bed wasn't real graceful, it was more like flopping into bed. But I wasn't going for style points here.
Karen, after a day or so (if I even got that long of a grace period) taped a schedule to the bathroom door that I had to follow quite rigorously. It was like law. It included fun things like:

--Sit in chair after breakfast
--PT at 11 (which includede various things)
--Walking around the wonderfully landscaped 6AE four times a day with some unwilling victim. :) (Usually Karen, another nurse, PT, or Rita....yay!)
--do some crazy breathing treament
--have RT come up to do PT...even though I didn't technically have CF anymore they still wanted the chance to beat on me. :)
--more sitting up!
--eating...lots of eating
--IV therapy
--and the best part....massage therapy, woohoo!!! Because your joints and muscles get really, really cranky.

Kathy, my psych, would come most days, as would Dr. M and Teri (who even brough us Cosi food! Yay!), and Fr. Mark, bien sur . So it was good, some of the time. But it was very, very regimented. I was totally not used to that, because on the CF floor, when you're admitted, you just kind of lay there because you really can't do anything else. Sleeping is a big part of the day. Thankfully I was allowed to nap in the afternoons!

Tuesday, August 15, 2006

A little more coherent

Coherence, in the CICU, comes one day at a time, and you're not totally aware it's happening. While I wouldn't say I was totally with it while in the CICU, I was certainly much more lucid by the time I was discharged; lucid enough, in fact, to be a bit, well, stubborn. :)

Part of the therapy in the CICU is working with a Bi-PAP machine that helps expand your lung capacity, since you're not really breathing deeply and all that while you're in the CICU. Heck, you're hardly out of the bed. Now I know that it provides a very important function, yada yada yada, but I hate it. Really, really hate it. I hated it when I was in the ICU in 2001 and I hated it now. It resembles an oxygen mask except it's got like a Darth Vader vise like grip on your face, so that's really irritating, and it's hard to sleep with it on, because it's uncomfortable. Eventually I figured it out. (Like I said, I can sleep through most things.) The RT would always tell me how long it needed to stay on, and buddy, I watched the clock above the sliding-glass doors (which makes the CICU feel like a fishbowl) and I knew when time was up. I was able to stay sane exactly that long.

Well one night the RT came in and decided that we'd go a little longer. By now I had regained some strength and was able to manipulate the mask to give my face a break occassionally. Well I kind of threw a fit (yes, me a 23 year old). There was no way it was staying on any longer than absolutely necessary. So we went back and forth for awhile until Michelle, Savior of the World, came in. The RT explained the situation. Michelle stood there, glared at her, and said, "You told her two hours. Two hours is over. She's fine." She is sooo my hero (OK one of them). That was just awesome. And as we can see, I have suffered no awful lingering side effects from this unconscionable breach of etiquette.

Like I said in the last post, you have to actually practice fun things like sitting up! And going to the bathroom! And feeding yourself! (Which, for me, really didn't happen due to the hand) Speaking of the hand, it was bandaged in this huge swath of white gauze from the base of my fingers to about my elbow. I had to keep wiggling the fingers, even though they didn't do too much, so they didn't resemble overstuffed, purple-y sausages. Such is life. But it was OK, and we were starting to make progress. The cool water that was poured over it in copious amounts several times a day was a great thing, let me tell you. Speaking of water....I was thirsty as all get out. After lung tx, they keep you dehydrated because your lungs are sapped with fluid (I was even on a diuretic, which, let me tell you, was a lot of fun, especially when getting to the bathroom is like an Olympic event), so you can't drink anything. For days . And when you can drink something, it tastes funny because of all the saline and IV drugs in your body, which throws off your taste buds. So I would crave something, like Coke, and then I'd get it and it would be totally weird. Very disappointing.

The other weird thing about the drugs was I heard things that weren't there, like birds outside the window and the same Whitney Houston song playing over and over in my head. Yes, for some people that would be torture, but I like "The Greatest Love of All" so I was OK with it. And it didn't happen all the time. :) I even managed to read Harry Potter!! (Did I mention that before? Oh well, it's worth mentioning again because I'm proud of that, darn it.)

I believe I spent about a week (give or take a day) in the CICU before I was stable enough to move to the Heart Center. (6T, for you Children's kids... well, at least it was then. Now it's 5C in the new building and it rocks. But I digress.) Then the real fun began!

Saturday, August 12, 2006

For Catholics...if you were wondering

What the Church's position on organ donation is, here you go:

Catholic teaching on organ donation

By Rev. Larry Hostetter

In the April edition of the WKC the ethical implications of organ donation were raised. Given the importance of this matter, I would like to offer several clarifications from the perspective of Catholic moral teaching..

1. Organ and tissue donation is heroic and praiseworthy. As an act of charity, organ and tissue donation have repeatedly received magisterial support and encouragement. Indeed, Pope John Paul II in the encyclical Evangelium Vitae lists organ donation among "heroic acts," stating that, "A particularly praiseworthy example of such gestures is the donation of organs, performed in an ethically acceptable manner." (86) Equally clear in its affirmation of the goodness of organ donation are the Ethical and Religious Directives for Catholic Health Care Services, published by the National Conference of Catholic Bishops. Directive #63 states: "Catholic health care institutions should encourage and provide the means whereby those who wish to do so may arrange for the donation of their organs and bodily tissue, for ethically legitimate purposes, so that they may be used for donation and research after death." The teaching is thus clear: organ donation is morally permissible.

2. The donor must be dead before organs and tissue can be harvested. Equally clear in the church’s teaching is the insistence that respect for the life of a potential donor is maintained. In directive #64 of Ethical and Religious Directives we read: "Such organs should not be removed until it has been medically determined that the patient has died. In order to prevent any conflict of interest, the physician who determines death should not be a member of the transplant team." Clearly we should be concerned that organ donors will not have their lives interrupted prematurely. That the pope is also concerned with this question is seen in an address he gave to the Pontifical Academy of Science in 1989. In this address Pope John Paul states that given the difficulty of determining the moment of death there is a danger of prematurely taking someone’s life in an effort to gain a transplant organ. He called upon the academy, which is composed of eminent scientists from various disciplines, to examine this question.

This question attained a new urgency with the advent of technology that could keep a person’s heart and lungs functioning artificially. Traditionally death had been defined as the irreversible cessation of the heart and respiration. Now, new technology demands a more precise definition. While the traditional definition is sufficient in most cases, how does one determine death in the case of an individual on a ventilator? From this question arose the definition of "brain death" as the determination that death has truly occurred, making it possible to remove any organs for transplantation. As seen, however, in a recent letter to the WKC, the definition of brain death is not without controversy. Some question whether brain death is a valid determination of the death of a human being. After all, someone may be brain dead but continue activity associated with living, such as heartbeat and breathing.

3. The determination of death is left to medical experts. The reason the Pope consulted scientists on this matter is that it would be beyond his own expertise to scientifically answer the question, What is death? The Church, therefore, does not make any specific statement regarding the legitimacy of medically determined criteria for establishing brain death. This respect for the competency of science and medicine to answer questions in their own fields is a hallmark of Catholic medical ethics. This is seen as early as 1957 when Pius XII in "The Prolongation of Life" stated that the determination of death in such situations "does not fall within the competence of the Church." He stated that it is the physician who offers the final determination of death. (See, The Pope Speaks, 4: no. 4, 1958, 396-398.)

For this same reason, the present pope placed the question before the scientists of the Pontifical Academy of Science. What then were the conclusions of the Academy? The Academy stated that death occurs when "there has been an irreversible cessation of all brain functions, even if cardiac and respiratory functions which would have ceased have been maintained artificially." (See, Furton, Edward, "Reflections on the Status of Brain Death," Ethics and Medics, Oct. 1999, Vol. 24, No. 10, 3-4.) Hence, when the whole brain is dead, the person is considered dead, despite the fact that "residual cellular activity" may continue, either in the brain or other parts of the body. (Ashley, Benedict, Kevin O’Rourke, Health Care Ethics.’ A Theological Analysis, 4th edition, 1997, 403.)

The question remains, however, of the criteria for determining that brain death has occurred. This too is a medical question that should be decided by experts in the field. In Kentucky the definition of death is the same as that of the Academy, the "total and irreversible cessation of all brain function, including the brain stem." This must be verified by two physicians. (Kentucky statutes 446-400.) Various tests are conducted to make a determination that the brain no longer has the capacity "to integrate and coordinate the physical and mental functions of the body." (Furton, "Reflections," 4.) Again, the Church does not determine what those tests should be; that is left to the experts in the field of medicine.

Given these considerations, Catholics who desire to be organ donors upon their deaths should have no fear in performing such a charitable and heroic act. Edward Furton, the editor of the National Catholic Bioethics Center publication Ethics and Medics, offers the following conclusion: "Although no definitive judgment has been rendered, one may safely conclude that Catholic physicians may, in good conscience, employ brain death criteria in their determination of death. Similarly, Catholic patients may agree to give or accept organ transplants on the basis of these same criteria. If the Vatican should ever express reservations to the use of these criteria, it will likely be preceded by a widespread rejection of brain death by members of the medical community. There are voices calling for a rejection of these criteria today, but they would appear to be in the minority. (Furton, "Reflections," 4.)

Rev. Larry Hostetter, STD, is Assistant Professor of Religious Studies, Brescia University, Owensboro, KY

Tuesday, August 08, 2006

Some time later (OK, like 3 days?)

OK, so now time gets a wee bit fuzzy...thank you, wonderful, fantastic epidural drugs!

The surgery lasted 12 hours (I still hold the record for the longest single tx surgery at Children's, thank you very much), due to all the scar tissue and such that they encountered. While all of this was going on, my dad had the job of calling my friends. I had given him this job so he wouldn't be pacing the waiting room every 15 minutes driving everyone mad as he is prone to do. He called Branden, Tiff and Milia, and my boss, and the family. Branden took care of the rest of the world. :) (jk, Branden) Tiff was on vacation at Myrtle Beach (or somewhere in the Carolinas), and I had told her that the surgery usually took 4-6 hours. Well, when she didn't hear back, she panicked a bit, and didn't realize that my dad had resorted to the mass e-mail list I had created for him to update everyone very easily (he's a computer guy, this is easier). Eventually I believe Branden told her, no, I was not dead, the surgery just took longer than usual. Bryan and Melanie amused themselves by playing cards with Fr. Mark. People came out (Karen, I think) and updated them on what was going on so they weren't totally in the dark. The surgery was started by Dr. Terrance Davis and finished by Dr. G, who arrived after we'd started with the lungs. I have a photo in my bedroom of that moment--Dr. G coming in the OR, all scrubbed up, toting a Coleman cooler behind him with "organs for transplant" in bright red on an orange piece of paper taped to the top. Let me tell you, I don't look at coolers the same wayt anymore. A nurse is on the phone behind him, and I swear she's really ordering like 12 pizzas, or something. :) Later, the mat around the photo was signed by all the tx people: nurses, Dr. A, Karen, "God", Kathy, 4AE people, Tiff and Milia, my got nutty.

After the surgery was done, Dr. G, Dr. A and Karen came out to talk to my parents. The lungs were fine, but my right arm wasn't. Apparently one of the IVs had infiltrated during the surgery and burned my lower arm (like 2nd degree burns, I think), so they were worried about its' viability (I'll leave you to infer what that means). Obviously, no one was happy with this development, but by the time I had really come to, we knew the arm would be fine, so I didn't really worry about it. Another great thing about drugs: you really can't worry about anything. Someone could tell you the world is ending, and you think," Really? OK. Whatever." "Whatever" is a big catchphrase.

I was moved to the CICU and was still on the ventilator until 48 hours later (I think). The scary thing? No one went home . Medically, I mean. Bryan and Mel did, and I think Mom did at some point (I obviously don't know), but Dr. G, Dr. A and Karen stuck around for essentially 2-3 days straight. Major, major kudos. Major. My vent was pulled 48 later--apparently my first words were "this feels wonderful!" but I don't remember saying that. I didn't really come to until about 3-4 days later, I think. Not that I wasn't quasi-aware, but I wasn't really responding to anything, and I definitely don't remember anything.