- Tx Stats
- To Tx, or Not To Tx, That is the Question
- How Do I Select a Tx Center?
- Evaluation for Transplant
- The Wait
- After the Tx
- Do My New Lungs Have CF?
- OB or BO
- Post-Tx Concerns for Diabetics
- Two Experiences
- My Transplant Experience (8/97)
- Are Living-related Lung Transplants “Better”?
- Antibiotic Sensitivities and Getting Listed
- Chicken Pox Vaccine and Tx
- Fund Raising Help (9/97)
- National Heart and Transplant Assist Fund
- Organ Transplant Fund
- normal chest x-ray and pulmonary function tests
- stool and urine collection/analyzation
- electrocardiogram (heart monitor worn for 24 hrs to detect presence of abnormal heart beat)
- heart catheterization (needle/catheter threaded through vein – numbed w/ anaesthetic – in neck into heart to measure pressure in the heart and blood vessels leading to lungs). [Note that if the heart turns out not to be capable of handling a lung transplant, a heart/lung tx may be considered.] In addition (this wasn’t done for me) a heart biopsy (removal of some small pieces of the heart to check for heart disease) may be done to look for heart disease. This would be done with anaesthetic to minimize discomfort.
- exercise stress test (walk on treadmill and monitor falling 02 levels). If you’re already trying to exercise, which you should be, you are used to this.
- CAT scan of chest and sinuses and bone densitometry (lie flat on the scan bed is all that is required of patient, although this was somewhat uncomfortable since my breathing was so poor in that position)
- skin tests (injection of fluid under skin to see exposure to TB, others) – immunizations (various)
- some sort of nuclear imaging in the lung (I don’t quite remember what, I just had to breath a gas through a mask and hold my breath for way too long).
- an IV port was installed in my arm (chest for some people) due to the high volume of IVs experienced prior to and during transplant.
To have a lung transplant (Tx), one must be evaluated as a suitable candidate and listed as a potential recipient; one then begins to accrue “list time” to move up the list of eligible recipients. One report is that listing is usually suggested at about 30% lung capacity. Post-transplant, immunosuppressant and other drugs are taken to prevent rejection.
Survival rates for adult double lung transplant (International Society for Heart and Lung Transplantation web page, May, 1996):
Perhaps the most important thing to remember: “As my doctor initially told me when tx (transplant) was brought up, ‘All tx statistics are out dated.'(kinda like CF statistics now).”
“Since they’ve only been done since ’81 (and very few at that time), not enough time has passed to accumulate such data.”
To Tx, or Not To Tx, That is the Question
… A medical person reports: “As far as activity after a lung transplant, patients can live a very normal life. Many of our patients go back to a normal life within a few weeks/months after transplant. We put our patients right into a pulmonary rehab program after discharge and encourage as much activity as possible. Patient activity levels are very individualized. But, without major complications post-transplant, lung recipients can do anything they put their mind to! Hiking, biking, air travel, etc. are definitely not out of the question. However, it is a very serious undertaking and the survival statistics, even though they have definitely improved over the past few years, are still the lowest of any of the organ transplants currently done.”
… As for the Quality of Life issue, like I said before, I think the decision is MADE for us, as you’re staring down death, face to face, what is there to decide, you either die from CF, die from Tx, or buy however many good years you can get from Tx.
… I know it’s not for everyone, some people are TIRED of fighting their whole life and just don’t want to do it any more. And that is a personal decision. But I’m living proof, no matter how many things go wrong, if you persevere, and don’t even THINK about giving up, anything is possible.
… The Tx ICU nurses say CFers are the best Tx patients because we’ve been sick most of our lives, so, we’re used to it, and it’s really not that tough (the operation itself) considering what we’ve all been through our entire lives.
… Most patients don’t die from the operation itself, mainly due to post op complications. Wether it be a bad set of lungs, they never know for sure until they get them in, rejection, or a myriad of other things. It sure ain’t no walk in the park, but if all goes well, and even not as in my case, you just may be able to climb a mountain.
… I only wish that I could feel the confidence most of you speak about. It wasn’t a total shock when we found out that I needed a transplant. It had been brought up earlier by an outsider, but the doctor said don’t think about it because I was so sick at the time and wouldn’t have made it. He knew I needed my spirits set on getting well right then. Anyway, while I was at the evaluation, the surgeons wanted me to have a CT scan done. Because of some atelectasis in the left lung, there’s some worry about serious bleeding during surgery. This makes my decision even harder. I sure wish the choice was as easy as white or wheat! My friends and some of you post-Tx say it’s worth it, but sometimes I think I’d rather just let nature take it’s course and be happy with what I have, I am happy right now. Oh well, enough of it. Do you ever wish you could just wake up, and everything would be alright?
… I just wanted to acknowledge what a difficult process deciding to get a transplant is. I had been struggling with that decision for several months, before I decided not to do it. For me it was a process of the risks outweighing the benefits. I freaked when I started hearing about complications from the operation and all the side-effects from the meds and no immune system. I don’t relish getting sicker with CF and “going naturally” in the body I came in with but I’m not willing to play the Russian roulette of possibly becoming disabled in other ways from the transplant. I think if transplants are successful, its incredible and its like a new life opens up for you. And I can certainly understand many, many people wanting to take that risk. But at 41, with many of my goals and dreams in this life met, I don’t feel so freaked about dying. I just know that its a complicated, serious decision to be made, so don’t feel rushed or decide out of panic. I took time to be quiet, to get in touch with a deeper part of myself and went for several weeks before deciding. The Center was all ready to list me, I just had to go talk with some new transplant team members. The morning of my appointment I called the Transplant nurse and said I couldn’t in good faith be listed when my heart was not 100% behind this. She agreed and left it open for me to call back if I change my mind. As my CF continues to worsen, I have bouts of panic about my decision, but mostly I feel at peace with it and I know that for me, not getting a transplant is the right thing. May you also find similar peace of mind whatever you decide.
… I too am trying to decide what to do about transplant. My feelings mirror (the previous writer) exactly. I grow cepacia and they tell me at Toronto General Hospital (closest Canadian centre who will do CF patients with Cepacia) that the 1 year survival rate for patients like me is 40% – that is survival not quality of life. That doesn’t seem too great to me. I am 40 years old and have traveled, worked in my chosen profession, been married 3 times. The only goal I never met was to have children of my own but at 40 I’m not going to be able to meet that one anyway. The only reason I have for sticking around is my family and friends, none of whom would wish a second class existence on me. I am being monitored every 6 months at the transplant centre because I have been told I am not quite sick enough to be assessed yet. My feeling is that many people, when it comes right down to the wire have changed their mind so I want to keep all my doors open to an informed decision at the appropriate time but I must admit if my life only involved me, I lean to the “no” side. Because I have to consider my husband, parents and brother and friends, I am not prepared to stand behind that 100% just yet. I hope when the time comes for a decision I too can be at peace with whatever route I take.
… I’ve always bounced back well from bouts of sickness with a 10-day hospital stay, but one time about three years ago, my doctor (at the University of California in San Francisco Medical Center) freaked me out by suggesting that it may be time to start considering my transplant option. I was floored. I called my mother who was also flipped out by that news. She wanted to talk with the doctor directly (my parents live in Phoenix). So I instructed him to give her a call.
My mother and I eventually had some serious discussions about it. We were pretty well-informed (at an informal level) about the complexities of a transplant. The post-Tx treatments and maintenance. As my doctor told me in so many words, it’s like trading one disease for another.
Much to my relief, by the end of that particular hospitalization, I had done my usual incredible bounce-back to my doctor’s surprise and he told me that he was sorry for even mentioning the transplant…it was a little premature.
I’m pretty healthy for now (knock on wood) especially considering how bad I was during my teenage years. I’m 26 now and plan on having another 26…or 36. But the transplant discussion led to the conclusion that I was probably not the ideal transplant patient. But upon reading everyone’s own ruminations on their decisions, I realize that I may have to reconsider sometime. I think that I’m still several years from having to make such a decision, but it may inevitably come. When I first made my decision, I had trouble envisioning myself being that sick…in the hospital constantly, having so much serious trouble as friends of mine have endured…or succumbed to. Now, after losing two friends this last year, I guess that would make anyone reconsider their own decisions. They were both awaiting transplants.
“An aside here; I notice this seems to be a serious problem with these ‘lists’. You have to be deteriorated to a certain level before they put you on one, but by the time you’re there, you’re too sick for the transplant and by the time they actually get to your number on the list, it may already be too late. Three friends of mine have gone through this now and all three are gone.
… My ultimate goal is to live as *long* as possible – good “quality of life” or not, there are so many things, places, and feelings that I want to experience – but these things take _time_. I just feel that I have a bit more “control” over my CF than I would have after the transplant. I know this isn’t the most gung ho optimistic attitude to have but it seems that it’s a total crap shoot and there’s no rhyme or reason to who does well after transplant and for how long. Don’t get me wrong – I’m going to hang on so strong until I get that transplant and I’m going to hang on even tighter after I have the surgery. I plan on cramming as much into my life when I get that opportunity but for now I’m happy just to kick back, suck in that glorious O2, and ponder the bigger questions that others gloss over as they get caught in the superficiality of day to day living.
On occasion I read the letters written back and forth between my doctors – “end stage”, “not expected to live more than 2 years”, “severe obstruction”, etc, etc (of course no one says these things to my face) – and it’s hard not to wonder if I’m living in some self-created fantasy world in which I’m convinced that I *can* in fact hang on for 2 years on my own without a transplant. I have always been very independent and stubborn (to the point of pig-headedness on occasion) and incredibly active. I went to a very well respected university and worked my butt off; in retrospect it all came with a price, although I do not regret the life I led. However, I miss that freedom and activity in my life. I’m just not supposed to be dealing with this at the age of 24, none of us should have to – I keep waiting for Tattoo to pop out from the shadows and whisk me off in his pontoon airplane back to that reality that used to actually be my life. But I know that’s not going to happen, at least not until I get that transplant….
I haven’t had a sharp drop off in my health since last year when I wound up being admitted through the ED for the first and only time in my life due to some major mis-communication between my doctors (the hazards of being in an HMO – too many hands in the pie, not enough action, not quick enough). Up until then it’s been a slow decline without major incident, so steady in fact that all this kind of snuck up on me and surprised me somewhat. But it’s that steadiness that leads me to believe that I *can* hang on, that I *can* control my health to a certain extent and not cave into what “the numbers” say. I feel that I’ve entered a whole new realm in the course of my CF, one that I’m not familiar with and only slowly am I beginning to get comfortable with. Until now I’ve relied on past experiences and subjective comparisons to other PWCF (not always accurate, I know, but we’re all guilty of it) in order to predict future incidents and outcomes. I could still rely on those subjective comparisons to a certain extent if I knew more people who have gone through this (they number only a few), but I also realize that I can’t rely on the past as much as I used to. I get completely frustrated with my CF doctors sometimes because they seem to be so wishy washy on this issue – I’m not looking for hard and fast answers (and I’m very much aware that all PWCF are different), just a little guidance so that I can make a reasonably informed and educated decision about *my* life – but no one wants to commit, to give me their opinion or suggestions, because heaven forbid I might just actually do what they tell me for a change and then it would be in their lap should something go awry. So instead they tell me nothing. So since I can’t rely on the past and I can’t rely on my doctors, I feel….. utterly lost.
I’m feeling pressured to go through this sooner than I want but I’m not sure if I can back up these feelings with cold hard facts that say “look I’m just not sick enough to have a transplant yet”. On the other hand I don’t want to be naive about the situation and wait too long – one of the docs at UNC told me that some of the people that die while on the waiting list are the PWCF that think they can “beat the odds” (real encouraging, huh?). I _know_ it’s possible for people with very low lung function and relatively low O2 sats to live a long time and I want to be one of those people. But how? Is it a matter of avoiding infections/exacerbations at all costs and being vigilant to maintain the status quo with CPT, antibiotics, exercise, O2, and staying active? I know there’s no “magic recipe” but I would be encouraged if I knew it was more than a “crap shoot” or “good genes”. I’m trying so hard to have a positive attitude and to laugh about all this on occasion because I know that plays such an integral part in the whole scheme – but it’s not always easy, especially when all the s**t seems to fall on top of ya at once!
… And……. (drum roll please) Chapel Hill called to tell me that I’m now A-numero uno on the list and its time to move down there. Yikes! Haven’t even been on the list for a year so I wasn’t quite expecting it so soon, although I knew it was a possibility. (For those of you new to the list, I’m listed for a double lung Tx at UNC, and recently was having some question about whether this was the right time to go through with all this.) Actually, I’ve known for a little while now, so the initial shock has worn off. I told them I couldn’t move until July since that is when I can collect disability and live *reasonably* well, at least above the poverty level. Luckily, I had the chance to sit down with my CF doctor before she left to take a position elsewhere, to discuss all these issues and explain all my mixed up, mish mash of feelings. It went better than I thought it would – she didn’t seem to think that I was living in a “fantasy world” as I put it before, and that it want totally unreasonable to consider going inactive. So that’s what I’m going to do, and at least I feel more grounded with my decision now. I’m going down to UNC next week and at that time will tell them my plans – go on disability in July and hang out here for the summer (if my health permits). Then if all goes well, reevaluate things again in August or September and possibly move at that time.
I was always under the impression that if you went inactive, you got bumped off the list but retained the same position when you went active again. Now someone has told me otherwise – that some people are pushed ahead of you and when you go active again you aren’t bumped to the bottom of the list *but* that you basically have to wait your turn until those ahead of you are transplanted. Obviously with the shortage of organs this could be a problem if things go downhill fast.
… A Tx should not be considered a cure (I think I know that better than almost anyone), but merely a swap of problems, but a swap I’ll take any day as it brings (can bring) a remarkable improvement in quality of life. Sure, Tx’s haven’t been around long enough to get some good hard and fast stats on how long these things are going to last, but I’d take five good years with these lungs over ten CF lung years. But if you’re at the point of looking into a transplant, odds are you don’t have five years anyway. As I see it, there’s nothing to lose.
How Do I Select a Tx Center?
Success statistics for Tx can be and are very deceiving. Some centers screen their patients so that only those most likely to survive are accepted into the program. Other hospitals are more willing to take risky patients. Well guess who is going to have “better” stats? Most hospitals are not going to offer up their stats for the above reason. UNOS will not provide such info.
So you’ve gotta look a bit more into the various centers than just survival rates. Look at the program in its entirety. Do they have a rehab program? What kind of patients do they accept (in my book, it is a plus if they are willing to take risks–being that I was considered a risk). How holistic is their approach to the Tx? Do they offer support beside the operation itself? How LONG is their waiting list? How many transplants do they do a year? Talk to patients who are waiting or who have had the Tx done (not only about the center they went to but about centers they may have decided against or been turned down by).
Remember, this is probably the biggest decision/event in your life. Learn as much about transplantation as you can. You will save yourself lots of grief if you do.
Evaluation for Transplant
I have been followed every 6 months by the transplant center in Toronto, Ontario, Canada. When I go, they arrange for one or more of the following combination: blood gases, a 6 minute walk and/or revised treadmill stress test and pulmonary function tests (pft’s). Then I see the doctor for a few minutes and they tell me the results of the tests, i.e. “am I sick enough to be assessed in hospital yet?” At my very first appointment in March of 1994, I only talked with the doctor and she based her decision on what I told her and my reports from my CF doctor here in London (Ontario). Because it was so late in the day, she was unable to get me scheduled for the treadmill stress test and that was left till the next time. She did tell me they like to assess you (in-hospital) when you are at about 25% of the predicted normal values for pft’s.
At my last appointment they told me it was time to have the full in-patient assessment but I wasn’t ready to hear that news and stalled for another 3 months. I was still working part-time, and I am not on oxygen full time (just at night). My pft’s were down as is my exercise tolerance test and I have started losing weight. My next appointment is June 13th at which time I should be ready to give them an answer. I have started taking nutritional supplements and I have stabilized my weight again but my pft’s have not improved. My doctor here thinks that if I can get in the daily habit of using my treadmill I might be able to improve them enough to delay the inevitable. We’ll just have to wait & see.
… I remember the anxiety of not knowing being worse than anything they subjected me to though! Well except maybe for the blood gas. BTW – I went through this only once and at only one center, UNC, although I imagine its somewhat similar at other centers. First I met with the transplant coordinator nurse, then went off for a whole battery of tests — x-ray, V/Q (or some sort of painless imaging test of the lungs), PFTs, 6 minute walk, blood work (LOTS!!), blood gas, plus I had an echocardiogram done before going down there (if it had been abnormal I would’ve had to have heart catheterization -sounds pleasant). Then I met with a social worker, then psychologist, then a pulmonologist, then finally one of the surgeons! Wow what a day. I have to admit – I was pretty emotionally drained after all that but it really want too bad in retrospect. Try not to worry too much. Just try to put your best foot forward, be open and honest and hopefully they’ll do the same, don’t be afraid to ask a million questions, and very importantly have a nice tall cold beer when you’re all through with it. Best of luck to you! Now get some sleep tonight ; )
… I only know about the program in Toronto so here goes. It was the first to do lung transplants is one of the best centers, certainly in the top 10 in North America. First your primary MD refers you, then you go for a 2 week long inpatient assessment where they do every medical/social/psychological test out there. For CF, you really have to have a life expectancy of less than 18 months for them to list you. You also need to have real crummy oxygen sats and be on oxygen almost 24 hours a day. You also need a great support network to back you up as the waiting period is very difficult. Then you wait. And wait. And wait. I have had many friends go thru the program here and most are doing well. 2 have died. 1 is in graduate school no less. You also have to relocate to the city and that costs money–lots of it, not to mention post op follow up. However, not to discourage you or any other reader, it is a gift of a lifetime that some choose and must really, really be carefully pondered.
… First of all, I would say that it’s wise to do two things at this stage. Find out everything you can about the possible Tx locations and programs, and secondly, push the whole process along as soon as possible. I know that Chapel Hill is now accepting 1 or 2 people to their program every week now, and at the rate they’re being done, that means a looong wait for the people at the end of the list. It’s best to get on as soon as possible and start building time. It’s great if you wait your time and are still feeling so good that you can become inactive on the list later, but it really sucks to need a Tx and not have the time. That’s why I had to have lung lobes donated by two of my brothers instead of a regular set of donor lungs.
My sister had her transplant in October of ’94. She waited a total of 4 years, 2 years on one list and 2 years on another. I don’t know how long the average wait is but I have heard of people being assessed, accepted and transplanted in a couple of months. I think my sister’s wait was on the long side but that is partly because she changed programmes and partly because she wavered a lot in the middle part of her wait. In that time she had 4 false alarms, one where she had gone as far as to be prepped for surgery. The wait was difficult. At all times, she had to have her beeper with her, and the rest of us (i.e., her Mother, husband, daughter, me) had to be reachable as we all had jobs to do.
After all that time and all those false alarms, we really couldn’t believe it when it was actually happening. I guess we all started to think it wasn’t meant to be, or it would have already been. We were all really scared but my sister was calm. She had great faith that this was her time and that all would go well.
…If you do choose the Tx route, I’d strongly suggest a center that has a pulmonary rehab program. No matter how sick anyone is, you must do the tread mill and bike « hr each 4 days a week. It gets you in best overall shape as possible to survive the surgery. It made a world of difference to me.
After the Tx
… I had a double-lung transplant in April ’95. I was on the waiting list for ten months. I was on full time O2 and needed a wheelchair to get around. My days were spent at home (usually in bed, watching tv), I couldn’t go to school because I was so sick and weak. I had CPT 3 or 4 times a day and about 1 hour everyday was spent doing face masks. I got “the call” at 3:20 am. My surgery took 6 hours and then I was in the Intensive Care Unit. Within 48 hours the trachea tube was removed and I was breathing on my own with my new lungs! Within hours of the tube being removed, I was up and taking short walks!
Over a 2 week period, things improved steadily-the 4 chest tubes were removed, the 62 staples were taken out too. Unfortunately, I hit a rough spot after that. I was finding it difficult to breath again. The doctors thought it might be rejection so they put me on high doses of steroids. That didn’t help so they re-inserted a chest tube to see if their was some fluid that needed to be drained. It drained some but not enough so they sent me back to ICU and put me on “lung dialysis”. (They also put the trachea tube back in.) Within 24 hours, there was 6.5 liters of fluid that had drained off my lungs! When they removed the trachea tube the next day, it once again was soooo easy to breath!
Everything has gone wonderfully since then. No more O2, face masks, or CPT. I’m biking, walking, swimming, rollerblading – anything you can think of! I even returned to school this fall so I can graduate! I never realized how great life can be!!!!!
… Imagine that, what was once the best cough this side of the Mississippi, to the right that is, depending on which way you’re facing really. Who would have thunk it. The nerves to new lungs can’t be reattached, so in turn, you never feel like you have to cough. So you have to try to cough several times a day just to make sure the new lungs are clear. You can’t imagine how hard it was to learn how to cough, after all those years of involuntary hacking, not being able to cough. Pretty weird. New lung maintenance: chest PT for a short while after surgery, just to clear all that post op fluid out, 2 puff proventil PRN, that’s it. MEDS: I was taking about 20 some pills a day post tx, I’m now down to six twice a day, realizing it’s different for everyone. Exercise 4 to 5 days per wk, 1/2 hr on tread mill, just to keep those big guys fully inflated, and your heart in good shape.
… What we didn’t anticipate was how it would be afterwards. I guess I had an image of her waking up (immediately after) and breathing the whole room in. It didn’t happen like that. She recovered more slowly than average, she was in ICU for two months, and she didn’t look good. She did write us some great hallucination notes (which we saved and are even funnier now). So, she didn’t recover quickly but she did recover well.
… why is the life-expectancy is still so short for anyone who’s had a transplant. There’s a lot of reasons for this, as you realize, it’s a very serious thing to be done to a body. Very traumatic for a body to be opened up like a Thanksgiving turkey and have something as important as a lung replaced. But when it’s done, and if everything turns out ok in the operation, you are given 2 lungs which are as normal as the person they came out of. They will not take on any cf characteristics, as the cells are disease-free, AND the cells which reproduce themselves in the lung (the stem cells), are also free. Now that still leaves probably like 80-90% of the body that hasn’t been changed, too. Your sinuses, throat (all the way down to the connection to the new lungs), pancreas, and everything else still carries the defect. Probably the biggest problem, however, is the fact that for the rest of your life your body’s immune system has to be suppressed. That’s why we take cyclosporine, imuran, and prednisone (and a few others). This leaves tx people very susceptible to just about anything. I do my best to avoid anybody in the grocery store or the movies that’s hacking, or little kids with runny noses, because getting sick can be a very serious thing for an immunosuppressed person to go through. It’s a big, big deal to get transplanted, and there’s a million ways for there to be trouble during the whole thing, and life afterwards, but I’d trade my last year and 5 months for the whole 28 that came before it. I just try not to worry, and enjoy the heck out of what I’ve been given.
… I was tranplanted almost six years ago – May 17, 1990. Not sure when OB (obliterative bronchiolitis) started. My intuition says it was 3 or 4 years ago. Wasn’t diagnosed for certain until Oct ’94 when docs performed this luscious procedure called an open lung biopsy (make incision in chest; stick fork in and grab pieces of lung). It’s was about early 1993 when my PFT’s stopped rising – peaked at 80% of expected. I don’t recemeber my PFT’s pre-tx. I’m seen at different hospital now than pre-tx. They’re pretty low – 10% expected. O2 Saturation @90%. But I only need oygen at night . AMazing how the body adjusts to the most adverse conditions. I am more functional and have better quality of life right now then I did in the months preceding tx.
There is no distinction on the waiting list between first and second timers. It’s solely based on time on list (within status – on life support; in hospital; all other).
… No regrets whatso ever about my decision to have tx – I’m willing to do it again, right. I would have never known my nephews; would have never known the feeling of running for an hour or developing a weight lifters physique. 1990 to 1994 have were the best years of my life. I finally had what I consider freedom.
Do My New Lungs Have CF?
Actually the new lungs are CF free forever. The reason for this is because the new lungs are made of cells from the donor which continue to divide and retain their normal cellular function — transcription/translation Of course, the donor must not be a person with CF! Post-transplant, however, the PWCF still must contend with pancreatic, liver, reproductive etc. problems, and will be immunosuppressed (to prevent) rejection, which could lead to lung infections, scarring in and of itself. But, as far as CF cellular processes go – post-transplant the donor lung cells continue to divide and transcribe/translate the donor’s DNA.
OB or BO
…The technical term for the deterioration that occurs in many lung transplants is obliterative bronchiolitis (OB). It has become synonymous with chronic rejection. It is sometimes called bronchiolitis obliterans (BO).
OB is a cause for concern but should not be dwelled on . A recent article I read from Chest Magazine (happened to be written by my pulmonologist) said the prevelance of OB in lung tx is ~ 35%. New, healthy lungs gave me oppurtunities I never dreamed of. I even went scuba diving. I wouldn’t trade the experience for anything in the world.
It’s a lot similar to having CF without the mucus production. As you can tell, I’m all too familiar with the disease and as a result I am on the waiting list for a second lung Tx which in itself is another controversy.
The same thing under different names occurs in heart and kidney transplants (I don’t about liver et al.). No scientific explanation what causes it or how to prevent/treat OB. Pretty much your body gets tired of the foreign matter and tries to get rid of it (the tx lungs). It is not acute rejection which is treated with high dose steriods or stronger meds. It’s a low grade form of rejection that destroys the bronchioli.
Post-Tx Concerns for Diabetics
First-Person Accounts: – Ever since my transplant the blood sugars have been going crazy… Damn that prednisone… I’ve been at this injection thingy for over a month now and it is starting to drive me crazy. I’m currently at 10 units R and 34 units N in the morning and 14 units R and 16 units N at night (50 units = 1/2cc). While I’m not getting anymore sugars in the 500+ level, I’m still getting some in the 300-400 level.
… I’m cf, post-Tx, and w/ diabetes. I’ve had it for a long time (1984). I can only account for myself, but it sure seems like it’s been a lot easier keeping control of my blood sugar levels since the Tx. It’s been 7 months now, and my steroid taper has really helped. I’m currently on 15 mg pred. every other day. I’m taking insulin doses of about 10R/15N in the morning, and 10R/10N at night. My sugars are almost all between 80-120. Are you still taking a lot of pred.? Not to mention if you have rejection and get the solumedrol for a few days. That’s a blood sugar killer!
My doctors had been urging me to get on the list for about two years before I did. You have to realize you need to get listed as soon as you THINK you may want to do it at some point down the road, as the wait is becoming so long, up to two years at some of the more popular centers, and with the way CF is, you could be fine one day and struggling to stay alive the next. When your time comes, if you’re not ready you can always pass and you don’t lose your place on the list.
I was doing o.k., working 4 to 5 full days a week, I thought it could go on like that forever, but the 20+ years of lung infections had already taken their toll, the antibiotics were working less and needed to be on them more than not. All the new therapies on the horizon weren’t there for me, as nothing can reverse the years of scaring and damage.
I made it though college in 4 yrs, unlike most of my friends, spending the better part of it on and off of antibiotics, then went on to pass my CPA exam to begin a budding career at a local CPA firm.
I was starting to need oxygen most of the time, the bad days were starting to out number the good and the “Quality of life”, just wasn’t there, for me, any longer. I had worked too hard to get where I was to give it all up.
I think there really is no choice, the choice is made for you, you’re either going to die from CF, or die trying to stay alive from a transplant, that’s how I looked at it anyway.
I had my transplant 4/26/94, everything that could have gone wrong did, spent 2 years in the hospital, but I’m still alive, feeling better than any of you CFers could ever IMAGINE.
I had a stroke during surgery, I don’t mean to scare you as I am the only one I know who has ever had one. My doctors said that it was because a lot of my major blood vessels were blocked from former clotted off medi-ports and Hickman catheter lines.
About half of the people I knew who had transplants around the time I did are dead. That’s really sad but they knew they had no choice, had they not done it, most likely they’d be in the same place.
If you do choose the Tx route, I’d strongly suggest a center that has a pulmonary rehab program. No matter how sick anyone is, you must do the tread mill and bike « hr each 4 days a week. I gets you in best overall shape as possible to survive the surgery. It made a world of difference to me.
… Your message sounds so familiar to me and brings back memories. My fiance (22 yrs old), had PFT’s below 20%, and her cepacia was pan resistant. Within the past year and a half she had been applying to several Tx centers, but was turned down because of her resistances and diabetes. The University of Pittsburgh had accepted her, but they too said that the list was 24 months and if she survived that long (probably not) she would not have been transplantable. We opted to go with the living related lobe donation, where two members of her family donated 1 lung lobe each to replace her lobes. The surgery is still considered experimental (60-70 done in the US, she was the third at Pittsburgh)…(experimental means insurance doesn’t recognize it, although the hospital picked up much of the procedure costs).
She was relatively strong and healthy going into the surgery, and was U of P’s strongest candidate and was actually sitting up and talking not even 24 hrs after the surgery, but she developed reperfusion injury in the new lobes (it’s kind of a general garbage can term) and her lung blood pressures were too high. This led to two weeks of being intubated and sedated and being put on ECMO (heart by-pass) for almost two weeks. Surprisingly (and almost ironically), she didn’t run any fevers during the whole ordeal-they handled the antibiotic resistance issue well.
I realize this doesn’t exactly seem optimistic, and you’d be surprised to hear that I still am pro-transplant for the most part. She died exactly one month ago today, so my emotions still sway on the subject. I can say, that If you do decide to go for a transplant (cadaverous or living lobe) you need to go full steam, both in attitude for it and in fundraising. The living lobe generally does have positive results (about the same for cadaverous Tx +70% for 1st year survival range). I have heard the stories of people who received the Tx, and talked to other CF transplantees. It’s not a clear cut decision by any means. But if you’re thinking about it, get listed now because it is a long process. And don’t worry about $$ now. There are ways of raising it.
My Transplant Experience (8/97)
by Mike Hyland
I’ve received several requests for information on my transplant experience. This msg will be long; my goal is to review some of the major areas related to my transplant. Of course, every transplant experience is different and mine should certainly not be considered exactly as the way it will be for others. As background, I am now 31 and was diagnosed w/ CF at age 3 months. My lungs didn’t start the slide downward until I went to college. My FEV1 reached 30% of predicted about 3 years ago, which is when my doctor first suggested transplant. I, like many people with CF, denied that I felt as bad as the numbers indicated (I was still “working hard, playing hard”, as Ted Nugent sang), and denied it was time. In early ’96, I was hospitalized 3 times in less than 2 months; with my FEV1 less than 20% it was obvious that it was time to make the decision to do the transplant workup *now or not at all*.
Evaluation (or “Bend me, shape me, anyway you want me”)
Each potential recipient must go through a battery of tests to determine if the body’s organs can withstand the transplant. I was in the hospital at the time, and we completed the tests over a 3 day period. Doing all these things wore me out, because the normal hospital routine (meds, therapy, food, etc) still were going on, but the tests generally are not difficult for the patient. Included in my evaluation were:
Clearance from insurance
Well, this is going to be different for everyone, but once the transplant team agreed to evaluate me, my insurance plan was also evaluated. It took alittle time (2 wks) for the insurance company to agree to have me listed after we had completed the workup. In my case, I also had to deal with a network/non-network situation (my hospital was not in my insurance’s lung transplant network).
This varies for every center, blood type, patient size, etc. I waited for 11 months, having one false alarm (the potential lungs turned out to have hepatitis and were thus unusable) at 8 months. A pager was worn to be immediately reachable. It is also necessary to be close to (1 hr or so) the center where the transplant is to be performed. It was important to be in touch with the transplant team whenever I was feeling low as infections and problems must be treated prior to transplant. I was fortunate enough to avoid hospitalization for the 11 months prior to transplant, but did do home IVs several times.
I went on LOA from my job prior to being listed, and during these months my daily routine was a boring but very necessary routine: I was doing percussion, flutter, and inhaled meds and antibiotics for 5 hours a day, and walking 30 minutes every night (slowly, with my wife carrying my 02 tank), and with about a 20 min recovery due to headaches from high carbon dioxide in my blood. I burned out about 4 Strom percussors due to overuse! My wife or father helped with my therapy 2 of the 4 times each day. Family support really was important forme here. In addition, I was on 4 l/min 02 (6 l/min when exercising) and using a BiPap ventilatory machine to breath deeply enough at night. Boring and difficult, yes, but it was worth it! Let me say that again: IT WAS WORTH IT! This is a very, very important note: The stronger you are going into the transplant, the quicker and more effective the recovery time.
I received a call from the transplant coordinator (which of course sent my heart rate through the roof!) and was at the hospital within an hour. Three hours later, following several arm sticks for blood, blood gas, a betadine scrub and shower, tobramycin and bronchodilator inhalers, and talking to the surgeons, my pulmonary doctor and the transplant coordinator, I was wheeled into surgery. Surgery lasted about 10 hours, somewhat longer than normal due to scar tissue from my middle right lobe, which was removed when I was an infant. I vaguely remember the following day, trying to communicate with the RNs via paper and pencil (who knows what I was telling them) and getting the respirator pulled out (a strange feeling) after 24 hrs. I gained about 20 lbs in fluids from all the IVs being pumped in the first day. They had me up walking (slowly) on the 2nd day with 4 chest tubes, heart monitor, umpteen drip bags, etc. dragging along. My new lungs were obviously functioning better than my old right from day 1, despite still being full of fluid. The second day, my pain meds were too high, causing me to be way too sleepy, and once they reduced the pain meds on day 3, there was a little too much discomfort, so it took some adjustment. The steroids and meds were at a high level, and this combined with the incision and drainage tubes made sleeping and getting out of bed difficult. But honestly, I don’t remember much of the first few days. I was out of ICU in 5 days, and into a regular hospital isolation room. By the time a week had gone by, I was walking 20 minutes 2-3 times per day in the hospital, slowly at first and building up speed. X-Rays, spirometry, blood work, inhaled medicines, IVs were done daily. 2 of my 4 chest tubes were taken out within a week, the other 2 kept draining and were out in 2 weeks – then I was sent home to party.
My dog was overjoyed to see me again, although she couldn’t track me down by following my oxygen tube through the house anymore.
I began learning the medicines that must be taken once I got out of ICU, the RNs were responsible for training. There are a million of them (actually about 20 at first), but most CF patients are already used to taking meds – it’s really just a simple matter of learning them. As far as side effects, here are the primary ones I experienced for the first couple weeks, mostly due to the immunosuppressant drugs and steroids: extreme shakiness (cyclosporine), sleeplessness and bizarre dreams, swelling of legs (water retention), high blood sugars necessitating insulin shots (4/day). These improve over the initial weeks. There is discomfort from the incision and breastbone – I don’t think I quit taking pain meds until 2 weeks were up. I think it took about 5 weeks before I could sleep on my stomach again. There still are plenty of side effects from the medicines, although several are more ‘silent’: higher blood pressure, higher kidney/liver levels, increased cholesterol, higher blood sugars, susceptibility to skin cancer from sun exposure, loss of bone density.
I thought about the donor frequently at first, and still do. It is strange knowing the ultimate gift you have received from someone. It’s hard to put into words.
I have experienced mild rejection twice, once since release from the hospital. It was treated both times with 3 days of IV solumedrol (steroid), which also causes sleepless nights, higher blood sugars, some weakness and water retention. A small price to pay. I go to the hospital three times a week for physical rehab: walking, riding stationary bike, and lifting weights. I push myself as hard as my skinny legs allow – my lungs don’t care what I do, my 02 sats don’t drop below 95%. I should be allowed to do more with my upper body in another month or so when the chest has had a good chance to fully heal.
Like I read frequently beforehand in other people’s transplant stories: It’s like trading one disease for another. I have to monitor myself closely now: How do I feel? If something is different or wrong, I report it to the transplant center and let them figure out what to do. The difference between this ‘disease’ and CF: Now I have an incredible life. I mean, I always ‘enjoyed life to the fullest’, as people with CF frequently say, but my new lungs are incredible. Last week my wife and I went to a Texas Rangers game after physical rehab and was away from home for about 12 hours. We walked for at least two hours to/from/around the stadium. No problems, no inhalers, no oxygen tank, no blue fingernails, no coughing, just easy breathing the whole time, even when booing the umpires. There’s no question that I would do it again. It’s only been 2.5 months! I’m starting to dig into my hobbies that have been ignored for so long, and will be going back to work in the fall.
So, what do you think of this long winded story? I have always (well, usually anyway) had a pretty positive attitude, and I hope that I have conveyed this. Study after study has shown that if you think you are going to succeed, you are more likely to! Transplantation is not for everyone. It is not a bed of roses and extreme compliance with doctor’s orders is a necessity. But look at the potential payoff! Wow. It is truly an amazing gift from my donor as well as God, science, all the medical staff, and my family that I feel like I do today.
My transplant was performed at St. Paul Hospital / UTSW Medical Center in Dallas, Texas. The center can be reached at 1-800-458-3278, Kathy Crandall is the lung transplant coordinator. The United Network of Organ Sharing is on the Web and their phone is 1-800-24DONOR. They can send pamphlets and information. Take care of yourselves.
Are Living-related Lung Transplants “Better”?
Patients who have undergone living-related lung transplants do not have more or less complications than patients who receive a lung from a “brain-dead” donor. There are only a few centers in the world doing living-related lung transplants and the controversy is that this is not a simple operation. The person(s) donating a section of their lung can run into many different complications after such a surgery. So, you are putting not one, but three people at risk. The statistics for living-related lung transplants have not shown to be any better than those for “cadaver donor” transplants. The benefit comes with the fact that living-related transplants can be a “scheduled” surgery; many potential transplant recipients die while waiting for a transplantable organ to become available.
… In Feb, 1993 I had my upper left lobe taken out. this was after a couple years of bleeding on and off. after being embolized 3 times in a week,(all failing to stop the bleeding), they used a scope to get a look in my lung to check the amount of damage out. It was then that the decision was made to operate. I was out of the hospital 2 weeks later, (recovery + cleanout). Very sore for a few weeks and still feeling the effects for a month or two. My advice would be to get a second opinion, maybe a MRI, and even a look inside with a scope, before going under the knife.
… I went to a conference recently where only Txs were discussed. The transplant “expert” said that people with lobectomy could receive Txs but only on one side. He said that the other side would be a “mess”.
Antibiotic Sensitivities and Getting Listed
What If I Have B. Cepacia?
… “I don’t understand why B. Cepacia would be a problem. New lungs don’t have CF, so as I understand things, they should be able to handle bacteria with one lobe tied behind their backs. Is it the immunity suppression, perhaps.”
… The problem with cepacia (or any other bug) in transplantation is that it not only colonizes the old lungs but also the upper respiratory track (throat and sinuses). Additionally the post Tx patient will be immuno suppressed which will only encourage any bug she may harbor to spread. If these bugs are also pan resistant to antibiotics…well, death is not far off for the Tx patient… or so the theory goes. Cepacia often is or quickly becomes panresistant. If you’ve got cepacia and you are in need of a Tx, get it done ASAP, before it becomes panresistant. Because once that happens, there is no Tx center in the US that is gonna Tx you. Get listed at a center with a short waiting list and get listed at as many centers as is possible.
… My daughter is taken off all antibiotics periodically to help with resistance and to try sometime to give her body a rest. They will then take a sputum culture to see what grows. It was very scary the first time they did it but it seemed to help with the resistance some. She is 19 and is waiting for a double lung transplant. Her PFTs right now are about 15% and 19%. It really is scary not being able to stop the resistance issue and declines in health while you wait.
… (My child) has 3 antibiotic resistant bugs and now cepacia to boot..so doctors say now would be a good time to try to get on lung Tx list (Her medical history has already been sent out by our center to be evaluated) Her PFTs are good at this time…but they told us to not judge by PFTs alone. So in order to change sensitivities we were told to go off all antibiotics.. (She has been on some form of antibiotic..oral, IV or inhalation or all together for the last 3 years at least..) so to go cold turkey is very scary for us (my daughter is Freaked )…its been 5 days now ..all we can do is pray and wait and see what happens. (My child) doesn’t feel right unless she is on drugs.. lots and lots of drugs! She can feel the infection getting her down..but we need a new game plan… Is lung TX the way to go? Lots to think about, some days I wish I had a crystal ball..you know what I mean? Just wanted you to know you’re not alone, and to keep on fighting!!
… I too had (still have) resistant strains of p. aeruginosa and b. cepacia, although I am not pan-resistant to all antibiotics. Pan-resistance is an issue at Chapel Hill – that was my first major stumbling block that I had to overcome. I honestly didn’t think I would be able to get listed there for that reason but as you know sensitivities change and luckily I regained some sensitivity to certain antibiotics after being off them for awhile. But there are other centers (i.e., Pittsburgh – someone please correct me if I’m wrong) where antibiotics resistance is not as much of an issue.
… There are some centers in the USA which will accept those with cepacia for transplantation. The cepacia bacterium has to be sensitive to some antibiotics (not pan-resistant). However, you mentioned that your girlfriend just began culturing cepacia in November and experienced a rapid decline in her health. This suggests that your girlfriend may have a particularly virulent form of cepacia which causes what is known as cepacia syndrome. This form of cepacia is notoriously difficult to treat. Overall, it is known statistically that cepacia transplants don’t have as high a success rate as those without cepacia. Furthermore, your girlfriend may have other resistant bacteria which, in addition to cepacia, makes her an unlikely candidate for transplantation.
… I’m sorry to hear that your girlfriend has cepacia and her health is declining. I know of two people that had cepcia and where allowed to have Txs. There are over 60 Tx centers in the United States. I never knew that until now. I have a very good friend that is in need of a second Tx and the University of Washington told him they would not reTx him and then went on to tell him nobody would reTx him. They were so wrong!!!!! His mother would not take “no” for an answer and has been on the phone with all 60 plus centers and 18 so far have agreed to reTx him!!!! Yea!
So in other words, I wouldn’t listen to your girlfriend’s doctor. I’d start Monday and get a list of all the centers and start calling yourself and explain your situation etc… If your girlfriend really wants a Tx, you all will have to do the leg work and find the answers you need.
… As I’m sure others have told you by now, having cepacia does not necessarily bar you from getting a lung transplant – please let your girlfriend know this – I would hate to see her give on up the idea of Tx so soon. I’ve had cepacia for about 7 years now and was listed at UNC for a Tx about 1 year ago. Of course there are so many factors that go into getting listed, and cepacia is one of them (depending on the hospital), antibiotics resistance is another. From everything I’ve researched, the latter is the more concerning. Tx recipients who had cepacia before Tx don’t colonize it after Tx any more frequently than those that had p. aeruginosa before colonize p. aeruginosa after Tx (does that make sense?? not sure how else to word it without utterly confusing everyone), but as your girlfriend probably knows, certain strains of cepacia are much more resistant to antibiotics than most strains of aeruginosa. After Tx, if recolonization occurs, you need all the help you can get from antibiotics since the immune system is suppressed by drugs. So I guess what I’m trying to say is that after Tx if the cepacia recolonizes its not any more of a problem than aeruginosa, unless it is pan-resistant to antibiotics.
Chicken Pox Vaccine and Tx
I got the vaccine two weeks ago. I’m 29. But I’m having my daughter who is six get it as well because the doctor told me if I get the chicken pox as an adult as well as after I receive my transplant I would be in serious trouble. My brother who is 27 got them this year and he is healthy and he was sick as a dog. I’m not willing to take chances. I had no side effects from the vaccine. Yes it’s true it needs to be repeated in 10 years for children.
Fund Raising Help (9/97)
National Heart and Transplant Assist Fund
I too am trying to raise money for a TX. I’m selling doggie greeting cards and I love my dog magnates, also I do fantasy horse artwork which I’ve drawn personally over the years. I always put out cards at my booths so people know what I’m doing and if they are interested in making a tax deductible donation I have them send it to the National Heart and Transplant Assist Fund. These people set up a fund in your name and handle all the contributions that come in with your name on it. Once the account has been set up and the money is there you can withdraw up to the amount in it for any TX related cost.
One fund raising idea we had was have one of the local clubs have a poker ride. This is where people pay to play poker. (You get five area merchants to donate prizes or gift certificates and in exchange you and a few friends, family or the club members pick a day, stay at the store, and hand out one card to each player who comes in. At the end of the day every one meets at a pizza parlor and see who has the best hand. Those people win the donated prizes.)
To Anyone interested in these people. Please call them for further information at 1-800-642-8399. They will be glad to answer any question you might have better than I can.
We also looked into the National Heart and Transplant Assist Fund, but they get a percentage of all your donations, something like 10-15% for admin and handling fees. We found it to be more cost effective to set up our own NFP org. Maybe a local CPA firm could donate some time/services towards your cause and set this up and handle all the paper work for you.
Organ Transplant Fund
Another organization that helps with fundraising. Organ Transplant Fund, P.O. Box 601, Cary, N.C. 27512. 1-800-489-3863. OTF has a web page: http://www.otf.org
There is interest in xenotransplants (using lungs from animals). There are a great many hurdles facing xenotransplants.