What is usually the cause of death for a CFer who has had a successful lung transplant?

[wifetocfhubby]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Hi - I am a new member but I have been a reader here for a few years actually. My husband has CF (DD508 and he is 40 years old!) as does his older brother (DD508 and 42 years old). His older brother has recently been listed for transplant which has lead to a lot of discussion in our house about transplant.

Assuming the person makes it through the surgery and is able to resume a normal life, what usually causes death? Is it rejection of the lungs that cannot be stopped or failure of other CF impacted organs? I really haven't been able to find a explanation since the new lungs are healthy lungs.

Thank you in advance for the information. I have read how great people feel after transplant but I have also read the long term survival rates which are sobering.

 

[christyisnutz]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Chronic Rejection or BOS is the most common cause of death post-double lung transplant. Brochiolitis Obliterans is caused by lymphocytes (white blood cells) attacking the grafted organ (causing scaring), because it is foreign to the body. Thankfully, there are several treatments out there now for this (including rATG and Campath), although a "cure" is not currently available. Check out <a target=_blank class=ftalternatingbarlinklarge href="http://lungtransplantfoundation.org">http://lungtransplantfoundation.org</a> for more information on this. They are an organization dedicated to finding more treatments and eventually a cure for chronic rejection.

 

[CountryGirl]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Christy is right, usually it is Chronic Rejection aka BOSS. The transplant doctors and researchers don't really know what causes it and there is no cure for it. They have experimentally try different things to prolong your life with chronic rejection until you can A) get a second lung tx, or B) well, die..

Chronic rejection is different in every patient, some things can work for one patient and not for another. One person can live with chronic rejection for years, while in another they might only survive a week. There is no way for the doctors to know and the only way to diagnose it is by noticing a pattern in PFTs dropping.

On me they tried Photopherisis once my pfts dropped to the 50s. My FEV1 was dropping by 10% every month and photopherisis takes about 3 months to actually WORK and it still kept dropping. The drs then started me on Methotrexate and it stopped my PFTs from dropping, but they tried that on my friend and it didn't work. I'm still on it, but by now my lung function has dropped more and I am waiting for a 2nd transplant.

Drs dont tell you this anymore but they should.

"Transplant is not all rainbows and flowers. Transplant is not for the weak. And Chronic Rejection is a HORRIBLE way to die." They then asked my friend if she still wanted to be listed and she said "Yes!" And let me tell you what, that doctor was right and my friend got chronic rejection 8yrs later and got a 2nd tx and 4yrs after that is still going strong. You have to be tough and chronic rejection is worse than CF but it was worth feeling and breathing like a "normal" person with healthy lungs! And knowing that the same thing could happen, I'm doing it all over again.

 

[coltsfan715]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I agree with the other posters about Chronic Rejection being likely the most common issue to affect us post lung transplant. I also wanted to put it out there because for a few of my friends that have passed post transplant their issues were infection related. My center has a policy that if you are sick longer than 4 hours you call regardless of what it is. The people I knew let it go for days until there wasn't much the docs could do to help them.

We are obviously still susceptible to getting sick post transplant, but for different reasons. We don't have the same CF related issues BUT we are immune suppressed and normal bugs can get us down and take us down pretty fast.

Good Luck to your family and your bro in law.

Lindsey

 

[coltsfan715]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I agree with the other posters about Chronic Rejection being likely the most common issue to affect us post lung transplant. I also wanted to put it out there because for a few of my friends that have passed post transplant their issues were infection related. My center has a policy that if you are sick longer than 4 hours you call regardless of what it is. The people I knew let it go for days until there wasn't much the docs could do to help them.
<br />
<br />We are obviously still susceptible to getting sick post transplant, but for different reasons. We don't have the same CF related issues BUT we are immune suppressed and normal bugs can get us down and take us down pretty fast.
<br />
<br />Good Luck to your family and your bro in law.
<br />
<br />Lindsey

 

[wifetocfhubby]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Thanks so much for the information everyone.

 

[Lex]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Also, just to add....a major cause of rejection is lack of compliance with the drugs. Cf'ers are usually better about this that others, but the theory is that once we start feeling better, we feel like we don't need the drugs anymore. Stupid, huh? But then again, some start smoking again after their TX. Oh well......

 

[EnergyGal]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I had two double lung transplants and I will say that CF end stage was much worse then lung transplant end stage.

Just my two cents.

I am now on my second transplant and doing well.

 

[CountryGirl]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I would like to let Lex know that with Chronic Rejection, Drs feel that compliance has nothing to do with it, which is one of the reasons they need to do more research on it.

I can tell you that even if you take your meds on time every day and don't miss a beat you can STILL end up with chronic rejection.

But Coltsfan is right, a lot of patients die after getting infections...which can also result in acute or even chronic rejection. You can only take precausions so much.

 

[Lex]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I agree wholeheartedly. I don't think I articulated well enough. I meant to say that you can still develop chronic rejection being 100% compliant. However, one of the main reasons for chronic rejection is a lack of compliance. If chronic rejection wasn't associated with lack of compliance, no one would bother taking their drugs. This was told to me by my doc and that this rule is more for non-CFer's than us because non-compliance isn't generally an issue for us.

 

[lizym]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I agree with CountryGirl regarding compliance. I think that Lex doctor perhaps read one article and came to that conclusion without really looking at the population. The few people I know (i'm not very involved in cf/tx world) that have chronic rejection have been VERY compliant.
I myself am probably less compliant that most - and not on purpose though. Many times my meds are not on the exact time intervals that should be taken . Every now and then I forget to take my meds - this happens a min. of 1x a week or every 2 weeks. I personally choose to take myself off prednisone and have been off of it for over 4 yrs. Having said all that I celebrated my 13th tx anniversary and am doing well - even though my lung function was always 75% of predicted (never made it to 100% post tx)

 

[jamiebug]

What is usually the cause of death for a CFer who has had a successful lung transplant?

The best advise I ever got was from a tx recipient who at the time was about 4 yrs post transplant. . . .he said he was lazy when it came to taking his meds. . .never really took them at the same time or took notice of it. Then he had rejection. He said since then he sets a timer and takes his meds exactly at the same time 12 hours apart and had yet to have rejection again. So for the past 3.5 yrs i have had an alarm and I take my meds every day at exactly 10am and 10pm, I am VERY good about it. I have not been treated for rejection since my transplant. I don't know the statistics or the facts, but I DO know that taking your meds as serious as you can which includes monitoring your micro spirometer, temperature, PFT's and getting your blood work done regularly will all play to your advantage. I still check my temp and micro spirometer about 4 times a week minimal. I have only missed 2 doses of meds in my 3+ post transplant years. I take it THAT serious.

I don't think rejection is patient error in all cases, but I bet it plays a factor in some of them. The difference between life with CF lungs and life with Transplanted lungs is mainly being in tune with your body so much & not letting an illness/cold/flu go untreated. It's a lot of "precautionary" instead of so much "treatment". I hope that made sense. . .I'm posting late at night since my prograf gives me insomnia. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[KaiserWilly]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I was told that a transplant doesn't cure your problems it just exchanges them for different problems. I have CF and am 52 years old. I was finally diagnosed at age 47 and had a double lung transplant on January 8, 2011. Although statistically only 50% of transplant recipients will pass their five year anniversary generally due to rejection issues. I have been told by my main doctor that a transplant recipient can up their chances for survival greatly by maintaining regular contact with their doctors, medication compliance and preventing exposure to infection. Also enjoying life to the best of your ability helps. I have been playing hand drums for over twenty five years and currently my ONLY recreational activity is drumming for a belly dance troupe. I am their only drummer so I get fed often and I have no doubt that being appreciated for what I CAN do helps keep me focused on taking care of myself and decreases my depression. Fun is a good medicine but not a substitute for my prescribed meds.
Charles the drummer

 

[lizym]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I've been told by medical staff at tx clinic that I could be one infection,..one cold...one virus away from chronic rejection - despite compliance to meds . Basically I don't see how missing meds every now and then or taking them an hour or so late, is so dire that it would throw you into rejection. Sure, missing meds altogether wouldn't be good idea but not taking them at 'exact' times, every single time, won't negatively affect you.
There is one study that is looking at low rate of Vit D as related to Chronic rejection..so there are so many reasons for chronic rejection that we know nothing about....yet.

 

[beautifulsoul]

What is usually the cause of death for a CFer who has had a successful lung transplant?

I've been told by my transplant clinic that the two main reasons are infection or rejection. So, mostly what the majority of people are saying. Also, like Lindsey said too, my Clinic advises me to call when I catch a cold, flu or even ANY small medical related issue/problem. From my own experience, I ended up with post transplant Lymphoma during the first year I received my transplant. It all went away within a few months. I think that issue is rare but just something else that could happen.

 

[best091964]

What is usually the cause of death for a CFer who has had a successful lung transplant?

Hi I am new to this but I do have a question after you had your transplant could you please tell me what your therapeutic levels were maintained at. See myduaghter went into rejection but we feel it was becasue her tacrolimus levels were not kept as a high enough number to keep her from rejecting, Please I am just trying to find some answers!!!!!!! Thank you

 

[cftransplant]

What is usually the cause of death for a CFer who has had a successful lung transplant?

best 091964
My TX center want prograf (tacro, FK 506) from 8-10 ng/ml trough, this is a level after the initial TX and months out from the TX.

Risk infection, rejection (acute, chronic), cancer including the three skin types, Kaposi's sarcoma and lymphoma. All cancer's increase with TX. With the med damage through time, kidney and liver damage and or failure.

CF TX 62 cepacia, 12 years out