lung transplants

[Mike6sic6]

Have any of you had one or know someone who had one?

What are the chances everything goes as expected?

Did you actually fell better after ?

What happened with your insurance company, did they pay for it or what?

what are signs someone really needs one? cause i don't feel sick at all but my doc said i should get on a list now and go get some tests for it in PA.

i'm 19/M/CF since i was born, compared to other people i talk to it sounds like they have it a lot worse than i do and i don't understand why my doc is telling me this all of a sudden.

 

[JazzysMom]

Every doctor approches the topic for a reason. Mine mentioned it this year. It scared the hell out of me, but she said that its something to think about for the future. She wouldnt want to to be at the level of transplant need & never thought or discussed the topic. Unless your lung function is at that point your doctor might have just mentioned it for you to keep in the back of your head should the need arise.

 

[IG]

Better to think about it now and get on the list rather than setting it aside and deciding you want it too late.

I had one 2 years ago, I'm now 19.

A lot of that is hype, the statistics are a lot better than what you'd think, though you'd have to ask your clinic for their own stats. [survival rate, etc.]

Yes, I felt better afterwards. Some do, some don't. Depends on the person.

I have medicaid so I can't answer that one.

What are the signs? Increased infections longer recovery time, very low [or dropping rapidly] FEV1/ PFT's in general. Losing weight rapidly, growing resistant to a lot of the medications, constant hospitalizations. Just some of the few hints.

If you're in PA [which ironically enough I'm moving up there in a week] you're in great hands I know that UPMC [University of Pittsburg Medical Center] is ranked one of the top 5 in transplant surgeries. I know that UPenn has a stellar program as well. Anyway if you have any more questions feel free to ask there are plenty of us that are willing to help.

 

[anonymous]

Have any of you had one or know someone who had one?
-I have had a double lung transplant. I am 10 months out and doing well (knock on wood).

What are the chances everything goes as expected?
-that is different for everyone...when you go to get your evaluation they will talk more about statistics with you.

Did you actually fell better after ?
-You cannot even phathom how much better it is. I can BREATHE. It is wonderful, amazing, greatest thing I ever did in my life. Now that is not true for everyone. Just because I had a great experience so far doesn't mean that there isn't someone out there who had just as equal of an awful experience. Its different for everyone. My pfts are above 100%

What happened with your insurance company, did they pay for it or what?
My insurance company paid for everything having to do with the medical side of the transplant. The actual relocating to New Orleans was up to me.


what are signs someone really needs one?
You are on oxygen more, having more trouble doing what you used to do, more infection, decrease in quality of life.

Hope this helps. Great specific questions it was easy to pinpoint what you were worried about. If you have any more keep them coming, Candice, me, and others on this board will do our best to help you.

Margaret
Double lung tx 11.11.04
-------------------------

 

[anonymous]

Mike

I had my double lung tx 8 years ago ( well on Sept 12th it will be 8 years). My sister also had a lung tx, in 2001. I also host a web site for pre and post lung tx folks so I know many people around the world who have had one.. and I wrote a book on inspirational stories of lung tx, and 260 people shared their story.

What are the chances that everything goes as expected? Wow that is a loaded question. I guess you would have to look at stats, ask people who had a tx and ask the medical professionals. I am sure if you ask patients, many would say it did not go as they wished.. but then... what were they wishing for? I wanted to run a marathon in 3 weeks after tx, and seriously I thought that was not unreasonable. No I did not run a marathon at 3 weeks.. so I guess.. it did not go as expected for me. I did run a 5K at 13 months post tx though. I am guessing for the marjority of people it does go as expected.. And what do the medical professionals expect? Well they do expect you to reject sometime.. so don't think that is a bad thing.. it is normal. They also say they expect some bumps post tx... so if you hit bumps.. only normal again.

Did I actually feel better after? My goodness yes. I had to learn to cough again... I had no reason to cough and I totally forgot what it was like....I don't have to do treatments, don't have to do IV's, don't have to worry about coughing up blood, don't have to worry about losing 10 pounds in a few days when sick, don't have to worry about my vacation getting ruined by sickness.. I can go on and on. What I have to "worry" about now is... what will I do next for adventure, fun and to live with great lungs. I think pre tx we are so use to lousy lungs, we think that "hey this is not that bad" but what else do we know.. we don't know the feeling of good lungs, or just can't remember anymore. Yes, I feel 100 times better now....

My insurance paid the whole thing and continues to pay all the bills.

Signs you need a tx is that your lung funcitons are low, your quality of life is going down, IV's are not working, you are short of breath when you did not use to be, your weight is harder to keep on, and many other signs.
Why is your doctor saying this, ask... check out your FEV1 and see what it is...mine was 28% when I got listed and 18% when I got lungs.

At least check into tx and see what it is about and learn about it... maybe it is not quite time, but having time to think it over is a great help for the actuall time.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

Joanne - thank you for your wonderful post. I know I have 'talked' with you before. My husband's at the top of the tx list and we are exhausted waiting and keeping him healthy! You are such a wonderful source of information and great encouragement. I am printing off your last post so he can read it. He's currently on two iv antibiotics, one oral, two nebs. His energy is depleted, well, you know all the stresses we are dealing with. Anyway, his home care nurse (they really are so great) came for a blood draw, and she told him, 'are you sure you need a tx? your lungs sound great.' Even when you're sure and your dr's are sure, we assume one experiences a considerable measure of doubt. Hearing people tell him he doesn't look (or sound) like he needs a transplant (something we attribute to the grace and strength of God) can actually cause more stress! Hopefully we'll be able to tell everyone soon he has new lungs.

Blessings,
jan
wife of Greg, 45 cf'er w/cepacia
www.standinginthegap4greg.org

 

[anonymous]

Jan, if you don't mind my asking, what is Greg's current FEV1?
Also, to everyone else who has had a tx, what were your FEV1's at the time of transplant & did you know for sure from how you felt when you were transplanted that "it was time"?
Elle

 

[IG]

I believe my FEV1 at the time of transplant was... 21%

Unfortunately I was in denial up until the end. The next dose of antibiotic would do it, just a few more weeks in the hospital, just a little bit longer. I think deep down I knew that I wasn't doing good, but wouldn't admit it not even to myself. When the lungs did come around, being afraid.. I would have said no and backed out but I had come too far to be able to do that. [grandmother would have killed me herself <img src="i/expressions/face-icon-small-tongue.gif" border="0"> gotta love grandma.] Ended up going through with it and can admit to myself now that I needed it desperately. I think it's the people around us that can really judge how well we're doing when we're really sick. Denial can be a real pain in the butt.

 

[christyisnutz]

My fev1 was around 10% at the time of tx. They told me I wouldn't have lived another 2 weeks most likely, and definitely not another week without being on the vent. When my doc first told me I needed to think about tx, I was like WHAT?? ME??, but thank goodness I took his advice and began the process right away.
Christy

 

[anonymous]

Wow, Christy. I haven't talked to very many tx recepients before, but I don't know if I've ever heard of 10% or not. I would definitely feel like I had a guardian angel if I were in your shoes!
I assume you feel like a new person now and when did you get your tx (if you don't mind my asking)?
Elle

 

[christyisnutz]

Elle,
I had my tx 11/12/01. I have had a lot of trouble with my sinuses since then (am on IV's now), but my lungs are great!!! I was complaining about how bad I felt a couple of weeks after tx, and my infectious dz. doc said I had no room at all to complain, that I shouldn't even be there. So yeah, I feel very very blessed. I was listed for tx when my fev1 was around 24%, but I went downhill very fast b/c of a mycobacterium in my lungs. I had a living related lobar tx (the 4th at Duke), so I received a lobe from my mom and one from my uncle. I had a lot of antibodies in my blood from my previous pregnancy that made me incompatable with 96% of the population. That made finding a cadaver match almost impossible for me, so they used family.
Christy

 

[NoDayButToday]

Out of curiousity, does the problem of antibodies in the blood arise with every post-pregnancy transplant recipient? Was yours a special situation, or is this true of any child bearing woman who goes for Tx?

 

[anonymous]

Christy
Thanks for the response.
I wonder how long after giving birth do these antibodies stay in your blood-- forever?
Elle

 

[anonymous]

My docs tried to lower my antibody count by doing plasmapheresis and giving me gammaglobulin. It lowered it some prior to tx, but not enough.
You can get these antibodies (called antihuman antibodies) from pregnancy, blood transfusions and tx. Not every cfer will have a high antibody count, even if they were pregnant. My blood actually reacted with my child's.. or rather to my ex husband's.
Hope this explains it more.
Christy

 

[Mike6sic6]

I'm not and have never been on oxygen, yet, so like i don't get it ?

well i was on oxygen once, cause the doc said there was a air pocket thing on my right lung, so i was on O2 for like 24hours, and that was summer 04', so umm yeah im confused