CF Lung Transplant.....

[anonymous]

I am a 36 yr old female with CF....my brother is a 28 yr old with Cf who was just released from the hospital after having pneumonia in his lungs and is now on 24/7 oxygen and has to have lung transplant. My question is: Can I be a donor even tho I have a very very very very mild case of CF?

Thank you

 

[Emily65Roses]

My guess would be no, because if they go through the trouble of doing a lung transplant (as we know is huge major surgery), they want to put in the best possible lungs they can find. But it's a question to ask his or your docs.

 

[Purplelungs]

NO...most likely not. They want lungs in very very very good condition. A person with cf needs a double lung. They prefer a cadavair donor but some cases need living donors...where they take one lobe from two people (your left lung has 2 lobes and your right has 3-or the other way around). They do not want to remove a cf lung and put another in there no matter your form of cf. Plus you will need all of your lungs because there is never a garentee what will happen lung wise in the future to you.
Amanda


if i am wrong please please correct

 

[anonymous]

Agree with above, also though, I didn't see this mentioned but I just skimmed-the new transplanted lungs never become effected by CF, so if they were to transplant your lungs your brother would be in the same boat with lung problems in the very near future.

I do think that you wanting to do this though, is a wonderful thing!

Julie (wife to Mark 24 w/CF)

 

[Emily65Roses]

Julie makes a good point. It is extremely wonderful for you to want to do this. I thoroughly agree. I know it isn't the same, but maybe instead (assuming that they won't let you donate) you could... raise CF awareness or funds... or raise awareness for organ donation. Have an event where people come in and change their lisences to legally allow for organ donation after death, or whatever it is that you need to do. It's not the same, as it doesn't immediately apply to your brother, but it's a good place to focus your energy.

If you want to try something immediately connected to your brother, you could help him with any and every little things. House work, groceries, yard work, errands, driving to and from appointments, helping with therapy and meds, etc etc. The only problem with my making this suggestion... is that as his sister, I imagine you're already doing some or all of this. So I'm sorry I couldn't be of much help. But you have loving intent, and I'm sure your brother appreciates it. <img src="i/expressions/rose.gif" border="0">

 

[JohnnaMarie]

I think that is great that you have so much love that you want to give some of your self to help. But, I am sure your sibbling needs a really really healthy set of lungs to have the best chance to get well. And since you have CF you need all your lungs to stay healthy for yourself.<img src="i/expressions/heart.gif" border="0">

 

[RadChevy]

Hi,

You are true loving sister.. and it broke my heart to hear you say you would want to donate to your brother.

Living Lung Lobar tx is an option, if there is not time to wait on the list. Living Lobar needs two donors, the same blood type, and free of illness and your PFT's have to be 100% at least. You will lose some lung function if you donate, about 10-15%.

No your brother does not want CF lungs. Cadaver lungs are the most common way to go.

What is your brothers FEV1? Lung tx surgeons do not want to tx anyone until they truly need it. Too many people get new lungs too soon, and what they do is cut their life short and put themselves at risk for cancer, infection, organ failure, and you want to put that off as long as possible.

With the new lung allocation beginnning May 4th, it would almost seem that living lung lobar tx will not be done so much, because orginally living lobar was created to get those people who could not survive the wait new lungs. But now that they are going to do the lung allocation by how many days can you survive in the coming year with present lungs, and how many days benefit would you get with new lungs, your brother should get many points.

What center is your brother looking at to get tx'd at? I had my lung tx almost 8 years ago and my sister 4 years ago.

Joanne



Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm

 

[Emily65Roses]

Quick question... a tx puts you at a higher risk for cancer? Why, and what kind, do you know?

 

[thefrogprincess]

Great advice everyone. And you're right that a CFer cannot donate even a part of their lungs. The lower lobe (which they use from a live donar) are the first part of the lung to get damaged in CFers so it just won't work.

But here is something cool. If you ever need a transplant ask to have your heart evaluated to donate (stay with me here). With a double lung transplant it is easier to do the heart at the same time because everything in there is connected. But many times the CFers heart is in perfect shape and can be donated to someone else! You can be a living heart donar! I saw an interview with a CFer who did this a few years ago. He got to meet the woman who got his heart. It was one of the best things I ever heard.

 

[RadChevy]

Emily,

You are more at risk for many forms of cancer post tx.

The main reason being you are immune suppressed and if you immune system is not "100%" it means your body cannot fight cancer risks so well. I would guess that skin cancer is the #1 cancer post tx.

There is something also called PTLD - Post Transplant Lymphoproliferative Disease - it is a "Form of" cancer in a way. You can grow tumors on legs, arms, nodules in lungs, breast cancer, and other areas. The reason some get PTLD is that they were a mismatch in their EBV status. EBV is Epstein Barr Virus - or mono to most of us. If you are negative EBV status, and your donor was positive EBV status, you can catch the EBV from them and PTLD can develop. The most common solution to this PTLD or if EBV numbers rise in your body post tx, is to lower your immune suppression meds down, so you can fight it off better. Course this is a balancing act as you don't want to go too low, or you can reject.

This is a very brief overview of cancer post tx.... now does this happen a lot??? No.
I think again the skin cancer is the biggest issue, and we are told post tx, cover up, stay out of sun, sunscreen. I do garden, I do get some sun, along with covering up and sunscreen, and i am almost 8 years out, no cancer yet. So it is not a real real common thing, but it does happen.

JOanne Schum
luckylungsforjo@aol.com

 

[IG]

For the PTLD you forgot to mention that they can also surgically remove it.
I should know, I just had a lump from my right lung last night (preliminary results showed it as PTLD but "officially" came back as inconclusive)