Transplants - Where did you have yours?

[Laurie]

Hello,
My name is Laurie and I would like to have a lung transplant.

If you have had one, what hospital did you have it at?

Did you have to move there and if so how long did you have to live there?

How long did it take to get your transplant from the date you were listed?

What was your FEV1 when you were listed and what was it at the time of transplant?

Thanks so much for helping me out!

 

[IG]

St. Paul in Dallas.

Yes, temporary relocation though. About 9 months total including before and after.

3 1/2 years give or take some. Due to the new listing process it's on a need basis.

39% FEV1, then around 21% FEV1

 

[anonymous]

Duke in Durham N.C. (around 8 miles from UNC Chapel Hill). At the time, the only two "serious centers" for cepacia's.

Hard to do a TX outpatient. Drove 2,400 plus miles both out and home. I had issues, 10 months in N.C. I am very old and happy about that. You hopefully will be home in less time. I went XC skiing today (for my PT) so it was worth the effort. I can likely kick you butt skiing.

Under the old system 1 year six months total time, from the move date to the TX was 2.5 months.

Moved with an FEV-1 under 20% perdicted (around 18 as i recall)

Go to the second wind web site and try and find the centers that manage to do quite a few TX's. Likely, your insurance or medicare will decide which center you will go to for the TX.

Best of luck!

CF 55 TX cepacia

 

[anonymous]

Friday January 20, 2006 8:21 PM (NEW!)
Hi Laurie,

Myself and my sister had our lung tx's at University of North Carolina at Chapel Hill, despite we live in the Rochester, New York area. We chose UNC because of the survival numbers for CF patients, the fact they have done so many CF patients, and that Dr. Egan had dealt with many complications of CF patients and encountering issues would be more second had to him.

The lung allocation has changed. I had to move to UNC area 3 months before they thought I would get lungs, as my name had reached the 2 or 3 spot on the list at their center. Now you are not listed by how long you are on the list, but rather your severity of illness and also the expected survival.

My total wait time for lungs was 30 months from the time I was listed until I got my lungs. I was listed at 28% and got my lungs at about 17-18%.

Well worth the move, the time and the aggravation it can entail. Life is vastlly different.

Check out my web site, many members here particpate in the site. WE have email, chat, and resources.
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
If I can be of any help, don't hesitate to ask.

Oh yeah, I am now 8 years post tx.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

Joanne is great and has a great book too for all those who are waiting. Taking Flight. My story is on page 101 <img src="i/expressions/face-icon-small-smile.gif" border="0">

My name is Risa. I was transplanted in Chicago at loyola ten years ago today. I did wonderful for eight solid years. I had chronic rejection starting around the eighth year and decided to go for another transplant after loving life so much with new lungs. I am very tall so I only waited two months the first time and the second time I only waited five months. Two times, I received male lungs.

My second transplant took place in Florida where I live and it was only one hour from my home. I am doing better post transplant the second time so I am so happy that I took the chance again. I was told my wait time would be short because there was nobody who was around my height.

I think it is great that you have decided to go for a transplant. Exercise is so important while you are waiting. Even if you are tired you will feel better after you exercise. After your transplant surgery, your body will be stronger because you were in good shape before.

IF you have to relocate consider going to Duke as their wait time is rather short compared to most centers and all the people who go there do well from what I hear. They do get many organs.

At the time of my first transplant Loyola was doing many transplants too and that is why I did not wait too long either.

Today, you are able to get listed at more than one center as long as each center you choose is not in the same region. I wish you all the best with your waiting and your new venture on a new life.

BEst of Success and if you want to read another website with people who are already transplanted go to
<a target=new class=ftalternatingbarlinklarge href="http://transplantbuddies.org
">http://transplantbuddies.org
</a>
Ciao for now
Risa

 

[anonymous]

by the way, my FEV 1 was probably 14% at the first transplant and about 21% at the second time.

Keeping up on PFT's is essential for all transplanted lung patients. No matter how great you feel do not mess up with your checks
Risa

 

[Diane]

Risa,
Are you the same Risa that used to be on the gsh site?

 

[anonymous]

yes Diane. I am glad that you are doing well. I am so glad that GSH is good for CF. I do not know if GSH is good for tx patients but I would not take it every again. We are talking too different systems. WE can keep ourselves healthier in other ways.

Take Care
Risa

 

[Diane]

Oh Risa, I am so glad to hear you are ok. Last time i saw anything from you, you were in rejection and i hadn't seen a post from you after that and wondered what happened. When did you have the second transplant? I am assuming it was after the gsh fiasco you went thru. I'm just glad you are doing well <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Joanne,
How do I find out which centers have done the most CF patients and what their success rates are?

Thank you to everyone that has replied to my post. The more info the better off I am. I will have a tough road ahead of me finding a center that will take my case. My husband and I have to do it ourselves with the help of friends since our doctors have refused to help.

I am 29 years old and my FEV1 is at 20% but I am determined to raise or at least stabilize that number. I am eating healthier, raw vegitable and fruit juices througout the day and no dairy and very, very little sugar. I am on oxygen going on a month now.

 

[anonymous]

My husband was tx'd at Methodist, Indianapolis. He was placed on the list March of 04 and tx'd 10-31-05, thanks to the new rules, or he'd still be on the list waiting his turn. He is O positive, and that list is long. They did 50 lung tx's in 2005. They are awesome. Greg's FEV1 hovered around 30% from the time he listed until tx. He was on oxygen for 2 1/2 years. We live two hours from the hospital so we thankfully did not have to relocate, which was an extreme blessing since we own our home, our son didn't have to switch schools, our jobs and our families are here.

I might have missed this somewhere, but why won't your dr's refer you for tx? The first time Greg's pft's were in the 30's, we began asking our NP about tx. When he dipped to 29, she referred us. I'm not sure the dr. was totally for it, because he felt we were exchanging one set of problems for another set.

By the way, you might know, but tx doesn't look at FEV1, they look at FVC.

I wish you improved health and God's blessings.

Take care, jan
wife of Greg 46 cf'er w/cepacia, tx'd 10-31-05
www.standinginthegap4greg.org

 

[anonymous]

Hello Diane

Not sure if GSH was responsible for rejection for many reasons. Many tx folks experience rejection but I did not catch mine early enough. I ignored my numbers dropping because I felt too good. They the center did not think it was chronic at first so they treated me for acute which is curable. Well even after I started taking meds for Chronic I did not stabalize. I would say a year and half from the time I knew you I got transplanted. I lived with my first set of lungs for nine and half years to the date. Today would have been my tenth anniversary. My transplant date of my new lungs are 1/25/05 I was placed on the active list March 05 and so I did not wait long. I was the only one in the B group with my height which is 5 feet eight inches. I took a males lungs again. I feel tough lol

I was called on my GrandFather's birthday who passed years ago so while I was traveling to the hospital that night, I felt the presence of my Grand dad and he was watching over me.

So far my new lungs are working so much better than the first. I must say my first set took me far and wide with one hundred percent lung function for all those years.

I became diabetic two years ago but mild and only would take 2 units of insulin as needed. Now I am insulin free but I must exercise daily to keep my numbers low. I am eating lots of carbs now but I sometimes workout twice daily.

So much to do now that I can breathe. I hope that all those who need transplants get evaluated on time and get on the list as soon as they need to. Many people put that window of opportunity off.

Take Care of yourself
Risa

 

[anonymous]

Risa (or anyone else)
I'm curious what 'bugs' you cultured before tx and did you have them after tx too?
I have MRSA and psuedomonas now & wonder if that will still be an issue after tx too (if/when tx needed).

 

[anonymous]

Hi,

You can do a couple things to get the numbers of CF patients that a center does.

1. Call the center and get it right from the team. They have the most update info, and also can share more info than the other source I will give you. Have a list of questions for them. Like 1) How many lung tx's did you do in the last 5 years? What are the survival rate for 1, 3 and 5 years out? How many CF did you do? What is their survival for 1, 3, 5 years out.

2. The other way is to go to the UNOS site <a target=new class=ftalternatingbarlinklarge href="http://www.UNOS.org">http://www.UNOS.org</a> and do a search. You can get lots of info from the site. More than you need really.

Why does your CF center not want you to get a lung tx? That is so selfish and not professional.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I only ever had pseudomonas in the lungs pre and then had it of course in the lungs on some occasion but that is not all the time. I had staph in my sinus but that went away with proper irrigation.

As long CF patients post transplant keep their sinuses clear there is a good chance their lungs will be in great shape. I had one sinus surgery after my first transplant and my sinuses are in good shape. I take good care of them. I am going on ten years and will not need anymore sinus surgeries.

Risa as in Reeses Pieces

 

[mustangmousa]

I am currently waiting for lung tx at UPMC in Pittsburgh PA. I've had to relocate and have been waiting for about 3 1/2 weeks so far. I know that they take very high risk patients, they are one of the top 5 tx centers in the country and did 90 lung transplants in 2005 which is a huge amount! The wait time is pretty short, not very many people on the list because they've been doing so many. Their success rate is 90% for 1 year which is better than the national average. They specialize in CF patients with Aspergillos, but they also do Cepacia. I know that they have done transplants on elderly people that other centers have turned away. They are very aggressive and have a wonderful team. Just some information for you about UPMC. I live in TN, but came here because I think they have the best success rates. If you have any questions, let me know. Good luck.

 

[Marjolein]

My tx center does look at the fev1, i've never heard them talking about my fvc.. And i was refered by my cf doc because my fev1 was close to 30%. I was listed but went inactive after almost 2 years because my health was really stable and i could do relatively much with my lungfunction. Now i'm active again, with my fev1 at 18%, and i'm top of the list. In 7 years my fev1 didn't drop much but it started again this past year.

 

[anonymous]

I was wondering if any of you have had MRSA before transplant. And If you know of a center who does transplant CF with MRSA. I became MRSA positive in March and my docs say that it is no big deal but everything I read it is a big deal when you go for a transplant.

 

[anonymous]

I don't think MRSA should be an issue. The best thing for you to do is just call the center's that you are interetsed in & ask if they take MRSA patients. Sometimes burkholder cepacia and burklolder gladiolia (sp) can be an issue, but I haven't heard of MRSA being something that some centers shy away from.