Tx Question

[anonymous]

As a mother of a 22 year old with CF, who is listed at two centers for tx (one actively). I would like some information from those of you who have gone through the transplant process (patient or family member) --what are your thoughts on the centers you've gone too? How long did you have to wait once you were at, or near, the "top" of the list? Were you happy with the center that you chose? Any "red lights" that looking back, that may have changed your decision. Any and all insights would be appreciated.

Thanks and blessings to all.

 

[IG]

You'd get a TON of info [things that you probably wouldn't even think about asking] if you went to the search option and searched transplant. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm the TXed person
The center that I went to... St. Paul in Dallas [Texas] was absolutely fantastic, the doctors know what they're doing (slightly hard headed and stubborn at times.. maybe that's just me though) the clinic as well.
Back when the listing format was different I was on the list actively for 3 years. Near the top for... 6 months I believe? I'd have to ask for sure about that one.
As stated before, terrific clinic very happy with it.
Any red lights... pah. Everything. Transplant was my dead last option. ::insert morbid humor here:: ironically it was literally do the transplant or end up dead. Wasn't liking the dead part so much. Back then anything would have made me change my mind because to my mind I didn't need the transplant. The opportunity came and well.. I'm here. The one thing that would have made me change my decision would have been the hospital. The Transplant clinic was good, the surgeons were good, the doctors were good, but St. Paul sucked. Big time. The right hand didn't know what the left hand was doing. Nurses were not the friendliest nor the most understanding [rather impatient and felt they didn't have time to answer pertinent questions posed by the patient].

Now if I had to go through the same process since I've moved... I don't think I'd do it up here. Being on the list for 3 years, knowing my previous TX doctors for longer... having them do such a wonderful job last time.. I'd move back home to Texas if I had to go through something like that again. Not that the UPenn doctors aren't good, just well, hey it worked out great the first time why push my luck? I'd even put up with sucky hospital care at St. Paul if I had to. Of course I'm not planning on this happening but idle minds and all that...

 

[anonymous]

I talked to two centers and picked the center that fit my needs for my medical condition and life expectancy at the time. You will want a center (group of doctors and nurses) that your comfortable with and your child likes (your 22 year old). Ask for the feelings with the staff from your child, your child is the one who will have to fight the struggle.

I would look at the second wind site and the number of total TX/year and the number over the years is important to some (me) along with the 5 year survival rate. Another concern is the aggression of the center, will they take you if you go down hill quickly and try and perform the TX even if your on a vent? I wanted a center with an attitude that they can deal with most if not all issues. I would not feel "warm and fuzzy" about a center doing a couple of TX's per year without the full support from the hospital or university, committed to doing transplants.

Red lights for me is that the nurses were voting on a union, many were leaving, and my wife did my nursing 12 hours per day for close to 3 months (I had some issues). My wife is a nurse, she liked the TX staff, and we still trust the TX surgeon, and the pulmonologist. Some of the floor nurses were a nightmare and scared the heck out of me at the time. I had many nursing "screw ups" when my wife was not around (sleeping). I would try and pick a program that has some stability, if the surgeon is new, the pulmonologist are recent, and the nurses are playing musical chairs, "I" would look elsewhere.

I crossed the country for the TX program, this program was 2,400 miles from home.

Sorry the wait is different under the new priority system, ask the TX center. When I was listed I was told a 2.5 year wait would be needed, but assured that I would likely get in earlier if needed. I moved after one year, had another sinus surgery and went active within three months of moving. From move to TX day was 2.5 months, total time on list around 1.5 months.

I am five years out and very active.

CF 55 TX cepacia

 

[anonymous]

Hi mother of 22 year old,

My lung tx was 8 years ago at Univ of North Carolina Chapel Hill.

My experience, why I chose them, any redlights?

I had a good experience with UNC. When we did encounter an issue we did not understand, did not think was right, questioned, or unhappy about, we made sure to speak up and not sick back and brew over it. I would pick them again for myself.

Living in New York state, the move of 800 miles was big... and I mean traumatic. Often when we are that sick, we want to do what they call "homeing". You want to stay close to home, friends, family, familiar places and not have to learn a whole new way of life. But often what happens when you choose a center that is the closest, rather than one that has a great reputation, great experience, good success, doctors that have been together a long time, you might have a bit of a rougher time with recovery, success. So if possible, don't "home", find the best.

As far as the wait, well the lung allocation system has changed a great deal since I had my tx. Back in 1997, you had to wait for lungs when your name reached the top of the list, decided by the length of time you were on the list, and your blood type and size. Now it is how sick you are and how well you are expected to do. I waited a total of 30 months for my lungs. I waited 3 months down in North Carolina.

I hope your daughter gets her lungs as soon as she needs them. You might want to see if there is a support group at the center so she can hear the people who are pre and post tx talk about their experience.

Good luck
Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I was transplanted twice. The first time I was called to Chicago first and it was a go. I did well for nine years then got back on the list again. My second time was very close to my house which it made it easy for all of us. I was thinking of going to Duke because they do so many more transplants per month compared to most transplant centers and have a good program. I feel blessed that I was able to stay in Florida for my transplant and got the best treatment. Wherever you go, I would check out the number of transplants that are preformed each year and their success rate. IF you are able to relocate than it is best to move to the place that you like the best that fits all your needs including what I mentioned above. Best of Success
Risa

 

[anonymous]

Risa-
Wow! I remember reading some of your posts years ago and I wondered where you went. I dont think I ever talked to you personally but I remembered your name. I was hoping you were doing well actually, and thought of you when dr.'s started to bring up the tx situation....
I am glad to hear that you are doing well...

Caitlin
22 w/CF, b cepacia