Lung Transplants

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13 Comments

Comment by Kathryn Flynn on July 16, 2008 at 9:38am

Well-Justine- I have two that are just sitting around. I wanted to give them to my donor family but they don't want contact. I have been wondering what to do with them- maybe give them to my daughter.

Comment by Justine on July 12, 2008 at 12:02am

Hellloooooo everyone...and welcome new members to the lung gang..woohoo!!! I seem to be on my Facebook account more than here..but keep dropping in....and sending lotsa happy smiles to everyone from across the pond in rainy England...blah. And, if anyone wins any medals at your Games...I have a lovely wooden cabinet with glass doors - that I would be more than happy to keep..I mean look after your trophies..lol x x x

Comment by Kathryn Flynn on July 8, 2008 at 5:27pm

Wow!! I have been away for a bit and we have more members! That is exciting.

Comment by Kathryn Flynn on May 17, 2008 at 11:07am

You are wonderful Risa. I am glad your second transplant is doing well.

Comment by Risa Gans on May 15, 2008 at 7:24pm

Hi All
Just wanted to say hello. Well I had many R's with my first tx and then the big C.R. and funny you should mention R because I have a hard time saying C.R. lol

Thankfully this Tx, I am doing Awesome. I am extra careful but I am proud of who I have become with all I have learned over the years.

This is a nice community
see you all on transplantbuddies when you visit.
love,
Risa

Comment by Kathryn Flynn on May 7, 2008 at 3:07pm

Hi Steve-
It is so good to have you post. I have just been searching for topics of interest. Since I was fairly young when I waited and received my transplant I have had numerous CF friends. One had a lung/liver quite some time ago in CA- I forget what center. I was relucatant to say that as he got CMV and they couldn't stop it. Now that is very unusual, I thought- my center puts everyone on medication for CMV for awhile after and if you are neg and your donor poistive they put you on meds for life. In fact if you negative they might even put you on meds forever just in case you are exposed. At any rate it was very sad as he was only 29.
Duke is gung-ho for nissan's but I have escaped the knife to date with prilosec OC. I have heard both postive and negative things about the procedure but most people seem to think it is a small price to pay to not go into rejection.

Comment by Steve Ferkau on May 7, 2008 at 2:55pm

Hi Kathryn!!! (& Patti, Kim, Sandy & Justine!)

Glad you created this group, Kathryn! I might have done so eventually, but I just haven't gotten here enough -- I'll have to work on that... And nope -- I haven't had a nissan fundoplication... Though they seem to be all the rage now! I'm eight years post-transplant and I don't think they were as common back when I was transplanted...

I know that there is a major concern with reflux... There have been several stories in the past few years linking reflux and gerd with rejection in lung transplant patients... There is also suspicion that reflux and "silent aspiration" may be a cause of some types of idiopathic pulmonary fibrosis / IPF...

I believe that some centers are requiring the procedure either before or during transplant -- even if one doesn't suffer from reflux, the possibility is strong that they may post-transplant... I did Prilosec and Previcid for years and now I'm on Protonix -- they seem to do the trick for me...

Like Patti -- I'm a CFer... And though it is unusual to get lung and liver, liver transplants are surprisingly numerous with cystic fibrosis patients! (We always assume lungs, but there are livers out there too -- Patti got a double-whammy!)

Comment by Kathryn Flynn on May 3, 2008 at 1:25pm

Hi Patti-
That is very unusual to get both lung and liver. I hope you are doing well. My diagnosis was pulmonary langerhans cell histiocytosis. I am 12 years out like Kim.

Comment by Kim Jacques on May 1, 2008 at 9:53am

I'm almost 12 years post heart/double lung from Esignmengers (sp?!?!) Syndrome and PPH.

Comment by Patti on April 30, 2008 at 10:28am

Hey all. I am 26 and just over 1 year out from double lung and liver transplants due to Cystic Fibrosis.

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