Emily65Roses
New member
That weirded me out for a second. my doctor is Dr. Marie Egan at Yale Children's. Haha.
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Lung Transplant Testing
- Thread starter Joblazer86
- Start date
Hi,
Lauren who is the young lady who had type 3 cepacia and Duke turned her down after she moved to the area, did have her tx at UNC. She lived just about a year post tx.... but her death did not have to do with cepacia. She had other health problems that arose. Lauren was a good friend and that was very upsetting for me.
The other centers that will consider cepacia.... Pittsburgh, but now you say they will not.. .so I guess dump them off the list. Univ of Cleveland.... not the Cleveland Clinic. Childrens hospital of Wisconsin, I would assume then that Univ of Wisconsin MIGHT consider cepacia, Univ of Alabama. - they will consider, they have done 2 or 3 cepacia in the past, no success yet.
As far as Dr. Egan holding the Cepacia record... I think it is accurate. I have asked about this in the past and believe that is what was said. Dr. Egan trained at Toronto under Dr. Joel Cooper... of course the father of lung transplantation. I know that Toronto does Cepacia, and has a rather large number of CFers with it... but in the U.S. many CF centers send their cepacia patients to UNC, as they know Dr. Egan has the success and history of it. I am not sure about Europe. I am sure there is one or two centers that do it there, but not sure which ones off hand.
Glad to year you are doig so well!!
Joanne Schum
luckylungsforjo@aol.com
Lauren who is the young lady who had type 3 cepacia and Duke turned her down after she moved to the area, did have her tx at UNC. She lived just about a year post tx.... but her death did not have to do with cepacia. She had other health problems that arose. Lauren was a good friend and that was very upsetting for me.
The other centers that will consider cepacia.... Pittsburgh, but now you say they will not.. .so I guess dump them off the list. Univ of Cleveland.... not the Cleveland Clinic. Childrens hospital of Wisconsin, I would assume then that Univ of Wisconsin MIGHT consider cepacia, Univ of Alabama. - they will consider, they have done 2 or 3 cepacia in the past, no success yet.
As far as Dr. Egan holding the Cepacia record... I think it is accurate. I have asked about this in the past and believe that is what was said. Dr. Egan trained at Toronto under Dr. Joel Cooper... of course the father of lung transplantation. I know that Toronto does Cepacia, and has a rather large number of CFers with it... but in the U.S. many CF centers send their cepacia patients to UNC, as they know Dr. Egan has the success and history of it. I am not sure about Europe. I am sure there is one or two centers that do it there, but not sure which ones off hand.
Glad to year you are doig so well!!
Joanne Schum
luckylungsforjo@aol.com
Uncertain if Pittsburg does cepacias but in 2000 both Stanford and Pittsburg said that if the CF became more multi drug resistent while on the waiting list, they would not do the TX. That tells me they will not do cepacias because drug resistence is 98% likely (over a several year wait). Alabama does not do enough TX's. UNC does alot and has the experiance, a center that does a couple a year is not of interest. Duke averages around 60 TX's a year, number do matter.
Cooper is at Barnes and does not do cepacias (they turned me down in 2000). The wait in Toronto is shorter than the US but the total # they do per year is an unknown.
Joanne, are you still in the Chapel Hill area or have you moved from the center. Many seem to stay in the geographic area of their TX center.
CF 54 TX cepacia
Cooper is at Barnes and does not do cepacias (they turned me down in 2000). The wait in Toronto is shorter than the US but the total # they do per year is an unknown.
Joanne, are you still in the Chapel Hill area or have you moved from the center. Many seem to stay in the geographic area of their TX center.
CF 54 TX cepacia
Hi,
No I do not live in the UNC area any longer.
I am from upstate NY, and had to move to the UNC area about 3 months before tx, and lived there for 4 months after. I do go back once a year for clinic. I also went into chronic rejection last year, but now on a great drug protocol and my numbers improved a great deal. So I am down in that area often. My sister also had a lung tx, so we go to her clinic appts.
Do you live in the Duke area now? I know lots of pre and post recips from Duke... I wrote a book on lung tx and got to know many that way.. I also have a web site for pre and post lungs.. .so get to know many, many great people all around the world.
Joanne Schum
luckylungsforjo@aol.com
No I do not live in the UNC area any longer.
I am from upstate NY, and had to move to the UNC area about 3 months before tx, and lived there for 4 months after. I do go back once a year for clinic. I also went into chronic rejection last year, but now on a great drug protocol and my numbers improved a great deal. So I am down in that area often. My sister also had a lung tx, so we go to her clinic appts.
Do you live in the Duke area now? I know lots of pre and post recips from Duke... I wrote a book on lung tx and got to know many that way.. I also have a web site for pre and post lungs.. .so get to know many, many great people all around the world.
Joanne Schum
luckylungsforjo@aol.com
I left NC as fast as possible, my post TX was interesting and I spent over 2 months in the hospital and then another couple of week back in the hospital. I spent 10 plus months in the area. Duke lets me off for 6 months at the most (distance from the west is a major trip). They would prefer if I remain in the area. Any sign of a decrease in PFT's results in clinic every 3 months. No rejection, yet that fear is constant. Chronic rejection appears to be common as the time goes by for many CF's.
What is the drug protocol they are using? I assume you know Suzy that has had a second TX at UNC and went to Alabama for photopharisis. Quite an adventure.
How religious are you with PT? It seems any slack and potentially my PFT's will see a decrease. Figures on exercise seem nonexistent. Many seem to reduce the activities after the initial PT.
CF 54 TX cepacia
What is the drug protocol they are using? I assume you know Suzy that has had a second TX at UNC and went to Alabama for photopharisis. Quite an adventure.
How religious are you with PT? It seems any slack and potentially my PFT's will see a decrease. Figures on exercise seem nonexistent. Many seem to reduce the activities after the initial PT.
CF 54 TX cepacia
Hi,
The protocol I am now on is
Prograf
Cellcept
Prednisone
Rapamune
I also take Zithro
The reason it is sort of unique is that UNC did not remove the cellcept/imuran component when they added the Rapamune... that is the typical thing to do. They have having success with it at UNC and some other centers are not doing it as well.
Yes, I know Susy.... she is a great friend of mine, and my family. She had her 1st tx about 2 weeks after my sister did in 2001. Her dad and my dad are in the same business.... so they are close.... and Susy did the cover of my book... "Taking Flight: Inspirational Stories of Lung Transplantation"..... and we see each other every time I am down at UNC, and hoping her family will come up to NY and see the area and visit... been wanting to do that for a few years, but knew it would have to be after retransplant... and she is just an inspiration to so many... love that girl.
May I ask your first name... I keep saying "Hi"... .LOL
Joanne Schum
luckylungsforjo@aol.com
The protocol I am now on is
Prograf
Cellcept
Prednisone
Rapamune
I also take Zithro
The reason it is sort of unique is that UNC did not remove the cellcept/imuran component when they added the Rapamune... that is the typical thing to do. They have having success with it at UNC and some other centers are not doing it as well.
Yes, I know Susy.... she is a great friend of mine, and my family. She had her 1st tx about 2 weeks after my sister did in 2001. Her dad and my dad are in the same business.... so they are close.... and Susy did the cover of my book... "Taking Flight: Inspirational Stories of Lung Transplantation"..... and we see each other every time I am down at UNC, and hoping her family will come up to NY and see the area and visit... been wanting to do that for a few years, but knew it would have to be after retransplant... and she is just an inspiration to so many... love that girl.
May I ask your first name... I keep saying "Hi"... .LOL
Joanne Schum
luckylungsforjo@aol.com
supermanfan
New member
Did any of you know that the protocal for a transplant has changed. It use to be on a size, blood type, and other specific things that would be important for compatability. How besides all that it is on a point system. The person with the most points is at the top of the list for transplant. Ex. Breathing tests and the results %, hospitalizations, medications. So if you are a CFer and have been in and out of the hospital because you are sicker than another person on the list... if that person has been on the list longer, you will get the transplant first if all the necessary compatability issues match.