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Hi, There are several people who are now post lung tx 18 years... they might be single lung. But I also know a man who was 17 years post, with a double lung. He did die from other causes. There are CFers who are about 15 years post lung tx, with their first and only set of donor lungs...

Hi, Post lung tx life is great..... I mean Super!!! But, I will be fair, it can be a roller coaster, there are peaks and valleys, and sometimes the first year can be rough. Catching stuff post tx... well I know pre tx I thought I would catch stuff a mile from the person who was infected...

Yes, a pilot...SHE flys small planes I believe. She had her living lobar lung tx in 1996 at UNC... .she actually has her story in Taking Flight.... Having connections with so many people around the U.S. and the world..... I tend to encounter information I thought not possible. Joanne

Hi Kelly, Lung tx is a choice... a choice between life and death. When your doctors approach you about lung tx, they are pretty much saying you are in the end stage of the illness ( I don't like the words end stage, but have not devised better words for it) and that your life expectancy is...

Emily, Very interesting idea.... I believe a woman had an ovary tx... if I remember correctly... I am not sure that you take immune suppression drugs for that... but would guess you would? If the organ/tissue you have tx'd does not have a blood supply, you do not have to take immune...

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...

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...

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...

As far as cepacia and lung transplant. There are now about 5 centers in the U.S. that will do those with Cepacia. As the man who is 54 with Cepacia and post lung tx, Duke and UNC are two of them. UNC now is the only one who will do type 3 cepacia. The problem with cepacia is that it can...

There are about 5 centers in the U.S. that will tx a person with CF and Cepacia. It is not an easy surgery and risk of it going into the new lungs, or the blood stream are high. Once you have those new lungs, you no longer have the Cepacia... unless it got left behind. That is the purpose...

There are about 5 centers in the U.S. that will tx a person with CF and Cepacia. It is not an easy surgery and risk of it going into the new lungs, or the blood stream are high. Once you have those new lungs, you no longer have the Cepacia... unless it got left behind. That is the purpose...

Kathy, Trimmed Lungs - I was 5"5" and about 100 pounds at transplant time. My donor was over 6 feet and over 20 pounds. I needed the lungs desperately and my lung tx surgeon is willing to "trim" the lungs to fit the chest size. In my case, what that meant was he removed the middle lobe on...

Hi Jan, What center is your husband listed at? Is he in a pulmonary rehab program? I was listed when my FEV1 was 28% and 30 months later when I got lungs, I was at 18%. My oxygen use was about 4 liters at rest and 6 with exercise at the time of my tx. I was in a pulm rehab program and that...

Hi, The wait at several lung tx centers is very short right now Ochsner, Duke, Cleveland, Mayo- Jacksonville - are the shortest waits. But.... The New Lung Allocation Rules are going to take effect in April of 2005. The new allocation will mean that the sickest go first. The wait for lungs...

Julie, Most of the scars you saw pictured in those web sites were only weeks or days after tx.... they will lessen. I have to struggle to see my scars.... but it makes perfect sense to be concerned and self conscious about them. Yes, I do know one woman who had plastic surgery post tx. I...

Julie, Being concerned about the scars is normal.... but post tx the folks realize it is a small price to pay and that it is worth it. With time the scar diminishes wonderfully. I know that mine has. The chest tube scars are the bigger scares. The great thing is I can wear a bikini if I want...

Eliana, I have had many episodes of hemoptysis, both minor and major. It was never easy, or easy to accept it. I know I asked my CF center to explain them to me, hoping that would ease my mind... it did. They explained a capillary and broken, " a tiny, tiny, tiny blood vessel". Some reason...

Nicole, There are many CF Awareness Bracelets out there now.. I am not sure what one you are referring too... but I do know about the one below. CF Awareness Bracelet – Great Gift for the Holidays Need some fabulous gifts for the special women in your life this year? Would you like to help...

Nicole, There are many CF Awareness Bracelets out there now.. I am not sure what one you are referring too... but I do know about the one below. CF Awareness Bracelet – Great Gift for the Holidays Need some fabulous gifts for the special women in your life this year? Would you like to help...

Hi, I guess I must reply to this thread. When I read the last person's comments, 'you are trading one set of problems for another set of problems', I knew I had to jump in. That comment is straight out of the text book, or the mouth of doctors... who think they know what CF lungs are like and...