Transplantmommy
New member
Hey there everyone! I am fairly new to this site and just wanted to tell you all a little about my transplant experience.
I was told in November 2004 by my CF doc that it was time that I looked into transplants and that I needed both lungs and a liver. He didn't know if any transplant hospital would be willing to do this so we had to do some research. We started with calls to Mass General and they said that they weren't sure if they would do it and then my insurance would not participate with that hospital so it was a no-go. I got a list of places that my insurance would pay for, and other than NY Presby, the closest one was Cleveland Clinic in Ohio. My doc said that he prefer me not to go to Presby so we tried Cleveland Clinic and they were hesitant to do double lung and liver because they had never done it but they wanted to see me anyway.
I had my first set of evaluations in June 2005 for my lungs and then evaluations for my liver in July. I got a letter stating that with 40% function, I was likely too well for transplant at that point, but they still wanted to keep up with me. Well, the very end of July, I found out that I was pregnant. It was confirmed through an internal ultrasound on August 1 that I was 9 weeks pregnant. All of my docs (CF, OB, and transplant docs) that I should abort the pregnancy because it would hold off the transplants. Knowing that this was my only chance, I went ahead with the pregnancy, with no complications other than the normal lung infections, and had a healthy baby boy who was 7 weeks early on January 10, 2006. He is now 2 1/2 and still healthy!
I went back for evaluations in March 2006 and at that point they decided that they would try to ge me lungs and liver. Carrying a baby for 33 weeks proved to them that I was strong enough for all three organs!! After more testing, my case going to the hospital board, and then to UNOS, I was listed at the Cleveland Clinic on both the lung list and liver list on August 24, 2006. I was in and out of the hospital a lot and had a couple of life flights to Cleveland Clinic. I was in the hospital in Cleveland for 63 days waiting from Sep to Dec and then was released since I didn't get anything. I spent the holidays and Brady's first b-day at home and two weeks later was admitted to the hospital for major Hemoptysis on January 22, 2007 and after 2 embolizations, was transferred to Cleveland (by life flight) on January 27. Three days later I was told that organs were available (in the middle of a snowstorm with no family with me) and I was going to be the first double lung and liver transplant at the Cleveland Clinic. My husband made it an hour before I went on the operating table.
The surgery lasted 9 1/2 hours with absolutely no complications. My transplants anniversary is January 31, 2007 and I am now loving life!! A lot of the trouble after transplant was pain issues and trouble swallowing. I also had no voice as my left vocal cord was damaged by the vent. Recovery was quick...I was out of the hospital in 12 days and home 2 1/2 weeks after that. I have had acute rejection twice but nothing major.
I have left out a few things because I didn't want this to go on forever so if you have something that you want to know....just ask!
I was told in November 2004 by my CF doc that it was time that I looked into transplants and that I needed both lungs and a liver. He didn't know if any transplant hospital would be willing to do this so we had to do some research. We started with calls to Mass General and they said that they weren't sure if they would do it and then my insurance would not participate with that hospital so it was a no-go. I got a list of places that my insurance would pay for, and other than NY Presby, the closest one was Cleveland Clinic in Ohio. My doc said that he prefer me not to go to Presby so we tried Cleveland Clinic and they were hesitant to do double lung and liver because they had never done it but they wanted to see me anyway.
I had my first set of evaluations in June 2005 for my lungs and then evaluations for my liver in July. I got a letter stating that with 40% function, I was likely too well for transplant at that point, but they still wanted to keep up with me. Well, the very end of July, I found out that I was pregnant. It was confirmed through an internal ultrasound on August 1 that I was 9 weeks pregnant. All of my docs (CF, OB, and transplant docs) that I should abort the pregnancy because it would hold off the transplants. Knowing that this was my only chance, I went ahead with the pregnancy, with no complications other than the normal lung infections, and had a healthy baby boy who was 7 weeks early on January 10, 2006. He is now 2 1/2 and still healthy!
I went back for evaluations in March 2006 and at that point they decided that they would try to ge me lungs and liver. Carrying a baby for 33 weeks proved to them that I was strong enough for all three organs!! After more testing, my case going to the hospital board, and then to UNOS, I was listed at the Cleveland Clinic on both the lung list and liver list on August 24, 2006. I was in and out of the hospital a lot and had a couple of life flights to Cleveland Clinic. I was in the hospital in Cleveland for 63 days waiting from Sep to Dec and then was released since I didn't get anything. I spent the holidays and Brady's first b-day at home and two weeks later was admitted to the hospital for major Hemoptysis on January 22, 2007 and after 2 embolizations, was transferred to Cleveland (by life flight) on January 27. Three days later I was told that organs were available (in the middle of a snowstorm with no family with me) and I was going to be the first double lung and liver transplant at the Cleveland Clinic. My husband made it an hour before I went on the operating table.
The surgery lasted 9 1/2 hours with absolutely no complications. My transplants anniversary is January 31, 2007 and I am now loving life!! A lot of the trouble after transplant was pain issues and trouble swallowing. I also had no voice as my left vocal cord was damaged by the vent. Recovery was quick...I was out of the hospital in 12 days and home 2 1/2 weeks after that. I have had acute rejection twice but nothing major.
I have left out a few things because I didn't want this to go on forever so if you have something that you want to know....just ask!
