Post by Colleen-NC on Apr 7, 2009 6:29:51 GMT -5
My Journey so far:
My Journey to Lung Transplant!!
Took me a while to get up the courage to consider it but when you are finding it hard to walk across the room, it makes it a little easier. I decided to try for LVRS first because it does not involve anti-rejection drugs and for most people it has a good outcome for a few years, kinda using it as a bridge before transplant. I had also found out that Dr.Cooper had moved to the University of Pennsylvania. He is the pioneer of lung transplant & LVRS and I figured that I had a chance to be operated on by the best so I might as well go for it, so I did.
I called Rebecca at Dr. Coopers office to find out what I needed to do. He needed to see my last Ct Scan and Chest X Ray, so I gathered them up and sent them down. It was only a few days later that Rebecca called me back and said that I could be a candidate for LVRS so she scheduled the testing for the 2nd week in January 2006. There was a lot and I can’t find my schedule so I am doing this from memory and I hope I haven’t forgotten anything.
Ct Scan, Chest X ray, Muga Scan – heart, VQ Scan- Lungs, PPD & Anergy Panel – TB Test, 6 Minute Walk Test, Exercise tolerance test, Full PFT in the Box, Blood Work.
This was scheduled over 3 days and they can’t do the MUGA & VQ Scan on the same day because of the dye & gasses that they use. It really wasn’t too bad; I thought I did pretty well. The hospital is huge and it was a lot of walking around but I refused to use a wheelchair, I needed to walk!! I was tired when it was all done.
Then I had my appointment with Dr. Cooper. From the findings of the VQ Scan and CT Scan, I was not a good candidate for LVRS, the damage was too far advanced, went into the lower third of my lungs and he felt that there was not enough good lung left to make it worth the risk. I was so disappointed!!
I went home to ponder all this over. My pulmonary doctor kept encouraging me to go for transplant. I was too young to just not do anything. So I had all my records sent over to the lung center and scheduled a consultation. I was scared!! How could I have let myself get to this?
??
Anyway, I needed a few more tests so we scheduled another 2 days of testing. I needed a Bone Scan, heart echo and ekg, heart cath and had to talk with the Social Worker , Psychologist, and Nutritionist.
After all this was done, I went home for 2 weeks to wait. They had to review my tests and decide if I was a good candidate for a lung transplant. It was a hard two weeks. I am not a patient person and after being turned down for LVRS I didn’t hold out much hope that I would be good for a lung transplant.
We went down for the appointment and I was told that I was an excellent candidate for lung transplant. I didn’t know whether to be happy or scared out of my wits, I think I was both. They could tell I was still apprehensive and told me to take my time deciding. This was now May of 2006. I decided to wait over the summer, kinda like just enjoy it with the family and go back in September. I did go back in September and found out that we had missed one test and that was a 24 hr. Urine Culture so I took my bottle and went home. Made an appointment for October 16th and went back with my full bottle. Had to wait on the results of that and had to get a final acceptance from the insurance company.
I was called on the afternoon of October 18th 2006, at 3:44 pm, I will never forget it and it brings tears to my eyes just writing this, I WAS ON THE LIST!!!
So, it’s been 29 months and I am still waiting. Emphysema patients wait longer, we are given lower scores because life expectancy with emphysema is much longer that most pulmonary diseases. I have remained incredibly stable much to the dismay of my doctors. Dr. Kotloff has told me I have the worst most consistent lungs he’s ever seen!! When it’s my time it’s my time. Until then, I try to do all the right things to stay healthy. If I am sick and they call me, I can’t go because you have to be infection free at the time of transplant. So each day I thank God for my health and someday I will get that call………….
I go back every 4 months for a clinic visit and I have a PFT done, 6 Minute Walk test and a creatinine blood test, they really keep an eye on your kidney's and then go over all the results with the lung transplant nurse, Nancy and she updates the info in UNOS (United Notwork for Organ Sharing) and then I see Dr. Kotloff. I look forward to the visits, keeps me focused. I know everyone by name now and vise versa so its a good day!
My Journey to Lung Transplant!!
Took me a while to get up the courage to consider it but when you are finding it hard to walk across the room, it makes it a little easier. I decided to try for LVRS first because it does not involve anti-rejection drugs and for most people it has a good outcome for a few years, kinda using it as a bridge before transplant. I had also found out that Dr.Cooper had moved to the University of Pennsylvania. He is the pioneer of lung transplant & LVRS and I figured that I had a chance to be operated on by the best so I might as well go for it, so I did.
I called Rebecca at Dr. Coopers office to find out what I needed to do. He needed to see my last Ct Scan and Chest X Ray, so I gathered them up and sent them down. It was only a few days later that Rebecca called me back and said that I could be a candidate for LVRS so she scheduled the testing for the 2nd week in January 2006. There was a lot and I can’t find my schedule so I am doing this from memory and I hope I haven’t forgotten anything.
Ct Scan, Chest X ray, Muga Scan – heart, VQ Scan- Lungs, PPD & Anergy Panel – TB Test, 6 Minute Walk Test, Exercise tolerance test, Full PFT in the Box, Blood Work.
This was scheduled over 3 days and they can’t do the MUGA & VQ Scan on the same day because of the dye & gasses that they use. It really wasn’t too bad; I thought I did pretty well. The hospital is huge and it was a lot of walking around but I refused to use a wheelchair, I needed to walk!! I was tired when it was all done.
Then I had my appointment with Dr. Cooper. From the findings of the VQ Scan and CT Scan, I was not a good candidate for LVRS, the damage was too far advanced, went into the lower third of my lungs and he felt that there was not enough good lung left to make it worth the risk. I was so disappointed!!
I went home to ponder all this over. My pulmonary doctor kept encouraging me to go for transplant. I was too young to just not do anything. So I had all my records sent over to the lung center and scheduled a consultation. I was scared!! How could I have let myself get to this?
??Anyway, I needed a few more tests so we scheduled another 2 days of testing. I needed a Bone Scan, heart echo and ekg, heart cath and had to talk with the Social Worker , Psychologist, and Nutritionist.
After all this was done, I went home for 2 weeks to wait. They had to review my tests and decide if I was a good candidate for a lung transplant. It was a hard two weeks. I am not a patient person and after being turned down for LVRS I didn’t hold out much hope that I would be good for a lung transplant.
We went down for the appointment and I was told that I was an excellent candidate for lung transplant. I didn’t know whether to be happy or scared out of my wits, I think I was both. They could tell I was still apprehensive and told me to take my time deciding. This was now May of 2006. I decided to wait over the summer, kinda like just enjoy it with the family and go back in September. I did go back in September and found out that we had missed one test and that was a 24 hr. Urine Culture so I took my bottle and went home. Made an appointment for October 16th and went back with my full bottle. Had to wait on the results of that and had to get a final acceptance from the insurance company.
I was called on the afternoon of October 18th 2006, at 3:44 pm, I will never forget it and it brings tears to my eyes just writing this, I WAS ON THE LIST!!!
So, it’s been 29 months and I am still waiting. Emphysema patients wait longer, we are given lower scores because life expectancy with emphysema is much longer that most pulmonary diseases. I have remained incredibly stable much to the dismay of my doctors. Dr. Kotloff has told me I have the worst most consistent lungs he’s ever seen!! When it’s my time it’s my time. Until then, I try to do all the right things to stay healthy. If I am sick and they call me, I can’t go because you have to be infection free at the time of transplant. So each day I thank God for my health and someday I will get that call………….
I go back every 4 months for a clinic visit and I have a PFT done, 6 Minute Walk test and a creatinine blood test, they really keep an eye on your kidney's and then go over all the results with the lung transplant nurse, Nancy and she updates the info in UNOS (United Notwork for Organ Sharing) and then I see Dr. Kotloff. I look forward to the visits, keeps me focused. I know everyone by name now and vise versa so its a good day!
If you don't mind me asking what is your FEV1 at right now?. And how many transplants do they do each year at your center?
