Jackie asked if I wouldn't mind putting my story on here and I don't mind at all. They do things a little different in the US, they use a scoring system rather than first come basis. If anyone has any questions, please don't hesitate to ask, I will try to answer to the best of my ability.
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 at 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 some 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!
Post by Colleen-Pa on Mar 23, 2009 16:09:03 GMT -5
Thanks everyone! Jackie, I go every 4 months for a clinic visit. I will add that at the end, thanks! My pulmo at home sees me every 6 months or more if needed so it seems like I am always going but so far its working so not going to complain!
Colleen thank you so much for sharing your adventure....I think it really helps for others to read what we have/will go through whichever direction we are going..........you sure have been through it, the hardest has to be the not knowing "when"...my gosh girl, that would drive my patience right up the wall please keep us updated........you go girl!!!!!!!!!!!
Thanks for sharing with us. The waiting must really be the hardest part for you. You seem to have a lot of patience. You've been through a lot. WTG on staying as healthy as possible for when it is your turn. I hope the wait is not too much longer.
Jackie, that IS the million dollar question!! ! Yes a big part is that I am so incredibly stable. I have never been hospitalized or had pneumonia, almost unheard of with a fev1 of 14%. Then comes my size, 5'1" on a good day! My torso is tiny also, about 12" from arm pit to hip. I will need a lung from someone around my size and that unfortunately will most likely be a teen or another small adult. If it is from a kid, the first dibs go to the kids, adults come last. This is the hard part, knowing that someone had to die for me to live. My blood type is "O" so that is quite common, which can also work against you because it is so popular, more demands on that type. SO you see, a lot goes into it and I haven't even touched on blood and tissue type. I am also listed at a pretty big center and there are quite a few ahead of me, although I have moved up a bit and I am no longer on the bottom of the list but not real close to the top either. SO that's all I know. Someday I will get the call. I am a firm believer of good things come to those who wait!!
And I'd like to THANK all of you for the good wishes, it means a lot!!
Colleen, my thoughts and prayers are with you. My hubby is currently waiting in Toronto for a transplant, we haven;t been waiting as long as you have, but we have heard of other who have been here over a year. We have been on the list for 4 months now and have had one false alarm. The waiting is tough but I agree with you that good things come to those who wait! My hubby is also O but he is waiting for large lungs, we have no idea where on the list we are and maybe that is a good thing! Keep your faith, your spirit and your strength!!!
Post by Blossom/Jackie W. on Apr 22, 2010 8:43:47 GMT -5
As of y'day....... April 21st.
"2 weeks today and things are going very well. I am hoping to be home by Friday. I have a little air hanging out in the lungs that has to go away before they pull the last 2 tubes so that is basically what were waiting for. LIFE IS GOOD~~~~~~~~~~"
Note to the Reader..... Colleen's call and Tx occured so quickly. For additional posts as it relates to her Tx, please check the Thoughts and prayers section