Lung Transplant Journey Begins 10/8
Prior to going to Seattle for my preliminary interview for a lung transplant my doctor had me do a special test that tests whether you could survive the surgery or not. It is a god awful test. They put you on a bike and you have to peddle for as long as you can while they keep increasing the incline of the bike. You are not allowed any oxygen. Anyway, because I had been exercising I did well on the test. My doctor said that is their best way for them to gauge if you will survive the surgery.
My daughter (my caretaker for this) and I took Amtrak to Seattle and a cab over to the hospital to avoid the drive. They had sent me a list of a lot of hotels/motels nearby and one called The Collegiana It is especially for hospital folks and their guests/caretakers. It was reasonable so we stayed there. It was really nice. From there we took a shuttle right to the hospital. I have my travelscoot so it's really easy for me. The doctors were very through and they assured me that the surgery was not nearly as urgent as the staff that called me had indicated. They told me I was a candidate but have a lot of tests to complete before I can be added to the list. Some of them had to be done in Seattle and the rest can be done in Portland. They said that my pulmonary doctor in Portland was so through that a good majority of the tests were already done. They took 20 tubes of blood for testing, yep, that right 20. There will be no lingering secrets.
Anyway, I decided to move forward for a couple of reasons. One of our members told me they had tried to qualify for a transplant and were told they were too old. I'm not a spring chicken so the time is now. I also didn't want my FEV to drop so low that I couldn't qualify because of inability to survive. They did say they have to drop people from the list for that reason and other reasons and counsel them on hospice. Didn't like the sound of that at all. I also went to a support meeting they happened to have that day. The pre-transplant nurse said she would call me with my next set of instructions in about a week after they have reviewed all the results of the blood tests.
My daughter (my caretaker for this) and I took Amtrak to Seattle and a cab over to the hospital to avoid the drive. They had sent me a list of a lot of hotels/motels nearby and one called The Collegiana It is especially for hospital folks and their guests/caretakers. It was reasonable so we stayed there. It was really nice. From there we took a shuttle right to the hospital. I have my travelscoot so it's really easy for me. The doctors were very through and they assured me that the surgery was not nearly as urgent as the staff that called me had indicated. They told me I was a candidate but have a lot of tests to complete before I can be added to the list. Some of them had to be done in Seattle and the rest can be done in Portland. They said that my pulmonary doctor in Portland was so through that a good majority of the tests were already done. They took 20 tubes of blood for testing, yep, that right 20. There will be no lingering secrets.
Anyway, I decided to move forward for a couple of reasons. One of our members told me they had tried to qualify for a transplant and were told they were too old. I'm not a spring chicken so the time is now. I also didn't want my FEV to drop so low that I couldn't qualify because of inability to survive. They did say they have to drop people from the list for that reason and other reasons and counsel them on hospice. Didn't like the sound of that at all. I also went to a support meeting they happened to have that day. The pre-transplant nurse said she would call me with my next set of instructions in about a week after they have reviewed all the results of the blood tests.
Replies
ty for telling us about it. i\'m very interested in how the process works and wish you all the luck in the world.
I agree with you that the time is now - we are the same age so I am very interested. I just know that everything is going to go well for you!!!!
Shirley, you know that I am there for you. Could not be happier that my buddy is getting a chance for a transplant. I know you have the staying power and will manage to follow through.
Wish I could go on this journey with you but afraid they are a little more involved than the clinical trial we did.
Please keep us posted and will be keeping my thoughts focused on success for you.
Love, nna
Thank you for sharing, very interesting, glad that you have the opportunity to do this, just sorry you have to. Best to ya!
Thanks so much for allowing us to walk this journey with you. If there is anything you need, holller.
Good for you.. ( and you didn\'t holler to meet for lunch? Silly:)
The Seattle group is great, I really enjoyed working with them.. once you figure out all the hallways and elevators, the facility is pretty nice and others I have talked with who did decide to remain listed and got a transplant had great things to say about UW.
positive wishes and prayers as you begin this journey...
Thank you for sharing your experience--I admire your positive attitude and courage!
What an experience!!! I did not have to ride the bike as a test. I don\'t think I would have lasted long without oxygen!! You did great. Hang in there
Wow! Shirley, I\'m so impressed by your courage and determination! Yes, I agree with you, that it time to do this. You\'ve always been willing to try new things, such as trials and other procedures. So I wish you the very best on this leg of your journey. Please keep me in the loop! I\'ll be praying for the best outcome possible. Take care. Love & hugs, Sue
I had all my stuff sent to OSU from the Cleveland clinic. OSU is starting up there transplant program again. I told the Dr. I didn\'t really want the transplant, especially the anti-rejection drugs, but he wants me to keep it on the table. I\'m really interested in the stem cell trials that they are going to start soon. May be awhile though. I\'d been going up to C.C. for 2 years. He said there are some new Biologics coming out too. Good luck. You\'ll do fine. You\'re tougher than me. I don\'t even like to go to Cleveland though :>
I\'m so glad you are sharing your experience in your journal! Good luck, and hope things move along smoothly with the testing. Hugs,Boo
Shirley, You know I am not on here very often but I was glad to see that you started a journal. It is informative for others but I found that mine was also therapeutic for me. Good luck on your journey. Talk to you soon. XOXO