Eileen Owen
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I’ve had 4 appointments with different doctors. My transplant clinic, I have had 2 visits with and was quite satisfied with them. They are 2 hours away and I didn’t mind not doing that driving. I will see them for my next appointment in early June as I am 2 years post transplant so I have certain tests that they want me there for I.e. 6 minute walk, etc. I had another appointment with my endocrinologist that they were just going to reschedule but I wanted to discuss a bone break with him. And I had another appointment with a new doctor that was just a consult and I felt that could be handled with a FaceTime visit-it was and it was fine.
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Hi Linda,
I always knew I wanted a transplant. I received one last year at the age of 69. I was officially diagnosed in 2013 with IPF though we had walked down that path for about 6 months before I had a lung biopsy to confirm. When I was doing well and only on minimal oxygen, I debated with myself as to whether I would try to get one and it depended on what age I was, etc. When I started going downhill (and it seemed rather rapid-though that’s different for everyone) I decided I needed to see my grandchildren grow a little more. My youngest was 7 last year and the oldest graduates from high school this year. I’m grateful for my extra time, but know that’s not the direction for everyone. We all need to just live in peace with our decision. By the way, I started off with Ofev and had really bad diarrhea so went off of it and switched to Esbriet (expecting problems) but had virtually none, unless I hadn’t eaten first. Good luck to you!
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That is a valid concern. You are right, though, the lungs have to be a perfect match, so though someone is waiting for their 3rd pair, there may be something that moves them, up the list. Others have factors that may be harder to match. I have had a transplant and mentioned to my husband that if I was having rejection issues, I would want to be considered for another one. He was surprised, but I think it was because he might have thought I went through a lot. I was on the list 5 months waiting and yet I know of people who were put on the list after me and got their lung(s) sometimes VERY quickly.
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I had my lung transplant 11 months ago and I too had tremors in my hands and also felt that my legs were shaky. I had the exact same symptoms as you reported and had to ask family members to call me and not to text as it was too frustrating trying to text back. One of my doctors prescribed clonezepam .5 mg 1/2 tablet twice a day. He said I might find myself getting too tired from the medicine so it would be alright to cut it down to 1x a day, which I did when I felt like I was sleeping too much. I was worried because I had nice handwriting and I thought I had lost that, but it has come back and I am no longer on the clonezepam. I have noticed though that when I start to get chilled, I shiver and when I shiver, my hands will tremor again. I think there is still a slight tremor, but not noticeable most of the time. My breathing was also off and that’s the best way I can explain it. When I got up to walk anywhere, I felt like I was still breathing heavy and yet my oxygen levels were fine. That cleared up about a month ago during a vacation to Florida.