April 8, 2019 at 6:00 pm #18246
When I began the evaluation process for a lung transplant, I was almost assured I would be placed on the transplant list. However, whether I received a double or single lung transplant would remain in doubt until all testing was complete. The evaluation process was an overwhelming experience. I worried because I also have auto-immune hemolytic anemia and a rare blood type; B-. These conditions did not affect whether or not I would be placed on the list.
After I completed the manometry test, it was discovered I had a low grade achalasia, which is an esophageal motility disorder, however, I was asymptomatic and didn’t feel like there was anything wrong with me. I would not be approved for a double lung transplant, but I would be approved for a single lung transplant. I immediately began to search for any professional articles comparing the life expectancy of these two types transplants.
An article was published as I was going through the evaluation process. I derived questions for my transplant team based on the article and my own case. My transplant team assured me that I was more of an anomaly because of my age and my overall fitness. I was worried how only having one functional lung would affect my oxygen saturation. Would I be able to function without supplemental oxygen? Would I be able to continue my normal activities as before IPF invaded my body? Could I expect the same life expectancy as if I had a double lung transplant?
I was very fortunate to be listed but I was anxious. Many transplant centers deny patients who suffer from achalasia. I was grateful to be accepted and receive my second chance at life.
I am curious to know have any of our forum members been diagnosed with achalasia or an esophageal motility disorder.
If there was a diagnosis and were being evaluated for transplant; How did this affect your transplant listing?
I have questions on a word document pertaining to the article and my case. I would be happy to send upon request.
April 9, 2019 at 11:32 am #18263Jan RicheParticipant
I was diagnosed with esophageal motility disorder last year and was eliminated as a candidate for lung transplant. My age may have been a contributing factor. I was 76 years old. Everything else was good, no other physical problems.
I was depressed for 10 days after they told me, but I have decided that everyone dies from something and this is mine. I am grateful that I am good at making a life with books and phone calls from lifetime friends. I find that my priorities have changed during this time, a pretty view from my patio doors, a good book, a visit from a friend, and my helpful husband are enough to make a satisfying life.
The only thing I would like is access to liquid O2. I need a high level of oxygen and can’t seem to get enough to allow me to be out easily.
I really appreciate this forum. It lets me know I am not alone. This is my first post, but I have been reading it for months.
April 9, 2019 at 12:50 pm #18264
Hello Jan, thank you for reading and commenting on the topic. It is too bad you were denied access to a transplant. You have such an amazing spirit. The priorities you mention are similar to mine. Although I don’t read books, I do most of my reading online or magazines. Do you currently have symptoms related to your achalasia and does your achalasia affect your well being? It’s too bad an oxygen company can not supply you with the necessary amount of o2. Have you tried all the major companies in your area? Best wishes, please keep in contact.
- This reply was modified 12 months ago by Mark Koziol.
April 9, 2019 at 5:32 pm #18266Jan RicheParticipant
My esophageal motility disorder is a slow peristalsis, my esophagus is slow but not blocked. The major thing I notice is how long it takes to eat. The worst part of eating is that my food never tastes right, I think that is due to my meds. I keep thinking with a reduced intake I should lose weight but my lack of exercise seems to keep the weight on. However, since I am not over weight, I think that is leftover vanity.
I had to go online to figure out what achalasia is, I hope I’ve got it right.
April 9, 2019 at 6:39 pm #18270
Hello Jan, I’m sorry to hear about your diagnosis. I have heard of potential transplant candidates get denied for your diagnosis. It’s too bad your food doesn’t taste right as this is a major joy in many people’s lives. I’m sure the taste is due to your meds. Meds affect every one differently. Sometimes those side effects do disappear, I’m hoping that will happen to you. Have a nice night and feel free to contact me or anyone else in the forum as you please. Thank you, mark.
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