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On Tuesday I had a Barium Swallow test at Transplant Center #1 to see if my esophagus is working correctly in order to proceed with the lung transplantation program.

Well, they saw me coming...and I swear they deliberately ran late just because I was there as things never run smoothly for me. :D


My test was scheduled for 1:30 and then I was to be rushed right up to the transplant wing to meet with the surgeon. I ended up sitting in a waiting area with 3 other women who were all complaining that it had never taken this long at the hospital. I ended up finishing the test around 3:30. I thought it went pretty well, didn't have any problem swallowing or anything. I met with a really nice doctor who explained the program to me, told me about the surgery, recovery and rehabilitation, risks, and life expectancy post transplant, the 3 days of testing I would go through if approved and how they are careful in selecting candidates because it affects their success rates. After examining me he said he could hear crackles at the bases of my lungs, which is usual for me, and said I might be too healthy to transplant. :)


The next morning he called to tell me the results of the Barium Swallow.




My esophagus is not functioning correctly in the upper part, the lower part, something is wrong with how it works with my stomach and I have severe reflux. I knew I have a hiatal hernia but was unaware of the other issues. I take omeprazole and have since diagnosis in 2004 but was unaware of severe reflux. Before my kidney transplant I had dry coughing that was finally attributed to GERD, but I don't get heartburn and rarely have food or pills come back up.


My esophagus is also dilated, which I thought is strange and not sure what it means because it seems like most people here with esophagus issues have had to had theirs stretched. The report has been sent to my doctors and one is on the way in the mail to me.


Because of this I am not a candidate at this center. I have an appointment next month at another center, but they have the same criteria as the first. A third center has been recommended that takes higher risk candidates but it is almost 1,000 miles away...


So I am keeping my fingers crossed that the fibrosis in my lungs will not progress and the medication for the pulmonary hypertension will improve that and my shortness of breath will lessen. And hey, I may be too healthy to transplant AND I look great!! :P



ISN Artist

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Hi Miocean,


Oh my goodness.  I am so sorry to hear this!  I was worried about this though, because esophageal issues are so prevalent in scleroderma and because they are a really big deal when it comes to a lung transplant.  Its possible there might even be a causal relationship between heartburn and certain lung problems, because they find that lung transplant patients with heartburn don't live as long.


Did they happen to say if any of this was fixable?  Gene also ran into a similar situation but he was able to get his hiatal hernia and heartburn fixed with a Nissen fundoplication surgery. Then he had to have testing to prove that it was successful, and then he was accepted for listing.


I am SO glad you look so great and are so rip-roaring healthy!  You sure could have fooled me on the healthy part. 


In my own experience, it seems to me that most healthy folks probably don't have scleroderma, kidney failure, pulmonary hypertension, esophageal issues, and supplemental oxygen and they would probably freak out at the mere thought of a single one of those, not to mention the whole kit and caboodle.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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