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Update on Lung Transplant Evaluation

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Hello Miocean


Yet another blow, you should know, you have made it through many others. I don't imagine having a kidney transplant was a walk in the park.


Maybe consider what Shelley said in her second post on this topic:


"Now, the flip side of this, and maybe the happiest thought of all for you, is that if they decline you anyway, regardless of what reason, then what or who is to stop you from enjoying your ocean and sun activities?  Sometimes, it just seems that life is short, it is meant to be enjoyed, and it's not the end of the world if we just simply enjoy it. Many people have preferred their vice (or habit) over longevity. The human race is rife with examples!  So if that is the route we choose, it is what we knowingly choose and who cares if someone else would decide differently?"


Surviving a progressive, incurable illness can give us the perpetual need to survive-at-all-costs-as-long-as-possible mentality but we might actually be better off considering the enjoying-what's-left-of-our-life-as-much-as-possible mentality. Sometimes it's worth taking a moment to consider this.


Whatever happens every single one of us here is on your side wishing we could be by your side.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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This brings up the question treatment versus no treatment.


Although it will be difficult my husband is willing to pursue evaluation at the center that does high risk scleroderma patients even thought is a long trip there.. I am going to give it a rest for a little while and then find out if they would consider me. I have all the tests to forward to them if they will.


Shelley, the coordinator told me the doctor knew of my complications but wanted to give me a chance. (And having good insurance probably helped as they made quite a bit of money from all the appointments and testing.) I did gain some good things from the experience, I now have an excellent pulmonary hypertension specialist, a new GI doctor who is familiar with scleroderma, and we have driven in New York City so many times it is easy now.


Thank you all as always,



ISN Artist

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Hi Miocean,


One of the transplant coordinators once told us, early in Gene's screening, that they evaluate 100 people, for every 1 that they accept. Now, she might have told us that just to temper our expectations, so it might not be entirely true, but then again, there is always the unfortunate but unavoidable profit motive driving many medical situations.


In order to keep your spirits up, so that you can enjoy life and have a shot at another transplant center, keep on focusing on the benefits of your experience, just as you are already doing.


Another huge benefit for you is that you have now been officially examined from head to toe so you know exactly what you are dealing with, on every front. Having excellent PH and GI doctors can be priceless and maybe more life-extending than a lung transplant, too.


It's very hard to look at the down side of transplant, when we are focused on all the hopes of the up side, but a fair number of people die during the lung transplant operation or recovery.  We did our best to try to tune out information like that, but Gene's coordinator had a special way of always bringing us back down to earth.  Once, immediately after saying that he was listed -- right at the point we were getting so excited and wanting to celebrate! -- she launched into a story about how one of their patients got so excited about her transplant that she had a heart attack and died as she was being wheeled into the operating room!


So I figure that at least you are not in any danger of dying from sheer excitement today. I try to keep in mind that none of us are a failure if we fail to live forever; eventually all of us run out of life-extension options and the only way to circumvent that is to focus right now, this moment, on our life appreciation options. What can we see, hear, smell, touch recall or envision right now that can bring us a sense of wonder, gratitude, or joy?


What I can see right now is that we are very blessed to have you with us, I'm very grateful for that, and it brings me a lot of joy!



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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Fortunately, or unfortunately, going through the kidney transplant process gave me a great awareness of the ups and downs of transplantation. I had 8 living donors, each time one volunteered I got my hopes up, each one was turned down for one reason or another. One was so promising I went 1,000 miles away for 10 days of testing and was accepted only to have the donor turned down. I received several calls for a kidney before the one that was right for me came along. The man who sat in my dialysis chair on the shift before me died from a heart attack a couple of days after his transplant, he never left the hospital. Another person I know went into rejection right after transplant and then had to wait a few more years for another. There are definitely risks.


I know lungs are even more difficult and scarce and how precious organs are.  Although disappointed that I was not accepted I am in full agreement that a person that has a good chance to maintain the organ should receive it over someone who is a high risk to lose it.


Rejection is just hard to handle. It reminds me of applying to colleges and being turned down by the first choice. However, I ended up at the school that was right for me. It reminds me of submitting work for art shows only to be turned away. But then, there were art shows I got into and sold work or won awards. 


It's not like I've been thinking, "oh goodie, goodie, I get to have a lung transplant."  :emoticons-line-dance: It actually scares me even more than the kidney transplant did and I was pretty afraid of that. I know how much better I feel now though and how much better my quality of life is.


I am very fortunate to have the life I have now.





ISN Artist

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