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Doctors, doctors and more doctors..... woe is me.

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#21 miocean


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Posted 16 August 2012 - 08:19 AM

I spoke with the social worker at my transplant center and she cancelled the appointment and agreed it was not necessary for me to come in with everything going as well as it is. She was happy to hear I was doing so well and that I had found a therapist to help me cope with things. She said I could be a model for transplant patients because I had a very successful transplant (almost 2 1/2 years now, can you believe that!?) and knew to seek help and answers when I needed to. She assured me they were always there for me whenever I needed them.

Just to clarify things, unlike most transplant patients, I have never been back to my transplant center. The last time I saw my transplant doctor was when he came in my hospital room and said I was going home. The center has a working relationship with my doctors here so I was immediately turned over to them and have had all my labs drawn at a local branch hospital. That has saved me endless time going to and from the center. If I had my transplant at one of the other centers I listed at I would have had to relocate there for months and then go back a couple of times a year, costing a lot of time and money to travel. My nephrologist has consulted the transplant nephrologist when needed and they will be getting together to figure some things out with my cholesterol in the future.

The social worker did tell me that some patients return once every year just to check in because they feel a closeness with those involved. I don't have that closeness. If I had known that from the beginning, I would have gone once a year but at this point in my life I am trying have "Medically Free Days" with really good success.

I am happy to hear you are feeling so good! We can get through those really dark times and come up smiling!!!

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#22 Shelley Ensz

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Posted 17 August 2012 - 02:16 PM

Hi Miocean,

I'm glad you were able to save yourself a visit to the transplant center. If it were closer though, and less expensive, it would have been fun to have a celebration visit! At Gene's two-year post-transplant visit, he got put on what I call the "well baby list", with a reduced schedule of follow-ups. It was really wonderful to have a fun and celebratory visit, after all the grueling stuff post-transplant. However, Gene was going to the transplant center for over a decade so of course there are a lot of close relationships there.

Since you won't be celebrating with your transplant team, perhaps you could arrange a special celebration for your two-year mark. It'd be a marvelous excuse for a dinner out, wouldn't it, with a virgin cocktail to toast this major milestone?

Major congrats!

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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