Yesterday, I made the rounds of various doctors in the mission to take some control of my medical life. First stop, ophthalmologist. He confirmed my eyes aren't damaged in any way, wrote my a new prescription for eyeglasses, as well as one for drops to be used at night.
The visit to my oncologist was more interesting. She agreed to having my catheter pulled, which I hope happens soon since I'd like to take a really long soak in the tub followed by a hot steamy shower. Mmm. Catheters can't get wet, and I can't be bothered by the elaborate plastic/ tape job you have to go through, where even less of your body gets washed.
I had requested my records be sent to Memorial Sloan Kettering, so my doctor thought I was leaving. I told her it was just for a second opinion, to get some fresh eyes on my case. I made an appointment to see her in two weeks. She made a good recommendation to me: get a second opnion at Dana-Farber because they specialize in chronic gvh. As you may remember, Dana-Farber is my old stomping grounds. I had my two transplants there and have all the confidence in the world in my doctor, nurses and the staff.
I sent an email to my former doctor at Dana-Farber and asked whom I should contact for gvh treatment, clinical trials and the like. He answered within hours, saying he was my contact. This made me feel like dancing.
On another positive note, my liver enzymes are going down since I've been taking Cellcept, a new (for me) immune suppressant.
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2 comments:
I know you can't wait for that first catheter-free shower. I hope your team at Dana Farber can provide some new insight, and hopefully get the GvHD under control.
Glad you're making progress. You and I are both on similar paths with the opthamologists. Dr. Alyea is sending me to a GVHD specialist in Boston. I wonder if we'll end up with the same one. And yes, thank goodness for Dana-Farber and good riddance to catheters.
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