Hi gang -- I see there are folks I know and many I don't know who have come to the forum for support, to share and to give advice. Sorry it's been so long since I've been here and I will try to come back more often. I guess it's just feeling reasonably good on the ITP front and that I wanted to put it on a back burner, but I realize with my 30 years experience with ITP and combination of other autoimmune diseases, I could probably lend some support to others and should be giving back a bit more.
For those who remember, I had a stem cell transplant for autoimmune disease -- namely, ITP, APS, lupus and vasculitis. I guess they could all be included under the umbrella of lupus, but ITP was my initial dx, so I've always identified with other ITP patients. I discovered this sight back in the late 90's, when it was initially organized and I was dealing mostly with ITP and lupus was not a big deal to me. Since 2000 lupus took a dive south and then I started clotting and dealing with vasculitis, but ITP was always what I identified with the most.
I hit a milestone in April, it's been 5 years since transplant and I remain in ITP remission, with a platelet count range of 180-250. It took a year post transplant to get normal counts, but with only one drop below 140, I feel reasonably confident that I have accomplished a life long ITP remission. A long 30 year journey of every treatment known to ITP over 25 years of failure, finally the transplant worked. I know it's only a remission and I continue to to have a little nagging thought if I will relapse, but if that's the hardest part of living in remission, I'll take it.
My APS also remains in remission -- although, I was clotting for several years before I had positive APS test results, so even though I consider myself in remission, because so far I have not had a repeat blood clot for 5 years, I also continue to wonder about coming out of remission. I remain off anticoagulation and only take an aspirin daily. Stopped anticoagulation 1.5 years post transplant and no blood clots.
Lupus is also managed, with negative DsDNA and ANA antibodies, although I still test positive for lupus specific antibodies (Sm & RNP antibodies). I also continue to experience fatigue, joint pains and overall body pain and fatigue in muscles and tissues, which has been identified as fibromyaligia. That is certainly limiting my abilities to do all the things I would love to, but life is good despite the limitations I experience.
Vasculitis, which if you recall looked like the stigmata is managed, although I do experience unexplained itching and burning, along with rashes. I manage this unpleasant symptom with a cocktail of antihistamine drugs.
One of the extensive clots I had in my legs has not dissolved, therefore I live with swelling and brawny edema and discoloration that is ugly and if I don't manage the swelling, it can get out of control, but I've got that square and I seem to manage it well. Summer is hard, because wearing the heavy support hose in the heat gets old and I don't wear shorts, which isn't fun, but vanity wins over and I don't expose the leg, or the ugly support hose.
The repeated lung clots have left me with lung scaring, which until recently was stable. I have yearly pulmonary function tests to monitor and the last test I had did show a decrease in lung function and diffusing capacity, which might be an indicator of increased scaring, or vasculitis of small lung vessels. I have not talked to the doctor yet and I'm a little worried and actually angry that the doctor has not called me yet. The tech told me there was a change, but since I never heard from the doctor, I just picked up the actual results and discovered the somewhat dramatic decrease. Therefore, I will be making a phone call today to inquire why I did not get a call from the doctor and what it all means. Since the pulmonary clots have caused pulmonary hypertension, I will probably follow up with a pulmonary hypertension specialist, because I don't necessarily trust my local doctors to know the best treatment options. I trust them for day to day monitoring, but I always get a second opinion and consult from a doctor who is tops in their field. I saw one several years ago, prior to transplant, so I'll probably follow up with her again. I have experienced an increase in shortness of breath on exercise, so I have been aware of a potential problem, but I had become a little lazy on exercise, so I had hoped that it was just being out of shape and deconditioned. I've been back to exercising for several months now, so I have been considering a change in pumonary function, just didn't think it would actually be so substantial and I guess a little denial.
Well, that's my update -- glad to be back, hope to see some of you at the PDSA conference. Jim and I do go almost every year and will be going again this year in Denver. Hope to see you there -- if you haven't gone to a PDSA conference, you should. Always informative, always supportive, always great to meet other's with ITP and talk to the doctor's who are tops in ITP treatment and research.
Kim
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