Carol, I hope you at least finally get some real answers and real treatment. At least the burden of research is on them, and they have to do it. I also have heard of people changing transplant centers when they get news like this. Places like Mayo will often do transplants when others won't. I don't know what kind of option that is but I'm just saying, the fat lady (me?) hasn't sung yet. The testing is not for naught, it may prove invaluable in the future, you don't know, and if you do switch centers for some reason, you shouldn't have to go through all that, they may want to reread your biopsy slides, wantto see films and such.
I found a few things that seem to suggest that the idea that scleroderma patients are less optimal candidates for lung transplant may be ill-founded and that the outcome stats are the same. In the end its up to you, but I would definitely negotiate better rheumatological and pulmonary care through the transplant docs, get something out of the torture they putyou through.
One on stem cell transplant "for the sickest scleroderma patients"
I'm so so sorry that things are going this way and you have been through so much. I hope that that injection helps and I'm glad to hear from you and that you are feeling well enough to be back. It just seems nothing can be easy anymore! Sorry haven't been on much.
I pray for you and think about you often, though I haven't been on much, having some problems.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids