I'm so sorry you are going through this. I wish there was another center around, maybe with more compassionate doctors. I totally do not understand why you can't be treated while you wait, even if its just pred, since you will be getting gobs of it after the transplant. It doesn't make any sense to me at all. And if not pred, other meds should be an option. I just don't thnik they should HAVE to make you choose. Planty of people waiting for livers take meds to control their conditions.
I don't blame you. You have been through h*** with this and they seem to have done nothing to make it easier for you. I'm not real impressed with them. But maybe that's the way it has to be, though I just read an article about doctors lyingfor their patients to get them in to clinical trials, even lying about the medcations they took before or during the trial that were restricted.
There is somethng called a Compassionate Care Request that you and your doc make to get you the meds you need during a clinical trial, the same proceduer must be available for transplants. But I'm sure I wouldn't have made it as long as you did.
I'm just so mad at what they have done to you and so frustrated. But I'm sending prayers and wanting you to be out of pain and resting comfortably with the swelling and all gone.
Don't be afraid to call 911 if you need to, they get paid for this service and you are sick enough now that if you need to go, you need to be taken by them or at least someone who can get you there fast. Don't wait for someone to come home and find you sick, please. (((( I'm worried about you. ))))
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