I apologize for not getting back to everyone about how I am doing. After a month in the hospital I have been pretty wiped out. Plus I have had to go to so many doctors since I have been home that I hurt alot.
First of all they took me off the steroids and I have very sore joints. However I don't have a choice if I want to get on the list. Now he wants me to get off the pain pills. So with no steroids and not pain meds I fear what will happen. My SIL had to put my blouse over my head for me because I can't raise my arms.
OK so the doctor has decided to put me on 3 months of pulmonary rehab 3 days a week. He is still putting me through all the test . I have gained so much weight since I moved here. I'm up to 200 lbs. He said I have to lose 30 before he sees me again.
So the plan he has is if the rehab works and thelosing weight works,( he also wants me to get down to 118lbs!) So do I but I can't see it happening. He whole idea is that if I get through the therapy and lose weight and continue with all the tests I need that I will be in better condition for a transplant.
He wants to try to wait for 2 years before I have it. I have good and bad feeling about
that. The bad part is that I don't want to stay hooked up to these machines the good part is that there is no guerantees with transplants. 7 to 10 % of lung transplant patients die within 2 or 3 months. There is no guarentees with transplants. I could live 3 months 3 years, 30 years. With the Doctor first started looking at me he said I didn't have Lupus. By the time he got done reading my history he said I do.
He looked at my back to hear my breath and saw the vessles all over it. We discussed my esophgus and a bunch of other things and decided he wants me to see another rheumy. I told him I don't want to have Lupus cause I was told I could have a transplant if I did. He said Carol you are a human being. We look at you first and decide if your quality of life will improve. We don't treat you like a number. There are lots of things that go into our decision.
I just had a cat scan of my neck done yesterday. I had to have my ceroded(sp) artery in my neck done. It's thinner than it should be but not that bad. I had my kidneys and blatter ultra sounds yesterday too.
I still have a bunch of tests left but at least I will know every part of my body when they are done. Well anyway I apologize for taking so long to get back to you about all this. I am still struggeling with the loss of my dad. Their anniversary is the 26th. I'm thinking of sending my mom flowers. I wouldn't do it every year but since it's been such a short time since he passed?? I remember when my hubby past everyone was afraid of mentioning his name like that would help me to forget about him or somthing. They were trying to be kind though.
ok if you got this far you must really have brain fog!
love ya all
Possible scleroderma. stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV