Doctors Visit

I've had quite a lot of doctor visits lately that I don't think I have wrote about. One I went finally to rheumatology and he sent me off for a bunch of lab work and a dexa scan and a new medicine to see if my heart rate and raynauds will get better. To make a long story short with that.

1. The labs are came back good. Thank God. Both times 2 weeks apart.
2. Dexa Scan came back with some bone weakening in my hips but hopes that the new calcium pills he prescribed will help strengthen them and that we will probably just moderate now until later.
3. He put me on an ace inhibitor which had a few side effects. None that caused weight gain, which I refused to take if it did but it did cause a cough. The cough got to be unbearable and so I decided it wasn't worth taking and so I quit taking it about 4 days ago. Plus I was getting bad headaches which he said would go away but never did.

Yesterday I went and saw my Pulmonary doctor Dr. Shah to just talk about my well being and to beg him for a referral to see Dr. Yung who is the doctor at UCSD that does the transplants. Well there wasn't any begging to be done. He could tell that I am deteriorating. He explained that with Scleroderma you can try certain drugs and see if there is a way to slow the process and/or put in in remission but since I've tried everything the only thing that will save my life is a transplant. I really shouldn't say "save my life" because the whole double lung transplant is a life threaten procedure in its own. Plus, I'm very weak these days so I may not make it and/or my body my reject the new lungs so it's really a craps game. But it's a risk I am willing to take. Mike was there and he explained to Dr. Shah that at this time really all we (my family) are doing is watch her deteriorate. That I am always winded, rely on my O2 24/7, and can't seem to get enough sleep. This is all true but it was nice to actually have someone else tell the Doc that as well. I explained to him my cough is exhausting, the joint pain is terrible and I never feel like I am fully rested, and now I'm driving around on a scooter and I'm 33 years old. He could tell we were serious and new I needed to see Dr. Yung. I also told him I quit taking the ace inhibitor and he gave me a different pill to try and help my blood pressure (with out the side effect of coughing) and gave me Ambien to help sleep which I was a little nervous about. I took it last night and I don't feel any more rested than before but maybe tonight will be different.

So Monday I am calling Dr. Yung and hopefully he will see my weight loss (I now weigh 130.8), and see how much worse I have gotten since Sept. 2006 when I saw him last and he will start the process and accept me to be a good candidate for a transplant. I never thought I'd pray for a transplant or to have such a major surgery but I never thought I'd pray every night to just see my son graduate from high school either. I'll keep you posted on my appointment with Dr. Yung and like I said hopefully I can get on the list and get a new chance on life.

Until I can think of something else to write,

Carmen San Diego

3 Things I'm thankful for:

1. my bed
2. my wonderful husband who has been a wonderful caregiver to me
3. my dog who always gives me kisses; like she knows I don't feel well.