Wednesday, December 21, 2011

Freedom, Sweet Freedom

Yesterday was another clinic appointment, but by far the best one yet. I saw my regular Pulunalogist, Dr. Blue Eyes, and it was extremely informative.

#1 He explained the antibody numbers they are watching and said that they really don't know how those number relate in relation to longevity of transplant. They are collecting data, a study really, but they do look for rises in those numbers as a sign of infection. The numbers will wane and ebb all the time.

#2 My medications will rise and fall all the time and it is not necessarily and indication of rejection. It's a numbers game keeping all the levels working together correctly.

#3 After a quick spiro, which checks lung volume, my results came back at 91% of normal for age/sex/weight. It was 80% 2 weeks ago. This is a number higher than he said they ever hoped to see from me. And not to expect too much more, since the lungs aren't mine they do not ever expect 100%. HA! He obviously forgot who's he's talking too.

Oh and the important one....

#4 I CAN GO HOME!!!!! They canceled all of next weeks "stuff" and I don't have to come back until the 3rd (actually the 2nd since those are AM appointments)of Jan.

So I am down to once weekly blood draws and once a month clinic appointments until May. In May it goes to bi-monthly appointments until my one year anniversary. After that, every 3 months.

I *could* have gone right home after my appointment, but since I had plans for the week here, trying to kill the boredom until I went AWOL again, I offered to stay until my draw on Thursday. They upped my prograf on Monday night and I'd like to know where it's sitting. (Still low, btw)

Speaking of Prograf.... this shit sucks. First off I have to take it sublingually, under the tongue, since they can't get my numbers up to an acceptable level to change me to oral, which means I have to not only wait for this powder to melt, but then wait 30 min to eat or drink. HUGE time sucker and I hate time suckers. (Says the girl who plays Bejeweled...SHUT UP) The second sucky part is the shakes. Tremors the drs call them. Every time they up the dose it takes several days to adjust, if at all. Add to that the prednisone, which just makes you race, some days it's all I can do to sign my name. I have cards to fill out for Christmas and am debating just printing out what I have to say, because waiting for my hands to mellow out may be a moot point. But other than the puffy face, thanks prednisone, and the shaky hands, I have been blessed with minimal side effects. Too bad I didn't get the weight loss side effect... I never get the "good" ones.