Bad things going on

The past ten days have been very bad.  Rob decided that I should get a second opinion about my lupus so I set up an appointment with Dr.  Ghosheh in Radford on the 30th.  He seemed very smart and he explained that the kind of lupus I have is a difficult one.  He basically agreed with Dr. Trivedi’s treatment, saying that the cellcept and then the chemo (cytoxin) were the standard treatment but that the prograf  had not been researched much.  He told me that the hydralazine had been known to cause lupus in rare instances and that I should stop it (which I did).  He said I should go see a specialist and he recommended the best in the world, a Dr. Apel up at Columbia Presbyterian. I left feeling more knowledgeable but I little scared.  The next day I went to see Dr. LaFlam, Trivedi’s partner, and that visit was very informative but very scary.  He was a little defensive at first but once he sensed how upset I was, his manner changed and he became really helpful.  He went over my treatment from the start and agreed with Dr. Ghosheh that my lupus was a difficult one and said that “success in my case would be maintaining you where you are.”   He told me when I started that my kidneys were functioning at 39 percent and now they were at 51 percent but you can’t say I am getting better since the number can vary quite a bit.  He agreed with Ghosheh about the hydralazine and also recommended going to a specialist and that there was a very good one at the University of North Carolina.  I asked him how long do I have to live and he said he couldn’t say.  I left pretty upset.  I started a double dose of clonidine the 31st and it made me incredibly tired, to where I could barely walk.  The next day was about the same and on the 2^nd I went to Trivedi’s office for the bloodshot and I had taken a carvedilol and two clonidines about 40 minutes before I got there and I had trouble making it to her office.  Christine took my blood pressure and it was 176 but one of the doctors approved the shot and I got it, though it hurt a lot.  I had a hard time getting back to my truck and then I had trouble getting up to my office (being tired and dizzy).  I immediately took a long nap and had to really struggle to get up.  I did my work and then headed home for another nap and then I got up and rode my bike and did two sets of weights and yoga.  At about 4 I woke up and decided I should pray and I couldn’t remember the Our Father and that distressed me a lot.  I had to look it up on my phone and I also saw a NEJM sit which says that long term use of prednisone can affect your short term memory but that the effects can sometimes be reversed.  This is really scary.  Am I going to be a zombie with good kidneys.  I also looked at a site that said that prednisone did not cause Alzheimers, which was a bit of a relief.