The More Things Change... The More Things Change??

I was awoken this morning with a phone call from Dr. P. He was worried that I thought he was ignoring me, because he was letting Dr. T. handle my case -- as it should be. I assured him that I knew he was lurking and directing in the background and I was comfortable with how things were being handled.

Dr. P. good-naturedly accused me of aging him exponentially, to which I countered, "No. I'm keeping you young and on your toes!"

So a lot changed overnight.

#1. The risky Atrial Septostomy has been tabled as a 'bridge-to-transplant' option -- we will save it in our front pocket for when we have no other option.
#2. There will be some discussion among the various experts to decide which immunosuppressive drug will offer the biggest bang for the buck and potentially, cause the least damage. I will uptitrate on that for a few weeks, while weaning off of the evil Prednisone.
#3. They want to do another Right Heart Catheterization (RHC) in order to measure the pressures inside my heart and to get a really good idea of what is going on. And. Yes. It's true. I will win an award for being the patient who has had the most RHC procedures. It isn't a pleasant procedure, but, then, again, it isn't a walk in the park, either.
#4. My Creatnine is down to 1.57. We need to get a number other than a 'fuzzy' 1.5 requested by the transplant team. And we need to get me stable at that number and not varying from day to day (hence the aging exponentially by Dr. P.
#5. The scariest thought: Dr. P. would like me to switch from Remodulin to Flolan. Flolan is the gold standard drug and it was the first IV Therapy for PH developed in 1995. Remodulin is like Flolan-lite. It offers a significantly longer 1/2 life -- if something happens to my pump delivery system, I have a couple of hours to resolve the issue. Plenty of time to fix it on my own or to drive to the UMMC Emergency Department to get them to fix it for me. Flolan gives me about 20 minutes. Yes, I have 20 minutes to notice and resolve a problem or I could lose consciousness and die. That and I would have to learn a whole new protocol for mixing and storing the medicine. It has to be kept on ice at all times -- including while I'm wearing it. I would have to mix it every day and I would likely have to return to the dreaded humongous pump - the CADD Legacy-1. Ugh. There are things that are daunting for even the most stoic Viking warrior. This is one of them and I can't do it.

So that is where I stand as of 10pm tonight. I will remain a resident on 6C, probably through the weekend. If I have to be in the hospital. This is the place I want to be.

"...Time can change me; but I can't trace time...."