Setting a PICC

Well yesterday was an interesting day.  I had my first appointment at the hospital since getting on the list.

We met with my transplant cardiologist, a woman named Kelly Ann, a couple years younger that me I believe, and just an awesome, awesome advocate for my care.  I'll write more on doctors and nurses at some point, cause they are such an important part of this journey.  But she really is just perfect for me and my temperament, and also simply top notch with helping Tammy take all this in.

We went over some of what will happen now that I am on the list, and what will happen when I get THE CALL.  It was stuff I had heard before, but it was always about some other patient.  I've said this before, but it's a bit surreal when I am the one being talked to, and about.

Anyway, my heart obviously is having a lot of trouble keeping up.  Just doing daily activities pushes it to its limit, and this is starting to result in some weight loss and muscle mass loss.  And my appetite comes and goes...and even when I am hungry, I am full after just a few bites.  And I used to be a HUGE eater. Like a whole pizza in one sitting kind of appetite.   So this is certainly different for me.

And the danger is that I could be so weakened buy this, that my body would have a much harder time dealing with the transplant.

But there is a miracle drug called Milrinone, that is dosed out through a small pump I can wear in a fanny pack.  This medicine will be constantly fed into my body via a semi permanent IV line (call a PICC...Peripherally Inserted Central Catheter).
I'll get that placed in a couple weeks, in mid September, once I am about 6 weeks out from the ICD placement I had on August 5. So a few days in the hospital to make sure everything is working as it should,  and then I will have a home health nurse come an check on it once a week it sounds like, and supply me with more of the drug...and batteries for the pump.  Batteries are important!

I've heard great things about this drug, and hopefully it will give me the energy to at least maintain the weight and muscle mass I do have until I get the call.

Oh, and I got the letter in the mail officially stating I am listed for transplant, at a Status 1b.

Have a GREAT DAY everyone!