Well, three cheers that I've managed to make it thru two weekends without going to the ER or being hospitalized! Yay!!!
This is the pump. It's really handy small and it fits in my purse. The big syringe coming out the end is my medicine. It takes around 30 minutes for the medicine to pump into my PICC line.
The picture below shows the line that goes from my arm and hooks into the medicine line.
Today was the last dose. That is such a great thing because getting up at 4:00 a.m. to take the medicine out of the fridge is not fun! Lee was a big help with the 'every six hours' thing. I'd go to sleep around 8:30 at night and he would give me my 11:00 p.m. dose (while I slept through it). I then would have had enough sleep to get up for the 4:00 / 5:00 a.m. dose. To bad we didn't figure that out right in the beginning :-)
Here's some info everyone's probably interested in...
Bummer...my antibodies are coming back :-( I saw Dr. Zaas on Monday and he told me. Now the question is...how high are the levels. He said that they might be coming back but not at the same level so it might actually be better than it was. The HLA lab has developed a new - and fancier - way of testing for the antibodies and it gives a much more accurate reading. The transplant team seems pleased with this so I guess I am too :-) They drew more blood tests on Monday so I'll keep you posted on what I find out.
Another bummer...we had another dry run yesterday but it was the most hopeful one yet!!! The on-call coordinator called and told me they had a donor and they had run a cross-match of my blood with their blood and it came back negative!!! - That's what we want! Cindy said they had to still look at the lungs but if they were OK they would take me straight into the operating room. Wow! That was a first for us...it's usually be a 'maybe' thing.
Lee, Amy and I waited for about four hours and became more hopeful each hour. Then the call came...sorry but the lungs weren't viable :-( We were all so sad. This one was so close! Here are the three of us..