Since my last post…
- I made it one week off IV, then started oral antibiotics, then started IVs again on February 3rd. I had to start this one in the ICU since we are trying a medicine that I had a reaction to a few years back. As it turned out, I tolerated the meds and was transferred out of the ICU on the 2nd say.
- While I was in the hospital, more transplant eval tests were completed: 6 minute walk, pulmonary stress test, and hearth cathedorization.
- Continued to require 24/7 oxygen.
- I came home on IV 4 days ago. My activity around the house is better than it was on my last post, yet still limited. Need to up the o2 to 5 or 6L for activity and whatever exercise I can fit in. When I go out, I use a wheelchair.
- Went to the hospital 3 days ago to complete my eval testing – the complete pulmonary functions “in the box”. My fev1% was an all time low of 29%.
My case will be presented to the transplant team this coming Friday, and my doctors expect that I will be listed.
Now what?! Should I? Am I ready in “my” mind. What’s even more tough is my husband does NOT believe I am ready. He believes he can get me better. He’s been putting me on the elliptical doing 4 sets of 2 minutes. Today I did 2 sets of 2 minutes and 2 sets of 3 minutes. My “gut” says I should list before I get TOO sick. His gut says we can get more years if we hold off. I’m sure part of it is denial. But, he’s had such heartache in his life – his mother dies when he was 11, and his father died after having a simple surgery back in ’93. He does not trust doctors. I understand where he is coming from. Part of me wants to believe I CAN get better. But part of me is very skeptical. I’ve never been this sick! I feel like I’m just stuck at home trying to get better, avoiding going out to avoid contact with people. I’ve shared with him the success stories of other transplantees, and his response is – “where are the stories from those that have died?” How do I respond to that!
I’m so TORN…