This past week has been probably the worst in my CF Journey. 5 days ago I had an appointment with transplant. My hubby came with me. I needed a wheelchair and oxygen. The meet with the transplant doctor was very informative. I love her personality, empathy and frankness. So I’ve had several of the transplant eval tests done while I was hospitalized. I have a few still to go. Basically, at this point their is a high level of concern with regards to how quickly I have declined and where I’m at now. She suspects my transplant score will be in the 30s, and people usually get called when they’re in the 40s. We won’t know my score until all tests are complete.
I had another incident, and it was at transplant. They needed a urine sample. My hubby came in with me, o2 and all. So, hovering to pee in a cup took too much out of me that my o2 dropped and was about to feint again. My hubby took me outside into my wheelchair and quickly obtained an o2 tank that went to much higher levels than my portable. He pumped it to 12L and I eventually came back to normal. It is so scary to feel like you can’t get enough air! Oh, and I forgot to mention that when they took my vitals when I got there, my 5 ft walk to the chair dropped my o2 to 75, while on 4L! Again… Scary…
So I’ve been huffing and puffing with any effort, wearing o2 on 4-5 liters 24/7. Yesterday I was able to drop to 3L. Today my resting o2 w/o o2 went up from 78/80 to 85.
I have had so many people praying for me and prayer chains in progress. It seems to be working. I hope it continues.
My hubby is still not able to accept the idea of transplant. I can understand that. If you felt as bad as I do, I think the prospect of transplant can be accepted a bit easier. Of course I hope and wish I can recover and postpone the transplant option! So, 2 days ago my hubby decided to bump up my o2 and put me on the elliptical for 5 minutes. He helps with moving the arms, to ease it up for me. Now, this was very hard, but necessary! I haven’t been moving much. He had me do this yesterday for 5m and today for 6m. Still very hard, but nice to have a live in coach.
Oh, and last Friday I was put back on the Polymyxin iv at half the dose from before. Its more manageable. I can walk! I have the numbness in my face, fingers and toes. Who cares? As long as it helps!
I don’t know where this journey will take me. I just hope I can fight my ass off and get to an acceptable baseline so I can enjoy life again.