Notes for This Week

It's time to catch up once again! The weather finally took a break from the 90 degree days, We had some wonderful Pacific NorthWest rain again which has made it a bit easier for me to breathe. What else has happened?

The transplant team physicians and my local pulmonologist all agreed that I should stop one of the drugs I was taking with the hope the neuropathy and edema in my feet would get better. Another symptom that should clear would be my balance problems. Walking is a pretty rough task when I can't feel where I'm putting my feet and what might be under them. I'm happy to now report that it's working! My feet are almost back to normal size. I'm also regaining some feeling so nerves are healing. That part is going much slower but there is progress. I am so thankful this worked! The next diagnostic procedure we would have done if nothing changed would have been electromyography (EMG). I wasn't looking forward to the probable pain.

I made it back to pulmonary rehabilitation this week. Here's where the saying "2 steps

backward and 3 steps forward" comes into play. I had been using the treadmill for 30 minutes about a month ago. Now the treadmill is beyond me for a while and I'm using the recumbant cross trainer bike. I managed 17 minutes on the cross trainer. I'll be working hard to build back the muscle mass and use the treadmill asap!

I was asked for more information about the agency caregiver I have at home now. Here's how it happened! The UW pre-transplant team includes a social worker. Angela contacted DSHS on my behalf and got the ball rolling to see if I would qualify for their home healthcare support. A local DSHS representative, came over and assessed my situation. Kathleen worked whatever magic she had to do in order to ask a local service agency, Catholic Community Services, to conduct their own assessment. I met with Sandra from that group the next day. She explained you don't have to be Catholic to receive assistance with them. It only took a day or two for her to write it up and have my assessment reviewed/approved. Since then we have a really hard working woman over three times a week. It's been a help to me beyond what she actually does in that I feel better not having to ask Stacy (my primary caregiver) to do everything!

My stamina is still low. I start getting weak and tired in the early evening. My oxygen saturation is getting better but can still vacilitate with any activity. I monitor it frequently by using a finger oxygen pulsimeter.

Time for me to go. I'm so excited for the fundraiser this weekend! See the last post for more information!