Six Month Follow Up Appointment

It's been six months since I was listed for transplant and time for a routine visit. I saw the doctors and did a six-minute walk test. The doctors seemed surprised that I haven't had my call yet. They have experienced a bit of a drought and things have recently picked up again with three surgeries last week. That brings the year-to-date total up to 21. The doctors seem to think that I will get my call before my next follow-up appointment in three months.

I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.

In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?

The Wait Continues

The last few days have been pretty good. I am getting my strength back and I am feeling better than usual, thanks to my two-week hospital stay. The weather this weekend was pleasant and my husband did a bunch a yardwork while I supervised from my lawn chair. Everything is green now and it's such a welcomed change!

I checked a couple of things off my list this week. I had my hearing tested, and I'm a bit surprised that the results are normal. I have been asking people to repeat themselves much more often lately. Perhaps it's due to my lack of attention span, thanks to the transplant wait. My husband is experiencing it too. We can't concentrate on things even when we want to. I love to read but I haven't touch the stack of books waiting for me. I love to scrapbook, but a few minutes here and there is all I can manage. I lose my train of thought easily and I drift off mid-conversation. Whoops, I just did it now! Back to my list! I also had a vaccination yesterday, pneumo-p. That's the last shot I need before transplant! Check!

Transplant on My Mind

I had a nice Easter weekend and got to spend time with our family. My husband single-handedly prepared an amazing meal and got the house ready for company. I am finally starting to feel a little better everyday, which is a relief. I was supposed to complete my home IVs last Wednesday, but I didn't feel any better. Instead, we switched the Cefepime to Ceftaz for another week, keeping Tobra the same. I'm due back at clinic on Wednesday and I'm anxious to get rid of the IVs and port needle. The hospital switched needle brands and this kind has no cushion. It just sticks out and has gone interstitial once already.

I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.

Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!