My Two Favorite Dorks

My Two Favorite Dorks

Sunday, April 5, 2015

The Good Kind of Boring



Hello all!

Apologies for the gap in my writing. The truth is, I have been busy enjoying life - yay! And yes, things have even been a little too boring to write about - however, it's the good kind of boring. So I have cased my memory to come up with some of the more important things that have happened lately, health wise.
  1. Bronchoscopy showed no rejection! My last bronchoscopy, almost two weeks ago, showed no rejection or infection. We were absolutely thrilled about that. However, I did still have the stenosis (or narrowing) in one of my airways that they had to dilate. I have to go back for them to recheck that this week. If it is there again they will probably want to put in a stent which is not a big deal but does involve general (instead of twilight) sedation like the bronchs.
    Update: I had my bronchoscopy today. The stenosis was back somewhat but it wasn't bad. They think I'm going to get away with not needing a stint which is great news.
  2. The "wheeze" that I had going on for a while (and which I complained about a great deal) has been gone since the last time my lung was dilated. I hope this means the stenosis has not come back but that is only me being hopeful.  
  3. My GI tract has recovered from my Nissen surgery a couple of months ago. I was having some issues eating (things getting "stuck" in my throat if I didn't chew well enough) and with extra gas after my surgery and that stuff has almost completely gone away. 
  4. I feel myself getting short of breath less frequently as my muscles get stronger and my breathing continues to get better.
  5. I might possibly have a hip thing going on. At my last transplant appointment I mentioned that my hips were cracking when I moved at certain times. I guess this can be a sign of something bad - some kind of weakening due to long term prednisone use. I'm not sure what they can do about it but I am having an MRI this week to investigate more closely.
    Update: my MRI showed nothing to be concerned about.
So what, exactly, do I spend my days doing?


As easy as it is to piddle around the house and do this or that or house work, things that always need to be done, I try to make it a point to be able to say a few actual things I've done during the day - vacuumed the house, brushed the dogs, swept the porch. I find that helps me to feel more productive and like my days aren't just slipping away.

Physically, I am still doing rehab twice per week (which includes both two kinds of cardio and a strength training class) and I am walking the dogs every day. I have been walking the dogs in the afternoon and I am going to have to get on a different schedule now that it is warming up - they get hot too easily. I am also looking forward to starting to do yoga again soon!


I am continuing to volunteer for all of my various organizations. The one that is the most consistent right now is the Triangle Land Conservancy. I have been going in there every Thursday for a few hours. So far I have edited a lot, helped them stuff envelopes and given feedback on some preserve signage they are working on. I will do whatever but they want me to do things that I enjoy so that's really nice.

Work with the Cystic Dreams Fund has been steady lately. It comes in waves but we just got about five new applications that I still need to review. We are also gearing up for our big annual event called Tea by the Sea. In addition to the tickets being a part of the fund raising, we have all kinds of auction items - many of them hand made or craft things donated by people with CF - up for bid. We hope to get a good crowd this year.

I have only written one story so far for the Lung Transplant Foundation (which focuses it's money on research for chronic rejection, currently incurable). I actually got paid a little bit for that story so I guess it's technically not all volunteering! I expect to be called upon to do another story in the coming month(s).

Lastly, my work with Donate Life NC is kind of at a standstill. I submitted a piece to them (my transplant story) and I am waiting for them to put it up on their website so that I will see how they shape it so I will better know how to frame my next interviews. I have both a friend whose sister was an organ donor and my transplant doctor waiting in the wings to write about.


Back to the home front, while I have gotten back in the groove of doing most kinds of house work, I am still not quite back into the cooking groove. I am getting there, and I am kind of forcing myself into it by starting to order from our produce delivery folks again, but I still have trouble finding the energy and/or motivation. I know I'll get there, it's just that in the mean time we are spending an awful lot of money eating out!