Sunday, March 23, 2014

A Step to the Left

It's been a bit more than a month since my last entry. I will admit to wanting to post a few musings since the last time I dusted off the keyboard. I mostly haven't because the writing would have been an exercise in ranting against some of the things people post about themselves, in reaction to something I've posted, or unsolicited advice on how to go about my life post-transplant.

I don't think a rant in exchange for a rant is a very good value for the friends who continue to support this blog by reading and reaching out to me.

I saw the 2 specialists most important to my treatment last Monday. Pulmonary had chest X-rays and a PFT waiting for me. The X-rays confirmed that I've developed new scar tissue in my lungs as a result of pneumonia and lung GvHD. The PFT confirmed that I've had a small improvement in my lung capacity. Small. I'm still doing breathing treatments twice a day and I'm still bringing up stuff from my lungs. Remnants from pneumonia.

My pulmonary PA emphasized that I need 30 minutes of cardio every day. I explained that I'm working crazy hours and free time doesn't actually happen until about 8 pm. She told me they didn't care how I managed it and that I could do it in 10 minute increments throughout the day. Talk about being ready for me. The working theory is that I've developed steroid weakness to the point that my diaphragm and lungs have become lazy. The cardio is to help with my stamina. The team wants me off steroids.

My transplant doctor saw me as well.  Both doctors were hoping for more progress. After nearly a year of this, I'll take whatever improvement I can get. Dr. K. elected to step down my steroid dosage to 10 mg every other day. After 2 weeks, I'll go down to 5 mg every other day. Then I stop.

If I run into trouble between now and then, the pulmonary team has asked that I contact them first. They see this more frequently and have considered alternative ways of treating me. Long story short: every one wants me off of steroids. The long term affects can be debilitating.

I've been warned to watch out for extreme fatigue or extreme tiredness. There is a very real concern that my adrenal glands have shut down. If so, I'll need to reach out for treatment.

As things happen, I'll try to post.


LPC said...

Hoping that this all resolves well. I so admire your persistence.

PJ said...

I also need to do more cardio. I have the time, not the energy. Maybe when all the snow melts and it's above 40 degrees.

Ronni Gordon said...

I wrote a story at the newspaper once about how to get in more exercise minutes whenever you can. You probably know this, but here goes anyway: Time permitting, park as far away as you can from the entrance to a building. Always take the stairs. Can you take a 5 minute exercise break at work just to walk around a little? How about five or 10 minutes at home, holding onto the back of a chair and doing marching in place, lifting one leg then the other up to the side and to the back, stand up sit down as many times as you can (to also build quad strength), play a song and dance around with your husband, and my favorite, which made me laugh when someone told me to try this: do your version of jumping jacks, which probably isn't as funny as mine but which will increase your heart rate…this is just stream of consciousness and I hope I don't sound like a wacko bird!
Hey I wonder if my adrenal glands have stopped functioning from my longterm use of prednisone. Something to look forward to. P.S. Rodney Yee has a good DVD on chair yoga, which is not cardio but which will make you feel good and which you could also fit in for a minute or two at work.