Update from Tom - SUNDAY, FEBRUARY 08, 2009 10:34 AM, CST

[Guest guest]

We just went past nine weeks since the transplant. It's still a two steps forward, one step back process, but I sure am glad I've made it this far.The real good news is that my follow up appointments at town will only be every other week instead of weekly. That's progress! The bad news is that my hemoglobin, red blood cell count, platelets, etc. still need a jump start, so I need to go in every week for the next eight weeks to get some kind of anemia infusion with a drug normally given to cancer patients. I can't pronounce the name, but the intention is to get my blood back in shape. The anemia could be the source of the massive fatigue I'm having, so if this works, it will be a big hurdle crossed.

That stored fluid is coming out nicely. I've lost nearly 20 lb in the last month, all of it fluid. I'm not bloated anymore, so it's much more comfortable. With that weight loss, I'm down to about 165 pounds, which is a bit light for me. Even my 'skinny pants' are far too big for me. I still don't have the appetite to load up on calories, and I have big problems dealing with fats, so it will be a challenge to put some weight back on.

The worst thing right now is my digestive tract. I wake up with severe abdominal cramping every night and early morning. I don't know the source, but the pain is incredible. After a couple hours it dissipates, but I'm not the 'morning person' I used to be. I hope we get this fixed.

I still have generalized pain issues, but I only need to take a couple doses of pain meds each day, which is another improvement.Finally, during the five or six good hours every day, I am feeling better than I have in years. My mind is clearer than ever, my attitude is great, and life is good. It wasn't long ago that I only had a couple good hours a day, so this is moving in the right direction, too.

Overall, then, I'm progressing. It's great to be able to work again. The risk is overdoing it, and I've already fallen victim to that temptation a couple times. I just need to convince myself that the work will get done despite the breaks in my schedule...it always does.

The best part of all is that I made it to Miami this weekend for Joe's senior recital. A huge goal was to be healthy enough to make the trip, and although it was rough, we did it. The emotional lift from all of this is huge. The concert is tonight. We had wheelchairs ready for me all along the way, and we got good seats on the aircraft which allowed me to stretch out and minimize the discomfort. I have to say that Delta Airlines has done a fantastic job so far accommodating my special needs. Today will be a rest day in preparation for the big show tonight.

That brings up an important point. I think that someone facing a chronic illness needs to set some goals and milestones along the way. The satisfaction you get from achieving those goals, no mater how seemingly insignificant, are very meaningful. If you fall short, big deal. There will be other chances. I'm nowhere near full recovery yet, but if I set small goals along the way, it makes the process easier as I knock down the targets.

This strategy may not work for everyone, but it does for me. Look for the small victories along the way. Eventually, you'll look back and find that you are farther along than you could have dreamed.Tom

To send a message to Tom, Kathy and family goto;

http://www.caringbridge.org/visit/thomasbutler