Saturday, June 4, 2011


I have had many uncomfortable nights over the last few weeks but over last weekend it was so bad that I realized how close to death I really am. Reality has finally hit, this is bad, this is not the spot I want to be only two months into waiting on the transplant list. I could have months to go and yet I am nearly helpless. Mostly I am helpless unless the drugs work on this lung junk there is nothing I can do. If you have ever had someone sit on your chest or hold their hand over your mouth and you panic from not being able to breathe that is what it feels like most of the time. What's funny is that no one, even those closest to me can understand my reality, that isn't a bad thing it is just reality and I really wouldn't want anyone to know what this feels like because there are days where I would guess this is hell on earth.

My first night here I was gasping for every breath I took, I couldn't relax because it felt like I was going to forget how to breathe. For as bad as things were in January and February this by far is much worse. I lost a lot then and I have lost a lot now, physically.

Friday was a lightbulb day, it wasn't a great day but I was able to ride the bike and take a walk.. I realized today  that the only way I am going to give myself the best shot at transplant is to truly put myself first and to put aside my negative ideas about a few things. I requested help from physical therapy and I received the pulmonary rehab PT, that was great. So now I have some exercise bands to work my arms and legs, the trick is it doesn't take much but it requires doing and so I will do.

I also am convinced, even though it hurts me to say it, the stomach tube is probably the way to go. I can consume 1,500-2,000 while I sleep, without any effort on my part to think about it. I am exhausted from trying to consume calories and exercise and take care of myself that I am wore out. But it would be huge to have a large portion of my days calories taken care of at night so my day I can eat more what I want and not worry so much that I am pushing them all. My brother made a good point last night that I hadn't thought of and that was my grandfather had a feeding tube the last years of his life after having been paralized in an auto accident. I guess I was seeing the feeding tube as end of life thing because of that and should have seen it as life sustaining.

I have also learned to ask for things that I need. I learned a lot in Jan.Feb. but I have learned a great deal more. I am still extermemly miserable with my stomach and lungs throughout the day, if only the stomach didn't have to push on the lungs, it would make things easier.

I have a very, very long journey ahead I ask that you pray for my strength to get through this and continue fighting, and hope for the best - whatever that may be.

No comments:

Post a Comment