Back at UNC

I really don't keep this blog as up to date as I would like. There are a few reasons for that. The main being I simply do not enjoy writing these blog posts anymore. That is the truth. It has become a bit repetitve, frustrating, difficult etc. I have been fairly disappointed the last few weeks and I guess the last few months actually. Althought, there have been times where I have felt very good, it has been short lived. I definitely function and do much better then before transplant, however, I have in no way stabalized yet and reached a functional level that is where I want it to be. Every few weeks I deal with some setbacks. I still have issues. Not what I expected almost 9 months out. I really expected it to go two ways. Either a catastrophe or a perfect easy outcome. I have the middle ground. I will take this, don't get me wrong, but it is not what I was prepared for.

We had an incredible time on our trip to Florida. The steroid treatment for the acute rejection was not that bad or hard to deal with. In fact, I felt pretty good the whole time. I was able to do whatever I wanted for the most part. We spent the first few days at Bonita Springs with Rebecca's Mom and Peter. It was perfect. The gulf was beautiful, the weather was perfect, the boys loved swimming and playing. We then went up to visit Rebecca's Dad (Larry), and his friend Nancy. They were so hospitable. We made it to Disney for the day and the boys loved it. It was a perfect age to take them. They were able to look at the map and plan out what they wanted to do. No strollers, no complaing, they waited in lines, etc. it was perfect. I had no problems walking around the whole park never once needing a rest. I was feeling good. Thanks to Larry for taking us.

After getting back to Maryland, I slowly started to not feel that great. Just not breathing as well, not able to exercise as much. They put me on antibiotics to kind of cover me from infection, because sometimes with the high doses of steroids it can make you more susceptible to infection. However, I continued to kind of slide. Not taking as deep of breaths, and also having some pain when I take deep breaths in. So, I came down here Sunday night for an appointment on Monday, yesterday.

They took an xray. This time the left side look ok, perhaps a bit better, but now there are some new spots on the right side. So, they ordered a chest CTscan and immediately agreed another bronch (OR this time) would be appropriate. They scheduled the Bronch for that evening. That was good, no waiting around. They admitted me and took the CT scan. It looked like I had serious narrowing on the right side. So, the bronch was a great idea. I had the bronch, but not until nearly 7pm. Anyway, it turns out the airways looked "very good" according to Dr. V. (he is the other lung transplant surgeon and I will botch his name so I need to use Dr. V and look it up for another post). He said there was some junk and puss on the right side that he cleaned up and he took samples etc.

So, the team is a bit baffled again. Not really sure what is causing these nodules, not really sure why my breathing is not better. They have their ideas and theories, but all of my cultures and tests come back negative for the most part except for some lingering old CF bugs that shouldn't be that hard to treat. I am still waiting on the biopsies again. They took some more to see if any rejection is still present. They hope that just some continued antibiotics will have me feeling better and just more time and healing is needed, since I had all those narrowing and stenosis issues early on.

I am hoping they are right, or something clear shows up with a direct treatment. It is getting a bit frustrating...

I will post more when I know more.

-Mitch