Monday, May 31, 2010

Back on the Train

Well, I hope everyone is having a great Memorial Day weekend! Cheers to all the Veterans and troops.

When I last left you all I was down in Chapel Hill recovering from the OR bronch and waiting on some test results. I was discharged late on Weds. night. Around 6pm, and I drove home eager to get back to maryland. I was actually feeling better and on the mend. The results turned out to be good. There was no current sign of any rejection! That was good news. All the cultures and tests were negative except for a positive culuture for the Rhinovirus. Basically, a common cold! Apparently, I caught a common cold a few weeks back. Makes sense, I had a runny nose, congestion etc. This was on the high dose of prednisone. However, it migrated to my lower airways. This is failry unusual and aside from new research available 5 years or so ago, they though it was impossible for the common cold to migrate to the lower airways. But new research has shown that indeed it can and cause serious problems if not addressed. However, with a virus there is not much you can really do except let it take its course, but you can make sure all other areas of the body are being treated appropriately.

So, they kept me on the antibiotics, and lower prednisone dose. I have been slowly feeling better. My chest no longer hurts when breathing. My energy and endurance is improving. I still am not quite breathing as well as I would like, but tolerating activity much better. I worked out yesterday and did very well. Again, my sats do drop when I start to really exert myself cardiovascularly, but I recover fine. I hope I will continue to improve albeit slowly.

It is just a very careful balancing game right now. My body is trying to reach a happy middle-ground with these new lungs and the immunosupression. Too much suppression and I get a cold or infection. Too little and rejection is possible. Also, my body experiences more side effect with more of the medications.

I feel much better though these last few days and hopefully will continue.

Thanks for all the calls, texts, voicemails, and a few posts. They keep me motivated. I do need to focus on the big picture and it has been great. 'Everyone dies, but not every man lives life', or something like that. Just read that the other day in a book I am reading. I have definitely been living life and enjoying it.

-Mitch

Tuesday, May 25, 2010

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

Wednesday, May 5, 2010

Reject This

Well, perhaps it is time for this blog to get exciting again. Not in the best way possible, I'm afraid. It seems as though I am having a bout of acute rejection. Yes, this sounds bad, but perhaps it will turn out to be a good thing....

The last few weeks I have actually been feeling fairly good. My exercise tolerance was up, my energy level was fairly good, I was working hard and getting a lot accomplished and of course really thought life was about as normal as it had been in a long time. I did have this type of glass ceiling though that was bothering me. Where it seemed like exercise was not getting easier, and I could just not breakthrough and make larger gains.

The team at Chapel Hill wanted to see me last friday in clinic, since we were planning a mothers day trip this weekend (still going), and did not want to go off to chapel hill upon returning, so they requested I come down. Well, it turned out to be a good thing, diagnostic wise. It seems the chest xray on the left side looked much worse then previously. They had been watching a small white nodule area about a month or two back, which they cultured and it was basically negative, and did not change. However, this time it was much larger and diffuse on the left handside. Their first inclination was some sort of fungal or bacterial infection, since I really did not have any clinical symptoms. However, they needed another bronchoscopy to take samples and biopsies to figure out how to treat it and what it was. So, they scheduled me for a bronch on monday, the 3rd, and they also scheduled a line placement for the 4th, knowing it was a given i would need some sort of IV treatment.

I was a bit bummed out, and it was annoying to drive home friday night, and then return first thing monday morning for these procedures. My Dad came with me and did the driving. They did the Bronch, which was not an OR bronch, so you would think recover would be a bit easier, however I was really heavily sedated, and I don't remember a thing at all about monday. Some how I walked out of the hospital under my own power, went into Chiptole (becoming a tradition) ordered, took it back to my room, and ate it. The first thing I remember though is waking up at 7:30 at night on the couch in the hotel, with a 3/4 eaten burrito spread over the table. That no memory cocktail really works. I sure remember everything before, the 4 IV sticks it took to get the IV started, including a hit nerve in my hand. I hate my veins.

So, reluctantly I returned first thing tuesday morning for the line placement. Luckily, I had a Interventional Radioligist Doc, that really listened to me. I told him all about my aweful vein history. He listened!! I told him where I thought his best chance was, he listened!! I told him what the plan B option was, and get this, he listened!!! and prepped that area. Well, he was great and was able to thread the line no problem, something someone has not been able to do in 15 years! That is why I had a port for 10 and the last picc after transplant had to come out.

Anyway, finally today we got some results and news. Dr. Noone called personally and said the pathologist discovered acute rejection. They are a bit baffled why the left side is the only side that looks bad, and that a nodule is there. Mostly not due to rejection. But no two cases are really alike. The good news is most people, like I stated in previous posts do get an episode or two of acute rejection in the first year. I have avoided it so far or at least never had a positive biopsy. There is a concrete treatment for this, it is not long, about a week, of high doses of steroids. 3 days via iv, and the rest oral. It should work, and potentially I could get much better and break through that glass ceiling. So, it is a bit nice to have an actual answer with a definite solution and approach. I pick up the meds tomorrow on our way to the airport, and I hope to be in a steroid induced rage by tomorrow night. So, if you see some wild maniac running naked on the beaches of the west coast of florida looking for dead pelicans and dolphins from the BP oil spill and cursing Big Oil and all of Earth's "advances" in a hypocritical fashion, that would be me!!!

Until then, may the force be with you!

-Mitch