quick update

So, a more clear definitive plan was ironed out yesterday. The results of the regular OR bronch biopsies again were inconclusive, just showing some sort of inflammatory response. Having high plasma levels. So, since everything else has been ruled out, they need to get a sample from the airways much lower down where a scope can not reach. This is also the area that looks worst on xrays, ct scans, etc. I didn't mention this last post, but it was discussed last week as well.

It is more of a surgical procedure, where they remove a very small piece of the lung tissue so they can completely analyze it. They do it though, through the chest wall. It is called a Thoracic Wedge Biopsy, I think. Not to dangerous or risky, however Dr Haithcock, did point out sometimes after trasnsplant the lung wall has scarring and such and it can be a bit tricky requiring a larger cut. It takes a few days to recover as they do put in a chest tube.

This test will allow them to rule-out every possible thing, and hopefully give a definitive picture on what is happening. If it is a form of rejection, what kind? And this will help guide the treatment plan. A bit invasive, that is why they don't do it often. However, they decided that until then to try another round of the high dose steroids IV. Like I did about 6 weeks ago. Perhaps it might work. I did the first dose today, do one tomorrow, and one friday. If I get a miraculous bounce from this they will hold on the surgical procedure, but it is tentatively scheduled for Monday.

I will be able to get out of here tomorrow for the weekend and spend time with Rebecca and the Boys! We did not see eachother yet, since her trip to Italy, as I left the night she came home.

So, this is what is going on. So, who noticed the new pic at the top?? Taken same trip, just decided to switch it up a bit. That was almost a year ago, before transplant! Crazy to think about.

-Mitch

Reality-The alphabet doesn't go ADC, does it? Somethings not right.

So, it has been 3 weeks. Trust me when I tell everyone I have been wanting to post more frequent updates. But, they would have sounded like everything was going perfect. I would have written about how I think my lungs are continuing to be better. How it was so good to be back at work, how Rebecca was able to go on her biking trip through Italy! And how I survived watching the boys for those 10 days, key word is survived. And how they finished kindergarten with great reviews and have made it to the first grade! How business was good, life seemed to be getting back to normal, and how Matias lost 2 teeth in two days. Telling me that the tooth fairy told him last time that for a big front tooth he gets ten bucks!! Who is this tooth fairy? Does she give your father a massage or something as well, I thought, but didn't ask!

Anyway, all of that was true, but the lungs have been getting worse. I have been ignoring a lot of it, trying to justify that the slight aches and pains while breathing were ok, and that my slightly less deep breaths were normal. Until, I started to not tolerate exercise nearly as well, and doing simple tasks were becoming very difficult. I am not coughing at all, so much different then pre-tx, with just CF. I started checking my SATS about a week or so ago regularly, and they are very poor and progressively got worse. For those that don't know from previous posts SATS are a little device I have that can measure the blood oxygen level in your body. It is just a finger sensor. By the end of last week, while at rest doing absolutely nothing they would read 88-90 maybe. Normal is basically 97 or above. After transplant I was 100 for sometime. With very light exertion they would go down to 83 or so. This is a sign that in the lower airways where the majority of oxygen exchange takes place, something is amiss. So, back down to Chapel Hill. Now, I know enough to know by now that your SAT levels are important. Also, I know that the forms of rejection Acute and Chronic are very different presentations. The weird thing being, acute rejection is very easy to diagnosis, mostly. The Bronchs I have would show certain characteristics. As do the biopsies, whereas with chronic rejection the diagnostic criteria is much different there is just so many theories and ways it can present, that the doctors are left to go on Pulmonary function test decline, and Oxygen levels. They can combine this with things, like eliminating every other treatable possiblity. Which is what they have done for me the last few months. I had some treatable complications, ie. the narrowing, some infection, some healing issues etc. The hope was treat these and the lungs should work perfectly. Well these things were succesffully treated and the lungs functions continue to decline, even quicker. WHY? No one really knows for sure. There are higher levels of lymphocytes? I think in my washes and biopsies, but no granulation formation, I think? To be honest with everyone, my doctors really don't know so they sometimes throw out these hypothesis, but the hypothesis get more and more refined as the testing comes back and prior history is taken into account.

Here is a digital photo of an xray I had the other day, not incredibly terrible,but basically all the white shadows, streaking, and spots in the middle two lower sections distant from the midline should not be there, it should be ribs and black. The scapula bones at the top and then heart in middle on both sides are normal.

But I want to level with everyone and myself, that finally the mention of Chronic Rejection and OB(Obliterans Bronchiolitis) has been brought up. They are the same thing, just different names. Different cellular and microscopic changes that occur. Some do respond to some changes in immunosuppression treatments. Which I think we will discuss tomorrow. Also, sadly, the remote possibility of Re-Transplanting me has been mentioned under the breath. Nothing anyone is considering yet, but something that has been discussed. If I don't catch a viral bug, or bad infection or anyting, I could have a lot of time in this chronic rejection realm. Perhaps a year or so, but I would not have the best quality of life in the sense of exercising and moving around. Physically and mentally, I do feel very well. My body has adjusted to the meds and my body feels relativley strong, although with the breathing issues I have lost some weight recently. I had to start back on oxygen when I need it.

So, that is the news where it stands. Yes, it totally sucks. Maybe I will have some spontaneous recovery, maybe a medication might work, but the more I read, and given my circumstances it does not look this way and Rebecca and I have to slowly come to the grips with the idea that we might have to do this again, and how do we go about doing this? The thought is exhausting for me, and although I would do it for my family, friends, and perhaps the followers of this blog (haha, love having followers very prophetic like), it is not the easiest decision to make. I should no more in the next few days. Enjoy some missing teeth photos below.

Until then,
Mitch

Although he lost this tooth a few months ago, did not want to leave Simon out!


Taken just the other day, me and Matias at the pool, missing a few teeth!