Deja Vu

It has been about two weeks or so since my last update. Things seem to be stuck in this viscous cycle of repetition. Where I will have a few "good" weeks and then a "bad" one. Since my last post, I was feeling quite well. Got back to work, went skiing, infection and stents seemed to be working. Well, the transplant clinic wanted to see me for a follow-up appointment on Feb. 24th, which was a Wednesday. My antibiotics were to stop that day, and perhaps even finally pull out this IV line I still have.

Well, of course on the Monday of last week I started to not feel so good. This time it seemed to be a slight narrowing. My cough and infection were under control. I got down to Chapel Hill on Tuesday night, and spent the most of the night coughing. It was weird, I laid down to go to sleep and coughed a bit and then felt this tickle in my throat. If I coughed the tickle would get worse, but since their was no congestion, I could force myself to stop coughing and then I would really be symptom free, except for the narrowing feeling again. Like a slight wheeze when breathing in and out. Well, went to clinic the next day, the xray was inconclusive for the most part, but all the docs happened to be in the room at once. Ie. the Surgeons, CF docs, and transplant docs, it was like perfect timing, they all listened to me and I described my symptoms and it was all immediately agreed upon that they needed to go back down and take another look. Another OR Bronch. At first, they thought they were going to be able to do it that day, but I think Dr. Haithcock really wanted to take a look since he was gone for the last one, and since I was not in any immediate distress the OR Bronch was set up for first case Friday.

I killed the next 48 hours or so seeing movies Reba would never see with me, ie. Wolfman (thumbs down), Shelter Island (thumbs up, but wait for DVD/on demand), reading books and drinking coffee at Barnes and Noble. Sounds like the life, right? But really, these stays away from the family, without anyone there, and really wanting to back to a normal life are frustrating. Finally friday arrived, and for once they were not kidding, I was first on the list. I was in the operating room in la la land by 7:30am! By ten I was awake and the procedure was done no problems this time with breathing tubes or sedation etc.

Outcome: Well, for the most part it was positive according to Dr. Haithcock. He said I did cough up and move the stents. So, that was the "tickle" I was feeling. So, he took both the stents out. He said the right side looked perfect though and was wide open, seems like the stent worked. For how long we will see. He said the left side still needed some healing and he ballooned this again because it was narrow. He then said he wants to repeat the procedure in two weeks again, to stay ahead of it. Perhaps putting back in a stent on the left side, he said a longer one this time, and with luck the right will need nothing.

It took me the full day friday to recover, and I was sore and tired on Saturday, but I drove back to MD. I was very tired last night, but today, Sunday, am beginning to feel back to normal and strong. Every two weeks or so of full on general anesthesia is tough for the body. I don't know what they do to me while I'm out, but I am always so sore the next day, mouth, jaw, neck muscles, legs for some reason (I keep imagining like a weird scene that Quentin Tarantino would write or something).

My current symptoms seem to follow what Dr. Haithcock sees. I am breathing good today, but my left side does feel a bit weaker and a bit painful when I take a deep breath in. Right side feels great, hardly any coughing at all. I really hope for a good week. They have me off all the IV antibiotics for now, back to the regular post transplant regime of meds and see how things go the next two weeks.

I love the team at Chapel Hill, but this is where the management game becomes challenging. Being a 4-5 hour drive to the hospital, it is not like you can just hop over there and have them check you out. I have to leave for at least 2 days, which the last 3 times has turned into 5 day ordeals or so. But if things stabilize I will slowly start to go there less and have opened up channels here with my doctors. Until I really stabilize though, I have no alternatives which is fine because I feel most comfortable in their care, but I really want to stop going back!

-Mitch