Tuesday, March 16, 2010

Update Time

Well, another week or so has past. The last I updated, I was doing fairly well, and continue to do so. I went down to Chapel Hill last thursday, with my Dad, for a clinic appt. and then another OR bronch on Friday. It is getting a little crazy, to keep doing these OR bronchs. I am surprised my body does not shut down more. They do take a lot out of me, though.

The clinic appt. went well. My pulmonary function tests were actually about the best they have been since transplant, so that was encouraging. When they did the OR Bronch, Dr. Haithcock was pleased with how everything looked for the most part. He did do the balloon dilation in a few spots, eventhough he said the narrowing was not nearly as obvious as before. He felt there was no need to insert any stents, so I remain stent free. I still am culturing some bugs though, and the plan is to put me back on a short course of antibiotics to keep any bad infection from developing. So, I should start that any day now.

I return again next week for a check up and hopefully that will go well. It was my nephew Cole's birthday party over the weekend and it was at one of those bounce house places. Actually, the same place we had Simon and Matias' six year old party. I felt good enough to jump and slide and climb, so that is a good sign. The lungs held up pretty well.

I still continue to be sore around my ribs and incision area. Also, when I take a deep breath in, it kind of hurts in this same area. But I am not really congested, just feel a bit weak at times. I started back up with physical therapy and with the weather getting better, hopefully I can continue this positive trend.

We still have the family trip planned to Denver in a few weeks, so that is what is on the horizon. We are really excited for that.

So, overall a slightly boring report, but that is better then an exciting report with bad news.

I'll report back soon,

-Mitch

Tuesday, March 9, 2010

Six Months!

Yesterday, March 8th, was the six month mark from transplant. I am happy to report that things seem to be stabilizing. When the doctors, coordinators, and others who have gone through this experience say it can take 6 months to a year for things to really stabilize, perhaps they know what they are talking about.

When I last posted about 10 days ago, I was fresh out of another OR bronch where Dr. Haithcock removed my stents, did a bit of ballooning, and basically said lets do it again in two weeks and see what it looks like.

So far so good. I have some pain and discomfort when taking deep breaths, but for the most part I have had no wheezing or narrowing feelings. I have been back to work and back to a somewhat normal routine. Work has been incredibly busy. Perhaps on sheer call volume wise, the busiest the company has ever been (thanks to Snowmageddon, or snowpacolypse, or whatever everyone is calling it). So, the timing for me being back is good. I feel as though I am contributing and almost feel back mentally. Prograf makes me a bit forgetful at times. I have heard others report this, but it is very short term stuff, like If I took my meds in the am, or what I did the day before etc. But maybe I have always been like this :).

I am heading down to Chapel Hill on thursday for a clinic appt., but also on friday Dr. Haithcock is going to do the repeat OR Bronch. Perhaps everything will look good, perhaps he will balloon dilation a bit, or maybe even use the stents again. But again symptoms wise I do not feel even close to as bad as previous bronchs. My Dad is coming with me, so hopefully we will drive back friday right after the procedure.

I can not believe it has been six months! I actually finally sat down and wrote a letter to my donor family. I wrote it the other day and sent it off to the social worker at Chapel Hill. I will eventually post it on this blog, but want to wait and see if the donor family responds. They may or may not. But for now It will remain a personal letter to them. It was not hard to write, it only took 10 minutes , which shocked Rebecca. But, I have been thinking about what to say for six months, so it just flowed out. I feel a bit of anticipation again, almost like waiting for the lung call. Like I wonder when they will receive the letter and what their reaction might be? It is a weird feeling.

I restarted physical therapy up here in Bethesda at Suburban Hospital, which is close to my office. I really need to start challenging myself again and get these lungs working the best they can. Rebecca, myself and the boys plan to go to Denver for Spring Break week here at the end of the month beginning of April. We both have close friends there (Nick and Jamie), whom we have not visited since they have had their children and we cant wait to see them. The plan is to visit Jamie and her family first and then meet Nick up at Vail!! That will be a big test for these new lungs and how I am doing. Breathing at 8,000 feet!! But if I can, I will find a way, and I will snap a picture of me launching off of the back bowls into some fresh powder! That would be a major accomplishment!

Lets see what happens the next few weeks.

I will keep you all posted. Thanks for all the birthday wishes as well!!

-Mitch

Tuesday, March 2, 2010

Special Shout-Out To Cristin Caine

Life is hectic and busy. Everyone knows that. It seems everyone is dealing with issues whether they are physical and/or mental. Yet, they still find the time to reach out and encourage me. I remember as a child being so care free about life and not having a worry in the world, thanks to my parents. Hopefully, my kids feel that way. This post though is to recognize all of you and especially one person. Everyone has been so encouraging and so hopeful for my positive outcome. They may not post messages, but I hear from people I run into how much they love reading my updates, or through my mom, if she has bumped into someone in her office everyone is genuinely concerned about me. This keeps me going.

I want to personally thank everyone for their support. There are so many charities and organizations that people can donate to, I understand that. It amazes me sometimes that people choose Cystic Fibrosis to support despite any direct link to the disease, ie. immediate family member, etc. CF is a unique disease in that real progress has and is being made and now with lung transplant life expectancy is even higher! No genetic disease has ever really been cured, but what the CF foundation and researchers are doing is very close to a cure. Allowing children born with what was once a death sentence, into now the possibility and the probability of a somewhat "normal" life. And perhaps they will actually find that "cure".

Cristin McIntyre Caine is a perfect example of this amazing testament to the beauty of the human spirit. I have known the Mcintyre family since I was a kid and through friendship they have always been involved with helping raising money for CF. Cristin even worked for the foundation as a fundraiser out of college. Last saturday night she hosted a "Girls Night Out" type of event, where through her and her friends hardwork had about 100 or so items donated for auction. She did this on her own accord with no outside help from the foundation. It was just an event that through her genuine kindness wanted to do! She raised over $6,000!!! for Cystic Fibrosis. She, her mom, sister, and friends, donated their time and hard-work to put this event together. I am sure they have things in their own life that they could have easily not have had time to do something like this. The event was such a success and so well run it just blows me away the kindness that people have.

Cristin is Amazing!! Thank you so much for your friendship and support over the years. People like you are what life is all about.

-Mitch