Thursday, October 28, 2010

The New Me

Simon on cloud nine with his "bestest girl friend Abby"




What a great week it has been. I was able to make it home to Maryland for the first time since I left in a breathless rush on 07/07/2010 and was admitted right to the hospital. A few days after that I was in ICU and the rest is kind of a blur. I survived thanks to the incredible staff at Chapel Hill, my caretakers Rebecca and my Mom, Gayle. Mentally, I had to draw support from the thought of somehow making out of a second transplant and being able to just hug and experience life with the boys, Simon and Matias. To do this, I relied on all of my family and friends that were pulling for me. It was like I was sending out an SOS, a message in a bottle, while I was waiting for another donor and I could feel a huge support network pulling for me. The same thing with recovery. There were plenty of times where I complained and thought I just couldn't do it or things were going wrong again and without people pushing me and sending me messages of support, I wouldn't have been able to have stayed sane. One time was enough, but a second time??

So, to be home and see my house and yard with the beautiful fall foliage was symbolic. We were lucky enough to visit with so many people even though we were there such a short time. We devoured incredible food and even were told to keep it down at one restaurant, we were having so much fun. (or at least one of us was told to keep it done ;-)) So, thanks everyone for a great weekend.

I don't know why I deserved yet a second miracle chance, all I know is that I am still alive and doing incredibly well, in the big picture. The lungs feel exceptional and I am gradually starting to retrain my breathing muscles to use the full capacity of these lungs. For over 10 years, I had been taking very shallow breaths and using my accessory and neck muscles to breathe. It is easy to fall into that habit. But now I need to strengthen my diaphragm and intercostal muscles to take full deep breaths unconsciously. There are trade-offs with the New Me. My next post I hope to provide a list of all of the side effects, and little subtleties that are different in my body. It will take some time to get use to. But to give you an idea, diabetes, neuropathies, shaking, sensitive skin,aching bones.. And the list goes on, but it makes you feel different. I will explore that in a future post, as I want to point out to people that are waiting for transplant or have just gone through one what might be possible to experience. However, with all of these bothersome issues, to be able to breathe and have fun again is more then worth it. They should call people with Cystic Fibrosis who undergo transplant something like CF 2.0 We have a new lease on life from some selfless hero and their family. Which between the two of us is a New Me.

Happy Halloween

Thursday, October 21, 2010

3 Month Anniversary

Hello all,

Today is my 3 month mark post second transplant. My lungs and breathing feel perfect. Well, as perfect as I know perfect to be. I received my biopsy results before the weekend actuall, Dr. Coakley was nice enough to call me and tell me before I left for the Phish show. Everything was completely negative. No signs of any acute rejection, no infection, not even a hint of congestion. Airways were wide open. So great news all around.

I then preceded to enjoy a beautiful phish show. Some highlights: guelah papyrus, mango song, pebbles and marbles, David Bowie, Crosseyed and Painless(talking heads, which is always rocking)!, 2001, sneakin sally through the alley, and an interesting YEM. So, no disappointments there. I left out many more....

Despite the show, I had plenty of down time in my hotel room. And was actually able to relax in bed and ponder the last 3 months but also the last year. What a whirlwind. So quickly you forget about the sick days and start to take for granted breathing freely. I am not there yet, but isn't that the goal?? I've definitely almost forgotten just how sick and close to death I was. However, when your transplant surgeon admits he was very worried (but to his defense, not till after the tx) then you tend to never forget. But I don't want to take this gift for granted. So, it is a bizarre dilemma. I finished up a letter to my new donor family on this 3-month anniversary. I really hope the letter finds them and helps them. I do hope for a response. It was disconcerting last time to never get a response, however I can understand why a family or lack thereof might not need to write back. Thanks might just be enough.

Finally, what once would be a big deal but now seems small. I ended up having to receive cortisone injections into my hip joints this morning to treat the chronic hip and muscle pain I've been having. An orthopedist thinks I have an impingement syndrome in my hips. Well the buildup was worse then the procedure. It hurt, but after 2 double lung transplants it was a walk in the park. Good news is, it seems to be working! Pain is so much better. Let's see what the next week holds.

Looking forward to starting this 4th month out on the right foot, or left as long as I don't have any pain. ;-)

Thanks everyone,
Mitch

Thursday, October 14, 2010

Full Circle

Riding the Chopper bicycle!! You all know you want one!

Hello All,

I wanted to quickly touch base as my 3 month mark of my second transplant is quickly approaching! I can not believe all that has transpired the last 4 months. Like a previous post I made, the time seems hard to measure.

I continue to do very well this time. The lungs feel exceptional. I can breathe freely and deeply. In fact today, I had my 3 month bronchoscopy. This is where they go down into the lungs and take a look at everything and take a biopsy to check for rejection. They did my procedure in the OR, under general anesthesia just as a precaution given my bleeding episode last time. It went perfectly. IV insertion (no problem), sedation went perfect (love propofyl, not as much as MJ though), recovery and discharge were easy. Dr. Coakley said the lungs were wide open and looked great. No infection present at all. They took samples and they will take 3 days or so to come back. I feel great, so I have no reason to believe anything will show up. One never knows though.

My only remaining major issue is the pain I suffer from in my hip joints on both sides. I believe I mentioned this a few post back. It turns out I have an impingement syndrome that has developed. According to the Orthopedist, close to 10 years of practically no real intense physical exercise caused the joints to develop some tissue and tightness. I exercised real hard about a month ago for 3 days straight and tore the tissue away and now when the muscles and tendons glide across the joint they get impinged upon. It has made me slow my gait to a snails pace. I can still work out on a bike, and do certain exercise. I also have worked more on my upper body in Rehab. The treatment is a steroid injection into the joints. Not much fun, but I seem to have no choice. Ironic that now I can breathe freely, but cant walk fast or run to enjoy these lungs. I'll take the breathing freely though anyday. What a great feeling.

So, tomorrow I have clinic and expect a good report from that. I will post a nice synopsis once I get my biopsy results.

I am heading off to yet another Phish show Saturday in South Carolina. I need a little escape to gather my thoughts and put into perspective all that I have been through and all I have ahead of me. What better way to do it then enjoying my favorite band...

Until then, thank you all for the well wishes,

Mitch