Friday, January 15, 2010

stents Deployed

Well, it looks like everything went well yesterday. Dr. H, came into the pre-op area about 3pm and went over all the details on what he intended to do. After hearing how I felt the week immediately after the last balloon bronch, he was fairly confident this should help.

Procedure really only took about an hour. I was waking up from sedation around 6pm and out the door by 7pm. My recollection of last night is a bit groggy, but apparently it went perfectly. Dr. H, is happy with the placement and said there were no issues placing the stents, and that all things considere, the airways and new lungs looked good. No signs of any lingering infection either.

I demanded Chipotle, and my Dad took me there. I got a loaded Burrito with chips to go. Back at the hotel I got a few different drinks, as my throat was now starting to really feel sore. I don't remember devouring the burrito in my room, or drinking a bottle of water, a bottle of coke, and a bottle of apple juice. Or making tea, but when I woke up in the morning someone must have done those things!! I wonder if that counts as a "light meal" that the discharge nurse suggested for the evening.

Anyway, I woke up with a continued sore throat and body aches. This has been typical from these procedures and the full sedation. We were not sure what really to do, as Becky briefly mentioned coming to clinic either today(friday), or next friday. I was still in a bit of a daze, although I felt more open and my breathing was much easier. So, my Dad and I decided to just leave and I would go to clinic next week. Well, 20 minutes out, I get a call from the doctor and they want me back to do PFT's.(Pulmonary Function Tests), I guess they really wanted to get a baseline of where I am at after the stents. Probably would have been best to wait 24 hours or so, but since it was friday and we wanted to get back to Maryland we really had no choice.

So, we headed back to the hospital and did the test. Surprisingly, it was quite good. My best numbers since the transplant, and this was in this groggy painful condition. So, that is very comforting news, by tomorrow or sunday, I should feel back to "normal" and resume some exercise. If these stents keep my airways open, hopefully my numbers will increase even more! The plan is to return to clinic next friday and get an xray, bloodwork, and another set of pfts. See how things look and make a long-term plan from there.

Overall, it appears to be a successful trip. Glad I did not wait until the 20th to have this done.

Talk to you all soon,
Mitch

Thursday, January 14, 2010

Bronch with Stents Today

Short update. So, after feeling great last week, I think I mentioned I could slowly start to feel the narrowing returning. I was scheduled for the stent placement on Jan. 20th, but on monday, I was starting to wheeze much worse and get more short of breath. So, I called Chapel Hill and Becky and Dr. Haithcock agreed to get me on the schedule this week. So, today is the day. 3pm, to be specific.

My Dad and I drove down last night, I took him to the lung transplant support group which meets every other Wednesday so that worked out. It is a interesting group made up of people waiting for a transplant and who have had a transplant. We are now getting ready to head over to the hospital shortly.

Hopefully, this stent system will do the trick. Dr. Haithcock, generally leaves the stents in for up to 3 months and then removes them. Hopefully, by that time your body has healed and can keep the airway open without any further help.

I will get an update to everyone as soon as we can. If anyone is interested here is a link to the type of stent he uses. http://www.alveolus.com/tracheobronchial.php

-Mitch

Saturday, January 9, 2010

Back in Maryland- A Few Afterthoughts

Well, I made it back to maryland this morning. There were just a few things I forgot to mention in my last long post, that I wanted to mention. Yesterday happened to also be the exact 4 month mark after my transplant. 09/08/09-01/08/10. One can tell that life has resumed to a more normal level when that was not the focus of my post. I remember feeling such a sense of accomplishment and success reaching the 1 month mark, 8 week mark, etc. I definitely did not forget the day, but it is not the focus any longer. I feel as though, despite the recent setbacks, that the mere length of time is not what is most important to me in this process. Although it does feel nice...

I finally feel ready to reach out to my donor family and let them know how I feel about their gift of organ donation and how I am doing. I will start to craft a letter to them. Not exactly sure what approach to take, but it will come to me. I wanted my health, medications, and outcome to stabilize a bit and I also wanted to physically feel strong or stronger before writing such an important letter. This will help me say things the way I want to say them without rushing out some steroid induced emotional letter that does not symbolize what I want to say.

The way the process works is as follows: Either the donor or recipient can write a letter at any time. It is handed over to a third-party (I forget the name, but it might have something to do with UNOS) through your coordinator, they read the letter and ensure total anonymity before forwarding it on to the other party. This protects peoples privacy etc. However, if a level of correspondence and trust develops the donor family and recipient can mutually agree to end the privacy and communicate directly and even meet. In case anyone was interested..

Anyway, that is about it for now.

-Mitch

Friday, January 8, 2010

2010- A Breathing Odyssey

Good sequels are not rushed. Sorry for the long delay in posts. Happy New Year to all!! This year I will approach as a sequel to my life before new lungs. Like all good stories it will have its ups and downs (I'm sure), it will have conflict, resolution, trials and tribulations...you get the idea. It will probably be long (like Avatar), in fact it will be 365 days. If it is a success, part 3 will come out in 2011!! It might not gross a billion dollars, but lock it in for at least a million beautiful memories. So, lets get it started.

When we last left the story, the protagonist (yours truly), was in a difficult battle with a team of dark forces led by their leader 'Stenosis'. We fled with the family to Florida and spent time with Rebecca's mom, Lois, in Vero Beach. We enjoyed a wonderful Christmas , time on the beach, and relaxation. The boys absolutely love 'Grammies Beach House' and had a lot of fun playing wii and wrestling with Peter. I actually think I might have played more wii then them. Super Mario Smash bros. is addicting.

Unfortunately, Stenosis found us! My breathing deteriorated very rapidly. I was back to wheezing and unable to tolerate much exercise. I was determined to continue with the trip, which included the Phish show in Miami. I was in correspondence with the docs and Becky, and we started back on antibiotics just to prevent any further complications from infection, and I was told to really monitor my SATS (blood oxygen level) if they remained in the low to mid 90's at rest, I am ok.

On the 27th we headed down to my parents place in Palm Beach. By this time, I really could not do anything active beyond walking straight lines, but I tried. However, on the 28th we made it to the show, I would not be denied! It was fantastic! I am so glad we went. It was a bit surreal because on both Reba's and my mind was my health. We were not sure if my poor breathing was still just Mr. Stenosis, or some more vengeful unknown enemy. But the music prevailed this night. I was able to stand and bob my head and move my hands (the nerdy hippy dance), so all was good. The set list was perfect. From the opening notes of the first song (Sample in a jar), to the closing contact-character zero we were able to lose ourselves for a few precious minutes and not worry. I had a feeling all week we were in for a good night and was not disappointed, karma. We had great seats taboot, see photo below.

During this time, we were in contact with Chapel Hill and Dr. Haithcock wanted me back in there to do the balloon bronch again on the 30th. So, off we went driving all day on the 29th. Had the bronch on the 30th. The procedure went flawlessly and this time we got some good news. Dr. Haithcock said he really thinks the stenosis is confined to the anastomes and not distally. So, this happens more like 20% of the time. Unfortunately, mine is a bit persistent and won't go away with these balloon bronchs, so he said he would put in the stents in about 2 weeks. Immediately though, I felt 100% better, by the time we got to Maryland on the 31st I was breathing so much better. What a relief to know that this is still fixable. I went from not being able to walk up some stairs, to unloading the car, putting things away, playing with the boys, and ringing in the new year at my brother Terry and Tracy's house playing rockband and counting down the ball with the WHOLE family!! Kids included. Some how, all the kids were awake and into it and about 15-20 of us rang in the new year. It made me feel so alive!! Thank you Terry and Tracy!! The boys have never come close to staying up to midnight, perhaps they could feel how special this night was.

About 10 days have now passed since the last balloon bronch and the stent procedure is now scheduled for the 20th. I felt great up until about 24 hours ago and now the narrowing or Mr. Stenosis has located me again. I slowly start to feel the narrowing creep into my airway and the wheezing is slowly starting. I am actually in Chapel Hill now and just finished a clinic appointment and rehab. The plan is to still make it to the 20th, if it gets much more severe, like in Florida, I am to call them and see if it can be bumped up. I know they have to procure the stents, etc, but that should be done or being done.

Back to Maryland tomorrow and hopefully I can fool the enemy to stay away and not progress for another 10 days.....Again, this sequel will be long, sorry for the long post, but thanks for reading. BTW, the second photo below is the day we left Chapel Hill. The boys made some great friends and it was symbolic of our time here. We found the people nice and approachable and it was bitter sweet to leave...

-Mitch


Here are some of the boys friends on their left and right is another set of twins, Trevor and Logan. In the back is the legendary "bam-Bam"

Here is a view from our seats at the Phish show before it began. Great seats right on top of Page's Keys!