A little spark...

Yesterday was the 10 month mark since my transplant! Wow, I can not believe how time has been evaporating. As usual, I have been meaning to provide an update on things and I end up getting lost in life. Even with a trail of breadcrumbs, finding my way back to this blog has been difficult lately. Perhaps that is a good thing. I continue to feel incredible. However, I should back up a month or so and fill you in on the medical side of things.

I went to Chapel Hill about 4 weeks ago for my 9 month check-up and bronchoscopy. I had an ever tiny cough that would present itself once a day, or even every other day. Not much right? Back to the pre-tx days if I only coughed one time a day people would have thought I was cured. I was coughing thousands of times by noon. Well, the results of the bronch actually showed that I had a very tiny RSV cold in my lungs and also had minor A1 rejection. This is acute rejection. It was not the best news, but not terrible by any means. The virus was treated with a 10 day course of anti-viral. Then I was put on a 2 week bump in my prednisone (steroid therapy) to treat the minor acute rejection. An episode of acute rejection is not uncommon in the first year or two after tx. This was my first indication and it was the lowest grade possible. My breathing tests remained unchanged at 70%! And despite the tiny cough I felt great. Fast forward to today. Cough is gone. Prednisone treatment is over. I feel fine. I return to Chapel Hill this week for them to do another bronch and see if everything is resolved from a pathology standpoint.

Now the good news. I continue to amaze myself every week on what I am able to do again. I have gained 24 pounds since my low-point after my second transplant. I have been going to the gym (not quite regularly), I have been playing tennis which is an amazing workout, helping coach the boys baseball team, and even started to play Adult softball again! First game tonight, lets see how that goes. My energy level allows me to do whatever I want. I don't shy away from any activities anymore. Whether it is simple things like going for a walk or being that Dad at the birthday parties who stays and plays with all the kids. It is all fun for me again. The boys went to a birthday party the other week and at the end I was in there playing kick-ball with them and running the bases, chasing down little 7 year olds and laughing. Other parents commented to me that it looked like I was having as much fun as the kids. Guess what? I was having more fun then them! It has just been too long since doing physical activity was a chore, a struggle like I was suffocating, and a disappointment, now it is a gift.

“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”

-Albert Schweitzer At this 10 month mark I can not express enough my gratitude to my donor and his family for that spark I needed to light my fire again. I spoke at the CF walk yesterday, which coincided with my 10 month anniversary of new lungs. It was a perfect day and we had a good turnout. I encouraged everyone that with the current research going on today with CF, that children born with the disease today or even those young still will have a treatment that prevents them from needing a lung transplant and more importantly allows them to breathe normally. I actually think that this is possible in the future. Whether it be 2 years, 5, or 20. It will happen. There are just too many advancements being made and too many amazing people working on it. So, thanks to everyone for your continued support. -Mitch Here is a photo from the walk yesterday of my good friend Jess Gordon who I met in Nursery School!- photo by Matias Greenberg

Now here is a photo of our 7 year old boys! Who would have ever thought this was possible back in nursery school!

Debbie Cox

Debbie Cox 04/06/1981-04/05/2011

I hate using my blog for eulogies, but this one is necessary and also the hardest for me. I had not met Deb yet. Although we had plans to sync up at a set break during a Phish show, this summer. Sharing in the anitcipation of that 'Second Set'. I am broken to tell you all that Deb's Second Set has ended. I am sure she is dancing away and using her energy celebrating the encore of her life.

Deb, an incredibly beautiful woman both inside and outside, passed away from Cystic Fibrosis and post 3 plus years from a double-lung transplant. She was a vibrant friendly soul. Just from a few emails and facebook messages we were like long lost brother and sister. That may sound foolish, but we shared many characteristics about our lives, interests, hopes, fears, and struggles. CF people have an unspoken bond. Only we know how we struggle, how we stay positive, how we go about life sucking every drop of meaning from the marrow of this existence. However our bond went a step further.

Both Deb and myself were Phish heads. Not just casual observers of the band, but truly into the music. The vibration of life that the band put forth each and every time they take the stage, we understood. We commented to eachother that the likliehood of finding another person with Cystic Fibrosis who had undergone a double-lung transplant, but also was hooked (so to say), by Phish is probably unlikely.

When I was going through my second transplant I would find emails from her with links to downloads of the Fall tour. We talked about how important the music was to us. How it represented freedom and made us happy. If only for a few hours.

Just a month ago we were talking about diabetic pumps. She was excited to get hers. She was posting messages on my wall encouraging me to look into them. We were also talking music and how Phish just announced their summer tour, figuring out which shows we were going to. She also had plans to go to the Furthur shows in Atlanta this weekend and some Panic shows. She was really excited to hook up with her friends and celebrate her 30th birthday with some legendary music! Our last correspondence was just a little over a week ago and I knew she was struggling but tried to remain positive. I want to share her message from a month ago.

'I'm excited to be on this side of the country, bc I can get in several shows if I go for it. I'm planning on going to Furthur at the Fox in Atlanta the weekend of my 30th birthday and I'm SO excited to see this line up. I hear they are amazing.' DC-March 2011.

On tuesday, while I was skiing in her homestate of Colorado, she passed away. I'm glad I was out in the mountains that day enjoying life and the beauty of nature. I don't understand anything except how to enjoy this life with family and friends. Something I know Deb did to her fullest.

'Set the Gearshift for the high gear of your Soul'

-Mitch

I did it!!

Hello All,

On March 4th, 2011, I celebrated my 38th birthday! For the first time in my lifetime I officially surpassed the median Age of survival for a person with Cystic Fibrosis, which currently stands at 37.4 in the US. I obviously would not have done this without the support of multitudes of people. Family, friends, doctors, researchers, nurses, therapists, strangers, Surgeons, and of course 2 Donors and their families! It is overwhelming to think about the web of life that is weaved into my existence. Like a snowflake, an infinite number of possibilities created. But to me, I have always lived my life beating to a drum that has kept me on a clear path. A higher power, beyond what I can comprehend, beating at the right frequency.

There are still plenty of children who never live to be adolescents or adults. Many Adults who perish right when their life is at its cusp! But real progress is being made. The median age is also skewed a bit because of the multitudes of benign or less severe mutations being discovered on the defective chromosome. Some of these people are not even diagnosed until their 40's or 50's. So, it is important that we don't get too excited by the number of 37, or when it jumps to 38 or 39, which it probably will shortly do. We need to focus on the children and the medications and research being developed to prolong their lives.

I am going to keep this post short for now, so everyone can relish in the beauty of the number 38!

-Mitch

(Hours before my transplant July 2010)

(A few months after my Transplant-October-2010)

State of the CFUnion

Dr. Robert Beall President CFF- 02/03/2011

State of Science address. Thank you for your hard work!

Hello all,

So, this blog has usually been about my transplant and will continue to be. Things on that front are going excellent. Working out, breathing great, it is a welcome change.

However, something I read the other day prompted me to perhaps share some insight into the CF community as I see it. What better a time then now, as last thursday the 3rd of February, I went to the annual conference for the Metro CF Chapter. This is a unique annual event since this chapter shares office space with the National Chapter. This allows all important folk at CFF to be present and to also present. Namely, Dr. Bob Beall, our fearless leader gave a state of the CF union so to speak. It was very informative and showed how hard people are working to find a cure for this disease. I will share some of his knowledge at the end.

So, I was reading a disturbing blog post the other day making reference to the CF population being fixated on the median life expectancy age of 37! Saying it was a negative statistic in that it might encourage patients to give up and parents of said patients to not encourage them to chase their dreams. I am paraphrasing, but this was the gist of it. I was taken aback. Being intimately affiliated with the CF foundation my whole life and also numerous CF individuals and families, I usually find one common characteristic. That is a never give up attitude. A fighting characteristic that this disease will never get the best of us and WE will live our lives! I have never heard one CF physician act as though a CF person should not strive for a productive and enjoyable future. This blog post made reference to doctors just consoling parents and saying "he probably won't make highschool". These certainly are not CF doctors at CF centers. If it was, I can assure said poster that Dr. Beall wants to know who they are!! And I implore you to name names!! Funding talks, and cynicism walks (or runs looking for another job ) In all seriousness, perhaps there are doctors in remote parts or clueless internists who have no clue about CF that perhaps might make a statement like this, but it is up to the parents to get thee to a CF Center!

37 is a huge Milestone. When I was born the life expectancy was just over 5 years old. This is when a small group of parents were just starting the CFF. Research was just starting and so was funding. These parents did not focus on that number, but instead said, "We will find a cure", I know this because my Mom, Gayle, was one of these original people. They paid no attention to a median age of 5 then, why would parents pay attention to a number like 37, now?? Bueller, Bueller????? As I approached 5 the median age jumped to 12, as I approached 12 to 17, 17-25, It was like I was chasing this number. I strived to catch it, surpass it, leave it in my dust. This was the same hopeful attitude that most of who I encountered strived for. However, this disease will catch up to you. You can not out run it. In one way or another it will get you...digestion, diabetes, sinuses, and most of all breathing. I know siblings who both had CF and now either the sister or brother are deceased and the other is still fighting. Yet both supposedly had the same care and treatment. Did one give up? There are people with CF from all walks of life from the best care to the worst care that have had differing outcomes. Why? Well, we are learning more about this disease everyday. The mutations, micro-mutations, the accessory genes that play a role in the outcomes. It is unfair to tell these people they did not try hard enough. The fact is the majority of CF patients are not here, they are deceased. Us Minority left need to continue to raise awareness and fundraising so 37 will turn to 45 and so on...I am 37 now, I have never passed the median age expectancy and now I hope I won't. Perhaps by the end of the year the age will be pushed to 40! This is just a statistic, but it is one that helps raise money, helps parents hope and dream and perhaps not worry about their child having a deadly disease.

Below is a link to the different drugs in the CF pipeline. Some of these are incredible advancements that should increase the quality of lives of people born with CF. Dr. Beall gave an amazing talk the other night. One thing he made me realize is the future of CF rests with us Adults who have CF! What a novel concept. It is no longer up to the parents to raise money, give money, and ask people for money. It is also up to us. It is no longer dedicated parents, volunteers, and paid employees of the CF foundation responsible for the future of this disease, but for the first time it will be us Adults with CF!! 37!! There are plenty of Doctors, scientists, researchers, CEO's, and lawyers who have CF and are closing in or passed 37! It is up to us to lead this disease into the future and make it a condition that one survives, not dies from. We are proof to those parents who have a child born with CF that anything is possible. So, lets get out there and raise awareness and money! :-) Walk don't run to CFF.org and learn more...

http://www.cff.org/treatments/Pipeline/

-Mitch

The Smallest Things

Hello all,

Well it has been far to long since I last posted. I first wish everyone a happy and of course healthy New Year.

Last Friday was my 6 month mark post transplant!! Things are remarkably different this time around. The new lungs continue to feel incredibly strong. Breathing never being an issue or even really crossing my mind. I battle with some annoying secondary problems still, such as the numbness and pain in my feet, adjusting still to the medications, and some lingering soreness and discomfort still in my chest area. I assume that is somewhat to be expected as I was ripped apart twice
and re-wired shut again. My ribs are a bit mis-aligned
it feels and those chest wall muscles were practically destroyed. They are healing though.

We were able to take that long awaited trip to Costa Rica that Rebecca had reserved nearly two years ago now and the owner of the company was nice enough to postpone until I was ready. We had an amazing time. The country is absolutely gorgeous. Stunning lush mountains, rain and cloud forests, waterfalls, beautiful yet rugged beaches, surfers paradise with a perfect 4-6 foot break every 20 seconds. Multitudes of exotic animals in the wild. We travelled with 3 other families we met there. They all had kids ranging from 5-10 and soon the kids were inseparable. They did everything with us, I was so proud of them. Zip-lining through the cloud forest canopy 100 ft above the ground. White water rafting. Hiking, swimming, tracking animals, etc. An amazing time. I appreciated every second of the trip and was thankful and lucky to be in such an amazing country with my family.

When I was getting ready for my first transplant I had this idealistic and ambitious vision of how it would go. Most people do. After the transplant, I thought my setbacks would subside and I still carried these hopes of being able to accomplish Extraordinary things. For instance, being somewhat of an athlete as a child and young adult, I felt like I wanted to return to form and even excel further. I felt as though the only way to validate my new lease on life was to prove to the world and myself that I could accomplish some amazing feet. Like running a marathon, or doing a mini-triathlon. Well we all know what happened with the first transplant. Staring death in the face and being lucky enough for the conditions to allow a second transplant my outlook has somewhat changed.

I don't need to accomplish anything measurable. Sure it would be nice, and might very well occur, but what I learned is that the greatest accomplishment of all is living and breathing without suffering anymore. It allows me to appreciate the smallest of things this world and universe offer. A smile on a kids face in Costa Rica when we gave him a new soccer ball. Matias sitting next to me on the couch and probably without any thought on his part, putting his arm around me. The smoky breath coming out of my mouth when it was 10 degrees yesterday. Me not wanting the vapors to dissipate as each one made me think about my donor. It was like he was there......

The world is crazy right now, I know of 4 CF friends who have lost their battle in the last month. Nothing is guaranteed. As cliche as it is, all that matters is now. And now is perhaps the smallest yet heaviest thing in this universe.

-Mitch
PS: I have attached another link on the tool bar to right with some of the Costa Rica highlight photos. Maybe a video or two as well Zip-lining. Below is our whole group and awesome guide (Onik) all geared up.