Friday, December 24, 2010

Happy Holidays and a Healthy New Year!

Here is Luke giving everyone a high Five she is so happy


Hello All,

I want to thank so many people who have privately emailed me, messaged me on facebook, and sent me text messages regarding my last post. I am glad it moved so many people. If inclined, please also post a short little comment in the comments section below. Whether positive or negative, I really don't mind. You all know me by now. It is just this is the only historical record and "journal" I am keeping. It is nice to have people's reactions and comments on here to provide feedback for me, my family, and others just glancing by. In ten years, I want everyone to go back and read this and be able to read everything.

I hope everyone is having a great holiday season and everyone has an incredible year next year. I am signing off for now, as we travel once again on a trip we have had planned now for two years but was obviously postponed due to health. I started to decline very quickly shortly after reserving this eco-family adventure to Costa Rica almost 2 years ago. The company has been so patient with us until my health improved. The doctors gave us the final OK a few weeks ago and re-confirmed this on this past Wednesday. We are off tomorrow!!

Thanks Everyone,

Mitch

Thursday, December 23, 2010

Response received

Hello All,

Well this should be an interesting post. While in Chapel Hill on Wednesday, I was presented with a response to my letter I sent to my donor family after my second transplant. This was forwarded to me through Carolina Donor Services as this process is anonymous until both parties agree to eliminate the third party. I had many mixed emotions. I was eager to read it, nervous, apprehensive, scared. You name it and I probably felt that emotion. I did wait till I left the hospital to find a nice quiet area at one of my favorite places in Chapel Hill to open it up. The parking lot behind Franklin Street near Pepper's pizza. I'm kidding about this place being my favorite, quiet, and nice. But It is where I opened it. I was just to anxious and hungry. I love Peppers pizza.

It was a beautiful thoughtful letter and you could tell throughout how thankful and happy the mother was that she received word from me. Her emotion and sadness for the loss of her son was conveyed throughout and my letter helped her cope. I will not give any details beyond this of the letter however, I decided to share the letter I wrote to the donor family, it is below. I have always tried to be as open and honest about this whole process. I never posted my first letter to the family because I never received a response. I felt not knowing them I would maintain all privacy. So I upheld the same decision for this second transplant. After receiving this response, I felt OK about posting my original letter. If over time I have the chance or desire to communicate with this donor family further and they approve posting their original response, I will.

One thing I want to confess to. I made the decision to withhold the fact that this was my second transplant. I did this for a few reasons. One, I felt opening up the fact I needed a second transplant would have left them with numerous questions, such as, what happened to the first? Why did I need a second one? Will their loved ones lungs work on me? etc. It was important that the specialness and importance of their decision was not compromised by questions at this time. Two, I wanted the letter to not be distracted with all the medical details I would have felt necessary to disclose on why the second set was needed. I wanted the letter to focus on my thankfulness, extreme gratitude, and how it changed my life. So, I took elements of my life leading up to my first transplant 10 months earlier, and the short 1 month before the second transplant when my health became so incredibly critical and combined the two. I do plan on my follow-up letter to explain to the family that this was my second transplant and just how critical it was and how incredibly different and positive it has been compared to the first. With that said, here is the letter I wrote to the family of Clayton who was 19 years old and died way before his time....


11/21/2010
Dear Donor Family,

Thank You. On July 21, 2010 our lives changed forever. I am the recipient of your family member’s lungs. Without this remarkable gift and complete selfless act of generosity I would not be alive today. There are no words possible that I will be able to convey to you that would quell your grief or make the pain of losing someone special subside. I cannot fathom what your family has and is enduring. However, I can tell you that your loved one is a true hero. One of indescribable proportions. He/She saved the life of a father, devout husband, son, grandson, brother, friend, and human being from dying from Cystic Fibrosis.

My name is Mitch, and I was diagnosed with Cystic Fibrosis at birth. CF is a genetic disease that mainly affects the lungs and digestive system. Despite a relatively healthy childhood, my lungs started to deteriorate in my teens. I am now 37. I was able to live a fairly normal life though while battling this disease. The last 5-10 years my health significantly deteriorated. It was a slow progression though with steady trips to the hospital however, I was able to progress in life somewhat normally, ie. I married my wife Rebecca, who I met in college over 15 years ago now and we have two beautiful twin seven year old boys, who are my inspiration, I have a career, etc. Although a struggle, I always maintained the mentality that I could conquer this disease. Well, last spring and specifically into the summer my health took a quick and sudden downturn. Transplant had been discussed years ago, but I remained too healthy. Over the continued years, I was on oxygen, I had suffered numerous infections, collapsed lungs, and bleeding into my lungs. I never would give up. Finally, knowing without a transplant I was going to die, I was listed on July 13th. Transplant was my only option. I continued to decline extremely rapidly, and on the night of July 20th, on numerous breathing machines and the maximum amount of oxygen, hardly able to move anymore I turned to my wife and told her, “I don't think I can go on too much longer”. Just uttering those words was extremely hard for someone that had fought this disease my whole life. My wife had a simple answer. 'It will be ok.' I made it through the night, with that comfort of knowing everything was ok. At 8am, my nurse came running into my room and told me and my family that they believed a donor was available. My life was saved.

I don't remember much immediately after the transplant, but I wanted to share one story with you. The procedure, according to my incredible surgeon, went smoothly and he told my wife he put a beautifully perfect set of new lungs into my body after spending hours removing my current scarred lungs. The operation finished at 1am on the 22nd, I did have some small complications requiring some more surgery that day to stop bleeding, but by 8am on the 23rd, I was fairly coherent and strong enough for them to pull my breathing tube. This was an incredibly fast time; some people remain on the vent for days. When they pulled the breathing tube I remember taking a huge deep breath in with my own power. Something I had not done for close to 10 years! It was as if these new lungs had awakened and my whole body relaxed. It was indescribable. I felt free, alive, thankful, and was ready for the process of recovery. This perhaps is one of the hardest things because lung transplant is one of the most difficult types of transplant to perform and really hard on one’s body. However, the powerful essence of that first breath, on my own, made me feel like recovery would be easy. I was motivated. I spent the next 3 weeks in the hospital slowly healing, walking, and improving. Each day walking more, the lungs wanting to breathe deeper and deeper. Everyday though, I think about my donor and his/her spirit. It is impossible not to as it is my breath. It continually motivates me to succeed and continue to recover. I have had zero bouts of rejection, which is rare and a good scenario. I have had other complications, however my doctors are confident that things will continue to improve. I continue with Rehabilitation trying to get stronger every day. I will never give up.

I wanted to write to you all ever since I first received my transplant, but at the same time felt like I needed time to recover and regroup. The recovery process is difficult and I battle with setbacks every few weeks, but I am very inspired and motivated to succeed. The lungs in my body feel strong and I can already do so many things that I could not do years ago. I want to personally thank you all from the deepest parts of my being for the gift of life that was provided to me. Just as I won't be able to understand the grief of the loss you experienced, I cannot begin to describe the amount of love, happiness, and gratitude my family and friends feel for my life continuing. I hope you all can share in some of this joy that your loved one saved a life and is a hero to so many people.

If you all are comfortable sharing, I would like to know a little about the type of person your loved one was who donated their lungs to me. What they enjoyed to do, or their hobbies, interests etc. I don't want any of my life to be wasted given this second chance and if I can honor their memory in any way by knowing them, or contributing to their passions or interests, it will help me in a way say thank you and carry on their spirit not only with my breath but also in my actions.

With deepest regards and love,
Mitch
Double-lung Transplant 07/21/2010 due to end-stage Cystic Fibrosis and OB


Friday, December 10, 2010

Officially released


Here is a photo taken while Visiting "Pops" and Nancy, Rebecca's Dad and friend

Hello All,

December 1st, was our last day in Chapel Hill. We moved just about all of our things back to Maryland over thanksgiving. We went back to Maryland for the holiday and enjoyed another incredible Thanksgiving dinner at my Aunt Harriet's home. It was great to see everyone. We went back to Chapel Hill for a few days and for me to have another clinic appointment.

Everything went well. My breathing tests continue to slowly improve. Which is the best way for them to go. Not to go too much into the numbers, as it would cause for more detailed explanation, but before tranpslant one of the main numbers they look at is your FEV1. This is how forcefully one can blow out air in one second after breathing in their deepest breath. It is a good measure of how strong the lungs are, how diseased they may be due to narrowing or blockage, and also capacity. Well before transplant my FEV1 had dipped to 18% on December 1st, they were 63%. Hopefully they will continue to go up to the 80s or 90s. Who knows. Lung size plays a small part. Because the number is based on someone my height etc. If donor was shorter or smaller then the percentage is skewed down a bit.
I also continue to feel very good from a breathing standpoint. I raced Matias about 200 yards today and when we stopped I barely felt like I was winded. I do have some soreness still along my ribcage area mid chest. Also my feet continue to bother me. But these are issues that don't slow me down at all.

We are taking the next few weeks to do a lot of travelling! We are currently in Florida visiting many friends and family. We spent a week in Key West as well. We rode our bikes all through the old city and it was a breeze. I have another follow up in Chapel Hill on the 22nd.
The plan is to be back to work the first of the year. I hope everyone who is following this blog had a great thanksgiving and is ready for the new year. I know I am.
-Mitch