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....

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,
Double-lung Transplant 07/21/2010 due to end-stage Cystic Fibrosis and OB


Lynn said...

Thanks for taking the time to share this touching story. I check in every day on your blog. As I am not on Facebook, this is the only news I get. Hope you are enjoying your travels and getting stronger each day. Love, Lynn

Anonymous said...

Dear Mitch, That was a beautiful story. I think you really did make a difference in the lives of Clayton's family. Good Luck Always and Happy New Year!!! I miss you. Lois

Anonymous said...

Mitch, thank you for sharing this touching story. We are all so thankful to Clayton and his family and touched by their generous gift. Our thoughts and prayers go out to his family as well. I mourn their loss and marvel at our gift and am so thankful. Love you all. Hope this year is a beautiful and healthy year for you. Love mom

Joan said...

Hi Mitch, Seems like such a wonderful connection to be able to talk to the family of the young man who donated his lungs to you. Such courage on the Mom's part to be able to give you the chance to be grateful and so loving on your part to try to let her know how much you care about her pain and your will to make the best of her son's lungs. Great letter. Thanks for sharing. Love, Joan.

Anonymous said...

Absolutely beautiful letter, Mitch. So, so happy for you. Have a wonderful time in Costa Rica!
Jenny and Pete

lulu said...

Wow! This really is such a lovely kind letter to your donor family. I have had a single lung transplant and found it also important to write a letter. I hope your new lungs are enabling you to do many fun things for yourself and your family :-)