‘Gonna Live My Life’: A New PF News Column That Tells My Story

‘Gonna Live My Life’: A New PF News Column That Tells My Story

At 12:06 a.m. on Dec. 3, 2015, the much-anticipated phone call came. I knew what the call pertained to as soon as I saw the first digits on the phone’s screen. The caller identified himself as a nurse coordinator from Cleveland Clinic’s Transplant Center and then handed the phone over to the head of pulmonology, Dr. Robert Kotloff. The suspense combined with elation was exhausting!

I had been on the transplant list for almost two and a half months with a lung allocation score of 34.99, which is not considered very high. I have rare B-negative blood and my donor needed the same type. Yet doctors assured me I wouldn’t have to wait too long.

Dr. Kotloff told me exactly what I expected: I was being offered a right lung. The donor was considered high-risk because of a previous incarceration. As a former corrections officer, I refused to let this knowledge sway my decision to accept the incredible offer. I have always believed we are made equal.

Dr. Kotloff agreed, believing the donor was my perfect match. Neither of us had antibodies, we had similar body sizes, and we cross-matched successfully. I had a moment to discuss this opportunity with my wife, Rebecca, during which I restated to her everything Dr. Kotloff had said. Rebecca and I agreed that I should accept the offer.

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After telling Dr. Kotloff of our acceptance, he returned the phone to the nurse coordinator, who explained logistics and what would come next. Then, he suggested that I should try to get some rest. Yeah, good luck with that!

Excitement and jubilation soon turned to tears and an enormous release of emotions by both Rebecca and me. Many memories of the past year raced through my mind in that short period between the phone call and celebration. My idiopathic pulmonary fibrosis diagnosis via video-assisted thoracoscopic surgery (VATS) and contracting respiratory syncytial virus shortly after. Drastic increases in supplemental oxygen needs. The rigorous evaluation for transplant qualification and fighting to meet the vital requirement of an under-30 body mass index — I lost over 80 pounds!

The rest of the night consisted of me tossing, turning, and thinking about the upcoming procedure. I had questions for myself and God. What did I do to deserve this awful disease? Why was I chosen for a second chance at life? How did I get to this point in my life? Those questions haven’t been answered, but I believe everyone has their own fate to deal with, and this was mine.

I also could not stop thinking about the man who was about to give me the gift of life. I wondered how he died. Did he suffer? Was there a family who would grieve for him? What made him decide to be a donor? I think about him often even today, almost four years later. After all, this man gave me a second chance at life. I intend to write a letter to his family through the organ procurement organization, but I just don’t how to write it quite yet.

I promised my wife before she went back to bed that I would not call or text anyone until we had another contact from the nurse coordinator. At about 6 a.m., I could not contain myself any longer and began to send texts. I knew I could cut down on my texts if I sent them to a couple of people who would quickly disseminate the information. I was right! Before 7 a.m., I received over 150 congratulatory texts. Rebecca got many as well. The next couple of hours were spent calling, texting, and waiting on another call from my transplant team. The call did come, as did my life-saving surgery.

When I think of all that transpired during the last 12 months, I still find it hard to believe I made it. I could not have undergone this endeavor alone. My friends helped out, people at work made sure I always had oxygen, and my wonderful, beautiful, caring wife exceeded all expectations of what a loving caregiver should exhibit. Her support and strength drove me. The rest was in God’s hands.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
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Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
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10 comments

  1. Jon Sizemore says:

    This is a beautiful courageous testimony of appreciation of Life. First congratulations and next we are all blessed that this transplant happened for you. Yes I’m sad for the loss of life of your donor, but I also know you will spread this appreciation of life all around!

  2. Kathleen M. Decker says:

    Mark, beautifully written, brought tears to my eyes. You are extremely blessed to have such a great woman who has your back! Happy to have you in my life, if only in my chair a few times a year. You bring smiles everywhere you go. Thanks for sharing, Kathy, your Dental Hygienist

  3. Mark Krugman says:

    Congrats to you Mark on your new gift of life hope all is well , I also had left lung transplant a year and a half ago my older brother passed away from ipf I retired at age 62, 6 months later I was diagnosed with this horrific disease, I felt the walls were closing in on me I waited 11 months for my lung at this point my nerves were shot,finally got the call I was waiting for a lung that was a perfect match ,the donor was incarcerated, young, and a non smoker,there was no doubt in my mind that was the lung for me ! the operation was 2 and a half hours, no blood transfusion, or oxygen required, after 8 days I was released, do I believe in miracles you bet I do my daughter gave me my first grandson, it was not my time to go yet I can now watch him grow. God bless and may you lead a long life 👍👍👍

    • Mark Koziol says:

      Thank you Mark, it seems our ipf and transplant stories are eerily similar. I am happy you also received your second chance at life and will be able to see your blessing of a grandson grow into a fine young man. Mark, have you ever considered reaching out to the recipient of the right lung from your donor? Mark, thank you again for sharing your story and may you continue on with excellent health.

  4. Congratulations on your second chance of live. I received mine three and a half years ago and can relate with everything you wrote about and felt. God has a purpose for each and everyone and the most important thing we can do is be Greatfull and give Thanks. Enjoy your new life.

    • Mark Koziol says:

      Hello Marcia, thank you for reading and commenting on my column. I am happy to hear you are doing well. Looks like we received our surgery around the same time. You are so correct, I am grateful for every day I get to wake up. Thank you again. Best wishes. Mark

      • Glenda Rouland says:

        Thank you for this encouraging post I just found out I am going on the list at Sas in the 40’s. I also have B- blood which the doctors have said might work in my favor. I have IPF since 2015 and just developed pulmonary hypertension. Was in total shock when told I was going on the list. Very scared but trying to feel blessed if I get the opportunity

        • Mark Koziol says:

          Thank you Glenda, for reading and commenting on my column. I hope you get your gift of life soon. The B- blood is rare but I guess it puts the odds in our favor. There other factors as well but the blood type is at the top of the list. I can’t tell you not to be scared because this is a major surgery. Get yourself physically and mentally prepared for this. Work on your legs because you are going to need them. They become the most atrophied part of the body. So if you have more muscle before, losing some is not that big of a deal. Best wishes and you one day breath easy. Keep in touch. Mark

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