3 Years Post Transplant: A Daughter’s Perspective

Filed in Boomer, Midlife, Transplant. An Unexpected Journey by on September 18, 2016 28 Comments

organ donor, donate life, transplantIt has been 3 years since Randy, my husband, received the last minute gift of a double lung transplant. Randy had been on life support for almost 2 weeks, and time was running out. His lungs had failed, but no one really knew why (after the transplant at UT Southwestern Transplant Center it was determined that Randy had Idiopathic Pulmonary Fibrosis). The past 3 years, post transplant, have been full. Full of fear, sorrow, hope, joy, and relief. I think we have run the gamut of emotion, and it has been a true roller coaster. My daughter, Alexandra, sent this to me the other day, and it brought tears to both myself and Randy. Our family of four has been very close, and the emotional devastation my children felt was heartbreaking for me to witness. Her memories remind us all that miracles DO happen.

lung transplant, transplants, an unexpected journey

Randy, Alexandra and Wes in Cozumel, 2008.

By Alexandra Minton

My dad loves the sun. He always has and that’s a memory I have of him while I was growing up. He enjoys spending time outdoors sunbathing, scuba diving, and feeling the warmth of the sun on his skin. In August 2013, my dad was in the ICU at St. Paul’s at University of Texas Southwestern University Hospital. It was August and September in Texas as this occurred and there’s no lack of sun that time of year. I felt horribly hopeless and guilty as I walked out each time I visited and felt the sun on my skin, something my Dad loves feeling. I wondered if he’d ever be able to leave the hospital and feel the warmth of the sun on his skin again. That thought was simply terrifying to me and nearly too much to bear and I cried, sometimes uncontrollably, as I left the hospital.

lung transplant, transplants, an unexpected journey

Randy and our beautiful daughter, Alexandra

My memory of this period of time is somewhat hazy but as time passes, I can look back and see things a little more clearly than before. At the time, I lived in a daze. I felt trapped and could only move one foot in front of the other, one day at a time. Dealing with illness was not something new to me. My father had back surgery when I was a toddler, my grandfather battled pancreatic cancer, my mother had reconstructive spinal surgery while I was in middle school, my grandmother slowly passed with a brain tumor, my other grandmother died of emphysema 6 weeks before my dad went into the hospital. Dealing with illness, listening to medical decisions being made and attending funerals of those I loved was a part of life that I accepted. But my father’s illness hit me hard, as it hit our entire family hard. He was perfectly healthy until one day, when he wasn’t. One day he had to be rushed to the hospital and a few days later we found ourselves listening to the doctor at UT Southwestern say that my dad had a disease called Idiopathic Pulmonary Fibrosis and the only way to save his life was a lung transplant. Hearing that was absolutely devastating and cause for hope at the same time. My dad could have a chance if he received a double lung transplant but if he didn’t have that chance, I would watch my father die.

Something remarkable about being in a situation like this is that you end up learning about yourself, your capabilities and your strength. I quickly figured out what my initial reaction to hearing upsetting news is. I become wildly hysterical and cry uncontrollably. I tried fighting it but eventually gave in and let the process flow. It doesn’t last long and then I move on to calming down and looking at the big picture and what it means. I learned that I had the strength and capability to put others before myself. I tried to stay strong for my mom even though she was our rock throughout this time and is arguably the strongest member of our family. I put on a good face in front of my dad so I wouldn’t cause him to get upset. I can’t even imagine what he was dealing with and what he had to process as he received this news. He carried on as his usual humor and sarcastic-filled self while dealing with a grim prognosis. I will always remember that, appreciate it and look up to my father for his behavior during that time.

pulmonary fibrosis, lung transplant, unexpected journey

After he was approved for a lung transplant and was number 1 on the list, all we could do was wait. The days seemed excruciatingly long and unbelievably short at the same time. Day time was spent at work and at the hosptial. Friends and family flew in from all over, stopped by, and brought snacks. I kept my closest friends up to date and they each checked in on me on a regular basis. It was so helpful for me to process what was happening by telling them what was happening. A few days went by with no news on organs and then suddenly my dad crashed and had to be taken into emergency surgery to undergo a procedure that would put him on ECMO, extracorporeal membrane oxygenation. ECMO provides cardiac and respiratory support to people whose heart and lungs are unable to provide an adequate amount of oxygen to sustain life. From this point on, he would remain in a drug induced coma. There would be no more conversing with him, hearing his voice, laughing with him.

At that point, I was working as a re-toucher in the art department of an auction house and was able to spend the first half of the day at my office and the second half of the day working from the hospital. I sat on the floor in the waiting room with my laptop on a coffee table, next to my mom, who was always there. I would periodically go in to talk to him. Sometimes I would go in and play a couple of songs we both liked. One of the last days before he was transplanted, I played him Daughters by John Mayer. It has always been a special song for us and we planned to dance to it at my wedding one day. In case we never got the opportunity, I wanted to listen to it with him one more time. I sobbed quietly for 3 minutes and 58 seconds.

 His 57th birthday came. I decorated the outside of his glass door in the ICU. My family and I joked that would hate the pageantry and the tacky decor. It was hard to see this man who raised me, loved me unconditionally and who was always there for me, my daddy whom I admired, struggling to live. The tubes and cords keeping him alive were too many to count. Machinery was doing his breathing and as each day went by with no word on lungs, I struggled more and more. Every day I would wake up, I would tell myself, today is the day he will get new lungs.
pulmonary fibrosis, lung transplant, unexpected journey

Mom and Dad in Zale Lipshy Rehab.

I don’t know why I didn’t consider the most  obvious realization of the situation before this point. I spent time researching lung transplants, survival rates, what to expect, changes that needed to be made. I asked his nurses, who were there in his room 24/7, questions about the equipment keeping him alive, their experiences with transplants and organ transplants in general. One morning after praying for lungs, the realization hit me that the lungs my father would receive would be from someone else, someone who had passed away and whose family would be feeling even worse than I did at this moment. When the most obvious part of this whole situation finally hit me, I felt horribly guilty and selfish and was horrified to look on what my hopes meant for someone else. I collapsed on the floor of my new apartment, curled into a ball and cried. I would not wish this pain on anyone. 

After almost two weeks, my mother called me in the middle of the night to tell me to be at the hospital at 5 am. A match had been made and my dads double lung transplant was scheduled for 6am. I arrived at 5am, said good luck to my dad and squeezed his hand as he was wheeled away for prep. As we were leaving the ICU, I noticed that it was quite busy. In the room next to my father was a young man with his family. I later learned that that young man had a heart transplant that morning. Passing by the nurses station, I overheard that every transplant operating room was booked that morning. Could it be that one person was contributing to giving all the transplant patients this morning a chance to fight to survive? The answer was yes. I prayed for the donor’s family as they must be experiencing unimaginable grief.

pulmonary fibrosis, lung transplant, unexpected journey

He was still unable to walk when he came home.

The surgery took nearly all day. We waited patiently and passed the time in silence and with stories. My family and I were given periodic updates. Lungs are here. Left lung is out. New left lung is in. He’s doing well. Right lung out. New right lung is in. He’s being closed up. He made it through the surgery. What a blessing. His recovery was unlike anything I’d ever seen. It was slow. Full of baby steps. Once he woke up and was cognizant, about a week after the operation, he still had his breathing tube in. His behavior during that time was difficult to say the least. My family has a dark sense of humor and my brother and I lovingly referred to our dad as “Tube Dad” during that time. My brother devised a system of trying to communicate with my dad since he was unable to speak or move due to atrophy. “Tube Dad” was relentless, frustrated and mean! Dad got stronger and was moved to a rehab facility. He went into the hospital in early August and was able to leave on Halloween.  

Today, 3 years later, my father just received an A+ at his annual check up. We are so incredibly blessed and lucky to have him in our lives. He just turned 60. Last year, he and I danced to Daughters at my wedding. 

pulmonary fibrosis, lung transplant, unexpected journey

We danced together at my wedding to Daughters, just like we always planned.

 
I feel so much appreciation and love when I see my dad. And it all comes down to the donor. The person who made the choice to become an organ donor. My father has decided to not reach out to the family of this person and that is his choice and I respect his choice. I do, however, want to tell the family that I am so grateful to have my dad here and it is because their loved one became an organ donor knowing that possibly, part of him or her, could go on to help others. I think of the donor at every get together and celebration and say thank you to the donor and their family. I’m very sorry for your loss and hope some comfort can be taken knowing that your loved one’s choice gave hope and life to numerous people. That’s the greatest gift anyone could ever give. Thank you.  

I am forever grateful to the donor, the donor’s family, my friends and family who were there for myself and my family throughout and to the staff at UT Southwestern, who were knowledgable, trustworthy and performed to the best of their abilities at all times. Thank you.

lung transplant, unexpected journey

Randy with two of the most amazing doctors one could ever meet: Srinvivas Bollenini and Vaidehi Kaza. Thank you also to Dr Fernando Torres and Dr DiMaio and Dr Wait.

pulmonary fibrosis, lung transplant, unexpected journey

Celebrating Thanksgiving and Randy’s first walk alone after his double lung transplant

Please be an organ donor! And for more information on Pulmonary Fibrosis, take a look at PF Warriors of North Texas.

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About the Author ()

I am an avid scuba diver, underwater photographer, amateur historian; interested in all people and cultures. For me, the unexpected is usually the norm! My motto? I am an Empty Nester who likes to Renew, Revamp, and Reinvent Life! Contact me at travelswithtam@gmail.com

Comments (28)

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  1. Wow! My eyes are tearing up reading this. What an ordeal and so glad it had a happy ending. Organ donation is so important. Thank your daughter for such a beautiful post.
    Rebecca Forstadt Olkowski recently posted…Homemade Bone Broth Chicken Soup with VegetablesMy Profile

  2. Sue says:

    Such a beautiful young woman and your family has certainly been through a roller coaster ride. I teared up when I saw the photo of your daughter dancing with Randy at her wedding. Life can be tough but the love of family will always get you through. Bless you all and I wish you every happiness.

  3. barbara free says:

    ,,,where’s the kleenex, I need one….I mean, several. How heart warming and loving of Alexandra to write that. What she shared was so very real and I know will touch the heart of everyone who reads it. I can’t imagine how proud you and Randy are in having raised such a kind daughter. I bet Randy has cried of few tears over reading this. Tell her I said thank you for sharing that.

    • Tam Warner says:

      Oh yes, Randy was very moved and shed quite a few tears. We tend to concentrate on now, so when he hears/reads how emotionally distressing this was it makes him feel grateful to have so much love in his life. And yes, we are very proud of her, and of Wes, they both have a lot of compassion.

  4. What a beautiful post, a wonderful family and an inspirational story. My hat is off to you all for the way you have taken this journey.

  5. Oh, what a beautiful post and a great reminder of why everyone should be an organ donor. It made me teary – both her words and the photos. It’s obvious how much your daughter loves her dad. If love could cure everything, he would be so healthy!
    Lois Alter Mark recently posted…“the cocktail hour” at north coast repMy Profile

  6. roz warren says:

    Amazing and very very moving. (And it makes me very happy that I’m already an organ donor.) Your daughter has a big heart and is a terrific writer!

    • Tam Warner says:

      We are happy to hear that you are a donor! It is so important, and can save many lives! And I will let her know you like her writing!

      • Roz Warren says:

        There is no reason NOT to be an organ donor. I’m going to save this post to give to the next person who offers some lame excuse for not doing it.

        • Tam Warner says:

          Thank you. I was on a dive boat with a guy, a pharmacist, who said he wasn’t a donor because he had seen someone being embalmed….after meeting me, he became a donor. It isn’t as though you are going to be there to see the organs harvested! That was a busy morning, Randy received lungs, someone received a heart, a liver and kidneys. One person saved all these lives!

  7. Estelle says:

    Such a beautiful post full of love and hope and promise. Your daughter’s love for her dad has such depth. And you have been his rock throughout this journey.

  8. The gift of life is precious. Just like this post!

  9. Susan Schweikert says:

    Wow what a read! I see the gift for language and love lives in your family.

  10. Leanne says:

    what a wonderful tribute to Randy – who must be quite an amazing man – and a great dad. I’m so glad you got that father and daughter wedding dance together – it would have been the best moment ever I’m sure x

  11. So Beautiful! Thank you Alexandra for sharing your deepest feelings so beautifully. I will never hear Daughters again without thinking of you and your Dad and family. Love is the strongest emotion and how wonderful for you to be surrounded and strengthened by it. Your Mom and brother are amazing too. I feel honored to know your story! Yay Randy!

    • Tam Warner says:

      I will make sure Ally sees your comment Suzanne! I have been hoping for another young woman’s mother, who was on ECMO this week, waiting, but she passed away yesterday. Another reminder of how very, very lucky we are. xoxo

  12. Your family’s story is truly inspiring, Tam. Alexandra has shared it so beautifully. May your love for each other keep growing too.
    I had to smile looking at the doctors’ picture – seems like both of them come from the very part of India I live in. To think that our world is so small.

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