Post-Transplant Life – The Highs & Lows of My First Year

It took me 16 posts to recap less than 3 months spent in the hospital. Admittedly, I was a bit long-winded but I found sinking into the details of my ordeal both cathartic and hopefully helpful to others who may stumble upon my blog and are dealing with similar issues. For my one year post-transplant wrap up, however, I want to keep things concise.

I’m tired of living in the past and don’t want it to lay so heavily on me anymore. I’m ready to move forward and not think about it all so deeply. One of my nurses once told me that I would look back on my hospital stay and it would seem like a bad nightmare. It really, truly does. It took my whole first year post-transplant (and maybe then some) to get over it.

The first year after an organ transplant is really important. It can set the tone for your life with this new gift. Rejection is most likely to happen during your first year although it could happen at any time. Post-transplant your team is constantly switching up medications, requiring numerous trips to the clinic for blood draws. There is pain. For me, there was PTSD and fear. There was hair loss. There was grief.

Looking back on my first year post-transplant, I’m pretty surprised by all that I did. This year was probably busier than many I had when I was completely healthy. It wasn’t easy to do all of these things, but I am glad that I pushed myself because now I know what I am capable of.

Who doesn’t love bulleted lists with pictures? Without further adieu, here are the highs and lows of my first year post-transplant.

The Highs

  • Doing normal things
  • Regaining strength
  • Finding moments that made me forget about my heart transplant
    • Things I didn’t have pictures of:
      • My husband reading me the entire collection of Harry Potter books
      • Reading on my own
      • Binge-watching TV
  • Local Fun
  • First Year Post-Transplant - Visiting Leavenworth
  • First Year Post-Transplant - Museum of Flight
  • Vacations
  • First Year Post-Transplant - Disneyland
  • Spreading PPCM, organ donation and heart health awareness
  • Family time
  • First Year Post-Transplant - 3rd birthday
  • First Year Post-Transplant - Breadsticks with cheese in Indiana
  • First Year Post-Transplant - Indianapolis Children's Museum of Indianapolis
  • First Year Post-Transplant - Birthday Cakes
  • First Year Post-Transplant - Jurassic Quest
  • First Year Post-Transplant - IU Basketball Game
  • First Year Post-Transplant - Ohio State vs Michigan Game
  • First Year Post-Transplant - Ohio State won!
  • First Year Post-Transplant - Strong Bonds event
  • First Year Post-Transplant - Strong Bonds Trailblazers game
  • Holidays and traditions

The Lows

  • Regaining my strength
    • After being discharged from the hospital I was still unable to:
      • lift my head without assistance
      • get off the couch without a foam pad
      • use the bathroom without a toilet riser
      • walk long distances without a walker
  • Adjusting to sternal precautions
  • Pain
  • Hair loss
  • Sick kids
    • Having to deal with the kids getting sick for the first time less than a month after I got home from the hospital post-transplant was difficult
  • Magnesium
    • Because…diarrhea
  • Inability to determine temperatures
    • For the first several months post-transplant, my hand and body would register the same temperature differently. This added extra trouble when making sure my kids baths were an appropriate temperature.
  • Biopsies
  • Needing other people to help take care of my kids
    • We had three different nannies over the course of a few months before I was able to start taking care of the kids by myself again
  • Rehospitalized
  • My first flights post-transplant
  • Caffeine addiction
    • Despite having very little coffee in the hospital and pre-transplant life only having a cup of coffee each morning (and no other caffeinated drinks ever), I have somehow come out of all of this with an addiction to caffeine. Instead of before where I mainly enjoyed a cup of coffee each morning or used it to help wake me up, I now HAVE to drink coffee or I will have to deal with withdrawal that leads to headaches so bad I am rendered an immobile and vomiting mess. So, if you ever want to send me a gift, Starbucks gift cards are just my size.
  • Orlando heat in June
    • I had a great time on our trip to Disney World but I would be lying if I said there weren’t moments when I struggled. I basically can’t do heat anymore. Completely wipes me out.
  • Blood Draws
  • Hair Regrowth
    • My hair eventually started growing back and that is a good thing but then I was left with multiple lengths of hair I couldn’t do anything with
  • First bad illness – Parainfluenza and CMV
    • I was diagnosed with parainfluenza a little bit after we got home from our California trip. Parainfluenza cannot be prevented by the flu vaccine and it is typically children that get it. My guess is that I got it at Disneyland. CMV just piggybacked on my parainfluenza illness. I wasn’t hospitalized but wasn’t well enough to care for my children so I begged my mom to come out and help for a few days.
  • Dapsone
    • After switching my antibiotic from Bactrim to Dapsone, I became severely anemic to the point of almost needing a blood transfusion. No one seemed too concerned about but I eventually was able to talk to my ARNP at the Heart Walk and she was able to get the ball rolling on getting me off Dapsone and back on Bactrim.
  • Left heart cath – Jan 8
    • It was initially fine but a few days after, I had extreme 9 out of 10 pain in my left forearm. It eventually remedied itself but it was not fun.

So, where am I at now? Who am I? Essentially the same person I guess. I’ve got some new parts and scars that come with an interesting story. Nowadays I don’t dwell on what was or what I had planned. I don’t like to plan for the distant future. I’m enjoying now because I don’t know how much of now I have left.

The average life expectancy for a transplanted heart is about 10 years. At my hospital, the average is 17 years. I intend to live much longer than that but, who knows. Maybe by the time I need another heart, science will be able to use my own stem cells to make my very own heart and I wouldn’t have to fear rejection. Could there be a day when I no longer need the immunosuppression medications that makes me susceptible to death from a cold?

I don’t know and I don’t worry about it. I do what I can to keep myself healthy as all of us should. You can never comprehend what it feels like to lose your health until it is taken from you. I miss how carefree life was not worrying about taking medications on time, taking my vitals twice a day, or having to ask about things as simple as if the watermelon was cleaned properly before it was cut (hardly anyone does). I hope you appreciate life to the best of your ability and, if you have read my story, can see how easily your health can be ripped away.

All in all, the thing I find most surprising coming out of this first year post-transplant is how grateful I am. If you would have asked me how I would have reacted going into heart failure after my pregnancy and having to get a heart transplant, I would have assumed I would have turned into a very depressed and bitter person. That isn’t the case for me at all. I am grateful for so many things and try not to let silly little things damper my mood.

Although I took the hard way, I think I may have come out of this a better, happier person.

353 thoughts on “Post-Transplant Life – The Highs & Lows of My First Year”

  1. I love that you shared your story. I too had ppcm after giving birth to my son. 2 months later they told me I had ppcm and needed a heart transplant. I was shocked! I can relate alot to your highs and lows. It’s nice to see someone going thru similar things.(although I dont wish this on anyone). Good luck to you and your family! Your family is beautifulÔŁĄ

    • Thanks, Sara! It isn’t easy finding stories like ours but I know there are many out there. It is nice to connect with others so we all don’t have to feel so alone in this.

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