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

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

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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
  • Taking my son for a haircut
  • Cooking dinner
  • Tummy time
  • First dinner out at restaurant
  • Introducing solids
  • My son’s first soccer practice
  • Playing with my kids
  • My daughter’s first dentist appointment
  • My first solo trip to the children’s museum with the kids
  • Regaining strength
  • OT incorporating my baby into workouts
  • Moving up to walks around the neighborhood
  • My first cardiac rehab schedule
  • I would guess the average age to be around 60 at cardiac rehab
  • I bought a bike after I finished cardiac rehab to continue a routine of working out
  • 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
  • Board games were always the best at helping me forget – Winning a game of 7 Wonders Duel
  • Board games with my husband’s family
  • Local Fun
  • Tulip Festival
  • The kids’ first professional baseball game
  • First Year Post-Transplant - Visiting Leavenworth
    Visiting Leavenworth
  • First Year Post-Transplant - Museum of Flight
    Museum of Flight
  • Vacations
  • Disney World Trip 5 months post-transplant
  • Sitting on the ground is where you would most likely see me while waiting in lines
  • Rocking the Frogg Togg to help combat the heat
  • So glad I got to experience this trip with my kids
  • First haircut at Disney World
  • My son’s first roller coaster
  • Hotel pool break day midway through the Disney World trip
  • Visited one park each day. Got there before the park opened and left at close.
  • I tired out just as quickly as the toddlers each day
  • On the ferry to the San Juan Islands
  • Sunset on the beach in the San Juan Islands
  • Exploring the North Cascades National Park
  • My amazing husband packing both kids on our hikes
  • Trillium Lake with Mount Hood in the background
  • Pilot Butte in Bend, OR
  • Obsidian Flow Trail
  • Toketee Falls
  • Oregon Coast Aquarium
  • Skipping the buffet-style free cheese samples at the Tillamook Cheese Factory. Their ice cream, however, is awesome!
  • Big Tree in the Redwoods National Park
  • Monterey Bay Aquarium
  • Golden Gate Bridge
  • First Year Post-Transplant - Disneyland
    Disneyland
  • Splash Mountain
  • Our family had a great time on all of our trips
  • Spreading PPCM, organ donation and heart health awareness
  • Celebrating my first Go Red For Women Day days after my release from the hospital
  • My story featured in my hometown’s newspaper
  • Celebrating Blue & Green Day for Organ Donation awareness
  • Donation Celebration Luncheon with LifeCenter Northwest
  • Sharing my story at an event
  • Heart Walk in Seattle
  • Family time
  • My 31st birthday
  • Hockey and Costco cheesecake for our 5th wedding anniversary
  • My parents stayed with us until March and then came back for a visit in May
  • My daughter’s baptism
  • Pike Place Market in Seattle with a visiting friend
  • First Year Post-Transplant - 3rd birthday
    My son’s 3rd birthday
  • First Year Post-Transplant - Breadsticks with cheese in Indiana
    Hey Hoosiers! Did you know the only place you can get breadsticks with cheese is in Indiana? Always my first stop when I’m in town.
  • First Year Post-Transplant - Indianapolis Children's Museum of Indianapolis
    We try to visit the Indianapolis Children’s Museum with the grandparents during each visit
  • First Year Post-Transplant - Birthday Cakes
    The first of many birthday cakes I made in Indiana for the kids’ birthdays
  • First Year Post-Transplant - Jurassic Quest
    Visiting Jurassic Quest at the Indiana Fairgrounds
  • First Year Post-Transplant - IU Basketball Game
    We snuck in a visit to our alumni IU for a basketball game
  • First Year Post-Transplant - Ohio State vs Michigan Game
    Ohio State vs Michigan Game with my husband’s family
  • First Year Post-Transplant - Ohio State won!
    Ohio State won!
  • First Year Post-Transplant - Strong Bonds event
    Strong Bonds event with the Army in Portland
  • First Year Post-Transplant - Strong Bonds Trailblazers game
    Strong Bonds included free tickets to a Trailblazers game and meet and greet with Miles Leonard
  • Holidays and traditions
  • Easter egg hunts
  • Dying Easter eggs
  • Mother’s Day trip to the children’s museum
  • Celebrating the 4th of July on post
  • Halloween events
  • Thanksgiving with family in Indiana
  • Chopping down our Christmas tree
  • Decorating the tree
  • Christmas tree picture with cooperative children 🙂
  • Seeing Santa at a military event
  • Enchant Christmas Seattle
  • Pictures with Santa at Enchant
  • New tradition this year – gingerbread house
  • Well…gingerbread train
  • Fantasy Lights
  • UWMC Transplant Holiday Party (recognize Santa?)
  • Christmas PJs
  • Celebrating NYE

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
  • “Close enough” – One day before my 12 weeks of sternal precautions were up and I finally got to pick up my baby
  • Pain
  • Lots of pain. Especially in my back. The heating pad was my best friend.
  • Hair loss
  • If you check out my hairline you can see where it is thinning. I would lose handfuls of hair every time I washed it.
  • About as bad as it got before it started growing back
  • 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
  • Wearing a mask in my own home is one of my least favorite things to do but a must when my kids are sick
  • 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
  • Visiting the cherry blossoms between clinic and biopsy appointments
  • Bandage on neck from right heart cath and biopsy
  • I had 13 right heart cath and biopsies during my first year post-transplant
  • Multitasking Mom Mode
  • My son spending his 3rd birthday at the hospital while I had appointments
  • 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
  • I started feeling the effects of having a toxic level of tacrolimus (immonosuppresive medication) on May 23rd. This is the same day my son had a root canal on a tooth he chipped so he was out of it and only wanted me
  • The high level was discovered on the 25th and I was admitted that night back to UWMC
  • My meds were adjusted and by the time I was actually admitted, I felt fine.
  • I was discharged on the 28th which was lucky because I had a flight (first post-transplant)back to Indiana on the 29th.
  • My first flights post-transplant
  • My first flight was 5 months post-transplant. It started with the worst migraine of my life which led to me taking pain medication to try to make it better that then led to me throwing up. When I first got to Indiana I couldn’t even walk out of the airport. They had to get a wheelchair and wheel me out.
  • Babies don’t like their mommies in masks
  • 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
  • During the first year post-transplant your medications are changing often. These changes require regular blood draws. I was going multiple times a week to my local clinic.
  • 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.

499 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 beautiful❤

    Reply

    • 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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