The week before thanksgiving since my transplant has been hard for me. A lot of emotions coming to the surface. I think most of it comes from the fact that Thanksgiving was the first major holiday we celebrated after my Tx in 2020. I vividly remember that our big outing that week was to take our boxes to the recycling center and on the way there, tears just flowed down my face. All the emotions I had been bottling up for the last 6 weeks that year, came to the surface and it was the first time I cried for my donor. I cried for what their family was missing, what they were missing and what gift they had given. I remember there was a soccer game playing on the field adjacent to the the recycling center and watching them thinking, would my new heart allow me to get out there and play again. Did my donor play? All these questions about the person behind the heart I received, that I still know nothing about.

And each year since then, its almost like thanksgiving 2020 has been the benchmark to compare things to. That first year I walked a 5k thanksgiving day – this year, I’m trying to rebuild my stamina by walking the girls around the neighborhood most days. In 2020, I was still in physical pain from surgery. Now that pain has subsided, only to be left with a different type of Chronic pain each day. I was getting weekly labs to watch my tacro levels and my kidneys, and today its the same. That year, I was riding the high of transplant, in such a state of gratitude that the effects of another traumatic event in my life hadn’t kicked in yet. Now its managing anxiety, depression & PTSD diagnosis – never knowing when or what will trigger me. Back then, it was such restful nights, still in the post-operative period, where pure exhaustion knocked me out. Now its endless nights of insomnia (thanks Tx Meds) and not falling asleep some nights or going to sleep at 4/5am. Instead of losing the weight I wanted to- I gained weight but because of life sustaining medications that we fought really hard to find the right ones because I learned to advocate for myself until someone listened.

As I was thinking about all of that this week, I was stuck in this place of comparison and I wasn’t happy about it. It robbed me of joy. I found myself comparing what other people were doing as we continue to isolate for my safety. I was also comparing the progress, I don’t feel I’ve made, which if you have ever experienced makes you feel like a failure. I also got trapped in this feeling of being a burden. Mom had to go into work this week for some big meetings (#masked), and we still had to figure out how to get my labs done, because I haven’t gotten comfortable driving much since my transplant due to never knowing when a symptom/side effect will hit. I thought I had gotten over that feeling. Its mostly caused by the medical trauma of the past 7 years, where Doctors would become so frustrated with my case and not making progress, I felt like a burden, when things never worked.

Overall, we have a lot to be thankful for. I am still here, thanks to a gift by a total stranger and my ultimate hero. I am capable of so many things, I couldn’t do before my transplant. We have learned to lean on each other and the people that have remained at our side through it all. We have two goofball dogs that make us laugh on good days and bad. We have a faith that Hope does win in the end. We have a warm home, food on our tables, clothes on our back. Could we get stuck in this place of comparing our lives to others around us? Sure. Would we love a life that isn’t full of so many ups and downs? Absolutely. But God has given us everything we have needed and continues to need to sustain us.

Don’t let comparison, rob your joy. If you’d like an update on how things have been going, read on…

😷 We had a little rona/flu scare. My PCP wanted me tested after I caught the crud again for the last 10 days. Thankfully, all was negative, but I have to say, sometimes being immune compromised just really stinks. I likely picked it up sitting in the hospital lab waiting room last week. Thankfully, it appears I am on the tail-end of it and hopefully feeling good for turkey day.

As you may remember, I wore a heart monitor for 10 days, after starting to experience palpitations, that were abnormal. As a cardiac patient, I know palpitations but these were different…

♥️ My heart monitor data came back and I unfortunately had some arrhythmias that are not benign. While some of the palpitations were just premature or extra beats in the upper chambers of the heart, some of the palpitations were runs of SVT or supraventricular tachycardia. At rest, my heart rate was 203. 😬

❤️‍🩹Arrhythmias are not uncommon after Transplant.. Treatments range from beta blockers, ablations to a pacemaker. Right now, the Tx team has decided to watch and monitor and if they become more frequent, we will move on to some medication changes. In the mean time the doc has asked me to wear my Apple Watch and capture an EKG, anytime I have them.

🩸 One day I hope to be off the weekly lab routine, but sadly not yet. We are having a really hard time finding the right balance of keeping excess fluid off with diuretics and keeping my kidneys happy. If it wasn’t my heart, the past two years, it has been my two little booger kidneys. We think we have found the right balance after another change last week, but this week’s labs haven’t resulted yet.

We are pretty much both a Bada** at handling what life throws at us, but honestly I think we almost hit our limit last week. Finley started getting sick randomly. I didn’t feel well so Mom had to take her to the the vet, she had to get two shots, start meds and eat a special diet. Oh and we got notified we have a water leak somewhere by the water company. Poor Mom was trying to work, deal with all that, keep me fed and watered as we like to say and both making sure I stayed on schedule with my meds.

I’m pretty sure if one more thing happened, we’d both have been sitting on the floor in tears. We say all the time, we wouldn’t wish Post Transplant life on anyone. But what we wouldn’t wish is the unexpected ups/downs, the chaos, never knowing how I will wake up feeling or what plans will have to be cancelled. But we would wish this life filled with a belief that Hope Wins, that little things don’t matter and with enough love and laughter in your homes that it fills you on the good days and sustains you on the bad. I was reminded this week of a quote, “you may not have Faith in God’s plan, but never lose faith in the One who holds the plan”.

Have a great thanksgiving. Get those christmas pj’s on and decorate it up. Laugh and break bread with your friends and family. We will be rocking our pjs, I will win and those decorations will be up and we will laugh and count our blessings, including each of you.

With love and so many prayers,

K.