I am in a couple heart transplant groups on Facebook with thousands of other pre-transplant individuals, people on the list, recipients, caregivers, etc. People are able to ask questions. Recently there was a post, what’s the craziest question you’ve been asked and it was filled with 100s of questions, many of which I’ve been asked. So. I thought I’d share some of the most asked with you..

How are you not angry?

Mom and i have both been asked this..and to be honest, we have been angry. Remember, all the mama bear stories? We just don’t usually share when we are angry online. But for instance, Right now, we are angry with a bunch of my team, including the transplant team. I don’t have a specific Tx doctor overseeing my case, so when specialists run into dead ends, there is no one to pick up the ball and advocate for me. And that’s frustrating.

Have we been angry at God?

Of course. You don’t go through such a heavy and dark period for several years, without being angry with God. We’ve both handled it differently. It has helped to see how the knots become untangled in our lives and see where He was working to heal that Anger, but it’s hard

Have you met your donor?

I’ll let that sink in for a moment. I can’t have met my donor. I hope one day to meet their family, but it’s not physically possibly to meet the donor as they have to have met their maker for me to receive my gift.

Did they check to see if anyone in your family could be a donor?

Ummm….I simply responded that was not how it works for hearts.

Where did the other organs go?

I actually do not know. When an organ is available, multiple teams are notified based upon criteria in the list system. A team asks for any tests they want run to see if it’s a match. if they accept the organ, then the coordination begins with other teams around the country, on when they will accept their organ, as they do not all go to one individual. It is in a specific sequence. Generally, hearts and lungs go first as they have the shortest viability.

Did you take on any of your donors likes, dislikes, traits?

This is actually a really big discussion point within the transplant community. Some people swear by it, while it’s not scientifically possible. But, I will say after transplant, I craved fish. Before I could take or leave it. I also used to be an extreme grudge holder, now I just let it go and move on. Is it because I have a new heart? I tend to think my body was craving a specific nutrient when it wanted fish and I think I don’t hold on to grudges because of what I’ve been through.

Did you see a light?

This one cracks me up. I didn’t see a light when my heart was explanted. We are on bypass so blood is still circulating throughout our bodies. The closest I got was wheeling to the OR and realizing that there was a 50/50 chance the new heart wouldn’t restart.

How much did it cost?

I’m not offended by this. People are curious. Pre insurance-it cost between 1.6-2.0 million dollars. Our out of pocket, was somewhere between 15-20K. That’s for several weeks of ICU stay, the surgery itself and post op care. Now, each ER visit costs us about $400-$600 and Biopsies/Right Heart Caths run about $700. Hospital stays usually range from $2,000 to $5,000. The increased costs are due to the pharmacy costs of all our meds, the acuity of care we require and continuous cardiac monitoring.

What about your meds?

One of the realistic factors about being listed, is ensuring you have the means to take care of your heart, including your meds. the organs have to be given to the best candidate and that includes those able to take care of the organ. If someone can’t afford their medicine and not eligible for resources, the organ will not survive and therefore they may not be the best candidate. The transplant community is always evaluating the ethics of transplantation and I hope one day money is not a factor.

Medication is a big concern of teams and pre-transplant individuals. I take 26 daily meds + 13 meds as needed and it costs about $1000/month and about $12,500 for the year, with insurance for my daily meds. and about $500/year for as needed meds. This total is at the 3 year mark. The first year, when we are on even more extensive meds it cost over $15K.

What are some of the weird rules you have to follow?

At first, they seem overwhelming but then you get used to them. For instance, when cooking each ingredient must be prepped on a different surface and with new utensils. This is due to the risk of cross contamination. We have about a bajillon cutting boards. No gardening, no sticking your feet in the ocean, no lake swimming or public pools, no pomegranates or grapefruit, no fruits or veggies from outside the home are some of the ones that come to mind. This is mostly due to the bacteria concern.

Is it creepy/weird knowing your heart was in someone else’s body?

I wouldn’t say I’ve ever felt creeped out. If I really pause to think about it, it actually amazes me. It also helped that My transplant coordinator told me early on, it carried them through their life and now it will do the same for you. The minute the nurse let me hear it beat, it become mine/ours.

How long?

How long what? Just like you, I know not the hour our Lord will call me home. Hearts last on average now, 13 years. But some have had one for 20+ years. God willing, that will be me or I will be eligible for a second transplant if the need arises.

Most asked question by ER doctors? Was it drugs or genetics?

Nothing about my case follows statistics, so I’m an outlier when I go to ERs. When they want a quick history they ask the question above because those are the two reasons, that a younger person has a history like I do. Mine was all genetics.

My heart is heavy for anyone who has or does battle drugs, so I’m not offended by the question, because it’s a harsh reality and one linked to transplant. Sadly, there has been an increase in available organs due to the opioid epidemic and overdoses.

The #1 most asked question is…do you know who your donor is?

I do not know any personal information about my donor. I’ve written, but not received anything back and that’s okay. I remind myself, in order for me to get to enjoy my life with this gift, they are grieving someone they loved. It can also be hard for donor families, who may be angry that the recipient is still living while the donor is not. So, we remember to hold them in prayer and hold a sacred space for them in our lives and that’s enough for now.

That being said, my coordinator did tell me that I had a younger heart, as they tend to be the feistiest, when we were dealing with another issue.

To conclude,

Perhaps it seems odd to talk about a surgery that was 3 years ago. But the reality is, it’s not like other surgeries where you are fixed/healed. You accept a lifestyle when you accept a heart.

This isn’t just a 1-2 punch and things are good. Your doctors have concluded that no other treatment option will work besides giving you a new organ. You accept you are 200% more likely to develop cancer, you accept a lifetime of meds, and you accept a different type of chronic illness.

I often times read people being frustrated that their life isn’t like it was pre-transplant. I try to tell tell them gently, it never will be. But that it’s completely worth it all. These 3 years, are ones that were never promised and knowing what we know now, likely wouldn’t have happened. So I’ll write these posts for the girl who posted a few days ago she’s scared and wants to back out, I’ll write them for the post transplant newbie who wants to feel normal, and I’ll write them for myself, to remember. And I’ll write for each of you, so you can step into a glimpse into our story and see how God continues to work in it.

Never in question? That hope will win because of Jesus and a donor. ♥️

Next up: Biopsy/Right Heart Cath and Echo update…

The last time I saw my grandmother, or Nonnie, as we called her we sat on the floor and went through her treasure box and button box. She told me stories about the ones she remembered and afterward, we laughed as she sat on the end of the couch telling me stories of her childhood. These were the stories I guess I was finally old enough to hear. These were her most treasured stories, her gift to me. I learned I was more like her than I thought. Which is why my mother calls me by her name, Rose, when I am being stubborn.

She and I talked every Monday night, I’d call her on my way home from work, she’d tell me about her weekend. I’d tell her about mine and ask my biggest prayer warrior to pray for certain intentions.

On more than one occasion after that visit above, she’d say “I can’t believe you wanted to see the button box”. It was the time with her and the stories she told over that button box. And so a few months later when she passed, there was a note on that button box in her handwriting, “for Kristin”. Since then, the contents have been moved to a old milk jug and on display ever since, retaining the button box title.

A week or so ago I was looking for buttons, and mom suggested the button box. Blasphemy! I wouldn’t dare. But after a search high and low in the house, they were the only buttons we had.

I poured them on the bed sifting through them, hoping to find pairs. I found some. It was like time stood still that evening, as I looked at them…and it still didn’t feel right to use some. That night I was scrolling eBay on my phone half asleep and somehow ordered online a vintage American Greeting plush doll. She worked for American greetings, so I just knew that was Nonnie getting the last laugh on the button box, when I saw the notification the next morning.

I ended up not using the buttons, but those memories stayed with me all week. We were supposed to be at Hopkins for a week of appts and a biopsy to check on my heart. I woke up with a sinus infection Monday, had an antibiotic by afternoon and the side effects of an antibiotic even sooner. This carefully scheduled and coordinated week was a mess-all having to be rescheduled.

I looked at that dang button box again. To anyone else it looks a mess, but to me it’s the most beautiful mix of buttons I’ve ever seen.

Year 3 was a mess of a year, just like that button box.

…endless ER visits for migraines as we wait for a new med to come on the market

…an auto-immune diagnosis, only for a new doctor to disagree with the first one and request more testing. A medication that didn’t work and only caused more migraines.

…lab fails, over and over due to tired veins.

…infections, GI bugs, colds, the flu.

…specialists hitting the end of their treatment options that were transplant compatible and getting nowhere.

…some challenges we didn’t share..

And we had come into the year thinking (year 1-survive, year 2-thrive, year 3-live!)

And yet, year 3 turned out to be the messiest. Like that button box, looking back it looked like a bunch of messes. And yet it was the most beautiful year so far. It was the one where God continued to reveal “He is still good”. year 1 and 2 you are simply just trying to survive the craziness that you forget to look up.

Everyone wants transplant to be this beautiful tied up package.

But it’s not. It’s messy. hospital bills. Medications. Doctor visits, vitals, phone calls to the transplant office, messages to doctors. Its energy one day to not being able to get out of bed the next.

But in the midst of that it’s silly memes from your bestie that made you laugh out loud. It’s the random texts, “just thinking of you”. It’s your mom being there for every high and low. Its the dogs acting like goofballs that you laugh so hard you cry.

It’s been 1,095 days since my transplant. It’s been all things beautiful, messy, and everything in between. I never had smooth sailing pre-transplant or post transplant and as my PCP says “when you’re supposed to zig, your body says I’ll zag”. And yet, this year showed me my resilience.

It’s shown me God’s goodness, His presence, His faithfulness, especially when I look back. We stare too much at our own feet instead of trusting the hands and heart of His.

But I hope, I never forget that…

..somewhere a family grieves their loved one. And in Gods providence he saw it fit their story would live on through my heart. And so,

Grief and gratitude coexist in this story. It’s messy like that button box, but this heart of mine is the most beautiful and prized possession. And my donor’s heart is the best gift, I’ve ever received.

To my donor family, wherever you are, thank you. And to every blood donor who saved my life since, thank you. Because of you, I get the gift of beautiful and messy days. As a wise friend once said “not every day is good, but there is something good in every day”. And even on the hard days, life is still good. And so is God.

…Post coming up next: all the crazy things I’ve been asked post transplant like, did you meet your donor? How long does it last? How much did it cost? And some fun other ones…