Complicated Answers To A Difficult Question

I try to share as much as I can on this blog. In doing so, my prayer is that God would use a word, sentence, or post, that would cause someone to look upward. Even though I try to be as vulnerable as possible in my posts, there are always missing pieces. That is why blogging and social media, I believe, were never created to replace face-to-face relationships. But in reality, there is no way to connect with as many people as we want to, until we get to heaven. But until then, I try to be an open book.

Something I haven’t talked as in depth about, but have received many questions about in the past 6 months, is “why don’t the doctors just go in and do a transplant”? I mean, enough already, right? Why continue to try new meds that wreak havoc on the body? Why continue to get hospitalized and put our family through those times, when a transplant is an option? Why delay? Why keep trying things that haven’t worked in the past? It is a very complicated answer.

There are days when I wish for a transplant. Then reality sets in and to be completely honest, a transplant right now doesn’t always seem like the best option. Even though if I did, for the next 5-10 years, I would probably live a pretty amazing life if everything went well. But what that doesn’t talk about is what happens 10 years after that? And 10 years after that? And that is where my doctors and I are stuck.

Three years ago, I started the testing process to be put on the heart transplant list. I didn’t qualify by one test, and I wasn’t sure how I felt about that. I felt sick and I wasn’t sure how long I could keep going the way I felt. It was then that my doctors informed that if I had one then, I would probably need another transplant in my lifetime. You may think, okay, why not? What’s the big deal? What goes into a transplant is an incredible amount of risk, a lowering of life expectancy rates, and the most obvious, the rejection of the heart. So after those tests, the truth of that matter was, the doctors wanted to get me to 50 years of age before I had a transplant, to lessen the chances of needing a second.

The life span of a transplanted heart is getting greater a greater, but there are an incredible amount of factors that go into those statistics, such as the age and health of the heart received. If I had a heart transplant today, I’m like best case scenario the doctors say health-wise (outside of my heart) and my body and heart size are ideal. They believe my body would accept many. With that said, ideally, it would be good to get a heart that isn’t of a 55 year old. But the likelihood of getting a younger heart, is less. And add on several other factors such as lifestyle of donor, blood type, etc. It is complicated.

Let’s say I would receive a heart! Again, there are days when that sounds like the cat’s meow! After a transplant though, you don’t just walk out of the hospital a miraculously cured patient. By all means, a transplant in and of itself is quite miraculous in my book (any transplant for that matter…who ever thought of doing this??). With a heart transplant, you are put on what they call “medication therapy” where you are put on a mix of immunosuppressants, also known as anti-rejection drugs, for the rest of your life. Because of the intensity and side effects of these drugs, I’m told kidney transplants become more common then. Yikes. Two transplanted organs in this body? Wowzas. Sometimes I feel like going to the bathroom umpteen times a day doesn’t sound too bad if I can prevent two transplants! It is a LONG recovery as well, filled with lengthy hospital stays, regular biopsies, blood draws, doctor appointments, etc. It’s intense the first 3-6 months.

And then the most obvious risk, the fact if it doesn’t work, meaning if my body rejects the newly implanted heart. As much as my life is at risk living with advanced heart failure and I am on end-of-life heart medications, a transplant is a whole different story too. The biggest risk, being death. Now we’ve been presented with the “death” word more times than I can count, but rejection is real. Life expectancy with a transplanted heart is real. And these are conversations that we continue to have between my doctors and myself. Conversations you never expect to have, but conversations of “how can we keep your current heart going, so that we can help you live the longest life possible.” I suppose that is all of our “goals” to some extent, to live the best life that we can, but when you see “end of stage” or “advanced” or “transplant team” on your medical papers, dying from heart failure is very real.

It’s not that I’m scared of death, and in fact, I have so much comfort and peace about being with my Savior, but it’s the thought of leaving my family behind that pains me to no end. It’s hard for me to talk about and something I don’t always bring up. I cry at the hospital when I realize that my heart failure is getting worse and how it is effecting my family. I know it’s my limited perspective of not fully trusting that God will see this all through in His perfect ways and in his perfect timing, but these are the thoughts that my mind has to process and think about. It’s a lot. How do I best prepare my family if I don’t make it through a certain procedure? How can I best set Dan of up for success if I don’t come out of that surgery?

I know I can come across as over-organized with things, but when you have to sign your name on that line that says you understand the risks of your procedures WAY too many times, have to fist-bump your husband knowing it may be the last time as you’re wheeled away, it makes you see life in a different perspective.

And yet, this could be ANY OF US, at ANY TIME. I just happen to KNOW that my heart is failing me. So then that allows me to prepare, to have those hard conversations, etc. Many don’t get to have that last conversation because the death of a loved one was completely unexpected. So in a way, we are greatly blessed.

As hard as all of this is to think about and process, there’s sure a whole lotta grace and good in this too.

Guess what? I don’t have to have this all figured out! Sometimes my mind gets into the whirlwind of worry and the devil knows it, but as long as I remember that it’s not for me to figure out every detail, there’s a whole lotta peace. If I need a transplant, God knows the right heart, from the right person, for Kristin. He knew before the beginning of time! Imagine that? Talk about God ordaining everything according to his good and perfect plan! And if I don’t need a transplant, I will just continue to fight with advanced heart failure. The days are hard, long, and exhausting at times, but God ALWAYS gives me the grace I need. I look back on this journey and it sure speaks of His faithfulness!

I was diagnosed with a heart condition at 17. Now 20 years later, I still battle it and forever will, whether I have a transplant or not. But how my life goes is not up to me! Whew, that’s a relief. No statistic puts a limit on God! How things have gone in the past, doesn’t determine my future. EVER and NEVER. No statistic puts a limit on my life. Are statistics often an earthly reality? Yes, but not an eternal one. I can do nothing to change God’s plans for my life. So we keep trucking along and continue to follow God’s lead in this all. Whatever he has for us, well, is part of the journey. And how humbling it is to see his faithfulness through all the twists and turns. Does a smooth path sound enticing at times? Absolutely, especially after I go to the bathroom for the 18th time that day (I wish I was exaggerating…). But a life of ease isn’t where the depths of God’s love, faithfulness, and grace are found. It’s in the hard. It’s in the overwhelming. It’s in the grieving. It’s in the trenches. THAT is where God is often most tangibly felt as humans because it’s in those moments, that we often need Him most.