Living while you wait for a transplant. Well, that’s the idea, right? To keep yourself physically alive so that you can get your transplant? Of course it is, but it’s more than that, friends. What I’m talking about is really living. You know, enjoying your life and the moments in it even while facing your mortality.
Let’s Face the Facts
Well, that sounds a bit morbid, don’t you think? I guess so, yes. I mean, if you are waiting for a transplant the chances are pretty good that your outlook for living a long and healthy life is not so great. If we’re being realistic we have to admit that our perspective has to change. Things are not all rainbows and butterflies right now.
The fact is, many people die every day while waiting for their transplant. For a person to be a donor, certain things have to happen in just the right way (more on that in another article). What this means is that only 3 out of 1,000 people who die, do so in a way that allows for organ donation. On top of that, only about 60% of the people nationwide have decided to become a donor.
What this means is that there are just not enough organs to go around. This is why I encourage you to stay on top of your appointments, procedures, medications, and everything else required by your transplant team. Because honestly, just the fact you need a transplant doesn’t make you a shoo-in. Being a patient who is invested and doing all of the things asked of them just solidifies your case as a good candidate.
All Is Not Lost
OK well, that’s scarier than all get out! I know, right?! But I’m not suggesting you throw in the towel. Quite the contrary. If ever there was a time to fight, this is it.
When I received my diagnosis, I was given a 20% chance of living beyond 90 days. I had been laid off from work, was uninsured, and could barely care for myself because I was so sick. Now here I am, typing away on my sofa so that all of you can see that it is possible. Even with a bleak prognosis.
My doctor told me then that statistics are just statistics. Just because 20% is low, it didn’t mean I wouldn’t make it, it just meant that I had to fight harder. I say this so you don’t get too wrapped up in all of the numbers. It’s true that not everyone makes it, but it’s also true that many (almost 40,000 in 2019) do.
Prognoses aside, you have to commit to doing whatever it is you need to do to get you across that transplant finish line. This is, without a doubt, a marathon not a sprint. After all, the alternative is just not an option.
The Challenge of Living While You Wait
Let me get back on topic. While I waited for my second chance at life, I found one thing very challenging. It was easy to dwell on all of the negative things going on. The pain, the hospital visits, the dependency on everyone to take care of me, and just generally feeling rotten. In addition to all of that, I was constantly grappling with the idea that I may not be around much longer. I was not in a great place. I mean, who would be?
Generally speaking, I am a silver lining kind of gal and still, I found myself dwelling in the negative. This translated to looking at everything like, “oh geez, this might be the last time I ever get to do ___________.”
It might seem like this way of thinking would help you to focus on living while you wait. However, for me, it did the opposite. By catastrophizing, I was missing out on the moments that I could have been enjoying. I had a therapist I spoke with weekly while I was waiting for my transplant who gave me some excellent advice that I’ll share with you.
When you are living while you wait, do just that. Live. When you are spending time with your family and loved ones, bask in it. Smell the air, look at their faces, listen to them talking and laughing, hold someone’s hand. Close your eyes for a second and let that memory really soak in with all of your senses. Burn that sucker into your memory banks.
Truly Living While You Wait
Doing your best to enjoy the moments you have will do more than lift your spirits. It will remind you what you are fighting for. Whether it’s sitting between your kids watching TV (what I like to call a “mom-sandwich”), or going for a brief walk with your BFF. The time we have with the people we care about is the most important.
When you feel ok, be sure to take advantage of that to connect with your loved ones and establish those memories. Take some time to talk to a friend about something other than your transplant. Play a cutthroat game of Uno with your kids (one of my favorite pastimes). Sit quietly with a parent or sibling. Enjoy a stroll in your favorite park. Actually stop and smell the roses (or peonies or pine trees or whatever you like).
Even in the hospital, I would try to enjoy things as best I could. I’d bring things to keep me busy (knitted scarf anyone?). I got to know the nurses and medical assistants and had some great conversations with them. In the mornings, I’d get up and watch the sunrise (because if you’re up from getting a blood draw anyway, why not?).
So you are going through an extremely challenging time. That doesn’t mean that everything must come to a halt. Life continues to go on and if you are wallowing in self-pity, you might miss some pretty spectacular moments.
If you can put aside all of the negativity to find some joy in your daily life, you will truly be living while you wait. And isn’t that the better way to spend your time anyway? Besides, this way you will already be in the spirit of gratefulness when you get your transplant!
