When you are waiting for your transplant, things change often causing minute-to-minute living. The dynamics of transplant can be abrupt and drastic and leave you reeling in the process. Being able to adapt is something that everyone must do in their lives. But when you’re living pre-transplant, that adaptability is crucial to keeping you sane. And alive!
Living Minute to Minute Isn’t All New
Every person has had to adapt to a major change in their life at one point or another. This is not new at all. From job changes and moving, to relationships and family, we’ve all had to make adjustments in life.
Many waitlisted patients have a chronic illness that caused their need for a transplant. For these people, dealing with a life that can change on a dime is something they’ve been doing for a while. For others, the dynamics of transplant (or any health issue for that matter) is something new and they find themselves in uncharted territory.
Don’t get me wrong. Just because someone has been doing something longer, doesn’t mean life is any easier for them. I still think about how quickly I went from diagnosis to transplant. Going from “normal” to transplant in a little over five months meant a ton of symptoms over a short amount of time. That was tough, no question. But to spread those same things out over years? That has to be intense.
What Does Minute to Minute Living Look Like?
Right before my diagnosis, life got hectic pretty much overnight. I had been having some flu-like symptoms for a couple of days and generally felt rotten. One morning when I got up, I had gained 10 pounds overnight! I could barely move, My feet and hands were very swollen and felt like they had fallen asleep.
By mid-morning, I was in a hospital ER room with staff buzzing around me taking blood and running tests. Doctors told me later that evening that without treatment, I would not make it through the night. Over the course of 24 hours, I had gone from feeling sick to “you might not see tomorrow.”
Things didn’t get much better after that. The dynamics of transplant meant things were always changing. There was a day that really sticks out for me. My mom had taken me to pick up my kids from school (because of HE, I could no longer drive). I felt pretty good overall. We sat at my mom’s kitchen table working on homework. My son was in middle school and worked on his “big kid” homework. My daughter and I worked on her homework making a caterpillar out of cereal, stickers and paper cups.
By early evening, I started feeling chilly. When we drove my kids to their dad’s house, I put on a couple of layers of clothes (despite the 60 degree weather). Back at my mom’s, I laid down on the couch with all my layers, a heating pad and a heavy blanket and took a nap before dinner.
A few minutes into dinner, I had spiked a fever of 103 degrees. We grabbed my go-bag and headed to the ER where I was admitted for a full week. Between 3 p.m. and 7 p.m. I had gone from feeling well, to a high fever and hospitalization. My afternoon had rapidly required minute to minute adapting.
How to Prepare For Transplant Dynamics
Y’all know I love preparing. I am an organizer and planner and if there’s an unknown I can remove from the equation, I’m going to be all over it!
Well, sometimes in life there’s only so much you can prepare for. Things happen and you’ve got to roll with the punches when they come your way. Of course, having your go-bag ready helps, but there are other things you can do too.
- Keep some basic medical stuff on-hand like a digital-read thermometer, pulse oximeter, and blood pressure cuff. These are all great for getting basic information to share with your doctors. You might also consider keeping a few bags in the car for nausea and vomiting.
- Keep phone numbers of caregivers and support people out and easy to find.
- Write down all the pertinent phone numbers. Your transplant center, on-call staff, PCP, palliative care and 24-hour nurse lines are all important. We kept these on the refrigerator.
- Make sure you always have an updated list of medications. In fact, head over to my article about information to keep on hand to see what else would be good to have with you.
- Don’t be afraid to dial 9-1-1. This is more for your caregivers and support people. You may become unresponsive or even beligerent. Sometimes, it may be better to get professionals involved sooner rather than later. It is also easy to get so caught up in symptoms you’re feeling being transplant related. People waiting for transplants can also have medical emergencies like a stroke or heart attack. If something is off, call for help.
- For goodness sake, talk to someone. Whether it’s a close friend, relative or therapist, going through this journey is hard. Don’t carry all that weight yourself.
Make Sure You’re Still Living
I’m not talking about survival as much here. What I’m saying is that things can change so quickly, so there’s no time to waste. Take the time you have that is good and bask in it.
So many people get the news that they need a transplant and immediately begin a prolonged pity party of epic proportions. Hey, you are entitled to feel bad for yourself. This is not a good time. It’s not fair, it’s not fun and nobody understands what you’re going through. Not 100% anyway.
I would love to be able to tell you that anyone who has gone through a transplant understands. To a small degree degree we all do. But your feelings are individual to you. Your pain is unique. Your struggles are your own. I can say that I understand, but what I understand is that what you are going through is difficult. I don’t know how you feel because what I felt was different.
What I can tell you is that sitting in that pity-party will not likely help you fight, or help you cope any better. I know that I can’t say, “snap out of it,” and you’ll put on a happy face and carry on. That’s not even the tiniest bit realistic. But, it’s important that you get help if you need it. Reach out to your doctor, transplant social worker, or therapist to help you move forward.
When you can pull yourself up and get to a lighter place, you can soak in all the good. And there will still be good that continues to happen, even while you wait. Those happy, worry-free moments may be far and few between, but they do still exist and you want to live in those moments as best you can when they do come along.
Minute to Minute Adapting
Throughout your transplant journey, the only thing you can count on is change. Before your transplant, you have to adapt to everything that comes at you to make it to your surgery. Prepare yourself for the constant of change and be ready to adjust. The more you can do that, the better off you’ll be.
As Charles Darwin said, “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.”
