Happy Heartiversary To Me
Well, a month ago yesterday, April 15, 2022, at approximately 5:22 am, I was reborn, having died somewhere is the preceding 10 hours when they seevered my arteries and removed my old, enlarged, diseased, ischemic heart and put in a shiny new (well, new to me) heart, along with clean new coronary arteries, and all the trimmings.
I’ve been home for just a tad over two weeks now. There have been a lot of steps forward since then, and a lot of steps back, but so far the steps forward have been beating the steps back by a royal shitload. So, for all the dark I’ve been writing these last few days, I am still feeling grateful. I’m weaker right now in terms of muscles that have lain fallow and then been underused for the last month as I recovered my basic core strength, but inside I feel a new power. I can breathe without each breath being stolen by heart failure. I will get stronger. I win.
My mind is not mine just yet. It has gaps, it lacks endurance. It can be knocked off balance too easily. But it is going to come back. The aphasia — words that suddenly become unreachable even though I know what I want to say, and I know that I did know how to say it — if I concentrate and I’m patient it fades and I can communicate again.
The emotional overload, well, I’m learning to live with it. Some of it will fade in time, some will not. I’ve read that this is very common in transplant recipients. We cry more. We are more attuned to our sadness, our vulnerability, and it comes through as compassion for others as often as a hypersensitivity to our own feelings. I’m just fine with that. If I become more empathetic and compassionate, it means I’ve become a better person. In many ways there are times when I feel like I’m going through hell. But I no longer wonder if death will be a relief from what I was going through before. I feel like I’ve been empowered to become a better, stronger me. One of these days.
I’ve been thinking about the other recipients I’ve talked to. Even more so, sinc my heartiversary I’ve been thinking about the conversations I’ve had with the ones who are waiting. I feel close to them, having been in that boat not long ago. I try to share the change they will feel when they too receive their gift.
I have been thinking about the mother of two who is so worried about the weight gain that comes with Prednisone that she’s killing herself trying tto lose 20 pounds. I feel that. I tried to do the same thing myself, until I realized it was never going to happen. When you don’t have the wind or endurance to spend more than 15 minutes of exercise, you ain’t gonna lose no 20 pounds. I told her, spend your time putting your life together. Write a living will, and whatever other documents you need to take care of your daughters and your husband if, God forbid, something goes wrong and it turns out that it was just your time. I make sure she understands I’m not being pessimistic; I have faith she will get her heart, it will be a good strong heart and it will save her life. But if it doesn’t she will want to know her family is protected.
Write a living will, and whatever other documents you need to take care of your daughters and your husband if, God forbid, something goes wrong and it turns out that it was just your time.
I think about the guy who reminds me so much of myself. He has spent the last 20 years living with heart failure, unremitting heart failure that persists no matter what cocktail of drugs the doctors throw at him.He’s been living that way so long he doesn't really know any other way. We worried, he and I about the pain. We had lived so long with one kind of pain, always fearing would come for us soon and we would not feel the pain (or anything else) any more. We both feared a different kind of pain, one we instinctively would surpass what we were feeling prior. We worried about a lifetime of drugs just to make sure our old bodies didn’t kill off the new heart that gave us life. We worried about the food-borne illness or the case of the flu that we would be unable to fend off with our body’s natural defense system shut off in the name of protecting the heart. I reassured him it was worth it. The pain was bad, but they give you medication to get through it. The tacro, and the Cellcept, and the Prednisone, all the other drugs we will need forever because the heart that beats within us was not our own, they are not really so much different than the fistfuls of pills we were taking before to force the old heart to keep pumping, to purge our bodies of the fluid that builds up inside when your heart lacks the strength to keep and adequate flow of blood inside you.
We talked about the silly, petty things we resented having to give up, like raw fish or seafood. Rare steaks and raw vegetables from any place but our own kitchen. Tacos with the lettuce and the tomato and the onion. It’s funny how fear becomes obsession with the pettiest of things. It’s not that I don’t want to live without oysters on the half-shell. It’s that I’m afraid to enter a world where the smallest little slip-up, that one time we decide to share the seafood tower or get the burger with the works might kill us. It’s not the raw oysters or the salad bar that gives us such spilkis. What really causes us to dwell on that is the thought that if we go that way, everyone will know how stupid we are.
But, yeah… It’’s really worth it, a no-brainer actually. More life. New life. A chance to ride a bike again, to go for a walk on the beach with the one we love. I have yet to taste the salad that compares to that. In the end, he got my point and let them list him. He’s still waiting and he still whines from time to time about the salad bar at this deli. To be honest, so do I. But Erin suffers from gastroparesis, and her diet is no fat, no leafy vegetables, no beans or tomatoes or anything with a skin. If I start whining because I can’t have the seared tuna she gives me that look, the one that says “are you really gonna talk to me about what you can’t eat?”
It’s not that I don’t want to live without oysters on the half-shell. It’s that I’m afraid to enter a world where the smallest little slip-up, that one time we decide to share the seafood tower or get the burger with the works might kill us. It’s not the raw oysters or the salad bar that gives us such spilkis. What really causes us to dwell on that is the thought that if we go that way, everyone will know how stupid we are.
So, yeah, I guess that I have to say that, one month out, I’m happy I got the transplant. I am dealing with the pain, which is getting to be less day by day. I’m finding ways to deal with the shaking hands that make turning a page, or signing a check, or typing out a blog. I’m learning not to sweat the small stuff. I’m learning that compared to the absolute joy having a chance to live longer, to be here, there is very little that isn’t small stuff.
So if I have a bad day and I write about not being able to type a text, or having to ask Erin to get something off the bottom shelf, or about how I broke down because I. had to stop twice on the stairway, know this: that pain is real, I’m going to share it because there are people who need to know that the bad stuff is real, it’s not just people being whiny little bitches. Remember that there are days, and there will be more and more of them as time marches on, when I will write about the joy I felt the first time I didn't shake too badly to count out all of my meds for the week in one sitting.
Most of all, remember that there is not a single day, no matter what happens that I don’t know with absolute certainty that I made the right choice. I am happy I took the risk. I have a new heart, one that isn’t sending me to the ED nearly every month.
I have a new heart. I win.
I win, in large measure, because I have support. I have friends, loved ones, old colleagues, even some absolute strangers who have contributed to my transplant. I have the generosity of people who have helped me make the weekly trips back to Chicago for follow-up testing, hopefully people who will make it possible to continue, to pay the $400–600 a month to buy my prescriptions and get the shower chair, and maybe, just maybe, to get something to replace the seven teeth I sacrificed to get this heart. I have to keep posting this appeal, as much as it is a little embarrassing, because I still need your help. Please help me win.