I’ve been getting stronger every day. I can walk farther. I now take the stairs without needing to stop and rest halfway. But everything has its limits. I spent the day roaming around the hospital, getting blood drawn, getting an echocardiogram, meeting with team members. Before the day was half over, I was in a wheelchair. I might have been able to push ahead if I just had to move me from place to place. But there was my go bag. I’m weight restricted-I can’t lift more than 10 pounds. I’m sure they wouldn’t give me this bag to haul around everywhere with me if it weighed more than 10 pounds. But every time I picked it up, my chest started screaming, on fire. I couldn’t carry this thing. Erin tried for a whil, bt she was already loaded downwith a backpack and her purse. So, we grabbed a wheelchair.
It’s nice how eery time I forget how near the surgery I am, and how much recovering I still have to do, pain is there to remind me.
Recovery is about finding the strength somewhere inside you to relearn as much as rebuild. When I first came out of sedation, I found it nearly impossible to hold a conversation. Somebody would ask me a simple question like “What are you watching?” and I would sit there, mouth drooping open, staring at the screen, listening to dialogue I’ve heard a dozen times before, spoken by actors I have been a fan of for years, and have absolutely. No. Idea. What. The. Hell. I. Was. Watching. (More likely than not a rerun of NCIS or something like that.)
I’ve heard from some recipients that this can go on for months, even years. Some things may never come back completely. The emotional wave of sadness that washes over the heart recipient may never full recede. I have no trouble believing this. My life became a minefield of emotional overload after my bypass surgery in 2013. So I was not surprised to find the same thing, only amplified, affecting me now.
So I’ve become a big crybaby. There are worse things. It’s not the crying that hurts. It’s the inability to control the crying that pains me some. I knew I would undergo some changes as a result of the transplant. I just didn’t anticipate the extent of the deficit that would hit me in the days after.
Today was not a good day. I couldn’t stay asleep last night, and tired is not the way you want to recover. I was exhausted, so every challenge, every setback, cut like a thousand knives. I was in the hospital on tax day. Today I tried to do my return on Turbotax and for some reason I couldn’t figure out how to remove a old reference to a little part time job I had two mights a week before Covid from my return. The fuckin program just kept looping me back to his stupid little job and I couldn’t make it just go away. By the time I just gave up and resolved to do the return myself, old school, I as shaking so bad I couldn’t get my hands to type out irs.gov so I could download two 1040s for me and Erin. I couldn’t do my bills because I couldn’t separate the pages of my monthly statements or write out a check.
If I’d been thinking more clearly, I would have just called it quits for the day and taken a nap or just watched some tv. But that’s not me. I kept pushing on until I was blind with frustration and rage, crying uncontrollably, and in incredible pain because for some reason I have a problem with psychosomatic pain in my chest and neck. I took a pain pill, and two hours later I took a half an Ativan. That’s right-half of a .5 mg pill. It’s pretty much the equivalent of handing me a teddy bear and telling me I’ll feel a lot better if I smile when I’m feeling shaky.
What is it about doctors that they feel the need to remind patients that they’re in control over prescribing relief by reducing doses to the point they hardly do the job. My pain pills are now timed for one every eight hours and the Ativan is also every eight hours but the dose is so small it doesn’t come anywhere near controlling the emotional upheaval I am going through every couple days. Due to my old heart disease and a case of spinal stenosis, a disease in which the spinal canal narrows, with calcium deposits growing and impinging on the spinal cord constantly, I have taken pain pills for over twenty years. I have taken benzos off and on for the same amount of time. In that two dcades, I have had zero incidents of overuse or growing dependence. and they give absolutely no consideration to the experience and track record of responsible and careful use I have maintained. Quite frankly, it’s insulting.
I finally gave up. Tomorrow I’m meeting with my new PCP. Maybe she knows how to listen to patients and consider their history when treating the damage and upheaval they wreak upon the bodies and minds of their patients.