Kintsugi

Monday, October 16, 2023

 The first few days home were terrifying. There is a PTSD that marches alongside BIG health issues and everyone in my family now has a healthy dose. 

I mean even tonight I was laying on my belly watching tv when Terrance ran in and said "Are you Ok? Is everything all right?" I looked up at him and said, "Yeah, I'm fine, why?"  "Because when I see you laying like that its usually because you don't feel good"

Poor man.  Now, in his defense, Dawn standing and flopped forward onto her belly was my preferred stance during heart failure. Apparently it takes pressure off the heart and is an actual documented "thing" about heart failure. All I knew was that I could breathe better so it became my default position. I got so accustomed to it that I continue to do it. It's comfy.  Not so much for him.

Despite my "no big deal" about being in the hospital....home was scary. Do you know those "in sickness and health" words that are in many wedding vows? Um, yeah. I was cashing in on those words HARD. 

In the hospital, Terrance had to bathe me. I would stand up and he would take these warmed cloths and wash me. Have you, an adult human, had another adult human wash you?  That, more than anything else, encapsulated how weak I was. I needed him. I needed his help.  At home, I couldn't make my own food, or walk up and down stairs. Shit, walking the 10 steps to the bathroom in my bedroom was a lot.  I would slowly walk to the bathroom, then slowly walk back. Rest, then try to climb back up into bed. 

Terrance would run my baths, wash my hair, get me lotion and then into a clean nightgown. He got a crash course in low sodium cooking because I was banned from the salt train.  (Sob, I still miss salt sometimes)  He monitored my fluids because I was only allowed 64 ounces a day to keep the fluid from building up. And he listened to my breathing because I still sounded like shit, gurgling away like a bubbler, then going quiet so he thought I had died. The man slept in a chair staring at me for weeks.  No wonder he has PTSD. 

Oh, and pills? I got the pills. Lots and lots of pills. The record high was 22 pills a day.  Blood pressure, heart rate stabilizers, pericarditis meds, diuretics - and then the depression/bipolar meds, diabetes, my regular statin.... Open up, swallow them down. 

They had warned me that finding the right medication titration would be ...rough.  Given that I believe that nothing will really affect me - I was dubious.  First med down? Losartan. I got the cough. You don't want a cough after heart failure because, well, a cough is a sign of heart failure. Tried another med. Not good. Tried a third, meh, Ok. 

This went on with medication after medication. We would find my therapeutic dose and then move to the next med to titrate me up.  The thing that we don't talk about is that with these medications with my condition the only way we know we are at your therapeutic dose?  You get sick. Your symptoms return.  The day we figured out that the Bisoprolol was too much? I walked into cardio rehab looking like death.  The med after that? I was puking in my office after the increase. 

Oh, did I mention the remote monitoring nurses? I had to weigh myself, take my blood pressure and pulse ox every day with a tablet that sent those vitals to the team. Once a week I would talk to the nurse as she reviewed those vitals and assessed any warning signs. Then, of course, there was my cardiac rehab team. I exercised under their watchful (and encouraging) eyes until the end of April. They also kept an eye on my weight, and I wore a heart monitor so they could watch to make sure I wasn't overdoing it. 

Cardiac rehab was nice, actually. I could see that I was getting stronger. I could see that I could be on the treadmill longer, or on the fancy bike with the scenic beaches and get to the end of that walk/bike. I was able to add weights by February and I was able to increase those numbers.  It was me, and several older men. They were crusty, refusing to change their diets, eat vegetables or exercise at home.  Of course, some had been through cardiac rehab before and didn't really see the rationale for adding vegetables into their diets.  

Not me. Tell me to exercise at home? Ok. Eat more veggies and fruit? Absolutely. The cardiac rehab staff are innately upbeat and kind. The other thing they do is transmit their observations to your doctors in real time. If I said "Oh, I was coughing a lot last night"....my doctors knew.  They watched me for lightheadedness and if my blood pressure was too low.  The cough from the Losartan not resolving? - the cardiac rehab staff emailed my doctor.  The first time I had that reaction to me medication?  My doctor knew right away.  I was ensconced in a team that was really dedicated to getting me back to a "normal" life. 

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