When the unexpected happens
I barked at my partner to take me to the local health centre. Within five minutes, I was there and being helped into the ER by a nurse. I would find out later, I was experiencing a Spontaneous Coronary Artery Dissection (SCAD).
After that, things got sketchy as I slipped in and out of consciousness. I came to once in the ambulance on the way to the city hospital and again briefly when we arrived. After that, I just recall flashes - of people, colors, objects near my face, then everything went black. I was rushed into the cardiac catheter lab and underwent the insertion of two stents.
I learned later that I came to the next day long enough to tell the nurse keeping watch over me that "it" was happening again. She alerted the cardiac team and low and behold, I was having my second SCAD. My family was contacted and told to come now if they wished to see me before emergency surgery. They were told my chances of survival were 50:50.
I came to long enough to tell my partner I had found my resolve and wasn't going anywhere. I squeezed her hand and then told her if Tyr (Norse god of Justice) owed her any favors, now would be a good time to cash in. (I have no idea where that came from at all.)
Six hours later, I was out of surgery having survived the procedure. I was kept in a medically induced coma for four days and monitored closely in ICU. On the fifth day, I started to fight my way back to consciousness.
After having lain perfectly still and silent for days, my family sitting with me in shifts, two at a time, I started making sounds. As one family member leaned in and lifted the oxygen mask to find out what I was muttering, he was surprised to hear me command "lift up my hand!". I was staring at the end of the bed and I repeated this over and over. As he lifted my right hand up, I extended my middle finger and said something very nasty to whatever I imagined was at the foot of my hospital bed.
My two family members could barely control their laughter. They knew I wasn't completely "back", but the Katherine they knew was still in there fighting.
A short while later, with my eyes closed, my feet began moving to the left and right, rhythmically, and once again my lips were moving. This time as they lifted the mask to listen they were surprised to hear me singing the lyrics to Thunderstruck by AC/DC. Once again, they cracked up beside my bed.
While I was happy to provide a little comic relief after scaring the daylights out of my family, the auditory and visual hallucinations I was experiencing kept up for several days. I lost track of how many times I heard Bohemian Rhapsody in my head. It became routine for me to ask my nurse if she could hear <insert song title> and she'd reply "no, but I wish I could!"
I spent 17 days in hospital, first in ICU, then in the Cardiac Care Unit. I was as weak as a lamb. My body had cannibalized itself during the days I could not eat. I'd lost a lot of muscle mass and was bloated still from all the fluid they had pumped into me. I was 225 lbs the day I left the hospital - which was my usual weight at the time, but my body was unrecognizable.
I could not get to a standing position without extreme exertion. Climbing a single step was not not possible without physical assistance. I had to fight with myself to eat like a bird.
Within three weeks I was back in the local ER again with what I thought was a gall bladder attack. After several hellish days in the city hospital and a variety of diagnostic procedures behind me, it was discovered I had a pulmonary embolism (PE). I was sent home on anticoagulant therapy.
Sometime in November, I got my wires crossed and thought that after my anticoagulant prescription was done, that was the end of that therapy. As Christmas drew near, I was struggling to breath more often than not. I couldn't walk a half dozen steps without getting short of breath. I was not doing well.
When my cardiologist called me December 18, he became alarmed at how hard it was for me to even talk to him. He asked me to pack a bag and to present myself at the city hospital for admission right away. I gave in and spent Christmas in hospital. Apparently my chest cavity was full of fluid and that was behind much of my breathing issues.
January 2019 saw little improvement. I tried to keep moving around the house and improving my eating but I was still struggling. My cardiologist began doing the workup necessary to refer me to Ottawa for transplant assessment. In early February, I saw the Hematologist and he was alarmed to learn I had a second PE and had discontinued the anticoagulant therapy prematurely. He immediately reinstated the therapy and I was determined not to make the same mistake again. Referral for transplant was postponed until the PEs were resolved.
By the end of March, I started feeling a bit better. I was beginning to do small chores around the house. I could manage to take a shower on my own. I didn't get winded walking across the house. I was still very weak, but since it was mid winter I began my own therapy program consisting of small daily shores, done at a pace I could manage. Every little bit of activity helped. By the end of April I no longer needed to nap every afternoon. My weight was down to about 183 lbs.
As spring approached I was able to get outside again and began walking short distances with my rollator, to try and build up my stamina and muscle strength. I also got out gardening. I used a small rolling seat and did what I could from a sitting position. It was so great to be outside again!
In May 2019, I had a procedure to insert an Internal Cardiac Defibrillator (ICD). It was a day procedure and went off without a hitch. Knowing I'm at risk of fatal arrhythmia, it was a relief to have my own on-board defibrillator.
By late summer, the anticoagulant therapy had been discontinued and I was booked for a stamina test in September. I worked hard to become as strong as I could for this test. As it turned out, my performance wasn't bad for someone with a 23% expulsion fraction, but it was a far cry from normal. Suddenly the care team was concerned about my lungs fearing that perhaps I had a rare condition where I spontaneously grow PEs. They referred me to a specialist.
The day after I saw that specialist I was back in the ER again, this time with what seemed to be a gall bladder attack (just like the October before). This time; however, my gall bladder was the issue. It was full of stones and becoming septic. For almost two weeks I languished on IV antibiotic therapy as it seems I was considered to be a poor candidate for general anesthetic. Finally, the surgeon found an anesthetist willing to put me under and I got the necrotic organ out. Needless to say, this whole ordeal set me back again.
By Christmas 2019, I was starting to come around again. My weight stabilized in the mid 180 lb range and my fluid management issues were behind me. I was getting my strength back and began receiving referral letters for more tests.
At an ICD check up I learned my cardiologist was now postponing referral for transplant assessment for now as I was doing reasonably well from a symptom management perspective. While that was a relief (as major organ transplant is a little scary), I now had to come to terms that I would be living with my damaged heart for the foreseeable future, as long as my symptom management remains stable. Sounds like good news, but it actually sent me spiraling into depression.
I realized that there was no point keeping my business alive in name only for any longer as I no longer had the stamina for it. So I began the painful process of shutting that down.
I also had to examine my expectations. I have limited energy on my best days. Two days in a row having to go to the city for medical appointments and I'm beat for two days afterwards. Mentally I have all the same big plans and ambitions as I ever did, but now had to face the fact that I wouldn't be getting a new, healthy heart anytime soon, that the damaged one I was living with was what I have to work with. I was crushed. At 57 years old, I didn't know what the next step was.
If you saw me in a public place, on most days, I actually look pretty good. People tell me I look better than I have in years, that they'd never tell I was sick by looking at me. Yet, I cannot do all the things I used to do. My endurance is extremely limited. Knitting with worsted weight yarn is hard on my hands. I seem to only be able to cope with sock weight or lighter now. Mixing a batch of cookies leaves me tired some days. I struggle to be contributing member of my immediate family and some days can't manage that. My sister lives on the third floor of a building with no elevator. I have not visited her at her house since before my SCAD. Some days just talking to people on the phone takes everything I've got.
But I am still here. My mind is clear. I'm still a whiz at word games. I'm slowly becoming a bit of a foodie as I experiment with low-salt and plant-based recipes. I've assigned myself tasks that take little physical strength but lots of patience - like organizing cupboards, making labels for containers and the like. I've gotten used to wearing the white hard hat so to speak when there are DIY projects here at the house. I'm in charge of sorting hardware and reading instructions while others do the heavy lifting and assembly I used to. Slowly I'm carving out a new niche for myself in my family unit...one step at a time.
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