There are many dates throughout our lives that we remember for whatever reason, good or bad. The title of this blog is the date on which my life and its course changed irrevocably. Up until July 12th, my life was difficult but it was what I was accustomed to. You see, I have congenital congestive heart failure, Left ventricular to be more specific. I have had it for 20 years and became accustomed to the limitations it put onto my life, which were some, but not many. Then I developed chronic kidney disease, which comes with the heart failure territory, sooner or later. I thought, “Ok, this is just another issue to adapt to. No biggie.” Medications kept my fluids in check and my kidneys, though compromised, still did the job they were designed by biology to do. I did most of the things other people my age did, but mostly, I drank.
July 12th, 2017 was probably the worst day of my life, other than my parents’ deaths. Many days before, I was preparing to celebrate my 42nd birthday, ‘Hitchhiker’s Guide to the Galaxy’ style. This was going to be the year of 42!!!! The answer to the question: Life, the Universe, and Everything. It was going to be grand. It started slowly with slight weight gain, which I just brushed off, then it progressed to a feeling of fullness, lethargy, and ultimately, extreme nausea and a loss of appetite. This was on my birthday. I remember not wanting to see my birthday movie, ‘Spiderman: Homecoming’, but you see, I have this character flaw wherein I feel great panic if I think I am disappointing people, especially my friends. So I pulled it together and went to the movie. It was a great movie, of course, but I couldn’t truly enjoy it in my condition. I was stubborn. I thought it was just a stomach bug and it would pass. I let this ordeal continue far longer than it should have. Maybe I truly, deep down realized what was happening, but I did not want to admit it. Admitting it made it true, you see. I didn’t want to admit my fear that I was in kidney failure, again.
After a few instances of almost passing out, I drove my stupidly difficult self to the emergency room. It was July 8th, I believe. I don’t specifically remember. They told me I was fluid overloaded. This was something that has happened before so I knew the drill; Intravenous diuretics to help my kidneys eliminate the excess fluids. Only this time, nothing was happening. NOTHING. I wasn’t urinating. I should have been pissing buckets. I was getting really scared. “What if this time was different? What if my kidneys were done?” On July 12th, that question was answered. My nephrologist at the time was a nice man named Larry Davis. Although he was nice, he was a matter of fact type of guy. He came in my room and broke the news to me: I had developed ESRD. End stage renal disease. This was it. I was always afraid of dialysis, but thought, “That’ll never be me.” Well, now it was me. I thought my life was done. Therapy three times a week forever, or I would die. This news was like being hit with a wrecking ball. It altered my life, but I wasn’t aware of that yet.
As I lay in my hospital bed, hooked to a large machine cycling my blood out, cleaning it, then cycling it back in, I was hit with all the things I believed I could no longer do. Drink, smoke weed (I really miss that one), urinate. You’d be surprised how much you miss peeing until you can no longer do it, cause sometimes you just need a really good piss, amirite?! I was under the impression that even though I had advanced heart failure and a newly minted diagnosis of ESRD, I could still work full time. My body made it abundantly clear that that was complete crazy talk. Who listens to crazy talk?! No one, that’s who! So I dragged my body through each day, struggling more and more. The work days after dialysis treatments were especially challenging. Challenging like climbing Mount Everest without supplemental oxygen. That means it was super hard and sucked super bad, just saying. I had filed for social security disability and Medicare coverage. I was counting the days until I was approved, then I would quit magnificently like Scarface from Half Baked.
Then October 17th came and my illusion came crashing in. I was denied disability because I was still earning too much money. So, the decision was made. I had to quit my job. What a scary thing to do! It had to be done, cause to get help, the government wants you to be completely destitute. Who needs to pay bills or have a roof over their head while the government takes 4 to 6 months to review your case? That’s just plain nonsense. Being homeless is so underrated!!! So as of right now, I wait, praying that my meager 401k and driving Uber and Lyft part-time can sustain me until my benefits kick in. I would work full time, but I have an earnings limit of $1160 a month. That’s not even $300 a week. I’m on the razor’s edge here. I’ve crossed over from the safe zone into the danger zone. I’m riding the lightning. I am in uncharted territory and I am terrified. Change is difficult for me. This whole process has been difficult. There have been multiple emotional breakdowns and I imagine there will be many more.
New normal is a motherfucker.