Where to begin, where to begin. My story starts a few years ago when I fell down some stairs and landed on my kidney. I won't bore you with that story, though.
It was a little over a year ago that I decided to pack up my belongings and move out to Colorado. It was really a monumental effort and it felt more like an extraction than a relocation. As it turns out, that's because as I was packing up the truck I was entering the final stages of renal failure.
I saw my doctor a couple months earlier and he noted my blood pressure was high. I'd been limited in my physical activity since my fall, so I committed to exercising more and drinking less coffee in hopes that I could alter my BP without a prescription. But no amount of lifestyle changes could prevent what was about to happen.
I'd had some worsening nosebleeds during the past year, and as I drove the U-Haul toward the mile high city I got a nosebleed that persisted until I packed my nostril with snow. During the next couple of months I'd lose a significant amount of blood this way. All I could do was sleep 18 hours a day, and all I could eat was hard boiled egg whites and cream of wheat.
Eventually, the vision in my left eye became blurry and I went to an optometrist who diagnosed my condition as hypertensive retinopathy, which is a hemorrhage in the blood vessel within the retina. The optometrist, though not a doctor, might have saved my life because she implored me to get my blood pressure checked. I went to the supermarket pharmacy and used the free machine there. 220 / 180. I went straight to the E.R.
A few blood and urine tests later and ... I was being taken upstairs to Medical ICU.
For Christmas 2009, I got a Quinton.
When I decided to move to Colorado I was very up front with my employer. I gave them 30 days notice... and they "accepted my resignation effective immediately." I got screwed like that, and what's more is that means I would lose 30 days of health insurance coverage. As it turns out, that was the best thing possible, for a number of reasons. Back when I fell on my kidney I went to the E.R. because I had some immediate, drastic swelling in my legs, and that was before I had health insurance. You can probably see where this is going - because my kidney injury preceded my insurance coverage I would have been looking at a preexisting condition.
By the time I went to the E.R. in Denver I was an established Colorado resident and since I'd been too sick to work I was declared indigent, and qualified for the lowest tier rate through the Colorado Indigent Care Program, or CICP. This meant that my 3 day stay in the ICU would cost me a grand total of ... $20. Yeah, twenty bucks. I cannot imagine the nightmare I would have suffered through trying to get Humana to cover this, nor could I have shouldered the burden of my insurance deductible and copay. I strongly believe that if I had had insurance, I would have ended up filing for bankruptcy.
Since then, I've learned more about Medicare, Medicaid, CICP and SSDI than I thought I'd have to know for at least another 20 years. At age 43, I qualify for Medicare A & B. I was receiving Medicaid, but then my disability income disqualified me from that. How's that for circular logic? On dialysis, I qualify for Medicare and because my income is nonexistent I qualify for Social Security Disability. But because of my SSDI disbursement, my income level keeps me from qualifying for Medicaid. The system obviously still has some glitches to be fixed.
Being on hemodialysis is exhausting. Removing the poisons from the blood so quickly somehow makes a person really tired. So tired that we all qualify as 100% disabled. It's like that feeling when you're about a half mile into a long run but you haven't hit your second wind yet ... the heart stresses, there's a feeling of being out of breath, you can't concentrate and almost want to crawl out of your skin. But this is the way I feel when I take the fetal position curled up in bed. I just can't rest enough after a dialysis treatment.
Recently I discovered a strange, delayed metabolic reaction to physical activity. One week I walked a few miles and rode my bike some. I was indescribably tired after that, but then two days later my metabolism kicked into high gear. I had so much energy that after my 6 a.m. dialysis I stayed awake until midnight. It wasn't until a week later that my leg muscles began to get stiff. It seems that the key to having good energy is to push myself to exercise hard. This is true for everyone, but especially so when you're on dialysis - It's a tough recovery but the returns are so high.
So part of my exercise routine includes a modified Ashtanga Yoga practice.
I'm lucky, I'd been practicing for 7 years before I was hospitalized. Getting myself back up to speed was a big effort, but I can't imagine how it would be if I didn't already have a foundation. I really surprised them in MICU when I got up and started practicing yoga.
I could have opted for peritoneal dialysis, as the DKos' Kitsap River has chosen.. It has its pros and cons. But since I live alone and don't have a caregiver it wasn't really an option. And having 2 liters of dialysis fluid in my belly would be a major cramp in my style.
As you can see, I'm getting my strength back. Enough to start working a little. Except that no one would hire me. Eventually I found some self-employed work, driving a taxi cab. The deal with driving a cab is it takes about 30-35 hours a week to earn enough to cover the lease, insurance, and gas. Being disabled, I can only muster about 40 hours. Which means my net income is to get paid for about 5 hours of work, after a 40 hour week. I'm allowed a certain amount of earned income per month and still qualify for SSDI. So far I haven't crossed that line, but I'm hoping to. Yes, I'm hoping to exceed my earned income allowance in order to remove myself from the ranks of the officially disabled.
I landed on the safety net. And now I'm getting back on my feet.