Sickle Cell Awareness Pt. 2
Please read part 1.
In my 2nd year of college shit really started going downhill as I suffered my first avascular necrosis episode in my hip. I had to use a wheelchair once again to get around, I believe my mom would drop me off and then my dad would pick me up. I was also having way more pain crisies for some reason. Hospital stays were going from a few days to a week or more. With a lot of hassle I managed to graduate college I managed to get a job with the federal government which ended after 7yrs because they weren't willing to accommodate my physical limitations or my Sickle Cell. When I spoke to a lawyer about my situation they said I had a very strong case against the organization if I wanted to pursue legal action, but I was just done mentally and emotionally. I knew even if I fought for the job, my illness would eventually prove to be too much and there was only going to be so much they'd overlook. It was also around this time I was preparing for my first hip replacement in the same hip that I had suffered my necrosis in (at this point I'd had necrosis in both hips but the one that had it first had degraded over time). Because I was getting my hip replacement at another hospital that my hematologist didn't practice at, they said I should consult with the hematologist at that hospital. They "claimed" to be experts with Sickle Cell and said they had a strong Sickle Cell community there.
My base blood levels are around 6.5 (for someone without Sickle Cell is about 11-16...not completely sure, just trying to put my counts in perspective). The hematologist said he wanted to get my counts up to 10 before allowing me to get my surgery. I explained to him that even with transfusions I was never a 10. The highest I've ever been in my life was 9 and that was with 4 or 5 bags of blood transfused. He said instead of a transfusion, I should try a blood exchange (where they pull out the blood from your body and put new blood in). I had to be lightly sedated so they could insert the tubing before they could start the process. I believe it took anywhere from 6-8hrs for the exchange. Not even a week later I was rushed to the ER with severe pain and we found out it was a rare side-effect of the blood exchange not working. The hematologist basically disappeared which pissed my dad off. My surgeon was more concerned about how I was doing and unfortunately because of the hematologists ego, my surgery had to be canceled and rescheduled. The next time the surgeon said we'd just go with what my home hematologist advised. I did a basic transfusion which got me up to around an 8 and the surgery went perfectly. I was completely pain free which was mind blowing to PT as they said most people still complain of pain, which put into perspective for them just how much pain I was dealing with before having the surgery. After a few months after my recovery, I had my 2nd hip replacement.
I could keep wiring and talk about how I almost died on 3 separate occasions, how I tried multiple times to take my own life, how getting food poisoning ended up becoming a 3 week stay in the hospital. How I had a pain crisis so bad I was basically comatose in the ICU for weeks, how certain people in my family like to pick and choose when my Sickle Cell is convenient for them, how people say they understand I have my limitations but still question why I can't do certain things, how people don't understand that I sometimes am just exhausted from simply existing. I am at a point now where I'm experiencing dizziness at random, with nothing to pinpoint. My liver is possibly trying to shut down as a result of so many pain medications. I wake up with having to take 30mgs of Oxycontin just to function, I go to sleep with 20mgs and I have to take dilaudid when I have pain in between that.
It gets hard to keep the negative thoughts from overtaking me sometimes. But I'm still here, where babies have unfortunately lost the fight early. It's frustrating when I see people around me not living their life to the fullest and saying they "can't" when they perfectly and full well CAN. I worry because with every passing day I feel more and more tired...feel less and less motivated to keep going. So if you follow me and see random Asian men in your feed, video game characters or stories, just know these are the little things that keep me going.
