Dear Diary: it’s been 1,828 days since my transplant surgery. Yesterday was the 5 year anniversary of my surgery, and the official end of my “study” on human cadaver knee transplants. Being #15 in the world isn’t really the lucky number.
Suffice it to say that it didn’t go as planned. Instead of having an amazing new human knee, I have a knee that is about 10% as good as the one I used to have. It was quite the surprise to start out my treatment playing hockey, climbing mountains, playing softball, and to now have a wheelchair, a cane, and a knee on the pain scale of about 8 on the normal day. Oh, and I was force retired from my career because I am too disabled, nerve damaged, and too much a liability to work any longer.
I guess the upside is that I get paid to stay home. The down side is being paid to stay home is really only fun when you aren’t sick. I’ve been stuck at home for 5 years and 1 day, not to mention suffered multiple painful surgeries prior to this date and suffered more after. The physiotherapist I was assigned had no protocol for treatment, so she ended up doing much more damage than helped. No one has heard of my “secret surgery,” and so no one can help with the aftermath, the surgeon included. Sometimes, hubris of the medical field takes little account on what it does to the people they are experimenting on. A huge lesson learned for me, as I was given no alternatives for treatment (I needed a knee replacement) except to be a part of this study in human engineering. It’s a shame to be the little guy that doesn’t matter to the top dogs of the medical field. My surgeon has felt or expressed little remorse for my situation, other than to finally agree that something is wrong with my knee (he always assumed I was making it up). My advice? Be careful what you let the doctor talk you into. And, don’t sign just because you think you have no other choices. The surgeon ruined my life, and there’s no skirting around that. He took a life of promise and dreams and hopes and destroyed them in the quest for science. And he loses nothing.
I have to be grateful that I’m not as bad off as many people out there. I’m not dying and my translant wasn’t my last hope for survival. I still get to wake up each day (albeit painfully and nearly driven to insanity by loneliness and isolation). My kidneys work. My brain is fine. I won’t die tomorrow as a result of the diseases I suffer or the medical care I received. Of course I’m now a pain patient, and no doctor likes to help me. I live without effective pain medication; all of it has been stripped away in hopes that I don’t become “addicted” to feeling better. Better to suffer than to need something to stop it.
I dream to travel again. I miss getting on a plane alone and looking forward to an adventure. I feel trapped and alone. Therapy cannot quell the pain in my heart at being stranded here forever. I wish I could turn back time and change the course of history. I fear that I will never be able to enjoy my life again, or when I finally get the help I need, I’ll be too old to enjoy it.
For now I’ll just wheelchair like a madwoman and limp like a pirate. Perhaps I need a parrot for my shoulder, and I definitely have enough tattoos to be pirate worthy. That’s it for now, diary. Life doesn’t change much now and it will not change in the foreseeable future.