Once again, it’s been a while since I’ve made an update. A lot has changed. A lot hasn’t. I’ll try to be clear about everything, but it’s even all muddled in my head. This is a long one.
The wound on my knee hasn’t healed yet. I’m missing quite a bit of tissue below my knee cap and while most of it has scarred over, due to how thin the remaining tissue is, most of my sutures that were used to repair my patellar ligament are now protruding outside of my skin. So what looked like a giant scab on my knee turns out to be a knot of sutures with dried blood all mixed up in the tangles of blue surgical rope.
I can visibly see the ligament tissue and the sutures that wrap around it underneath the scab. It’s a very uneasy feeling when you can see your ligaments outside of your own body, lemme tell ya.
It’s been bleeding lately too, whereas it hadn’t been. And the smell..ugh. I wash it nearly every day with antibacterial soap. I’ve even taken a semi-soft scrub brush to it, like you would with road rash. But it still smells of rotting and decaying flesh though my surgeon assured me it’s not infected. Just another strike on my already ailing self esteem. I feel like at any moment, a swarm of flies will be circling around me like a Peanuts cartoon strip.
Last week, I spoke to my surgeon, Dr K, on the phone and he says he wants to get me into surgery next week as soon as possible and he referred me to another surgeon that he wants to collaborate with in my next surgery.
So I saw an oncologist skin graft surgeon specialist at my surgeons behest. Dr G says I need a skin graft and muscle flap from my calf to cover the thin and failing tissue on my knee.
The tentative plan is for them to work on me simultaneously, for Dr K to address my internals while Dr G patches up my skin and muscle. My internals being addressing my kneecap, which is sitting too low and has fused itself to my femur, hindering my ability to bend my knee more than 40 degrees from straight. Also to attempt repair both of my destroyed meniscus, to adjust my MCL and ACL repairs, and to attempt to repair my torn PCL.
I say “attempt” for reasons I’ll get into shortly…
I’ve quit PT. I think it was 2 weeks ago was my last appointment. I hadn’t progressed my range of motion beyond the first week (hence why I’ll be having surgery again next week), and at $100 a pop three times a week, it’s simply unsustainable on no income.
I learned all the exercises and stretches and I bought the rubber band for band work so I can continue to build strength some flexibility at home. My left ankle has contractures from disuse, so that’s been a high focus the last few weeks, trying to gain range of motion and strength in my ankle again.
All the being said, my surgeon, Dr K, has recommended another surgeon, whom is also a knee specialist, to take a gander at me.
I saw Dr J yesterday. Straight forward, very knowledgeable, thorough, stand up guy who’s been in the knee-game for 30 years and wears his emotions on his sleeve.
After he looked at my MRI results from a few days ago and after he had taken several specific x-ray views of my knees, and after tugging, twisting, pulling, prodding and measuring my leg and knee, he gave me me the news, which to say was dismal would be grossly understating the the message his words conveyed.
“I’ve never seen an injury like this. No one is going to touch that,” he said. “And you have such an extreme case of arthrofibrosis that no one is going to want that liability.”
He went on to further explain, “learn to live with it,” while demonstrating to me his gait with having his leg stiff beneath him as he paced back and forth in the small exam room.
“It’s not ideal, but your meniscus is gone. Gone gone. You’re bone on bone. After time, it should harden and you’ll get used to it with pain. Some people have their knees fused altogether so it doesn’t move at all anymore. Your open wound on your knee is an issue. No one will want to touch that. Maybe if after your skin graft heals perfectly for a year someone might be willing to tackle a knee replacement. And manual manipulation under anesthesia would more likely than not break your distal femur before breaking through all that scar tissue, if not rip out your patellar ligament repair first.”
I’m paraphrasing, of course, but it’s pretty close to what he’d said. Some of his words were lost on me when he continued.
“Your other option is amputation above the knee.”
We had a very engaging and personal conversation for the better part of 45 minutes. He explained things to me referencing my x-rays. He had a model of the internals of a working knee and broke everything down for me. He also had a working model of a prosthetic knee, describing the procedure, it’s effects, etc.
I asked him lots of questions about all my options, including amputation. He was very thorough and never once did I feel rushed. He was there for me in that moment.
I say he wore his emotions on his sleeve because as he was telling me my options and information, he appeared very pained. He repeatedly expressed his sorrow for my situation. He’d said that he’d been in close contact with my normal surgeon, Dr K, over the last month (and 3 other surgeons in an ongoing email thread about my case), and that he thought just maybe, if he saw me personally, he could do something about it. He seemed genuinely sad that he can’t. He said no one else had any good ideas either.
He even went so far as to tell me that he’s waiving the $250 fee for exam and x-rays I’d just been charged and to tell the front desk to refund my money.
I’d already been fighting back tears through 90% of my visit with him, listening to the grim news and that’s what broke the dam. I could have sat there and sobbed in my wheel chair, but instead I grit my teeth, only shedding a few tears, and wheeled myself out and into the lobby.
As I waited, a gentleman whom appeared to be in his late 30s walked through the door wearing shorts, showing off his carbon fiber, servo assisted prosthetic left leg…wearing Crocs on both his real foot and his artificial one.
I turned to him, nodding towards his leg, and said “there’s a chance I might be headed that direction.”
We chatted for a few minutes while waiting in the lobby. I asked him a few questions and whatnot about being an amputee. Turns out he lost his in a moto accident. Fuckin motorcycles, eh? I gave him my card and asked if he’d hit me up so I can talk to him more.
He did last night, and we exchanged a couple of texts…but I wasn’t really in the head space to carry much of a conversation.
Surgery next week could very well put me back at square one. Maybe his attempt will do good? I’m eager to talk to him again after having met with Dr J.
I hope I won’t spend Christmas in the hospital.
Late last night, I had a bit of a breakdown. Short-lived, but a breakdown none the less. I was on the couch, researching arthrofibrosis, Bribri and the kiddo also on the couch, the kiddo on my lap doing toddler things hugging and playing with a stuffed animal.
I read an excerpt from something I was reading about arthrofibrosis and how it’s an excessive collagen build up and hardening and she made a quip about how I’d been drinking a collagen supplement in the hospital that they provide (Juven) and for a month after leaving the hospital.
In my head swirled a million thoughts all at once, “is this my fault for drinking that? Is it the hospital? Could this have been prevented? Should I could I would I have I can I will I….ffffffuck!”
I turned to her and tried to speak but it was just broken english and I couldn’t get out half a word let alone a complete sentence. I paused, collecting fragments of though and only said “please don’t say stuff like that. I’m barely holding on as it is.” and as I finished my sentence, I just burst into angry, fiery tears and threw my phone across the whole house. That’s only the second time in my life I’ve thrown my phone in anger.
My outburst startled the kid and she started to cry and crawled off my lap and into Bribri’s. I immediately felt horrible about that and reached across and through tears and trying to stable my voice, rubbed her back and told her I was sorry for scaring her. I told Bribri a few minutes later that I wasn’t mad at her. I’m just sad and mad in general. She replied “I know.” I still haven’t yet apologized to her for it.
I’m trying really hard not to cry right now while writing this.
So instead of the negative, I want to mention a few positives. The last few days, I’ve garnered enough strength and balance the I’ve been able to hobble WITHOUT my walker! I’ve been working pretty hard at it, and I can slowly get across the room on my own two feet now. I have to keep my brace locked, otherwise my knee buckles, and I’ve got an extreme ghetto pimp-limp…but as for in this moment, today, I can hobble half a dozen steps at a time! It fuckin hurts, but I can do it.
I also wanted to let you guys know how much I’ve appreciated and how thankful I am and Bribri is for all of your help, your support, and your donations to the cripple-fund.
I want you to know that without your guys’ support, we would have nothing right now. I would have been completely out of money and I hate to even try to think of how we’d be surviving right now. We can still eat, we can still put gas in the car to get groceries and go to doctors appointments, we can still pay rent and bills. It’s literally all because of you guys and gals.
THANK YOU.
We’re running a pretty tight budget and only spending on what we have to to get by (plus a few inexpensive xmas presents for the kiddo). I’m not sure what the future holds. February and March are scary to think about monetarily…but right here, right now, today, we are fed, warm with a roof over our heads (as long as I keep chopping wood), and okay. <3 So thank you, so very very much.
If you want to chip in, you can here: https://www.gofundme.com/f/he-yeeted-when-he-shouldve-yutted
Or buy some photos you may not have gotten yet on https://www.4theriders.com …I’ll let galleries go for $40 if you want em! :)
PS – some of the pics are kinda gross…so look at them at your own discretion. :P