Sunday, January 9, 2011

My bum knee

As most of you know from Facebook, I had knee surgery today, specifically a partial replacement (patellar femoral replacement), a meniscus repair, and a lateral release. I've had a few emails about what happened, so I thought I'd give an update here and do the linky-linky thing for those inquiring minds. Plus I'm feeling very chatty on my pain meds and I got the pulse-ox thingy off my finger so I can type much better now. :)

In order to understand why I had to have this surgery, a little history is in order. And I apologize in advance for my complete inability to write short posts. ;) I have a connective tissue disorder similar to Ehler-Danlos Syndrome. It has caused flat feet, a hiatal hernia at age 14 that had to be surgically repaired, and a mitral valve prolapse. It's also caused early on-set arthritis and poor alignment in my knees. A few years ago, I had my left knee worked on... I had a bad meniscus tear (and oh boy, was *that* a story! included firemen and all) that my ortho said, "Um, yeah... that meniscus was flopping around in there so I just trimmed it out." Yikes! That tear had actually happened about six months prior but I toughed it out with a brace until it just got too uncomfortable. The back of my kneecap also had some arthritis, so his plan was to fake out my body to create fake cartilage. He shaved off the crunchy stuff then did a procedure called a patellar microfracture where he actually broke the bone in multiple places by poking holes in the back of the kneecap. Then scar tissues forms making the fake cartilage. Slick, right? He said it would last about five years then we'd need to actually do a replacement. We're three years out now and that left knee is doing great.

At the time of that procedure (which was outpatient with about a 6-week recovery with weekly PT), we got a baseline on my right knee. I had mild patellar chrondomalcia which means the arthritis was mild. It felt crunchy when bending the knee and you could hear it crunching when walking up and down the stairs. My ortho said don't kneel on the knees and take the elevator any chance I could. I started noticing more pain in the right knee over this last sumemr then I had one of those weird pops in the knee in September. After that, I was having more pain and some pressure too. Then in October, the pressure got much worse. So I went back to the ortho, got an MRI and a brace. The MRI showed a cyst, severe patellar chrondomalcia and fluid in the joint. My ortho (AWESOME doctor, btw... his name is Brent Brotzman, he used to be the UT football team doc and has authored the standard PT rehab book for knee injuries) is a minimalist. So first we tried a steroid injection and an injection of lubricant into the joint. It worked for 10 days and it was supposed to work for three months. So back in I went and the knee was so swollen that I couldn't even bend it. So we scheduled surgery. And even here, he wanted to try the minimal approach and first went in with an arthroscope. His plan was to maybe try another patellar microfracture like last time but prepared for the possibility of a partial knee replacement. When he got in there this morning, he found a small lateral mensiscus tear (I knew it!) and found NO cartilage left on the back of the kneecap and the bottom of the femur. It was truly bone on bone.

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I wrote all of that on Tuesday, January 4th. It's now Saturday, the 8th. I was supposed to be released from the hospital on Wednesday but we could not get pain controlled at all until Thursday then had to get a series of goals met over the next 24 hours to be released. It was a nightmare. The staff at the hospital was horrible, the room was tiny, no one ever introduced themselves, people patronized me, talked down to me, one PT made me cry and get more angry than I've ever gotten at another human being in my life. At one point, Curtis actually yelled, "GET OUT!" at the man. I will never, ever go back to Seton Northwest for anything, ever.

Because I have fibromyalgia and a connective tissue disorder, I am managed by a chronic pain specialist and I've been on a low dose of an agonist/antagonist pain med for years. It made getting my post-op pain control very difficult to achieve.

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This is turning into a journal. It's now Sunday. My days are long, filled with endless PT exercises, and complicated pill time management. I have to spend 6 hours a day with my leg in the CPM machine; it bends and lowers my knee. I have to increase the degree of flexion by 10 degrees every day. Today I'm supposed to go from 50 up to 60 degrees and I've been splitting the time into 3 two-hour chunks. I'm allowed to bear weight as tolerated and I'm walking with a walker. I'm hooked up to an ice machine that pumps cold water around my knee when I'm laying down. I got to see the incision on Friday at PT. It's about 6 inches long.

I miss my camera. I took some photos right before surgery but haven't picked it up since then. I had big plans for Project 52 and a new website... maybe I'll get that going next week. I haven't opened Photoshop or been to any message boards. I've hardly even been on Facebook. It's like everything feels off, my life is surreal right now. If I had any idea the pain and post-op rehab was going to be this intense, I would not have gone through with the surgery. I don't like feeling sorry for myself and I don't like being dependent on people. The hospital stay was humbling, there is no dignity or personal empowerment as a patient. Just getting to pee was an ordeal and took two other people to help me.

A lot of things should have been done that weren't. I was supposed to have a nerve block port put in my leg to block the nerves for a day or two post-op... instead I got one nerve block shot. It was wearing off by the time I was in recovery. The second day was a 9 on the pain scale. I spent the majority of the day doing Lamaze breathing to get through it, no kidding. If my family hadn't been there to advocate for me, I would've been totally neglected. On Thursday night, the nurse assistant was supposed to come in at 4 a.m. to check my vitals and refill the ice in the polar care machine. She helped me get to the potty then never came back. My IV wasn't reattached, no vitals, no ice. She came in at 6:45 in a panic because it was shift change and said that she forgot to come back and had to do my vitals right then and that the new shift would come on and do them again in a few minutes. Seriously. This was the care I received the entire time I was there. Only 3 people ever introduced themselves.

Thinking back to when Anna was little and she was hospitalized twice and had so many tests run, I cringe to remember how people treated her. No one, especially a child, should be patronized, yelled at, and hurt when patience could be used instead. It really does make me want to become a patient advocate. I think about how our population is going to be flooded with elderly in the next 10-20 years and worry about this generation receiving this substandard care. If you have a loved one about to have a procedure, be sure to mobilize family to take shifts with them at the hospital. They will need you!

I really need to start my morning PT exercises, then get on the rack (ha, that's what I call the CPM). Hopefully a few months from now, I will look back on this and think it was worth it. So far... not so much. Thanks for all the support and prayers, I really felt them.

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4 comments:

  1. Holly - I hate to hear about your experience at the hospital. How horrible! Document it, and give it to your Dr. The Dr's are the ones with the clout at the hospital. The hospital won't want them taking their business elsewhere. Also send a letter to the hospital - call the main# and get the name of the person who handles complaints. It might not do any good. All I got was an apology and a $10 gift certificate to the hospital cafeteria when we had issues with a procedure for Megan, but it doesn't hurt to try. If they ask what they can do, try for a reduction on your portion of the bill. ((hugs))

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  2. O hh wow Holly, I am so sorry you were treated this way!! :( I am very glad you are home now and I am thinking of you every day and I hope you are up and around in no time !!! big hug and lots of kisses sweetie!!
    xxx Maaike

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  3. Holly, that just brought tears to my eyes! I am praying for a very fast recovery for you!

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  4. Oh Holly, I am so sorry the hospital people were so horrible and that you are having so much pain. I am thinking of you lots and I am hoping the pain gets better.

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