My patient story (at least some of the highlights)
(me skiing 7 weeks after my right hip was replaced)
Arthritis and me, talk about a never ending story. My story begins at birth with a diagnosis of bilateral hip dysplasia and continues through today when I had to take my Oxycontin due to the rheumatoid arthritis pain in both of my hands. In between birth and today, I’ve been diagnosed with severe osteoarthritis due to a rock climbing fall, facet joint syndrome, degenerative disk disease, gout (my rheumatologist now thinks differently), like 9 surgeries (11 if you count my heart radio frequency ablations), and almost many other arthritic conditions. During my life I’ve had countless steroid injections, epidurals, synvisc injections, and radio frequency ablations. Here are some of my patient story highlights (yes highlights, lets call them that :))
According to my parents, I was born with bilateral hip dysplasia. Based on the recommendation of my doctor at the time, my parents did the traditional double diapering technique for hip dysplasia in hopes of preventing dislocation. They thought the treatment had worked so they did not tell me about my condition until I was in my early 20’s. Although I don’t remember having much hip pain growing up, I always had trouble running and walking correctly along with building angles while skiing. I knew there was something wrong with my hips, I was just not sure what or how to articulate it since I was not in pain at that point.
In my mid 20’s I became an avid road biker which also was the beginning of my left hip pain. While out on rides, my left hip would lock up while in the middle of a ride. Sometimes if I got off my bike to walk I was able to release my left hip, other times the pain was so bad I had to call dad for a pick up. Since I was still considered “young” by my surgeon, he recommended I have my hip resurfaced. According to my surgeon hip resurfacing was considered a less evasive and risky surgery for someone my age compared to a total hip replacement. So around 2008ish, I had my left hip resurfaced at the University of Utah (I live in Boise Idaho).
Fun fact about my hip resurfacing surgery. I had the operation at the University of Utah because at that time my surgeon was not aware of anyone in Idaho performing this surgery. Hip resurfacing was till new in the US at that point so he wanted me to have the operation by someone who had done it before. To give you an idea how new this operation was, according to an article in our local paper I’m probably the 3rd Idahoan to have received this operation. The newspaper reported that there was a surgeon performing hip resurfacing in Idaho at that time but only had done a couple which is why my surgeon wasn’t aware of this.
Based on past experience, I’m guessing you would like to hear about my rock climbing fall. While out climbing one evening in June, 2003, at the Black Cliffs which is a local area just outside of Boise, I fell about 15 feet. The short version of what happened is I didn’t put in my first quickdraw correctly at my first bolt so when I fell just shy of the 2nd bolt, it didn’t catch me. Due to this mistake I ended up landing on a rock which was buried in the ground.
Since I did not have any health insurance at the time, my friends helped guide me back to my car so they could get me to the nearest emergency room. As one would expect, I was in shock and not thinking clearly at this point. The brain fog was so bad that I jumped in line to wait my turn at the registration desk even though my left arm was sticking out roughly 3 inches and was bleeding badly from a severe cut on the top of my head. I’ll never forget the face the registration lady made when she randomly caught a glimpse of me still in my climbing gear and bleeding all over her floor while helping the lady in front of me. She went from calmly explaining something to the lady in front of me to screaming for a wheelchair due to an emergency all in the same sentence. I still feel a little bad for getting to cut in line that night, I would have waited my turn.
The immediate damage report. In order to put my left arm back together, I needed 10 screws and a plate. As I mentioned earlier, my surgeon told us after the operation that my arm was sticking out 3 inches according to his measurement. In addition, I also needed 6 staples in my head in order to close the cut. The hospital’s radiology department gave me a copy of my X-ray because they said that I had one of the top 5 worst breaks they had ever seen. Here it is:
My medical team and I believe that the trauma from the fall accelerated my rheumatoid arthritis and degenerative disk disease. I first began to notice issues with my neck shortly after the pain from my left hip resurfacing surgery had subsided. What began with random pain in my neck and what felt like electrical pulses shooting down my arm quickly turned into constant, severe pain. This led to my first neck surgery roughly 2 years after I fell, turns out I had ruptured my disk at C5/C6. Not only had I ruptured a disk, a piece of bone had become lodged between my spine and carotid artery which meant I was at a increase risk for a stroke. 4 screws and a plate later and I was ready to move on to a new joint. For some reason neck pain has a mental sting for me in addition to the physical pain, especially true after the second plate and 4 screws was inserted in 2019.
I first started experience rheumatoid arthritis symptoms around 2008. Since my first rheumatologist had moved to a new state, my regular doctor was working with me on all arthritis issues. After doing some blood tests, he thought I had gout in my hands so he started me on meds for it. The meds did not help. Around 2010/2011, my pain management doctor referred me to a new rheumatologist who thought the pain in my hands was rheumatoid arthritis so he began treatment for that.
At that time the pain and swelling wasn’t as bad as it is now so he started me on NSAID’s. I tried various NSAID’s until about 2014 when he added everyone’s favorite rheum drug, methotrexate. The combination of NSAID’s and methotrexate helped for a couple of years. Around 2018, the rheumatoid arthritis started going after both knee’s in addition to my hands. Late last year, after what amounted to a several month flare, my rheumatologist decided that my disease was changing so he started me Enbrel. This was my first adventure with a biologic, not sure if I’m a fan or not yet.
In my introduction, I mentioned that I’ve had 2 heart radio frequency ablations due to atrial fibrillation (afib). The reason I mention this is because it was my rheumatologist who first discovered my irregular heart beat during a routine visit. Turns out severe pain, especially chronic pain, is a major cause of afib. Due to this I know consider my heart issues as being part of my arthritis experience.
Time for the big conclusion. I’m a big fan of the phrase “it’s just a bad day, not a bad life”. Yes, I live a life in pain, almost near constant pain. Yes, I’m starting to use the phrase severe more and more. However, I still can come to a local coffee shop to create content like this. Yesterday, I spent 45 minutes at my local YMCA working on lower body. According to the weather report, next Sunday and Monday the high will be near 70 degrees and sunny which means more than likely I will be on a trail with my camera hiking around. Oh yeah, I just applied for a new job at the YMCA. I would love to be able to tell you that I regret my rock climbing fall since it accelerated my health decline but I can’t. That is yesterday’s news, I’m more interested in the upcoming hikes and whether or not I can start a new career at the YMCA than worrying about my disease and physical limitations.