The fun continues.
I spent most of summer stuck in my apartment. My leg was broken – cracked femur and AVN in my hip – and it really hurt. I couldn’t walk or move much, and I was in pain both at rest and while walking. I couldn’t sleep, couldn’t get around the house, couldn’t go out and do things with friends. It was incredibly depressing, both because it was another setback and because I was stuck inside all the time.
I’ve said this before, but every complication is both easier and harder than the last. It’s easier because I know what to do about it, the best ways to control symptoms, how to handle pain, etc. It’s harder because I’m exhausted. I’m traumatized and tired and I increasingly worry that life is passing me by. I turned 24 on Nov. 10 and that’s been really hard for me. I know I’m not that old, but I’ve now devoted almost my entire existence from 19-24 to being sick. I am not in my “early 20s” anymore and I never really got to experience them. I’m sad.
I had my hip replaced on November 1. I am also in my very last classes to complete my degree. This combination has been really, really hard. The prospect of moving out of housing for 3 months and then back in to finish during winter quarter wasn’t exciting, but neither was the prospect of waiting until February (the next surgery date) to stop being in pain. So I ended up doing both at once. The hip replacement ended up being a lot harder than I expected, and I was in a lot of pain, especially in the first two weeks. I had some risk factors that made this more likely (had been on opioids for months since the pain started in June and I have osteoporosis from prednisone so my bones are weak) but I still didn’t expect it to be so hard. I mean, I know I have a huge titanium rod that replaced a major joint but I talked to several people who had the surgery and they seemed to do better than I did. I’m about 3.5 weeks out from surgery now and I am still recovering but I’m not in constant pain anymore. I need a cane or crutches to walk, but I’m hoping to be done with those in another 3-4 weeks. Even though that’s close considering I’ve been struggling since June, it feels like it will be forever before I’m there. Sleeping is still tough because I have “hip precautions” that don’t allow me to twist my leg inward or outward, so I can pretty much only sleep on my back keeping my legs straight.
I had the surgery done at Stanford Hospital and I was surprised by how hard it was for me to be back there. Last time I was there was for acute renal failure in December of 2017, which was one of the more traumatizing medical experiences I’ve had. Not only because of how sick I was, but because a lot of medical errors were made and I felt very unsafe. This time, I was admitted for two days post-op. As soon as I got to the orthopedics floor I was put in a shared room with a woman complaining of vomiting and diarrhea. As an immune compromised person, this made me really nervous. My medications were different than I expected, and I immediately lost it. I was scared and traumatized by the last visit, which went wrong in ways I don’t even like to remember, and I worried that similar mistakes were happening again. I just had a visceral response. After I freaked out, they moved me to a private room and went over all my medications with me. My nurse was really great, a lot better than the one who messed up all my medications during renal failure, and that helped a lot. But it was still just hard.
I missed a week of school and then my dad came to stay with me to help me for a few weeks. I’m now on Thanksgiving break for the week and afterward I have another week of class and then finals. To say I’m tired is an understatement. This situation as well as the cumulative effect of slogging through school while sick for years, I am beyond ready for a break. Somehow I have to will myself through a few more weeks of school.
Right now I have a lot of big decisions about my next steps in life. I need to decide if I will start medical school this coming fall or if I’ll defer for another year. I need to decide what I want to do over the next several months, which also depends on what I’m doing in the fall. I also need to figure out how to stop feeling like I’m just trying to survive. For the last 4-5 years, I’ve felt like I was living in a parallel universe from the rest of society. I still feel that way. I don’t want to feel this way for the rest of my life. I don’t remember how to be normal – and that’s assuming I even get the opportunity to be normal. I have a few more surgeries I will need to go through in the spring, but none are as major as the hip replacement. Right now there are no signs that I’ll need another joint replaced, and I’m hoping that holds true.
In good news, I have been off of prednisone completely since July, which has done wonders for my face. I truly cannot express the sadness and frustration of having lived on prednisone the last four years – with my face puffed up, looking and being treated like a sick person, not sleeping, just all of it. Actually, I’m off all immune suppression right now, which is pretty amazing. I hope it lasts. My immune system is now strong enough that I was able to stop my anti-fungal and anti-viral a few months ago (I’ve been on these continually since transplant). I’m still on two prophylactic antibiotics and several other medications, but there are fewer now. I also started getting revaccinated. I won’t be eligible for live vaccines (like MMR) for at least a year, but I was able to get several dead vaccines, including polio, pneumonia, hepatitis, etc. This is a huge milestone I’ve dreamt of since my transplant.
In all honestly, I feel like I’m just waiting for the next bad thing to happen to me. This is probably PTSD or maybe it’s just reality.
Here’s a picture from right before my hip replacement:
Here’s a picture from my 24th birthday on Nov. 10. It was only 9 days after my surgery and I honestly felt awful, but some close friends came over and I managed to go out to dinner. I had a nice time with some of my favorite people on earth even if wasn’t ideal.
Oh! I also gave a speech for a St. Baldrick’s event in October. Here is a link: https://www.youtube.com/watch?v=oBo2aqa_m0g&feature=youtu.be