Super General timeline:
2015 - Diagnosed with high blood pressure
March 2016 - Diagnosed with Chronic Kidney Disease
July 2017 - Left arm fistula surgery
July 2019 - Tubes tied for birth control reasons
December 31, 2019 - Dialysis
June 30, 2020 - Kidney Transplant
Spring 2021 - Diagnosed with Type 2 Diabetes caused by anti-rejection medication
November 2022 - Left arm fistula removal surgery
March 2024 - Diagnosed with moderate to severe hearing loss
April 2024 - First pair of hearing aids
Thoughts & Feelings:
Honestly, I have no idea where I left off on my health problems with this blog. I was happy in life and stopped writing about it. Now life feels like a huge struggle again, so here I am writing about my thoughts and feelings about everything happening.
I know I wrote about my diagnosis and my fistula surgery before so you can go back and read those posts. I can't remember about the rest. So here are some feelings about dialysis, transplant, and beyond.
Dialysis. Dialysis was the worst thing I have ever been through. I did it 3 times per week for 3 hours each, but you ended up being there for close to four hours with set up and removal. December 31st, 2019 through June 29th, 2020. I was "lucky" to only have to do it for six months. Most of the staff was very nice and friendly. The first tech I had was absolutely awful. I was crying my eyes and she tells me it could be worse, then goes on and on about the tragedies of her life. This is not okay. I am upset, your story which is probably worse isn't going to help me. I am allowed to cry and be upset. Dialysis isn't just chilling out for a few hours either. Someone told me it was easy and it is supposed to make you feel better. I always felt completely drained the rest of the day. It is also painful or feels weird. It is also loud as hell. there is so much beeping!
Transplant: My transplant surgery was on June 30th, 2020. Right in the middle of the pandemic. I had to have lots of covid tests. I had an amazing friend from high school as my living donor. Did you know you can lead a completely health life if you donate a kidney to someone? Did you also know that living kidney donations last longer in the recipient's body? So many interesting facts about medicine! I don't remember a lot of the time in the hospital because I was on drugs and honestly it was traumatic. I remember nurses being friendly, pain, weird smells, good food, and awkwardness. UCSF is absolutely amazing. But it is a teaching hospital so there are often students that tag along with the doctors, so it is kind of weird at times. It's also weird being naked or almost naked with strangers looking at you. My surgery went well, but a few days after being at my friend's house I had the worst stomach problems. Turns out something was leaking. So I had another surgery. Everything was fine after that. My new kidney, Lumpy, is amazing. My labwork is often better than the average person. It was overwhelming and difficult, but I am so grateful to be given this gift.
Diabetes: Along with any organ transplant, you have to take anti-rejection medications. I am taking a few. They raise my blood sugar every single day. So I am now Type 2 Diabetic. I fucking hate it. I have to wear a continuous glucose monitor (CGM). Mine is currently a Dexcom G7. I also have to use long acting insulin in the morning and short acting insulin at lunch time. Every single day. I try my best to monitor my blood sugar and eat fairly well with some low carb options. But is difficult. I thought after transplant I wouldn't have food restrictions like before. Now I can eat what I want but there are so many repercussions. Scientists need to figure out other medications that do not do this. This also doesn't happen to everyone. I just got lucky again...not really. It's pretty fucking shitty and annoying. I make so many decisions every day about my health.
Fistula: In 2017 they created a fistula in my arm so it would be ready for dialysis. I hated this too. It was so ugly and painful. Fistulas are a vein and an artery attached together for stronger blood flow. You can hear the rushing blood if you put your ear against it. It also vibrates for the same reason. It is so bizarre. They used my fistula for the six months of dialysis and it did what it was supposed to do well. Great. Get it out. In Fall 2022, I asked my doctor if they could do anything. He said yes since my kidney was working beautifully. So we had it removed. My arm is still ugly as sin, but it is less bumpy. It doesn't hurt, or go numb, or make weird noises, or vibrate anymore. I am so fucking thankful they said yes to removing it.
Hearing: I knew for some time now that my hearing was not its best. I remember in 2010 having pneumonia, flu. ear infection, and more all at once in college. I always felt like my hearing never 100% recovered. I also have tinnitus, ringing in the ears, which is fucking beyond annoying. It affects me and others. I thought this was the issue in my most recent failed relationship. It was definitely an issue but it wasn't the issue. Why didn't he encourage me to get it checked? He thought I wasn't listening. No, I literally could not hear you. Anyway, the hearing could be from the mega illness in 2010 that just slowly got worse. Or some studies say kidney issues and the anti-rejection meds can lead to hearing problems. But those are not 100% proven. So another health problem I have without an answer about how it happened. I got a hearing test at Miracle Ear in March. That was overwhelming and I had regrets. I ended up going to a locally owned place that lets you trial different pairs for a week at a time. I picked some I liked the most. It is weird and I sort of hate it. But it is nice to hear things I didn't know I was missing out on.
Final Thoughts: Life as a person with multiple chronic illnesses is really fucking hard. They affect you, obviously, but they can also affect your family, friends, work, and romantic relationships. It sucks. Who would I be without all of these health problems? Where would I be? What would my body look like? The what if's are never-ending. I just have to keep learning how to deal with all this shit. I would appreciate it immensely if I never heard "for the rest of your life" when dealing with a health problem. My life has been too hard for the last eight years. I am so tired of all of it.