I’m feeling really bad right now and just want to share my situation. I went to the doc in 2021 because I was suddenly nauseous every day. They ran a million tests, told me I had Crohn’s disease, and sent me on my way.
After more blood tests, my liver enzymes were insane, so they sent me to a liver specialist who diagnosed me with PSC after performing a liver biopsy.
I immediately lost my job, and had to go about a year and a half without any medical attention. I was still feeling very nauseous every day, but otherwise felt in mostly OK health (I did go from 160lbs down to 125lbs, which was scary).
After finally getting a good job with a “platinum” healthcare plan, I started to resume my search for medical care. I was able to get on Humira for my Crohn’s, and was able to see a liver specialist. I thought I was finally going to get some answers to my illness.
The liver specialist told me the dangers of PSC, that I was high-risk for cancer, and that she wanted me to have screenings every 6 months. I left the appointment feeling really taken care of. My hospital is one of the best transplant centers in the USA, so I thought I was in good hands.
Except it turned out that the liver specialist who takes my insurance isn’t actually “in network”, and that short conversation I had with her cost me $500. I was devastated because I can’t afford this price for treatment, especially every 6 months.
So I went back to my insurance to ask for help. They told me that I don’t need to see a liver specialist, and that I only need to see a gastroenterologist. When I told my gastroenterologist this, he disagreed, and insisted I see a liver specialist.
I worked with my healthcare advocate and a health insurance representative, multiple times for over a year. I was told that although the transplant center I go to is “in-network”, that the individual doctors each have their own negotiated rate.
I got really depressed and stopped searching for medical care for a while. It became too scary and stressful to do alone.
It’s been about 2 years since I saw a doctor for my PSC. My gastroenterologist won’t acknowledge my illness at all, he only wants to talk about my Crohn’s, which is thankfully in remission.
I am still nauseous every day. My gastro says it’s the PSC, and that he can’t do anything for it. I haven’t felt normal in over 3 years. I really miss how my body felt before I got sick. I feel like I’ve aged decades in just a few years. I’m tired all the time and I don’t have the energy to keep fighting my insurance company.
I made an appointment with a new gastroenterologist, but there is a 13 month wait where I am (Washington, DC). The appointment is for January of 2025 and I’m hoping this doctor will be different and willing to oversee my medical situation.
This week I had my first “flare up” of PSC. I became lethargic, supernaturally tired (as I describe it), and felt pain in my upper right quadrant. My skin feels like ants are crawling under it, and I’ve already dug holes all over my legs and feet due to itching. I feel like I’m going crazy.
I am looking forward to my appointment in January hoping that I will get some answers. But for now, I just have so much fear. My mother died painfully and horrifically of cancer, and I am so scared that the same thing is going to happen to me.
Anyway, thanks for reading. I’m not sure how active this forum even is these days, but it’s nice to be among people who understand.