Medical Malpractice Advice

Medical Malpractice Advice

Dear Reddit Users,

In July 2019 at the age of 29 I was diagnosed with ANCA Vasculitis or GPA with lung and sinus involvement by a pulmonologist at a well-known hospital in Cincinnati, OH. He then referred me to an oncologist (also his wife) for treatment with a chemotherapy drug called Rituxan. Rituxan works by suppressing the B Cells of the immune system that attack the blood vessels in the affected organ. This is also an autoimmune disease and I was never referred to a rheumatologist. Their treatment plan together was to give IV Rituxan Biweekly with no end in sight. I was told that I would most likely receive the infusions for life and I may eventually go down to receiving them every 4-6 months. This news was a shock and being scared of losing my life to this rare disease and a mother of two young children, I complied with the treatment plan. Keep in mind this disease is very rare and this was the third’s pulmonologist I saw who finally diagnosed it as ANCA.

Fast forward to about a year of receiving infusions, I made a devastating decision, with the guidance of the oncologist to go through with a tubal ligation. My children were only 3 and 5 at the time and we were NOT finished having children prior to diagnosis. She informed me that a pregnancy within a year of Rituxan isn’t safe and I would continue receiving it for life. She told me even if I eventually moved out to a treatment once every 6 months I couldn’t carry a pregnancy without severe risk to the baby due to the chemotherapy. Before anyone asks why my husband didn’t get a vasectomy which is less invasive that a tubal was due to the fact that I was meeting my individual deductible after one $25,000 infusion. You read that right, every two weeks I was receiving a 25,000 dollar drug.

I went through with the tubal and continued receiving infusions with no end in sight. These infusions depleted my IGG levels so I had to receive IV IG at least once a month. I was also sick and worn down for several days after. Due to the amount of IV drugs I also had a port placed because my veins were shot at this point. This drug is also not studied in this amount and frequency so who’s to say I won’t develop other health issues a result in years to come.

By August of 2021 I had had enough and I had done enough research and joined enough support groups that I decide I was going to get a second opinion. Something wasn’t right. I scheduled an appointment at another well known hospital in Indianapolis, about an hour and a half from my home. It took almost a year to get in with a pulmonologist but when I finally saw him in July of 2022 he was absolutely floored. He said ANCA Vasculitis is treated with Rituxan once a week for only FOUR weeks! Then they redraw your ANCA levels to see if it is back within normal range. If so, Rituxan isn’t given again unless a flare occurs. The last ANCA level I had drawn at the other hospital was in Dec. of 2019. I was dumbfounded and embarrassed that I trusted my life in the hands of well-known specialists. The new pulmonologist immediately referred me to a rheumatologist who would spearhead the treatment plan.

After lots and lots of reflection and did call a lawyer shortly after and was told that the OH statute of limitations was up within a year of treatment. I had waited too long to file anything. I guess fear, confusion and the fact that it took so long to get that second opinion was my fault for not doing anything sooner.

It is 2024 and my disease has been managed with immunosuppressant oral medications. I haven’t had a flare either and my ANCA levels are closely monitored by my team of specialists. I don’t even really know why I am necessarily putting this post out there but it weighs heavily on my mind daily. I gave up bringing another child into this world, something we wanted desperately. I did consider reversing the tubal but a few years had gone by and we were left with tens of thousands of dollars in medical debt from the treatments. Yes we also had insurance at the time.

Has anyone gone through anything remotely similar? Is there any chance of filing a lawsuit this late in the game?

Thanks for listening ♥️