Autopsies

[Tina]

Not to get too morbid but, have you ever thought of requesting and prepaying for your own autopsy?

About 10 days ago I posted about a person's legal right to have input into their own death certificate. Now I am asking what can be learned from having an autopsy?

About 5 to 6 years into have ME/CFS, I developed a whole new set of symptoms. Severe muscle issues and breathing issues. I am now diagnosed with something called Antisynthetase Syndrome. It is very rare indeed. To my mind I had ME/CFS and it led to the Antisynthetase Syndrome.

1. They would still be saying I had chronic fatigue syndrome and all I needed to do was exercise and CBT except for the fact that I paid to have the 2-Day CPET test done at Workwell. This showed cardio/pulmonary issues in every category. Once I did that, they did indeed conclude that I had unexplained interstitial pneumonia. This is no way explained all my symptoms nor the level of drop from day one to day two that we are all aware of by now.
2. Once I got the NSIP (non specific interstitial pneumonia) diagnosis, they simply dropped the CFS and monitored me for three more years. They did not understand why I was saying I was as sick as I was. Finally as I was preparing to see the surgeon to have an open lung biopsy, I asked to have a myositis panel done which revealed that I had a the Jo-1 and Ro52 antibodies. I was simply told I no longer needed the biopsy. And they are about to start me on high does steroids and immunosuppresive therapy. If that doesn't work, the next suggestion is Rituximab.

I am now very ill and I am preparing my final directives and I am thinking of setting aside $5,000 for an autopsy. But how would one do it? What would you ask for? I want my kids to have answers. At this point my death does not feel imminent, but too many factors are getting "baked into the cake" at this point.

Also, is there a National Registry of some kind?
Two articles to consider:
https://www.propublica.org/article/without-autopsies-hospitals-bury-their-mistakes
and
http://online.wsj.com/public/resources/documents/hb4.htm

It all leaves me with no confidence in any medical practitioner I deal with. I almost feel like I could go to a kiosk and get just as much help.

 

[Merry]

@Tina, your report of how very ill you are now is sobering. I'm sorry. I regret that I don't have any professional -- legal, medical -- expertise to offer you.

Several years ago I told my son that I'd like an autopsy, but I never looked into the details, such as price, and I appreciate the links you provide to articles on autopsy. I have wondered how closely a pathologist would look at the body for disease. In an ordinary autopsy what could the pathologist possibly see that would verify or suggest that I'd suffered for years from ME/CFS? Can tissue samples from an autopsy be stored? Who would want them?

My mother, who, although she was never officially diagnosed, surely had ME/CFS, donated her body to Ohio State Medical School. I've often wondered if any of her tissue was stored. I haven't seen her death certificate (at least I don't remember seeing it) but I understood that what killed her was cirrhosis. She also had in the last few years of her life breast cancer (lymphoma) and myelodysplastic syndrome.

I'm hoping for a heart attack.

Now I've read a little about Antisynthetase Syndrome, another medical condition about which little is understood. I hope that the immunosuppressive therapy helps you.

I always appreciate your thoughtful, articulate posts. In the above post, at the end, I like your kiosk joke, grim as it is.

 

[Lisa108]

Hi @Tina, I do hope very much that there never will be the need for you to be autopsied.
I just remembered reading about a young ME/CFS sufferer who died and whose brain and spinal column were donated to the Ramsay Foundation ("an charity investigating the causes of ME").
It's at the end of this article.

Having said that, I hope that your new treatments will work out for you.
Kind regards, Lisa.