RIP Jennifer Frey

That Steve Jobs was able to transplant shop was an indictment of the country's medical system, IMO.

 

There are plenty of doctors who think your unwillingness to play god is quaint

 

When you want it, you want it every single second of every single minute of every single hour of every single day ...

I've made a decision to stop but that could change in 5 minutes if I really wanted to indulge.

No amount of counseling or therapy or rehab will help. It's wasted motion.

 

How'd you like to be the physician for someone on the waiting list trying to decide whether to accept an available organ? I was astonished to learn that lots of livers are refused:

Lai, Feng & Roberts, Gastroenterology, 2012.

 

Gee, I know a lot of people don't like liver, but . . .

 

I would assume that at least some of those refusals came because the patients were too sick to withstand the surgery. My dad had a kidney transplant and was actually second in line for the kidney he got, because the person in front of him was sick (the flu, I think). I'm pretty sure the protocols are different for different organs - for livers you have to be pretty close to death to actually get a liver, whereas kidney transplant candidates can stay on dialysis.

My dad had to be interviewed and show the ability to pay for at least some of his post-surgery meds before he was approved for the kidney list.

 

My girlfriend's sister came down with MDS, about a year before Robin Roberts at ABC did.

There were several levels of insanity with this, including her sister's refusal to learn anything at all about what was wrong with her. She just wanted to get out of the hospital, and be told by the doctors that it was okay to keep drinking.

Her bone marrow went for the trifecta - stopped producing white blood cells, red blood cells and platelets. Infection, anemia and bleeding ensued.

None of her doctors suggested testing her blood relatives (mom and two sisters) for a possible bone marrow match and transplant. That really was her only hope.

Then she heard what Robin Roberts was doing to recover. Couldn't understand.

The family didn't communicate worth a shit either. The sister kicked them all out of the hospital room when the doctors came in, because she didn't want anyone in the family to hear a doctor tell her to stop drinking.

None of them looked up details of MDS on the web either. I was looking stuff up, and my girlfriend told me to stay out of it.

Last week of her life, I remember her exclaiming "No one ever told me this would kill me!"

I really can't put my reaction to that comment in words, mainly because I wasn't allowed to say anything. So, I guess it was just a silent scream in my head.

I wanted to yell at her, but hell, she was too far gone, hopeless and pitiful. I wanted to scream at the family too, half of whom weren't there.

And when she died at home, and hospice got other people to come and sign the official paperwork, two people from the funeral home came, and my girlfriend and her mother disappeared upstairs saying they couldn't deal with that, so could I help?

Stretcher and body bag. Of all of us family, of which I only considered myself tangentially a part of because of how I was muted, I got to be the last to see any part of her sister in human form:

Part of her blonde hair that was sticking out of the body bag's zipper.

Yeah. I feel for anyone who goes off the deep end, and most everyone around them too. Quite often people just don't know what to do.

I've been through a lot in life, but the above was one of the most hellish, protracted experiences.

I hope to not see anything like that again. And I hope that I, myself, don't do it to loved ones.

You never know.

Goodnight, everyone.

 

Damn that is tough to deal with, and you are due some good kharma. Hope gf's parents and siblings at least thanked you.

 

Damn, brother ...

 

One thing that's real clear to me
No one dies with dignity
We just try to ignore the elephant somehow ...

-- Jason Isbell, "Elephant"

 

It really is crazy how an alcoholic can't understand why you even want them to change. My dad is an alcoholic and a smoker and one of those annoying, I am quitting after this pack or insert the 1st day of whatever month kind.