Permanently Damaged Kidney

[stealth2]

What is remarkable is that, even in 2024, women are still underrepresented in clinical trials for medicines that address health issues that largely affect women.

I often wonder how they run clinical trials for "female troubles" without women... LOL

 

[quincy]

I often wonder how they run clinical trials for "female troubles" without women... LOL

Men don’t really like to think about female troubles.

 

[stealth2]

Men don’t really like to think about female troubles.

True.

 

[not2cleverRed]

We asked her surgeon if her kidney was permanently damaged, and he described the lower portion of her kidney as "mush."

Did he actually use the term "mush"? Or does she have medullary sponge kidney?

Medullary sponge kidney is a (rare, 1 in 5,000) congenital condition, that can increase one's risk of UTIs and kidney stones. (A relative has it, and had to go through multiple surgical procedures last winter for his kidney stones.)

Not disagreeing that your wife's doctors dropped the ball.

Medical malpractice is difficult to prove. Get an initial consult with lawyer just to explore your options.

 

[not2cleverRed]

Men don’t really like to think about female troubles.

Truth be told women would prefer not to think about "female troubles".

@stealth2 and even the studies that include women are skewed. (My mother and her older sister were participants in the Women's Health Initiative.)

 

[Berick]

Did your wife present any symptoms beyond the UTI? A kidney stone as you describe would generally cause excruciating pain. I know this pain, and my stones, while large, were nowhere near as large as you describe your wife experiencing.

Despite having a high pain threshold, she had been dealing with, and complaining about, pain for several years. The MDs were convinced that the pain was a result of the UTI, and not until the 7th year did her new urologist feel it was worth looking into a possible underlying cause.

 

[Berick]

You say your wife had been experiencing problems for 7 years. Why didn’t she seek out help/an examination from another doctor earlier?

How long ago was the kidney stone finally discovered and how long ago was the surgery?

After a couple years of UTIs she asked if she could at least have a phone appointment with her urologist who just advised her get another urinalysis and call the advise nurse if she had any questions. After that came back positive, she just prescribed another round of antibiotics and told here there was no underlying condition to be concerned about. She asked her GP if he could refer her to another urologist who instead referred her to an OBGYN who prescribed a topical cream. It was yet another several years before her GP finally referred her to another urologist, who immediately ordered an ultrasound. She liked and trusted her GP, and despite her concerns, continued to trust his medical opinion.

The ultrasound was done the middle of last year and her surgery and subsequent hospital stay was in Jan or this year.

 

[Berick]

Did he actually use the term "mush"? Or does she have medullary sponge kidney?

Medullary sponge kidney is a (rare, 1 in 5,000) congenital condition, that can increase one's risk of UTIs and kidney stones. (A relative has it, and had to go through multiple surgical procedures last winter for his kidney stones.)

Not disagreeing that your wife's doctors dropped the ball.

Medical malpractice is difficult to prove. Get an initial consult with lawyer just to explore your options.

I put mush in quotes because when I asked her surgeon if my wife's kidney was permanently damaged, he said, "Yes, the lower portion of her kidney is basically mush."

 

[quincy]

After a couple years of UTIs she asked if she could at least have a phone appointment with her urologist who just advised her get another urinalysis and call the advise nurse if she had any questions. After that came back positive, she just prescribed another round of antibiotics and told here there was no underlying condition to be concerned about. She asked her GP if he could refer her to another urologist who instead referred her to an OBGYN who prescribed a topical cream. It was yet another several years before her GP finally referred her to another urologist, who immediately ordered an ultrasound. She liked and trusted her GP, and despite her concerns, continued to trust his medical opinion.

The ultrasound was done the middle of last year and her surgery and subsequent hospital stay was in Jan or this year.

The ultrasound was done the middle of last year and her surgery and subsequent hospital stay was in Jan or this year.

Thank you for answering our questions, Berick.

Because of what you said (bolded above), your wife probably does not have the luxury of waiting much longer to see an attorney, if she is interested in exploring a medical malpractice suit.

 

[not2cleverRed]

I put mush in quotes because when I asked her surgeon if my wife's kidney was permanently damaged, he said, "Yes, the lower portion of her kidney is basically mush."

Thank you for clarifying.

 

[Taxing Matters]

it was not until 1993 that Congress passed a law requiring that women be included in NIH clinical trials.

Unfortunately, even private liberal health researchers (like private medical schools and private foundations) did nearly all their research using white males until pretty recently, and unless it was specifically targeted at older people, seniors often weren't in that set either. That some rearchers still do that is disheartening, to say the least. Particularly because highly educated members of the medical professions like doctors, nurses, etc, have known for quite some time that bodily differences like sex, age, race, etc do have an impact on the prevalence and effective treatment of many medical conditions, including conditions that for centuries were considered to be the same for everyone like heart disease, for example. My mother was a victim of that. She had really severe blocked arteries that he doctors never diagnosed because she did not show the typical symptoms. She was just a bit younger than I am when she died from that. My sister and only found about it from the autopsy. There was no legal action for me to bring because the doctors had met the standards set in the medical profession. The problem was that the standards didn't take into account the effects of heart disease on different groups of the population.

 

[quincy]

At least there might be some positive changes to come in the future. There will need to be diversity among the participants in certain clinical trials if researchers/companies want FDA approval, under a law that was signed by President Biden in 2022. It will take time to implement.

Here is a link to a June 26, 2024, press release on FDA’s latest guidance on diversity action plans:

https://www.fda.gov/news-events/press-announcements/fda-guidance-provides-new-details-diversity-action-plans-required-certain-clinical-studies