Prayers will be sent.
Make no mistake, you have both been through the wringer and have our prayers. Please don't feel guilty for asking for them, that's what brothers and sisters in the faith are here for! It's our privilege. It's also outstanding you're headed to Mayo. They are supposed to be among the best there is to figure out what's going on and help make it better. Please let us know how it goes.Hi all,
We need your prayers again. 6 months in, and she's still no better. Worse, she's gotten a very strong taste of just how incompetent, greedy, and uncaring the US hellcare system is.
The nephrologist assigned to her at the hospital was a total and complete jerk, a foreigner with a god complex. She refused to listen, refused answer any questions, refused to explain anything. When we were trying to get her to understand that this was an acute injury on top of a chronic condition, the Dr flat out said it was impossible, despite ALL of the other doctors' who saw her saying it was. She was so petty that she told us "If you're going to try to save her kidneys, I'm not going to put her on a transplant list until you come to your senses" and stormed out of the room.
Everything this doctor did was absolutely vile. She loaded her up with meds, which made her very ill, causing her to pass out multiple times in public. The dialysis sessions were excruciating at times, with her screaming and crying in pain. At one point her legs and arms were in full spasm (sticking straight up) in the dialysis chair, she's crying in pain, telling the nurse she wants to stop immediately. The nurse laughed at her and said she'd be back in 30 minutes and left her in pain. It took 3 people to carry her out of the chair and get her back in the car.
Making matters worse, you can't just get a new nephrologist when you're on dialysis! We tried for 6 weeks to get a new nephrologist. NO ONE would take her because she was already being seen by a doctor in the area. We contacted multiple physicians' offices (up to 36 nephrologists) and no one would accept someone from in the area out of "Professional Courtesy."
We ended up having to go to the State regulatory agency to force a transfer. Even then, it took two calls to the State because they #1) Didn't want to give up the dialysis money, wherein they bill her insurance $8k per each session, 3x a week, #2) didn't want to let her go to a different doctor's group. Did I mention the nephrologist owned the dialysis center?
Finally with a new nephrologist and new dialysis center (which the new nephro doesn't own). While he's somewhat better than the last one, he's still not listening. At the very least, the new Dr has changed her session protocol to something less aggressive, the new dialysis center has MUCH more caring and attentive staff, and her sessions are becoming more comfortable.
BUT... she still can't breathe. We've been to 4 pulmonologists in 6 months. The last one was so rude that he made her cry. THAT rude. Again, foreigner (same nationality as the nephrologist), God complex. Refused to answer any questions or explain anything. What floors me is that NONE of the pulmonologists have been willing to run tests! They look at the images, see the kidney dx, and their brains shut off. They claim she can't breathe because of fluid in her pleural space, however draining it doesn't help. In fact, each time they've drained it she's lost additional capacity.
Did you know that the kidneys use 25% of the body's entire oxygen supply? None of the doctors we've seen so far have. ::. They don't understand why I'm so passionate about her breathing issues, when her max breath is barely 1/4 what normal should be. Gee, kidneys need O2! If she can't breathe, neither can they!
Then again, the new nephro put her in hospital last month for 5 days which was a total waste of time and money. Staff didn't even know you needed a stethoscope to take a manual blood pressure! and at one point the meds they gave her caused her to lose consciousness, and despite pushing the nurse call button repeatedly and being told someone was coming repeatedly...no one ever came. After an hour I ripped the charge nurse a new one and had a combined meeting with risk management and the head of nursing a week later.
Our primary doctor is practically besides himself with this. So, he set us up with Mayo Clinic. We're going Thursday.
Please pray that we make it to Mayo, as her health (breathing) isn't great. and please pray that we get actual doctors with functional brains, preferably God's wisdom, at Mayo...and that at least this saga can be behind us. She's sick and tired of being sick and tired, and sometimes doesn't want to live.
and I feel guilty for asking for prayers for myself on this, but I need rest. I'm spent. My life got put on hold in 2022 and I've been caring for others (besides my fiancé) non-stop. and now I need rest for myself.
Thank all of you. You're a wonderful group. While we've never met, your presence and prayers are still very reassuring.
We'll take the progress...one step at a time! We're still here, brother. Keep your chin up and keep fighting the good fight.Some positive news:
My dad's CSF infections appear to have been remedied enough that we're going forward with the new shunt surgery tomorrow morning.
He's.. well... still uncooperative and very confused. Basically back to where he was in March of last year. I'm praying as the infection clears and new shunt does its job that we'll have him back to where was in November which was pretty functional. I'm also praying he'll be able to go back to his assisted living home and not a nursing home.
Fortunately nothing that serious. My eyes work and do what they should. I'm just nearsighted. Not even any real astigmatism to correct or anything else going on.If you end up needing eye surgery, I can whole heartedly recommend Dr. Juan Romero here in NYC. He's a miracle worker! Literally saved my eye-sight. I thank God for his existence.
I went through this with my mother. I still remember the time she went to her doctor about leg pains I think and the doctor tried to push osteoporosis medication on her. I think it was Boniva. The doctor seemed to be a salesperson for big pharma instead of a medical professional. She didn't even get to the primary reason my mother came in. No, just figured my mother should be taking osteoporosis pills given her age and that's it. She dismissed the leg pain thing as "aging". Another time a different doctor gave her Lyrica. Once I read the side effects I told her DO NOT take these pills. She didn't. They weren't even applicable to what she saw the doctor for. Just another case of a doctor prescribing a pill based on your age cohort. These pills are killing us. We need to ban prescription drug commercials yesterday like nearly every other country does.I grew up watching doctor and hospital shows on TV. The doctors were always so kind and concerned for their patients. What a load of crap! I've only come across one doctor like that, and that was waaay back in the 1980's. He left the area shortly after, and I have no idea where he is today.
The vibe that I have been getting is that the practice of medicine is no longer a "profession", it's a business, and there is very little compassion in the healthcare system for the patients--it's all about the money. If you find a doctor, or a nurse with true compassion for the patient, you have found a rare diamond, or a unicorn, because I don't know if they even exist anymore.
lowninstitute.org
As long as people continue to treat their bodies like crap most of their lives, and then want a wonder drug to reverse everything, pharmaceuticals will continue to be prescribed.Our family doctor finally retired in 2024. I knew her since I was a child.
She never prescribed certain drugs due to their ridiculously toxic side-effects.
She was no shill for Big Pharma. Our new general practioner is a young passive-aggressive, inexperienced excuse for a doctor. The other doctor I'm seeing? She's a young shill for Ozempic. Thinks it's a wonder drug. Yeah, I haven't visited her this year, yet. Might just keep it that way.
Don't even get me started on this family of weight-loss drugs. Sure, it's good people have an easier way to lose weight but in life there are no shortcuts. You're still healthier losing weight via diet and exercise rather than a pill. Even better is to have made these habits lifelong when you're young so you don't gain the weight in the first place.Our new general practioner is a young passive-aggressive, inexperienced excuse for a doctor. The other doctor I'm seeing? She's a young shill for Ozempic. Thinks it's a wonder drug. Yeah, I haven't visited her this year, yet. Might just keep it that way.
Yep. 90% of prescription drug use is simply to compensate for poor lifestyles. My father did that with Lipitor. He would brag about his cholesterol numbers. My mother told him the only reason they're good is the pills you're taking. He had just about every listed side effect of Lipitor before he died. He probably would still be alive if he simply went the route of diet and exercise.As long as people continue to treat their bodies like crap most of their lives, and then want a wonder drug to reverse everything, pharmaceuticals will continue to be prescribed.