Prayer request

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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.
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. Thank you for the prayers and kind words. We're both exhausted at this point. Physically, mentally, spiritually.

When I say we can't catch a break, I truly mean it.

We were in the waiting room at Mayo and I get a phone call from my dad's assisted living facility, which is on the opposite side and end of the state from where we are at Mayo. Florida's a big state. He fell. No obvious bruises/scratches, but he wasn't doing well. He had his haircut there but his balance was so far off that he was slumping to one side in the barber's chair. Off to the ER for him.

He has a shunt due to normal pressure hydrocephalus, but in recent months had been scratching and digging at it due to anxiety. He's been a picker all his life. He managed to get the skin infected around the shunt. He also managed to damage the shunt tubing underneath the skin. His persistent digging turned it into an infection in his CSF, so now the infection was in both in his spine and brain. Lovely. They removed the shunt and have a temporary drain in place, loads of antibiotics being pumped into him. At some point we'll install a new shunt in a more protected area, but we have to clear the infections first.

While the neurosurgery team I have in place for him is very good, the other ICU doctors at that hospital are dangerous. It's a fecal matinee. Doctors trying to give him blood thinners when his blood is already excessively thin. Doctors trying to prescribe him meds he hasn't taken in over a decade, doctors referring to conditions which he hasn't had in over a decade. Doctors have already twice tried to give him two different medications he's allergic to. Fortunately I have the nursing staff calling me each time orders are put in and run it by me before doing it.

Also, him being himself, is being very uncooperative. As I read through his charts tonight, it looks like he pulled out all of his IVs and started to pull on the drain coming out of his brain (EVD), earning him restraints for the night. ::sigh::.

Oh, and if that wasn't enough, we had to fire the property manager at my office. She's been with us for 20 years but she's been going downhill mentally over the past 3 years and refused to get it looked into, angrily insisting everything is fine. But she's been anything but fine. Deposits going into wrong accounts, going to the wrong banks for things, paying taxes 2x-3x in a row, creating work orders from e-mails from 6+ months ago and were solved back then, etc. She became a liability. We kept her around as long as we could. So guess who gets to wear that hat now? Yep, me. As if working full time already + the medical issues weren't enough.

Both my fiancé and I were planning on heading back to our home last Sunday, but I finally wore my body out to where my immune system finally gave up. I'm usually never sick, but I somehow picked up a cold and just physically couldn't pack up all of our things and do the drive back, so we're stuck over here for now. She's also picked up the cold as well.

She's done with Round 1 of testing at Mayo, but no follow-up from anyone there yet. They drained more fluid out of her pleural space, but it didn't help her breathing; none of the 2 prior drainages did either. They did at least take samples of the fluid, so hopefully we'll at least know what it is. I'm hoping we can then figure out why it's there and hopefully find a way to fix it. They also ran tests, which we've been begging our doctors to do for the past 6 months. So there's some progress(?) I think? I still want to get Mayo's nephrology people to take a look over the case as well. Things just don't add up to what we see with other kidney patients, especially those on dialysis. Her body doesn't even react to dialysis the way all of the other patients in the clinics are.

So, that's where we're at. We both need a break. Both her and my dad need healing. I probably could use some of that too after burning the candle at both ends for so long. And just like before.. here I am at 4am, wrapping up work for the day.. off to catch some sleep before the phone starts ringing again.
 
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.
 
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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.
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.
 
Wish you had some family members that could share your loads. I dealt with both my parents illnesses, so I have an inkling of what you are going through. Then my brother was so ill in Tampa, FL and me in the Heartland, I tried to help by long distance, but he wouldn't cooperate. I finally talked his son into going and getting him and moving him to the Heartland.

Life is hard. I will pray for you and your family. Keep the faith.
 
Again, thank you everyone for the kind words and prayers. It's been...hard.

On a positive note, as of 5pm today my dad was discharged from the hospital. His Assisted Living place wasn't willing to take him back yet even though his neurosurgeon, hospitalist, and primary doctor all looked him over and said he's perfectly fine to go back there. Which posed quite a problem. I managed to work through that and am going to turn it into a positive. It took some work but he was transferred to an Encompass inpatient rehab. These are NOT nursing homes where people are just waiting to die. He'll be getting intensive PT/OT/Neuro therapy for 5 hours each day. Brand new facility. And so far, all American staff.

My fiancé and I drove down tonight to help him with the transition, as well as take the load of his wife. It's been 474 days since his brain haemorrhage. And unless his wife was sick with something contagious, she has shown up to his bedside every...single...day. They didn't have a good relationship when everything was normal, but she's really stepped up to the plate since then.

On my fiancé's side of things... it's been radio silence from Mayo. We were busy with them for about a week, then...nothing. No communication, no follow-up. Even with multiple calls. Mayo's dialysis center completely dropped the ball. They even gave us dates and times they said they had a chair waiting for her. BUT when we showed up, nope, nada. She wasn't on their schedule. They claimed they never received records despite her home facility sending them over twice, with confirmations. They told us to go back to her home centre for dialysis....which was 4+ hours away(!) We were told this at 5pm. The nearest dialysis center we could get in easily was 2 hours south of Mayo, so that's where we camped out for 20 days until we finally decided to come back home since we weren't hearing anything. Not to mention costs were stacking up. 20 days on a rental car adds up, along with hotels and such.

We reached out to a patient advocate yesterday who was very dismayed by this, so I suspect that will be cleared up soon.

Dialysis has been hard on her. Her body reacts to it like she shouldn't be on dialysis. She always gets leg and foot cramps, headaches (sometimes severe), dizziness, nausea, and sometimes vomiting during the sessions. Even the nurse commented this week that she's never seen anyone have reactions to dialysis like she has. Afterwards she feels terrible and the headaches and cramps often go all night long until sunrise. Monday's session was particularly bad and I brought her straight home, held her, and we both cried on the couch.

We also highly suspect her nephrologist is purely in this for the $ and not actually there to help her. When he put her in the hospital, he billed 35-65 minutes PER DAY she was in hospital. But he (nor the hospital) did anything. 6 days of just sitting there, 2 procedures which could have been done outpatient. There were tests he promised the hospital would do, only for us to find out this hospital couldn't do them there and the main hospital only does them as outpatient procedures. There's no way he spent 5+ hours reviewing her case in that time.

So, that's where we are. Prayer is greatly appreciated.

So, please continue to pray for us. Seeing someone you love go through such misery, along with not being able to get the help you need, is torture. If she didn't have the breathing issues, I would have already put her on a plane for Japan or South Korea. Unfortunately, coordinating that would require a pulmonologist and we've seen 5 of them since this started. Only the Mayo one did tests, and since ghosting us...well... we're stuck here for now.
 
That's great news on your Dad. On your Fiancee, wow! I can't believe Mayo dropped the ball like that. They are supposed to be among the best in the world. I really hope they get their act together soon and you can catch a break. I can't even fathom living through all the drama you have. The prayers will keep coming, rest assured.
 
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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.
 
Asking for prayer again.

We're heading back to Mayo tomorrow afternoon for a week. Follow-up with pulmonology and a new consult with nephrology there. She still doesn't feel well. After 8 months of this stuff, no diagnosis whatsoever on the breathing nor kidney problems. We're hoping Mayo can come up with that and more importantly, solutions.

We miss travelling and our lives. With her breathing issues on the ground, I don't want to risk her on an airliner at altitude. Next month I'm taking her up in a small plane with pulseox on and we'll see how her body handles it. You're never more than 15 minutes away from an airport in Florida, and I can always drop altitude if needed.

I'm finally starting to get some of my own health issues addressed. I've had to put off all of my own issues having to deal with my dad's and fiancé's. Making some progress on the eye issues. I know it wouldn't be a one-and-done with those, but at least today's appointment with a new OD was promising. She was willing to listen and even entertain my rather unorthodox prescription requests. I don't quite think she understands what I'm trying to accomplish at the biological systems response level, but at least she's wiling to play ball. So now it's on me. A trial lens set, and 8 different strengths of contact lenses for me to work through and figure out what works and when.

My dad's on the mend. Back at his assisted living / memory care home. He wasn't doing well for the first few days and I discovered somehow the medications we forced the hospital to stop giving him had somehow followed him there. Getting that straightened out made a difference, and we're actually now at the best, most functional levels he's been at since the 500 days since the hemorrhage happened. I don't think he's ever coming home (he's got to do the work), but at least we're seeing improvement in his condition again. In other news, yes, it's been 500 days. Grueling at times. Yet every single day, we've made sure he's had visitors and his wife or me (or both) have visited him every single day.

Thank all of you for your prayers.
 
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.
 
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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.
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.

My body is...weird. After all I've been put through, it works and functions, but doesn't do so normally. So, the "right" way for me can often be the 'wrong' way according to convention. My body honestly thinks its doing the right thing and will fight any change to correct it. Think of it like a perfectly functional but mis-calibrated thermostat. Trying to make it work according to the textbooks usually ends badly.

With the correct glasses, I can see quite well with even more detail than most people can resolve. But therein lies the issue: the correct glasses. What I actually test out at in an eye exam and what I need are two totally different things. My brain does some unusual pre-processing which acts like an upscaler in video. Trying to get a doctor or optometrist to understand this has been a struggle. I've seen 6 in the past 3 years. 8 sets of glasses made, zero which work for me. I started to see one in Philadelphia last year and he understood it, but with my fiancé's injuries I've not been able to fly back up there to continue with him. My current glasses that I can see out of are 10 years old and in rough shape. I take care of them, but now the coatings are flaking off right in the central field of vision. They weren't exactly great glasses 10 years ago.

My own primary doctor has learned to just let me be over the years. At our visits he'll toss the script pad at me and tell me to write for whatever tests and such I'd like and he'll sign off on it. His reasoning is that despite the odds, I've made it this far. I must know what I'm doing. I don't necessarily feel that way, but I'm still here.
 
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.
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.

This is very disturbing:


In less than two years I can get Medicare and see doctors regularly if I wish. I question if it's better for my health just not to. I made it this far. Until my bike accident 18 months ago the last time a doctor give me a good looking over was in my 20s before I got kicked off my parents' insurance. Since then I've been largely self-employed. Never made enough to afford to see doctors or to buy medical insurance. My standing joke all these years has been that my bike is my health insurance.

I do need quite a bit of dental work. Medicare doesn't pay for that anyway. I'll get that done as soon as I have the money. A dentist is the only medical professional I feel comfortable seeing.
 
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.
 
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.
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 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.

Few doctors recommend fasting to their patients these days but that helps health and longevity also. I'm trying to get into the habit of fasting occasionally. It's easier lately with my current cash flow problem.
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.
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.
 
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