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Posted on 4/8/24 at 10:46 pm to Napoleon
This sucks man. Any chance you were loosing Advils?
Posted on 4/8/24 at 10:50 pm to Shite_kicker
A few thoughts...
You are very young (for renal failure). Long term dialysis is death procrastinated. You only have so many access options for a dialysis catheter and eventually you run out.
Dialysis is time consuming and affects quality of life. 3 days week at clinic for multiple hours in the company of people you dont know makes it hard to have a life. Think work, vacation, camping etc....
Strike while the iron is hot. You have live donors that are willing. Start the testing asap and push for that treatment option. Being on the donor list takes awhile and you have to be sicker. Your goal should be NOT to get sicker. Plus people have a sympathetic response now but where will they be in 5 years if you need one and one is not available? And not to be morbid but the one that matches you genetically could die in an auto accident tomorrow. Start the process now. You have a lot of life left.
Wishing you the best and sending good juju your way.
Shite_kicker- "the brand name on the machine is nx stage" That sucks for your family. I love nxstage, it's the best option for CRRT and had high hopes it would free people from the chains of dialysis clinics. Hate to hear in practice patients are struggling more with it at home.
You are very young (for renal failure). Long term dialysis is death procrastinated. You only have so many access options for a dialysis catheter and eventually you run out.
Dialysis is time consuming and affects quality of life. 3 days week at clinic for multiple hours in the company of people you dont know makes it hard to have a life. Think work, vacation, camping etc....
Strike while the iron is hot. You have live donors that are willing. Start the testing asap and push for that treatment option. Being on the donor list takes awhile and you have to be sicker. Your goal should be NOT to get sicker. Plus people have a sympathetic response now but where will they be in 5 years if you need one and one is not available? And not to be morbid but the one that matches you genetically could die in an auto accident tomorrow. Start the process now. You have a lot of life left.
Wishing you the best and sending good juju your way.
Shite_kicker- "the brand name on the machine is nx stage" That sucks for your family. I love nxstage, it's the best option for CRRT and had high hopes it would free people from the chains of dialysis clinics. Hate to hear in practice patients are struggling more with it at home.
Posted on 4/8/24 at 11:14 pm to Pizza Dan
quote:
Get the transplant. You are young and there are plenty of folks on here depending on you for repair advice
Yes. We love you, dude! Stick it out and get that transplant immediately whenever you can.
Posted on 4/9/24 at 12:36 am to Napoleon
1 in 3 people die within 1 year of starting dialysis. Half are dead within 5 years. Obviously most of those people have other significant comorbidities, but you would be dumb (no offense) not to accept a transplant if available.
Posted on 4/9/24 at 1:47 am to deltaland
I got the carhertor installed today. Painless procedure. Everything went well.
Going to do dialysis and switch to at home dialysis. I'll have family begin being tested for donor within a month. I'm meeting with a consultant for that. There is testing. But I've had family with type A and O blood volunteer. So hopefully I get a kidney.
I have a good friend who went through all this and has had his kidney 9 years now. But he was in dialysis before. Knowing how he dealt makes it easier.
.
I'm comfortable right now. I mean I have extra hardware sticking out of me but I'm alive. Oddly I feel better too. I feel stronger already.
Thanks for the positivity guys.
Going to do dialysis and switch to at home dialysis. I'll have family begin being tested for donor within a month. I'm meeting with a consultant for that. There is testing. But I've had family with type A and O blood volunteer. So hopefully I get a kidney.
I have a good friend who went through all this and has had his kidney 9 years now. But he was in dialysis before. Knowing how he dealt makes it easier.
.
I'm comfortable right now. I mean I have extra hardware sticking out of me but I'm alive. Oddly I feel better too. I feel stronger already.
Thanks for the positivity guys.
Posted on 4/9/24 at 4:30 am to Shite_kicker
quote:
The POS at home dialysis machine my dad uses, the brand name is nx stage.
Dang we had a completely different experience.
We did nxstage in home hemo for about 6 years. Did Baxter peritoneal for about 14 years.
Both machines were awesome, considering.
Posted on 4/9/24 at 4:51 am to jennBN
quote:
Hate to hear in practice patients are struggling more with it at home.
Our experience was that both in home peritoneal and in home hemo are serious clinical undertakings.
We had great training and followed it to a T.
It was a lot of work and if you half-arse it you’ll get half-arse results.
There are no cutting corners.
I wonder if that poster’s dad was doing nxstsge that created its own dialysate. We knew a number of people who had trouble with that process. We never did it, always had boxes and boxes of it delivered.
Posted on 4/9/24 at 4:56 am to Napoleon
Good to hear, Nap!!
Keep the great approach mentally.
Swimming in natural lakes, and oceans is probably the only thing you will be limited from.
When our son was on PD, we bought him a dry suit from a guy in Europe so he could go to the beach and get in the ocean.
It was a funny experience, because it fit him like a glove, and when he walked in the ocean, the air trapped inside, the suit, bubbled up around his shoulders and neck, and made him look bodybuilder lol.
He was I think 10 or 11 at the time and would run in the water and do an impression of the Hulk.
Keep the great approach mentally.
Swimming in natural lakes, and oceans is probably the only thing you will be limited from.
When our son was on PD, we bought him a dry suit from a guy in Europe so he could go to the beach and get in the ocean.
It was a funny experience, because it fit him like a glove, and when he walked in the ocean, the air trapped inside, the suit, bubbled up around his shoulders and neck, and made him look bodybuilder lol.
He was I think 10 or 11 at the time and would run in the water and do an impression of the Hulk.
Posted on 4/9/24 at 9:22 am to FieldEngineer
quote:
Doesn’t sound very unknown, baw
How the hell did you find that?
I remember OP posting about sky high BP before because I've always been very aware of my own BP. So I just googled "napoleon blood pressure tigerdroppings"
Posted on 4/9/24 at 9:25 am to Napoleon
Good to hear! You are a solid guy and I wish nothing but the best for you and your family and hope you are able to make as full a recovery as possible and have a long life with lots of loved ones around.
Also my dryer is making this weird noise...
Jk.

Also my dryer is making this weird noise...
Jk.

Posted on 4/9/24 at 9:54 am to Gideon Swashbuckler
quote:
Rhabdomyolysis happened
Of course, but they couldn't figure out the cause. He has been an endurance athlete all his life and used to train on Lance Armstrongs team in Europe. Running contributed, but there were other things that contributed to his situation.
He also popped ibuprofen like candy, probably took corticosteroids before the race and has doped in the past, so who knows.
Posted on 4/9/24 at 10:20 am to Napoleon
Sean Elliott and Alonzo Mourning played in the NBA after having kidney transplants
Posted on 4/9/24 at 10:27 am to Napoleon
Sad reality of the country we live in. When I hear about a major or long term health issue my mind goes to how bad will this impact a person financially and all the bullshite that comes with it (copay, max out of pocket, pre authorization, out of network docs, surprise billing frick ups, etc)
This post was edited on 4/9/24 at 10:29 am
Posted on 4/9/24 at 10:34 am to Napoleon
quote:
The only negative was the incredibly hot doctor did an anal probe of me. I had two hot 20 something Tulane women playing with my but. It was embarrassing
Don’t worry. They hated it more than you.
quote:
Not diabetic. I had bad blood pressure for years
quote:
don't look sick
quote:
not acting sick
Of course, this is not a lecture, a “what you should have done,” or anything like that. I’m very sorry to hear of the circumstances you find yourself in. I’ve met a few dozen young folks like yourself (and younger, sadly). Some on dialysis for their lives. Some got transplants and got off. Some take it seriously and do great. Some never realize the importance of it and bounce in and out of the hospital every few weeks and don’t realize it’s their own decisions that cause the problem, not that dialysis is just unpredictable/crazy (cutting time short even by 15 minutes, eating a poor diet mostly).
But the “for anyone out there reading this who needs to hear it” crew:
Check your blood pressure. The first symptom of high blood pressure is usually a heart attack, a stroke, or needing dialysis about 10 years after it could be modified and the situation prevented (sometimes it’s difficult to control. Sometimes those things are inevitable anyway. Again, not an admonishment to the OP but a “here’s what I do every day that I wish some people realized the importance of, because it drives bad outcomes unfortunately often). Most people tend to think they’ll feel “a little” bad when they start to get “a little” sick, but unfortunately it’s much more akin to a graph of “falling off the table” once 90% of the damage is done.
Another thing I’ll often liken BP or diabetes (not your case, but the “I feel fine” can be very similar) is oil changes in a vehicle and checking for leaks. If an engine is a quart low on oil, it’s going to run absolutely fine (until it doesn’t). And if you keep it topped off/full, it’s not going to run any better. You can have one a quart low every time you change the oil. You can change seals/hoses or even just top it off regularly. But between the two options. I want the latter when it hits 300K miles.
Posted on 4/9/24 at 2:47 pm to tunechi
100% this is my fault. I had plenty of warnings of my blood pressure. But the doctors still can't explain why my creatinine and bun levels are so crazy.
Yes hypertension led here but like the doctor said. I look like a healthy 40 year old. I've been dieting and eating good.
But the last few months I've had odds swelling and weakness.
Last summer I was in my best shape since high school.
Too little too late.
Yes hypertension led here but like the doctor said. I look like a healthy 40 year old. I've been dieting and eating good.
But the last few months I've had odds swelling and weakness.
Last summer I was in my best shape since high school.
Too little too late.
Posted on 4/9/24 at 2:49 pm to danilo
My max out of pocket is $4500 we good.
Posted on 4/9/24 at 2:56 pm to Napoleon
Sorry to hear this bro.
My brother went through something similar a couple years. Years of really high blood pressure despite him going to the gym several times a week. He saw several different doctors and tried numerous medications to get his blood pressure under control, even giving blood often to lower the volume of blood and hopefully the pressure. It eventually ruined his kidneys.
Fortunately, my sister was a perfect match (I was the first to try, but they disqualified me for a couple of what I thought were minor medical issues) and he had a transplant three years ago. He’s doing great now.
Good luck and God bless.
My brother went through something similar a couple years. Years of really high blood pressure despite him going to the gym several times a week. He saw several different doctors and tried numerous medications to get his blood pressure under control, even giving blood often to lower the volume of blood and hopefully the pressure. It eventually ruined his kidneys.
Fortunately, my sister was a perfect match (I was the first to try, but they disqualified me for a couple of what I thought were minor medical issues) and he had a transplant three years ago. He’s doing great now.
Good luck and God bless.
This post was edited on 4/9/24 at 3:02 pm
Posted on 4/9/24 at 2:58 pm to Napoleon
Has your creatinine been elevated or did it go from normal range to extremely high all of the sudden?
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