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Old 03-21-2018, 01:25 PM
 
Location: Alexandria, VA
10,718 posts, read 19,066,981 times
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That's what the last half dozen (or more) threads have been about.
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Old 03-22-2018, 03:12 AM
 
33,148 posts, read 39,115,002 times
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Quote:
Originally Posted by jaminhealth View Post
So many doctors DON'T know it all. They don't study outside their drug world. Big factor why I lost so much faith in them.

Everyone goes on their paths and decides what to put in their bodies.
Jammin you may believe that all your supplemental pills and potions are responsible for your 80 years of age but i believe you are deluded and blinded by your distrust of modern medicine and you would be at that age even if you took no supplements and relied solely on a healthy diet, i have no doubt had i not taken medications prescribed by my doctors i wouldnt be alive today and as such i have a lot of faith in what they prescribe and a lot of gratitude for their concern about my well being.
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Old 03-22-2018, 08:14 AM
 
Location: SW Florida
9,156 posts, read 6,342,296 times
Reputation: 12722
Quote:
Originally Posted by jambo101 View Post
Jammin you may believe that all your supplemental pills and potions are responsible for your 80 years of age but i believe you are deluded and blinded by your distrust of modern medicine and you would be at that age even if you took no supplements and relied solely on a healthy diet, i have no doubt had i not taken medications prescribed by my doctors i wouldnt be alive today and as such i have a lot of faith in what they prescribe and a lot of gratitude for their concern about my well being.
Hear, hear!

And just wanted to let you know my prayers and positive energy are being sent your way, and I wish you the best at this difficult time in your life.
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Old 03-22-2018, 10:36 PM
 
33,148 posts, read 39,115,002 times
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Originally Posted by cb at sea View Post
Hubby has been on dialysis for almost 2 years now. We knew when it was time...he began to get pretty sick and nauseated...rapid weight loss, and bad color. Fatigue....terrible....his body was poisoning him. The 1st treatment was short and didn't run much blood...but after even 1 1/2 hours, he felt SO much better! Just getting some of the toxins out helped immensely.

As far as "supplements"...talk to your nephrologist before you take ANYTHING. Some things are NOT good for kidney patients at all...you don't want to do any more damage at this point.
What changes in diet are required for those with kidney failure?
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Old 03-23-2018, 07:41 AM
 
Location: Alexandria, VA
10,718 posts, read 19,066,981 times
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Fluid restriction/limitation is a big one! Talk to your Dr., there are many vegetables for instance that Drs. don't want you to eat because of the vitamins they contain.
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Old 05-16-2018, 10:35 PM
 
Location: THE D.C.
105 posts, read 47,619 times
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I just had a kidney transplant 2 weeks ago. My GFR was 9 and creatinine was 5.3 but I had not started on dialysis because I was planning on a preemptive live donor transplant. Thankfully someone stepped forward (a stranger) and offered me his kidney. I did not have any limitations and don't see why starting dialysis would mean you couldn't get in/out of your car. Many people live perfectly normal lives on dialysis, including travel. You just have to set it up in advance to do the dialysis wherever you travel. 2 weeks before my transplant, I traveled 5000 miles and went snorkeling, swimming, hiking and biking and did fine. My symptoms were cramping in my legs, hands and feet, all over itching, nausea, headaches and loss of appetite, but I managed around them by resting when I needed to and drinking a lot of water. Don't let this disable you - 90% is attitude!
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Old 05-16-2018, 10:47 PM
 
Location: THE D.C.
105 posts, read 47,619 times
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Quote:
Originally Posted by Travelassie View Post
I can well understand that, they do talk up PD as something that could go on a night while the patient sleeps, but seeing that the fluid must be changed at least a couple times during the PD, I'd think that might interrupt one's sleep, and I'm not sure how well I'd sleep anyway hooked up to a machine.

Also true about the very real possibility of a peritonitis and complications from PD- that would be my fear as well.
The machine does all of the exchanges for you. You have a small catheter in your abdomen and when you go to bed, you load up the machine with the supplies and it runs all night, you don't even notice it. It does all of the dwelling of the fluid and the exchanges. When you wake up, you unhook and live your day. It's the most like natural kidney function. But at 20%, you still have a way to go before dialysis.
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Old 05-17-2018, 01:11 AM
 
33,148 posts, read 39,115,002 times
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Quote:
Originally Posted by AnnSmithJones View Post
My symptoms were cramping in my legs, hands and feet, all over itching, nausea, headaches and loss of appetite, but I managed around them by resting when I needed to and drinking a lot of water. Don't let this disable you - 90% is attitude!
I have the cramping big time, the itching is driving me crazy, major edema in legs, nausea in the form of a general feeling of ill health all the time and i'm full of water from head to toe.. While the docs tell me i can go for some time at 15-20% kidney function the symptoms are such that i;d like to address the possibility of improvement.
Today i see the vascular surgeon to review the findings in my recent Doppler imaging and to talk about getting a fistula implanted for the eventual hook up to a dialysis machine.
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Old 05-18-2018, 03:07 PM
 
1,092 posts, read 917,910 times
Reputation: 1663
Default And that's the problem...

Quote:
Originally Posted by suzy_q2010 View Post
Frankly, you do not know what doctors know, and most of what you think you know is wrong. No one with kidney failure should take any supplements without consulting his nephrologist first.
While we don't know what doctors know, too many of us are afraid or embarrassed to just ask them how much training in alternative or natural medicines they have had. If more people would do this they would discover that most doctors have little to no knowledge beyond what the pharma companies tell them or what they picked up in school years ago or what their reference books say. This is one of the reasons we have an opioid crisis in this country. Pharma companies told doctors that opioids were good for long term management of pain, even after they knew this was not true.

I haven't taken any natural or alternative treatments during my journey with PKD. I couldn't find enough research on them to make me feel confidant in their use. Which is not surprising because there isn't a lot of money to be made in researching something you can't patent.

On the other hand, I had a GP who was also a nephrologist, who never met a test she didn't like, and had a big pharma pill for anything that ailed you. I eventually stopped seeing her after she came up with 6 or more tests she wanted me to do, which would have had me running all over town, (Gee, you haven't had a stress test in a while...) and I now just deal with my transplant team every 3 to 6 months depending on how I'm feeling.

As I said before, YOU are in charge of your health and medical treatment. Do your research, roll the dice, and take your chances by doing what you feel is right. That's really all anyone of us can do because of the lack of really good unbiased information about alternatives to conventional treatment.
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Old 05-19-2018, 03:32 AM
 
33,148 posts, read 39,115,002 times
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Quote:
Originally Posted by Beaconowner View Post
As I said before, YOU are in charge of your health and medical treatment. Do your research, roll the dice, and take your chances by doing what you feel is right. That's really all anyone of us can do because of the lack of really good unbiased information about alternatives to conventional treatment.
I'm not rolling the dice on my life and i put much faith in what my team of doctors prescribe for my maladies, the thought that some would ignore professional medical advice and succumb to cure all products on infomercials and hearsay on forums is astounding.
Some reading on the issue = https://skeptoid.com/episodes/4589

Last edited by jambo101; 05-19-2018 at 03:42 AM..
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