U.S. CitiesCity-Data Forum Index
Go Back   City-Data Forum > General Forums > Health and Wellness
 [Register]
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
View detailed profile (Advanced) or search
site with Google Custom Search

Search Forums  (Advanced)
Reply Start New Thread
 
Old 03-19-2018, 01:45 PM
 
Location: Bella Vista, Ark
67,528 posts, read 77,272,551 times
Reputation: 36726

Advertisements

Quote:
Originally Posted by jambo101 View Post
I saw my nephrologist this morning and ran the idea of grape seed extract by her, she laughed and said dont you dare take that or any other supplements,she said you are right on the edge of having no kidney function at all dont start adding unknown substances to the medications you are already taking,she went on to say while grape seed extract may have some marginal benefits in ridding the body of excess fluids in healthy people jim you are far from healthy.
Thanks so much: you have saved us from talking to hubby's PC. I will take your doctors word for it. I know we can get wound up in thinking these natural supplements are ok, but are they really?
Reply With Quote Quick reply to this message

 
Old 03-19-2018, 01:49 PM
 
32,554 posts, read 37,780,092 times
Reputation: 27599
Quote:
Originally Posted by jaminhealth View Post
This is a prime case where IF both worlds worked together, one could appreciate much improved health. It's tragic that allopathic MD's are so closed to what has been around for centuries. Grapes for centuries. From the beginning of times.
I was willing to give this grape seed stuff a try thus the reason for asking my doctor about it,
So think i should have said to my doctor stuff all your medications i was told by reliable sources online that i should be taking a myriad of odd supplements ,you doctors dont know what you are talking about and are in the pay of big pharma.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 01:50 PM
 
Location: Bella Vista, Ark
67,528 posts, read 77,272,551 times
Reputation: 36726
Quote:
Originally Posted by Mightyqueen801 View Post
Just a note. You "go the dialysis route" when your kidneys no longer function/reach about 10% of function, or you die. My mother's kidneys have been failing for decades, but it wasn't until she was 86 that the doctor said she only had a few months of function left and they put in the fistula in anticipation of dialysis.

My mother's mother also had PKD but she lived until 94 and never went on dialysis.

A dark yet positive side of being on dialysis is that if other aspects of your health become too much, you can choose to discontinue dialysis and die within a few days. It's relatively easy from what I understand You go into a coma.

If you remember the author James Michener, that's what he did. He was 90 and had been on dialysis but was breaking down in other ways, so he decided to discontinue. He wrote a public goodbye saying he'd had a good life since being left on Mrs. Michener's doorstep in a basket as a baby and thanked all his readers. Three days later he was gone.
the exact % may depend on the figures your doctor uses or his doctor may have just thrown that % out to assume him he had nothing to be really worried about. I do know as long as one kidney is functioning he will be fine. I also do not know if he would opt for dialysis. Right now we will cross that path when we com to it.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 01:58 PM
 
Location: Santa Monica, CA
15,896 posts, read 4,991,415 times
Reputation: 10856
Quote:
Originally Posted by jambo101 View Post
I was willing to give this grape seed stuff a try thus the reason for asking my doctor about it,
So think i should have said to my doctor stuff all your medications i was told by reliable sources online that i should be taking a myriad of odd supplements ,you doctors dont know what you are talking about and are in the pay of big pharma.
No, I don't think you would be saying that to your doctor. That's WHY I choose to see functional MD's in the first place....our system is lopsided as far as I'm concerned. Grapes have been around long long before any of these doctors or us. But what the allopathics load their patients up on are drugs made in labs. And hardly from foods, although there are some food grade pharma drugs out there. They are trying to get in on the act with foods in their blends.

I wish you well.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 03:01 PM
 
989 posts, read 873,811 times
Reputation: 1511
Default Been there done that.

I have PKD. I was on dialysis for 6 years. There really wasn't anything I could do to slow or stop the progression of this disease.

I don't like going to DR.s

Initially I could not keep food down, particularly meat, to the point that even the smell of raw chicken or cooked chicken made me vomit. So I switched to fruit, nuts and vegetables. I noticed that my urine got continually paler. This coincided with my gradual loss of kidney function. I also had tingling in my extremities.

After I lost 38 pounds, and was continually vomiting after every meal, my wife convinced me to see a DR. The DR. told me that she didn't know how I was actually standing in front of her and not in a coma, my numbers were that bad. She immediately scheduled surgery to alter my arm so they could prepare me for dialysis and also sent me to the hospitals dialysis unit so they could take my blood out through an artery near my heart. I had two tubes sticking out of my chest for a few weeks while my arm healed.

Here are some important things I learned from this experience:

YOU ARE IN CHARGE OF YOUR HEALTH CARE, SO PAY ATTENTION!!

Check out what the dialysis nurse is saying when he/she trains new tech employees. You need to know what is proper, and what is not. Most of your support staff will be techs who paid a fee and took a course on how to take care of you and your machine. We had a new employee once at my dialysis center whose first name was Jane. I renamed her Calamity Jane because she didn't know what she was doing. I saw her drop a glove on the floor and then pick it up and put it on her hand. This is very bad because sterile conditions are very important when dealing with blood and Hepatitis is rampant in dialysis centers and will spread quickly. I saw another tech scold her because the other tech noticed she had put the tubing on the machine backwards. This was just before Jane was about to start the machine. It was so bad that I personally told Jane that she was not to touch me or my machine and that I would wait for someone else to take care of me. You can do this! There is something called patient rights. Eventually none of the other techs would work with her, even though the senior nurse had a group meeting asking them to "give her a chance". She was let go a few weeks later. Not soon enough.

You have the right to refuse treatment by anyone. I saw a patient die right next to me. Oh sure, in order to prevent a panic, the ambulance staff will come in and use a hand pump over the face of the person, but immediately stop after they clear the doors of the center. I however, could still see what was going on in the parking lot. A lot of patients will snooze while at dialysis because you can only watch TV or read for so long. The machines are very sensitive, so alarms go off so frequently that they are not very effective. I've seen techs turn off an alarm without even looking at the machine to see why it is alarming.

There is a government run web site that will tell you the mortality rate of any dialysis center. Use it.

You can travel while on dialysis, you just have to plan ahead and contact a dialysis center where you are going. I went to Las Vegas, NV, Atlanta, Georgia and Dallas Texas, all while on dialysis.

You should know that dialysis only cleans about 17% of the impurities in your blood, so it maintains your life, but not at the level of energy, or the feeling of feeling good that you are used to.

It takes anywhere from 3 to 4 hours, 3 times a week.

The mortality rate for dialysis patients is 25% annually. Which is why, if you don't speak up, you will be dead.

Out of a center with 24 dialysis stations, I was the only one still working full time. I have a very understanding company. They let me do dialysis on Tuesdays and Thursdays, and come in the office at 2 pm. I also worked longer on my other days to make up time. You will be tired after dialysis and will want to rest, but you can power through that and go to work if you want to enough. I've stayed with that company for 20+ years.

While on dialysis you will also be on medicare, regardless of your age, or even if you have other insurance. The insurance companies got the feds to pay for some of the cost because it can run $250,000 or more per year, plus medications, which can be up to another $30,000 or more per year.

I waited for 6 years for a cadaver kidney to be available. This is partly because a percentage of available kidneys are reserved for foreign nationals. Cadaver kidneys typically last about 13 years, but I am beyond that. The older you get the less likely you will be a candidate for transplant and the more likely that you wouldn't be able to handle the trauma and stress of the operation.

Here is the good news - If you do get a transplant, when you wake up you will feel AMAZING!!!! To everyone else, that feeling you are experiencing is what normal feels like, but to you WOW! Another reason is that you will be on such high doses of steroids that you couldn't help but feel great. Then there is the fact that you will go from 17% clean blood to almost 100% clean blood.

I wish you well in your journey. Stay alert and be careful who you let manage your disease with you.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 04:59 PM
 
32,554 posts, read 37,780,092 times
Reputation: 27599
Quote:
Originally Posted by Beaconowner View Post

While on dialysis you will also be on medicare, regardless of your age, or even if you have other insurance. The insurance companies got the feds to pay for some of the cost because it can run $250,000 or more per year, plus medications, which can be up to another $30,000 or more per year.
Thanks Beacon,good advice, as to cost ? i'm in Canada so the Canadian healthcare takes care of everything right down to the transportation to and from the dialysis treatment center.
The whole team associated with this nephrology/dialysis unit is friendly and professional.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 05:03 PM
 
32,554 posts, read 37,780,092 times
Reputation: 27599
Quote:
Originally Posted by Beaconowner View Post

While on dialysis you will also be on medicare, regardless of your age, or even if you have other insurance. The insurance companies got the feds to pay for some of the cost because it can run $250,000 or more per year, plus medications, which can be up to another $30,000 or more per year.
Thanks Beacon,good advice, as to cost ? i'm in Canada so the Canadian healthcare takes care of everything right down to the transportation to and from the dialysis treatment center.
The whole team associated with this nephrology/dialysis unit is friendly and professional.
https://www.smhc.qc.ca/en/campus-dev...-dialysis-unit
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 05:19 PM
Status: "I miss Rod Serling" (set 24 days ago)
 
48,652 posts, read 48,346,919 times
Reputation: 55464
Quote:
Originally Posted by nmnita View Post
the exact % may depend on the figures your doctor uses or his doctor may have just thrown that % out to assume him he had nothing to be really worried about. I do know as long as one kidney is functioning he will be fine. I also do not know if he would opt for dialysis. Right now we will cross that path when we com to it.
Yes, you can live with one kidney. He may never need dialysis at all. My mom feared it and said she might not do it, but now she says it's not as bad as what she feared.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 05:22 PM
Status: "I miss Rod Serling" (set 24 days ago)
 
48,652 posts, read 48,346,919 times
Reputation: 55464
Quote:
Originally Posted by jambo101 View Post
Thanks Beacon,good advice, as to cost ? i'm in Canada so the Canadian healthcare takes care of everything right down to the transportation to and from the dialysis treatment center.
The whole team associated with this nephrology/dialysis unit is friendly and professional.
https://www.smhc.qc.ca/en/campus-dev...-dialysis-unit
Good! My mom's here in the U.S. is covered, and there is also a transportation service, but she just drives unless the weather is very bad, then she asks my bro to drive.

Because she has hearing loss, I talk to her team. They are great.
Reply With Quote Quick reply to this message
 
Old 03-19-2018, 05:29 PM
Status: "I miss Rod Serling" (set 24 days ago)
 
48,652 posts, read 48,346,919 times
Reputation: 55464
Quote:
Originally Posted by Beaconowner View Post
I have PKD. I was on dialysis for 6 years. There really wasn't anything I could do to slow or stop the progression of this disease.

I don't like going to DR.s

Initially I could not keep food down, particularly meat, to the point that even the smell of raw chicken or cooked chicken made me vomit. So I switched to fruit, nuts and vegetables. I noticed that my urine got continually paler. This coincided with my gradual loss of kidney function. I also had tingling in my extremities.

After I lost 38 pounds, and was continually vomiting after every meal, my wife convinced me to see a DR. The DR. told me that she didn't know how I was actually standing in front of her and not in a coma, my numbers were that bad. She immediately scheduled surgery to alter my arm so they could prepare me for dialysis and also sent me to the hospitals dialysis unit so they could take my blood out through an artery near my heart. I had two tubes sticking out of my chest for a few weeks while my arm healed.

Here are some important things I learned from this experience:

YOU ARE IN CHARGE OF YOUR HEALTH CARE, SO PAY ATTENTION!!

Check out what the dialysis nurse is saying when he/she trains new tech employees. You need to know what is proper, and what is not. Most of your support staff will be techs who paid a fee and took a course on how to take care of you and your machine. We had a new employee once at my dialysis center whose first name was Jane. I renamed her Calamity Jane because she didn't know what she was doing. I saw her drop a glove on the floor and then pick it up and put it on her hand. This is very bad because sterile conditions are very important when dealing with blood and Hepatitis is rampant in dialysis centers and will spread quickly. I saw another tech scold her because the other tech noticed she had put the tubing on the machine backwards. This was just before Jane was about to start the machine. It was so bad that I personally told Jane that she was not to touch me or my machine and that I would wait for someone else to take care of me. You can do this! There is something called patient rights. Eventually none of the other techs would work with her, even though the senior nurse had a group meeting asking them to "give her a chance". She was let go a few weeks later. Not soon enough.

You have the right to refuse treatment by anyone. I saw a patient die right next to me. Oh sure, in order to prevent a panic, the ambulance staff will come in and use a hand pump over the face of the person, but immediately stop after they clear the doors of the center. I however, could still see what was going on in the parking lot. A lot of patients will snooze while at dialysis because you can only watch TV or read for so long. The machines are very sensitive, so alarms go off so frequently that they are not very effective. I've seen techs turn off an alarm without even looking at the machine to see why it is alarming.

There is a government run web site that will tell you the mortality rate of any dialysis center. Use it.

You can travel while on dialysis, you just have to plan ahead and contact a dialysis center where you are going. I went to Las Vegas, NV, Atlanta, Georgia and Dallas Texas, all while on dialysis.

You should know that dialysis only cleans about 17% of the impurities in your blood, so it maintains your life, but not at the level of energy, or the feeling of feeling good that you are used to.

It takes anywhere from 3 to 4 hours, 3 times a week.

The mortality rate for dialysis patients is 25% annually. Which is why, if you don't speak up, you will be dead.

Out of a center with 24 dialysis stations, I was the only one still working full time. I have a very understanding company. They let me do dialysis on Tuesdays and Thursdays, and come in the office at 2 pm. I also worked longer on my other days to make up time. You will be tired after dialysis and will want to rest, but you can power through that and go to work if you want to enough. I've stayed with that company for 20+ years.

While on dialysis you will also be on medicare, regardless of your age, or even if you have other insurance. The insurance companies got the feds to pay for some of the cost because it can run $250,000 or more per year, plus medications, which can be up to another $30,000 or more per year.

I waited for 6 years for a cadaver kidney to be available. This is partly because a percentage of available kidneys are reserved for foreign nationals. Cadaver kidneys typically last about 13 years, but I am beyond that. The older you get the less likely you will be a candidate for transplant and the more likely that you wouldn't be able to handle the trauma and stress of the operation.

Here is the good news - If you do get a transplant, when you wake up you will feel AMAZING!!!! To everyone else, that feeling you are experiencing is what normal feels like, but to you WOW! Another reason is that you will be on such high doses of steroids that you couldn't help but feel great. Then there is the fact that you will go from 17% clean blood to almost 100% clean blood.

I wish you well in your journey. Stay alert and be careful who you let manage your disease with you.
Thanks for sharing your story! PKD is not well-known, but it's everywhere in my extended family.

My mom was 86 when she started dialysis, so she is not a candidate for a transplant. My sister may be eventually. I am not sure what her function level is. Another brother just discovered he has it but his primary problem is a bad heart so they are focusing on that. He is 51 so his PKD hasn't progressed as far.
Reply With Quote Quick reply to this message
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.

Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.


Reply

Quick Reply
Message:

Over $104,000 in prizes was already given out to active posters on our forum and additional giveaways are planned!

Go Back   City-Data Forum > General Forums > Health and Wellness
Follow City-Data.com founder on our Forum or

All times are GMT -6.

2005-2017, Advameg, Inc.

City-Data.com - Archive 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32 - Top