There's just no escape

[MooseMom]

I was on a plane from London to Chicago last night, wedged between two guys in Row 593 (or so it seemed).  The man to my right was a tall, burly Englishman in a woolly jumper that radiated heat like a furnace.  I was rummaging through my carryon bag which contained all of my meds and complained about having to drag it all on board (as opposed to storing it my checked baggage.  Wouldn't want them ending up on the other side of the world.)  He said he had the same problem because he was a diabetic and also had loads of meds to take.  I mentioned that I'd had a kidney tx, thus the billions of pills.  The young man on my right quietly questioned me because his father has been on dialysis for 3 years; he's only 54.  What interested me was the fact that they live in Hyderabad (India), so I got a little bit of an insight into how these things work over there.

As we were talking, it occurred to me that even while being 37,000 feet above the north Atlantic, there's no escaping the spectre of kidney disease.  It's all around us, all of the time.  We just don't know it.

[obsidianom]

There is a worldwide epidemic of kidney disease and its only going to get worse.

[jeannea]

It's so sad to me how many people have kidney disease or are heading to kidney disease and yet we're invisible. I don't object to the publicity other diseases like breast cancer get but why does no one talk about kidney disease? It is so easy and inexpensive to get a BP check and a quick urine test for sugar and protein. Then if we could convince those people to make a few small changes to their lifestyle/diet we could put off dialysis for a long time. Instead, many people find out when they wake up in the hospital after a serious problem. We could save millions of dollars and many lives. But there is no public will to think about the screening for this.

I am not talking about many of us (me included) who were born with kidney disease. I am talking about kidneys destroyed by untreated high blood pressure or diabetes. Many of those people don't even know they have a problem.

[YouDontKnowCecil]

Lack of access to health care and lack of appropriate public education are really big factors.

[cassandra]

And so are the food problems, like hamburger disease etc

[Deanne]

It seems like just about anyone I talk to knows someone with CKD. I had an electrician over and it came up (don't remember how/why). His mother-in-law was one an early dialysis patient and then a transplant recipient many, many, many years ago. He said she's been written up in medical books as a pioneer in home dialysis and then as a long-term transplant survivor from the early days of immune suppressants. I think he said she survived 30-some years on her transplant and eventually died of a hospital screw-up or infection she got in the hospital. I don't remember the details. I think I've had at least a couple of uncles on dialysis due to causes unrelated to mine. Mom said something about one of them. It really is prevalent.

[cattlekid]

Has anyone been reading the news lately where new guidelines have been set forth that recommend AGAINST routine screening for kidney disease?  I am livid.  The only way I knew about my kidney disease is because of specific testing that I had done because of back pain that I was experiencing.  The back pain was separate but the chiropractor I went to go see did mention that I was pointing to my kidney area so after many doctor visits and two years of testing - lo and behold, IgA neproprathy.  Who knows how long I had CKD and what I could have been doing to forestall the slide into ESRD?

This is what I fear....too many people not being screened for CKD, merrily going along in their lives until *wham* CKD stage 4 or ESRD.  Then dialysis on an emergency basis, no time for thoughtful choices and fistula placement.  More chest catheters...more in center hemo with no real presentation of options or time to even consider them.
 
I get that the powers that be are trying to be judicious in how healthcare dollars are spent, but it seems to me in this situation, given what we know about the trajectory of CKD/ESRD in the general population, this is something that we need as a country to get in front of, not get run over by.

It's so sad to me how many people have kidney disease or are heading to kidney disease and yet we're invisible. I don't object to the publicity other diseases like breast cancer get but why does no one talk about kidney disease? It is so easy and inexpensive to get a BP check and a quick urine test for sugar and protein. Then if we could convince those people to make a few small changes to their lifestyle/diet we could put off dialysis for a long time. Instead, many people find out when they wake up in the hospital after a serious problem. We could save millions of dollars and many lives. But there is no public will to think about the screening for this.

I am not talking about many of us (me included) who were born with kidney disease. I am talking about kidneys destroyed by untreated high blood pressure or diabetes. Many of those people don't even know they have a problem.

[UkrainianTracksuit]

This kind of reminds me of a radio ad I heard a few years back.  I think it was during national kidney month or some other fundraising drive.  It went along the lines of “These are the symptoms of kidney disease.” and there was a long silent pause.  The ad continued to say it was a “silent killer”, some percentage of people didn’t know they were suffering so it would be wise to get checked.  Anyone else in Ontario hear this ad?  I truly hope it did the odd random listener some good.  When I heard it at 5 am, I was doing some farm work, recently slipped into Stage 4 at the time, very angry and felt there was no escape… even the radio was taunting me that early in the day!  Now, after that time, I haven’t heard any other ads, or just see mentions of the disease when there is a specific fundraising drive.  I hope whatever little attention out there makes a point though. 

[MaryD]

Has anyone been reading the news lately where new guidelines have been set forth that recommend AGAINST routine screening for kidney disease?

I'm very much in favour of routine health tests, but I know several people who have had warnings about their health and who are doing NOTHING about making minor adjustment to their lives in order to stay healthy.

One of my son's friends who is 39 has already had three heart attacks.  He is grossly overweight, smokes and drinks like a fish.  He is a reformed health nut for about a month after each heart attack, when he goes back to his usual lifestyle.

There are two women in my U3A group (over 55) who are pre-diabetic.  Neither of them have adjusted their diets and one is a couch potato.  They sit with me in the group knowing about my dialysis, with me telling them that diabetes is the major reason a lot of people have to have dialysis, and they think it won't happen to them.

It's such a waste of life when people are warned, but can't or won't make even small adjustments to keep their health.

[Tío Riñon]

I'm very much in favour of routine health tests, but I know several people who have had warnings about their health and who are doing NOTHING about making minor adjustment to their lives in order to stay healthy.

One of my son's friends who is 39 has already had three heart attacks.  He is grossly overweight, smokes and drinks like a fish.  He is a reformed health nut for about a month after each heart attack, when he goes back to his usual lifestyle.

There are two women in my U3A group (over 55) who are pre-diabetic.  Neither of them have adjusted their diets and one is a couch potato.  They sit with me in the group knowing about my dialysis, with me telling them that diabetes is the major reason a lot of people have to have dialysis, and they think it won't happen to them.

It's such a waste of life when people are warned, but can't or won't make even small adjustments to keep their health.

I agree that it is a waste and a shame that many people don't make a concerted effort, but I think we can also understand the difficulty of battling an unseen "enemy".  As stated, people don't see or feel any symptoms in many cases for this condition--especially if caused by hypertension.  The patient may attempt to implement the changes suggested by their doctor by making some lifestyle changes, but don't get any "feedback" for their efforts.  There is nothing visible often to use as a goal or milestone to maintain their motivation and know that their changes have made an impact.  It is difficult to make these lifestyle changes when there is nothing tangible on which to focus.  What can be done to help people win against this "invisible enemy"?