DIY SOS

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DIY SOS

Postby Daisy4246 » Wed Jun 21, 2017 7:57 pm

I watched this programme which was very interesting about a mum with CKD who was having her home ready for HD. So happy for her as they did a great job on her house. She has very young children so that's even harder. However it left me a bit sad when builders were crying at the size if the machine and were surprised she needed that to stay alive, like many of us here. Also when l heard them say life expectancy on HD at the unit is only 5-10 years l was shocked as I'm sure this is not the case and again it left me sad. I want to live longer and l haven't heard this. I'm sure some of it was for good tv. Does anyone else have any thoughts?
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Re: DIY SOS

Postby freddyy » Thu Jun 22, 2017 9:30 am

I have also seen similar numbers for survival here in Sweden. Statistics for dialysis survival is not great, but as my neph. nurse told me, many people who start dialysis are elderly or have other illnesses which will skew the survival rates. She told me not to worry in case I would end up as a long time patient on dialysis.
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Re: DIY SOS

Postby wagolynn » Thu Jun 22, 2017 3:47 pm

The (medical) intention is, dialysis keeps you going whilst waiting for a transplant.
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Re: DIY SOS

Postby rheaybou » Fri Jun 23, 2017 11:10 am

It was a brilliant episode of an amazing show, it shows the lack of exposure people have to others who are going through dialysis and the impact it has on your life and those who love you.

My one concern is this 5-10 year life expectancy, this is a number. A number that doesn't show that the average age of a patient on dialysis, other health issues and the reason they passed away. Just to let you know, the average age of dialysis patients in the UK in 2013 was 65!

https://www.renalreg.org/wp-content/upl ... -final.pdf
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: DIY SOS

Postby chrisb » Thu Jul 27, 2017 8:10 am

I watched that programme as well. I think they over egged the pudding for the non-educated, which isn't a bad thing but also it was scary for those of us already on dialysis with their 'facts'. I felt the need to check out the life expectancy quoted with my Neph and he also told me that it depends on alot of factors including age when starting and other medical problems such as diabetes. I thought the crying was a bit OTT.
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Re: DIY SOS

Postby JMan » Thu Jul 27, 2017 1:23 pm

Daisy4246 wrote:I watched this programme which was very interesting about a mum with CKD who was having her home ready for HD. So happy for her as they did a great job on her house. She has very young children so that's even harder. However it left me a bit sad when builders were crying at the size if the machine and were surprised she needed that to stay alive, like many of us here. Also when l heard them say life expectancy on HD at the unit is only 5-10 years l was shocked as I'm sure this is not the case and again it left me sad. I want to live longer and l haven't heard this. I'm sure some of it was for good tv. Does anyone else have any thoughts?


She did I believe have PKD and underlying problems.. I do think it would be good for Alan to do a one year on program (not more as some of the 'clients' haven't exactly been spring chickens.

I've spend much of my childhood on heamo in the unit (5 or 6 onwards) many of my uni years, and a good few years in 2005 when my last transplant packed it in. I've been on home heamo for the last 10 years, I've just moved and I'm starting on a new chapter with a different home machine.

There IS a statistical fact that your more likely to get an infection in the unit, also those in the unit mostly are elderly patients (not all), and your getting less dialysis than home patients do so more stress on the heart, toxin buildup between sessions etc etc:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Re: DIY SOS

Postby Epgibbons » Tue Aug 01, 2017 10:25 pm

Hi all,
I know someone who has been on HD at home for 35 years and appears OK- he cycles around town. I think the issue could be that the best dialysis is HD at home every day for ~2.5 years.

In my case my heart is failing so a transplant is not possible.
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
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Re: DIY SOS

Postby Nicke » Sun Aug 13, 2017 2:40 pm

The medical statistics for Sweden: if you are +65 your survival in dialysis are 15 percent after 5 years.

Source in Swedish: https://www.nllplus.se/For-vardgivare-i ... ortalitet/

But if your are "only" a none-smoker old timer it will be much better survival-rate.

BUT most elderly CKD patients have problems as diabetes , strokes, cardiovascular problems, cancer, calcification and on.

It takes it toll.

Best you can do is to take care of your self with nutrition, and vitamins. Especially Vitamin D and K2, as I wrote about it in another thread.

Malnutrition is part of the MIA syndrome (malnutrition, inflammation and ateroskleros).
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