suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Sue Stapely
Posts: 6
Joined: Thu Mar 28, 2019 2:32 pm

Re: suggestion... how about introducing ourselves??

Post by Sue Stapely »

HI, i'm Sue, 72, a lawyer and reputation management consultant, based in the beautiful Cotswolds, though a global traveller, just back from a terrific trip round Vietnam, Laos and Cambodia where, despite 36 degrees and high humidity I managed to see almost all I'd hoped to see, despite my medics' reservations about my going at all. Previously high energy, driven, lived life in the fast lane and am still working, albeit more flexibly. Made on a Friday by someone who wasn't concentrating so have had assorted kidney probs from childhood and throughout two rather problematic pregnancies decades ago, which I was advised not to attempt. On a cocktail of meds for ever (not just for CKD but also for asthma, osteoarthritis, gout etc etc) but was told y'day that my high BP, despite the meds, and permanent exhaustion, regular UTIs not responding to antibios and sleepless nights all indicated to my consultant that it was time for me to be added to the transplant list (tho O Rh Neg so I'm presumably trickier to match than many and none in my small family is suitable, nor would I want them to be) and that the dialysis conversation was necessary. I don't take counselling well, am a difficult, opinionated, independent woman, an inveterate on line researcher professionally and a long term campaigner for a self determined exit. Was in renal failure 9 years ago when a shoulder damaged in a car crash was replaced and a non-steroidal antibiotic which shouldn't have been administered tipped me over the edge. Having come back from that, been told from childhood I was unlikely to get beyond 60 and having survived some 10 other assorted ops, I have felt for some time I was lucky to be on borrowed time. But it all changed when fairly recently I remarried after 10 years on my own an utterly wonderful man who would prefer me to keep buggering on for as long as I can, but I can't visualise coping well with any of the methods of dialysis available and/or frequent trips to a time-expired old hospital which involves 3 hour round trips each time.... guidance would be appreciated to inform my thinking.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Sue,
Dialysis, like anything new, sounds a bit daunting at first but it is not as bad as it looks/sounds.

Peritoneal dialysis (PD), is the most flexible, if you are physically suitable, most areas train you on the manual method as a fall back.
Once you are familiar with PD they will offer APD, a mechanised version of PD, this can be done at night while you are asleep.

Haemodialysis (HD), can be done at home but they have to train you first, this is done by attending HD sessions at your local unit, three times per week, and dialysing to get familiar with the method, and the equipment, this usually takes about 3 months.
The doctors have to be confident that you will be able to cope on your own, should things go wrong, before they will let you have a machine at home.

HD at the unit, this soon becomes part of life's background routine, it has the slight advantage that you see other patients which sometimes can be helpful, to see that you are not the only one.

You have probably already looked at the Kidney Patients Guide home page, but if not it is at this address http://www.kidneypatientguide.org.uk/contents.php

A more technical site is - http://edren.org/ren/edren-info

Best wishes.
Sue Stapely
Posts: 6
Joined: Thu Mar 28, 2019 2:32 pm

Re: suggestion... how about introducing ourselves??

Post by Sue Stapely »

thank you for taking the time to offer some advice. I have inevitably spent hours on line on this and many other sites, both UK and US based and so think I understand the options and would have thought that the nocturnal haemo is the one whicha allows one to live the most of a life. I really dislike the thought of investing virtually three whole days a week, or even four, to getting to and from a dreadful old hospital and waiting impatiently while the toxins are replaced with clean blood. I also don't relish any kind of group activity, having had similar treatments in the past I know I operate better on my own and have elected for private care whenever possible, though the pre-existing CKD precludes me from insurance cover now. My question remains about how well nocturnal haemo works if you are largely sleepless as I am. Do the medics prescribe strong sleepers (none of the usual ones work for me)? I currently rarely sleep for more than a max of two hours at a time and tend to average only about 4 hours sleep a night and wonder whether this would make night-time haemo unworkable.

And if it is deemed appropriate, is it possible to go straight to this kind of haemo without having to go through weeks or months of hospital visits? It's the time taken up with these visits which I observe takes over people's lives and which I know I would find so difficult to adjust to as my lovely husband and I have so much we want to accomplish in my remaining time...

best wishes

Sue
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Sue,

We all start off being horrified about how much dialysis will intrude into our lives but to put this in perspective, without dialysis or a transplant, we will die.
In the case of a patient with full blown kidney failure, and no treatment they may live about ten days.
It sounds as though you are at the early stages of CKD but everyone, with few exceptions, is heading toward total failure, each at their own speed.

APD - the machine is basically an intelligent pump, dialysate is supplied in bags the same as PD, the machine pumps the solution into the peritoneal cavity (via a normal PD connection), and then pumps it out again.
The machine doe's not know or care if the patient is asleep or awake.

It is usual to train the patient to use manual PD first, during this time levels of treatment required, and type of dialysate is sorted out, if the patient is responding then APD can be offered, this usually done at night because it has minimum effect on life, with PD being the fall-back should there be any problems.
Training will cover maintaining clinical levels of cleanliness.

Nocturnal Haemodialysis is Haemodialysis carried out at night, and uses a full blown dialysis machine.
The training has to be prolonged, there is a lot to learn about the operation of the machine, and the patient has to learn how to insert needles safely into themselves, a mistake could lead to the patient bleeding to death if not promptly dealt with.
Again, clinical levels of cleanliness is important as the patient is working directly on their circulatory system.

On a more cheerful note, patients do go on holiday, and have dialysis at their destination, APD machines are portable, and the suppliers will usually deliver consumables to your destination.
There is an American Haemodialysis machine that is portable, some areas of the UK are beginning to issue these to home dialysis patients

I am sorry this post is all doom and gloom but I fear reality has not caught up yet.

Best wishes.
MarcoAlvarez
Posts: 1
Joined: Thu Jul 25, 2019 8:02 am

Re: suggestion... how about introducing ourselves??

Post by MarcoAlvarez »

Hello My name is Marco and i'm a medical student and researching about kidney related diseases and their cure. That's why i'm here hope this forum help me alot to complete my research :)
Kimsalzwedel
Posts: 2
Joined: Thu Aug 22, 2019 5:00 pm

Re: suggestion... how about introducing ourselves??

Post by Kimsalzwedel »

Hi I’m Kim, I was diagnosed with CKD stage 4 about two months ago
I really haven’t been told anything, even my questions have basically gone unanswered. Is this something I need to be worried about? Is there changed in anything I need to change? Any input would be so great.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi there,
have a good look at the topics shown at http://www.kidneypatientguide.org.uk/contents.php
If you still have questions come back, someone will probably have the answer, if the question has an answer that is.

Best wishes.
Maybe
Posts: 2
Joined: Sun Jun 16, 2019 7:58 am

Re: suggestion... how about introducing ourselves??

Post by Maybe »

He, my husband started night time APD a couple,of months ago but is having trouble with the machine alarming due to slow drains.
We thought APD would be allow more flexibility and it does, but having to get up a and move around at every drain is definitely making for sleepless nights.
With an up and coping double heart by-pass we are not getting worried he may not be able to continue on APD.
Would love to hear from anyone who has experience of heart surgery while on dialysis
jaclong
Posts: 2
Joined: Tue Feb 11, 2020 9:06 am

Re: suggestion... how about introducing ourselves??

Post by jaclong »

hi everyone

I have just joined this group today. I have very recently been diagnosed with CKD stage 3 which was a shock as I felt reasonably well. I have been taking tramadol, paracetamol and ibuprofen for 3 years to deal with pain due to cervical stenosis of the spine. Have now stopped ibuprofen on discovering that it could lead to kidney disease. (had to up tramadol as a result but GP happy with that) Why was I not warned of this I wonder? As a result of stopping my eGFR increased from 40 to 48 and creatinine decreased from 114 to 99 which is pleasing. I will have a further blood test in 3 months time. I have reduced salt intake and bananas so have seen my potassium level fall too. I now have to find a way to deal with pain in my lower back as it is affecting my golf swing! I was thinking of ibuprofen gel but wont risk it. Hot water bottle helps when I am sitting down at home but obviously won't work on the golf course! Any ideas would be appreciated.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi jaclong,
Welcome to the forum.

I think the situation is with anti-inflammatory drugs is that they make weakened kidneys worse.
As to your current pain I would suggest you visit your GP to see what else can be done, ibuprofen gel ends up in the blood stream so will get to the kidneys.
Have you had any physiotherapy for the pain?

As to changes to diet, at this stage they are only necessary if you have been instructed to do so by your GP/Consultant, there are diet restrictions when on dialysis but these are, in the main, to overcome the failings of dialysis.

Best wishes.
jaclong
Posts: 2
Joined: Tue Feb 11, 2020 9:06 am

Re: suggestion... how about introducing ourselves??

Post by jaclong »

Thank you wagolynn. I have certainly decided against any form of gel which has nsaid elements. I am resting my back until the end of February and then will assess the situation. If there is no improvement I will talk to my GP as there can be a host of reasons for the pain. I have a history of cancer too (3 times now) so that may have to be looked in to.

Jackie
dewisant401
Posts: 1
Joined: Sat Feb 15, 2020 12:22 pm

Re: suggestion... how about introducing ourselves??

Post by dewisant401 »

Hi I'm David currently living in Kuala LumpurMalaysia. Just been diagnosed with CKD stage 4. Starting starting steroids and Chemo. Looking for advice from other sufferers.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Dewisant401,
Welcome to the forum.

In the main, in the UK, patients go onto dialysis, do you know the cause of your kidney failure?

Best wishes.
hansi
Posts: 12
Joined: Sat Mar 21, 2020 5:53 am

Re: suggestion... how about introducing ourselves??

Post by hansi »

Hi. I'm a newbie to this forum. I'm 76 years old and have CKD Stage 3 with a creatinine level of 102. I don't have any symptoms, but would welcome any discussion about this condition. Thank you :D
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi hansi,

Welcome to the forum.

I would suggest you have a read of the information provided via the home page of this website. https://www.kidneypatientguide.org.uk/contents.php

If this raises any questions, we can try to answer them on the forum.

It is worth mentioning that the diet information doe's not apply until you are on dialysis, unless your consultant says otherwise.

Best wishes.
Post Reply