Dialysis?

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harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Dialysis?

Post by harrym1byt »

Hi All,

and a newby to the forum seeking information on the practicalities of CKD and dialysis....

It began with my being diagnosed with very high blood pressure and has progressed rapidly to CKD4.

I had one failed kidney, one limping along and they fitted a stent in the better one in January last, via my groin, which they sugested didn't really help much.

I think the consultant is suggesting my eGFR is now down to around 15 and is suggesting I will need dialysis to begin in around 18/24 months, either home or hospital dialysis, so I am curious as to what this might involve? I am told because of my age and other issues, a transplant is out of the question.

To be honest, this has all 'hit me' rather suddenly, out of the blue, I have changed from having lots of stamina, to not having much at all. I am fine sitting abut resting, but any physical effort now requires lots of breaks to recover. I start off at my usual speed, but that rapidly declines to the point of needing to collapse somewhere whilst I recover. My consultant decided my iron level was becoming low, I was on iron tablets for a good while following another issue, but last week they made an appointment for me to have 1000 (ml ?) of iron transfusion in hospital and my first monthly Aranesp injection last Tuesday. I came away from that, feeling more active than I have felt for a while, but that feeling didn't last long. I felt progressively worse as the week progressed, until on Thursday I retired to bed at 7pm, but feeling fine by 10pm after a bit of rest. It seems to have come and gone in waves, whether due to the IV / injection I don't know.
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi harrym1byt,

Dialysis usually starts around 10% kidney function, it can be delayed if the patient is doing OK.

If you look at the home page for this website you find information about the different types of dialysis https://www.kidneypatientguide.org.uk/most.php

The lack of energy is typical of kidney failure, and the low blood count also causes tiredness.

Healthy kidneys produce a hormone (EPO) which makes the bone marrow produce red cells, as kidney function declines the amount of EPO produced is reduced.

Dialysis is OK once your body adjusts to the new system.

Have a read of the information on this website, and come back if you have questions.

Best wishes.
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

I've had a quick read, though I do do need to study it in more depth - Thanks.

One thing my consultant mentioned in the phone call, was they would let me decide when I needed to start dialysis. I asked how I might know and he just said 'not to worry, I would know' - What might that suggest?

I'm retired, but I like to take time away in my tourer caravan, is their some sort of way to carry on doing this yet still manage dialysis?
Rik
Posts: 1735
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: Dialysis?

Post by Rik »

Hi Harry
it hits you hard.. a time like this
and it's difficult to see anything positive
but one thing you will find reading past posts
is NEVER let dialysis stop you doing what you want
read way back and read others experiences
there are many ...
it will help you decide what dialysis will fit in with your way of life
dialysis is not the end ... it's just the start of another chapter
do not.. whatever you do.. let it rule you.. you must always rule it
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi harrym1byt,
I would suggest you read about the different types of dialysis, there are Peritoneal (PD), and Haemodialysis (HD).
There is a version of PD (APD) using a pump which can be done at night, at home or any ware there is electric power available
Not everyone is suitable for PD.

With training HD can be done at home, and there are now small HD machines available that are portable.

As to when, most Consultants are flexible about starting dialysis, they realise it has a big effect on life stile so tend to leave starting as late as possible.
The signs are - more of what you have been experiencing, retaining water (swollen feet, ankles, legs, the retained water can reach lungs causing breathing difficulty)
Search my posts for Dimple Test.
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

"The signs are - more of what you have been experiencing, retaining water (swollen feet, ankles, legs, the retained water can reach lungs causing breathing difficulty)
Search my posts for Dimple Test."

I have absolutely none of the symptoms so far, apart from becoming tired quickly with any physical effort and sometimes a little dizziness. I at first put that down to my blood pressure falling rapidly with physical effort and due to my blood pressure control meds. The hospital suggest it is most likely due to low iron, hence the appointment they generated for last week. I'm feeling more like my usual self today wanting to do things and get out and about.

One thing I read suggests the dialysis system is connected to the arm. Artery and vein connected together (?) in some sort of op. then the system connects to that. Does that mean a cannula permanently hanging out of the arm?

How big are these home dialysis units? I have heard it suggested that a special clean room needs to be organised in the home for the process, is that true?

Sorry, lots of questions, but the whole thing is a mystery to me.
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi,
Low blood count does certainly make you lack energy, as explained above your kidneys may not be producing EPO.
Low iron results in a low blood count, though iron without EPO is useless.

Yes, a Fistula is formed by joining an artery to a vein in your lower arm, this is required for Haemodialysis.
The cannulas (needlers)are then inserted close to the fistula at each session of dialysis and removed at the end.
The lower cannula picks blood up to be processed in the machine, and the upper one returns the processed blood back into your arm.

With home dialysis, a easily cleaned environment is required, basically just good hygiene is required.

The new portable Haemodialysis machines are roughly the size of a medium suitcases.
The pump for APD is about the size of a briefcase, both systems will need bags of dialysate.
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

Thanks for that wagolynn, I am much better informed now.

Yesterday I began feeling more like my old self, better and more energetic than I have felt for months. Strange that the IV iron and injection should have affected me so badly last week when I first had it - if in fact that was the cause.

At least now I know when I lack stamina, it is due to low iron levels. One renal consultant I spoke to suggested the lack of stamina was probably due to poor circulation to my legs, after I described walking 100 yards and feeling of my legs like the were lead and a desperate need to find somewhere to sit down to rest.
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi,
Poor circulation in your legs is a function of ageing, however quickly running out of energy is a symptom of CKD, it's severity varies from patient to patient.
The only thing I have been able to do, is to try to keep going, it is easier if there is a reason for the activity, Eg. looking at my lawns (2) I think I will not be able to cut them but once started I have to keep going because a partially cut lawn looks, to me, worse than an uncut one!
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

I'm OK, my lawn is big enough to need a tractor mower, so its a pleasure to cut it :D
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

Question if I may?

Would it be worth my while to buy an oxymeter gadget, so I can tell when the oxygen in my blood is at a low level?

Would it help show when my iron level was low?
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi,
There are other reasons why oxygen may be low, you should be getting regular blood tests anyway, these will eventually be monthly as your condition progresses.
If you begin to feel more tired you can just ask your GP for a blood test.

So, in short I would not bother to by an Oxymeter for that reason it is more a measure of your cardio vascular function.
Thumps
Posts: 1246
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Dialysis?

Post by Thumps »

I agree re: oximeter, not helpful specifically for iron depletion.

I got into a habit of having regular (quaterly??) iron infusions, didn't notice a huge energy surge except for when they were closely aligned with my EPO injections, when I felt like an Olympic athlete by comparison! 8)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
harrym1byt
Posts: 7
Joined: Mon Nov 30, 2020 11:43 am

Re: Dialysis?

Post by harrym1byt »

EPO? Does that serve the same purpose as the Aranesp injection I had/ am having now each month?

Last time I spoke to them, they suggested I can expect the next IV in around 6 months.

I'm still feeling great, stamina wise - I just wish they had offered me this months ago.
wagolynn
Posts: 1311
Joined: Thu May 23, 2013 2:49 pm

Re: Dialysis?

Post by wagolynn »

Hi,
Short answer, Yes.

I am pleased to see you feeling more energetic.
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