Stage 4 CKD

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Stage 4 CKD

Postby oneloopylady » Sun Nov 06, 2016 4:39 pm

Hi, My 36 year old daughter - a long time type 1 diabetic - is now in Stage 4 kidney disease; last test showed 21% function. Her consultant wants to do a double biopsy of kidney and pancreas, which would help with the diabetes, but of course, it does mean a wait, as family members were happy to donate a kidney but obviously cannot donate a pancreas. She also suffers from diabetic neuropathy.

The doctor has said surgery will be at least 9 months, and in that time they have to get the fluid retention down as she has gained a huge amount in fluid since May this year. In the meantime, she is absolutely exhausted to the point that she can only stay awake for a couple of hours at a time, can barely walk and is breathless.

She has a two year old son and is getting very low spirited because she cant spend any quality time with him and can no longer take him to lots of his activities.

My question is - how do people deal with the sheer exhaustion? Are there any treatments, helpful advice etc for dealing with it? 9 months is a long time to feel like this!

Many thanks for accepting me here and for reading.
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Re: Stage 4 CKD

Postby AmandaClare » Sun Nov 06, 2016 6:31 pm

I'm sorry, that sounds a difficult situation with your daughter.

With the exhaustion, I can only suggest you keep asking. There are various reasons why kidney patients get tired, and I'm sure diabetes makes it worse.

Keep stressing how bad it is and ask for all alleviation. Eg is she anaemic? Has she started epo injections? Sometimes you have to fight for them cos they're expensive.

Getting the fluid off will help. Easier said then done I know.

All the best.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Stage 4 CKD

Postby wagolynn » Mon Nov 07, 2016 4:31 pm

RE- Excess fluid. She may have to regulate her fluid intake, and water tablets will help, it is possible to get water back down to 'normal' levels. The consultant should have mentioned this, and prescribed the medication, it may be worth asking.

Fatigue, some of this will be caused by the excess water, the next most likely cause, as mentioned above, is a low red cell blood count. CKD patients are very likely to have a low blood count, unless it is treated. The red cell count (haemoglobin) should be in her blood results. The usual treatment is to try Iron infusions, if there is no response then EPO injections usually do the trick. Over the counter Iron pills are useless.

There is a tendency towards depression with CKD, this also produces the fatigue effect. Help, and appropriate sympathy (someone there to listen), are about the best remedy. It is a big help if the patient understands the symptoms, and the treatment.
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Re: Stage 4 CKD

Postby Dylanmace » Thu Dec 29, 2016 8:14 pm

Wagolynn couldn't agree more with that great post , people with depression sleep a lot , let alone some one with kidney problems , yesterday was the first time I'd been shopping since my improved results
Today I woke up at 10 I was asleep again at two thirty till six thirty , it's natural , seek advice , plenty of fresh air if she can manage it best of luck
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Re: Stage 4 CKD

Postby Dylanmace » Thu Dec 29, 2016 8:15 pm

Oh as an adult when in hospital I was allowed to drink 750 mill x3 a day I doubt very much it's the same for a junior I'm sorry I'm not expert just wanted you to no
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