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RENAL ABOUT IT!! Kidney patients, parents and carers of kidney patients - step this way...

(26 Posts)
qo Fri 03-May-13 12:18:01

Hi I'm Qo, I have a son with a very complicated renal condition - hypoplastic non-functioning kidney on the left and badly damaged kidney on the right. He's 21 years old (almost) and has learning difficulties, so I keep on top of all his medical care.

He was very poorly when he was younger, culminating in complete renal failure and cardiac arrest. He has had CKD ever since, but has been stable for around 20 years - last year his results just seemed to start taking a downward turn.
At first we were told he had a blockage and an operation would fix it, but a dynamic renogram showed no such blockage. As it stands now, his results have taken another downward turn - creatinine 225 (from 188 in jan) Urea of 11.6, and eGFR of 32%.

Consultant says he is ineligible for a biopsy as he only has one functioning kidney (although google tells me he is eligible for open surgery biopsy so I'm going to ask about that) but he thinks its simply a case of the kidney has taken so much "insult" as he put it, that its just worn out. Something I was warned could happen when he was first ill at 14 months old.

I hope we can all offer each other some support on this thread, as I know how worrying and draining this can be for us all affected by renal failure or renal conditions.

NorthernLurker Fri 03-May-13 12:20:47

Good luck with your thread.

May I recommend Renal patient view if you haven't seen it.

qo Fri 03-May-13 12:29:26

Yeah we have renal patient view, its been a bit of a worry rather than a help this time round as I can see his results have worsened - it has been a really good thing on the whole though!!

NorthernLurker Fri 03-May-13 12:38:07

Ah I see. Well that is the issue with RPV - information is a blessing AND a curse. It does very often happen that renal function dips and then picks up again for a while for some patients. You need longer term info to assess how significant one result is if that makes sense.

qo Fri 03-May-13 12:50:36

Well he's been stable for years and years with a creatinine of around 160, it was September last year that it started going up and still seems to be rising.
I'm not as worried today as I was yesterday (when I saw the results) I think it was the shock more than anything - he seems so well in himself and his BP is fine - I've noticed a bit of a pot belly, but that could be anything really.

qo Fri 03-May-13 12:50:56

Are you a renal nurse NL?

Ledkr Fri 03-May-13 13:22:43

I think NL has been or is a patient.
Correct me if I'm wrong.
I've asked about a sw and get a blank look.
Tbh we have had no support really we've done it all ourselves.
Worse thing is the medics seem to think "lots if people work with kidney failure and on dialysis" well yes that may be if you can work for a goof employer who doesn't take money from you for hospital appointments or be horrible when off sick and put you to work on heavy duties when you are already struggling!

qo Fri 03-May-13 13:47:37

Ledkr, I know what you mean - my employers are fabulous, but I know some aren't so good. One large retailer in particular practically sacked my friend for being ill, it's a hard one.

May be worth contacting your local social services team if your unit aren't being much help? I don't have any support at the mo - but to be fair we don't actually need it. But we did have a renal social worker when he was really poorly. It's bad enough trying to cope with a serious illness without having all this financial worry too - hope you're ok smile

Ledkr Fri 03-May-13 14:05:03

It's dreadfull indeed and tbh he does nothing for himself without a swift kick up the arse. Annoying much.
It's been 11 weeks since DLA claim.
I have 4 other dc including a 2 yr old so not easy here.
Sorry. It's a bad day today can you tell? smile

NorthernLurker Fri 03-May-13 16:04:11

I work in admin on a renal unit. Doing patient passwords for RPVis one of my jobs along with about a million other things grin Qo - do you have a contact for your son's consultant? If all else fails you can contact the loacl RPV admin through RPV and ask them to pass on a message.

Social work support is patchy unfortunately. We have a dedicated (in every sense) team but I know a lot of places don't have the same. Even with that support in place the benefit changes that the government are enforcing will impact on renal patients. Renal failure is covered by the Disability Discrimination Act btw.

I wonder if the NKF patient advocacy service could help you Ledkr? Info [[ here]

NorthernLurker Fri 03-May-13 16:05:32

Grrh here

Ledkr Fri 03-May-13 16:15:40

Thanks northern. Sorry about calling you. Patient grin

Sparklymommy Fri 03-May-13 20:53:02

Hi, I have CKD. I was diagnosed approx two years ago after an episode with kidney stones and being scared and a bit panicky and thinking it wouldn't have any major impact for years I stuck my head in the sand.

Now I am aware that I am becoming increasingly poorly. I have a bp of 250/150 (average) and raised hb levels. Not to mention the back pain! I have an appointment next Wednesday with my GP when I know she is going to look at my recent test results in horror but I'm not overly sure what will happen next.

qo Fri 03-May-13 22:49:12

Hi sparkly, are you on any drugs? My sons consultant rang me back today - he said he was going to ring anyway, he wants his blood repeated on Tuesday at the hospital and then probably start a 6 week drug trial, he didn't say what specifically but did say it would be steroids.

He also said he has large amounts of protein in his urine, but no infection.

Yes ledkr, I could tell it's a bad day for you! I feel for you, I've been so worried about my son this week its made me feel phsyically ill, and lowered my tolerance levels and wok has been poop - I can totally empathise with you at the moment! Have you rang them to see how far along they are with processing your claim?

Sparklymommy Sat 04-May-13 00:51:52

No I'm not currently taking any medication. I expect that will change when I see the GP, at the very least I expect her to insist on bp medication (I had said I didn't want to go on bp meds due to being young and not wanting to be on meds for the rest of my life but as my bp has rocketed recently I expect her to insist).

Ledkr Sat 04-May-13 03:52:39

Sparkly. We have a lot in common grin what with the dancing.
Ds is on lots of pills,has been awhile.
Am led here waiting for toddler to go back to sleep.
I don't know!

Sparklymommy Sat 04-May-13 08:36:31

I am a bit concerned about my bp actually. All my life it's been "a bit high" at about 150/90 and always hovered at 170/95 when I was pregnant but when I had the kidney stones (which were a million times worse than childbirth!) it rose to 180/100. Now it is very definitely around the 250/150 mark and when I google that it says that's imminent stroke/heart attack high!

When I was diagnosed the specialist was talking about doing a biopsy, but she wanted more tests because she "had a hunch" that one of my kidneys wasn't working at all and the other one was doing all the work. In which case she said a biopsy would be unwise. She also said she was convinced I had been suffering my whole life without realising it. I had been diagnosed with IBS in my teens which she said was probably more related to my kidneys than my bowels!

Ledkr we do appear to have some similarities in our lives! smile dancing (well, performing) kids just about get me through the day to day tbh. My eldest and youngest both live to be on the stage and I have put all my energy into making their dreams come true. It takes my mind of the worry about my own deterioting health. I'm gutted that things seem to be getting worse because I would love another baby and I know at the moment that's looking increasingly unwise.

NorthernLurker Sat 04-May-13 09:30:59

Qo - that soynds like the consultant has a plan. That's good.

Sparkly - my totally non-medical opinion is that you definately should consider some BP medication. Are these home readings? Have you ever had a monitor from the hospital that you wear for 24 hours? That might be a useful investigation.

qo Sat 04-May-13 11:48:06

Sparkly my son can't have a biopsy for the same reason, well it hasn't been ruled out totally - he said they don't usually do them if there's only one functioning kidney because of the risk.

Dr Google has definitely not been a friend to me this week either grin

Sparklymommy Sat 04-May-13 13:34:24

Yes, i did (attempt) the 24 hour bp test. Didnt last 24 hours because my bp was so high it broke all the capilleries in my arm as it kept inflating looking for the higher reading sad and it was so painful. Dreading my appointment on thursday tbh.

NorthernLurker Sat 04-May-13 15:00:07

Don't dread it. See it as a stepping stone to feeling a bit better. At the same time as talking about meds ask your GP for advice about a low salt diet. Salt and high BP go hand in hand like bacon and egg - and I use that metaphor advisedly. We all eat more salt than is good for us.

Qo - stay away from Dr Google. He's scary!

qo Sat 04-May-13 18:35:48

I've been told off by my eldest for spending my days googling CKD and not doing any housework or laundry. Hes right to be honest, I need to pull myself together - life goes on after all.

Its just that I nearly lost him when he was poorly last time, he's lucky to be here and thats all that goes through my head!! even though I know - logically that wont happen again, he has a great consultant and team looking after him.

Even if he does progress to endstage its still not a death sentence, I need to work on not worrying so much!

qo Sat 04-May-13 19:09:10

The other thing is that he seems so happy at the moment, it seems cruel almost?

NorthernLurker Sat 04-May-13 19:33:23

He's happy because you're doing such a good job being his mum. Part of which means worrying about their future unfortuantely.

qo Sat 04-May-13 19:51:53

Thanks for that lovely post NL smile xx

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