Horrible Taste Changes - Ideas Please?

[jennieck]

Hello everyone signed up for this!

I have become, over a 3 month period, the carer for my husband who has been diagnosed with advanced kidney failure over the last 3 months.

He is not an "online forum" person!!! I am a therapist (goldenleafcounselling.com) in Cromer, Norfolk, UK.

He is still having trouble with sickness and metallic taste in the mouth. Any helpful suggestions? Geoff is an accomplished musician, playwright, pianist and - most importantly for him, composer. He also (used to ) like long walks.

Jennie

[Philipjm]

Hi Jennie,

When I was diagnosed as ESKF I thought it was the end of my world but soon came to understand it was simply a change in my routine.

I am 70 this year and still work full time, really enjoy my work lecturing in H.E.

I still go out on my cycle for a few hours when I want to, enjoy walking, have a large garden that I manage myself.

All this is down to a positive can do attitude and the help and care that I have from my PD team- they are wonderful.

Recently had an infection and peritonitis, had one day off work and with the support and help from my PD team have recovered.

Really important to work with your PD or HD team and life is still great.

Planning a trip to Australia next year to see my new granddaughter, think positive, be positive and work with your PD ,HD team and it will get better and life can be fun again.

Philip

[jennieck in reply to Philipjm]

Thanks for responding so quickly, Philip - what a positive story! I quite agree with your remarks. The difficulty comes I think if you are a person who tends to dwell on the negative side of life anyway...the hardest thing for me is to help inspire that positive attitude. And it makes it no easier being a therapist when its a family member, I assure you...everyone assumes that its easier in fact!

In the East the kidneys are called "the seat of all emotions" (the Bible refers to the kidneys as "the reins"- think guiding a horse) ! - so its obvious that your attitude makes a difference. What do you teach? Jennie

[Philipjm in reply to Philipjm]

Hi Jennie,

I have just written a new degree in Quantity Surveying and have my first cohort this September.

I have written a blog about my experience as a PD patient having read so many negative discussions, unneeded to show everyone out there that life can and is still good and exciting as ever.

I have yet to publish my blog but will let you know when I do.

Every time I speak with my 8 year old granddaughter she seems to think I am about to have a transplant , even at her young age she understands all about kidney failure, she is a tonic.

Best wishes

Philip

Best wishes

[Nicolala]

Hello Jennie

With regard to the metallic taste, I suffered with it too in the earlier stages of kidney failure. Even my skin smelled metallic. It can be caused by medication or just the imbalance of bloods. Sadly I don't think there is much you can do about it. For the sickness, eat light meals-things he fancies. It's important to keep your strength up. If it's really bad, he should speak to his consultant or named nurse, as anti-sickness medication may be appropriate. I guess your husband isn't yet on dialysis, which will improve things.

As phillipjm replied, a positive attitude is the way forward. I've been on dialysis for 25 years. Life is there to be enjoyed! I am younger than your husband, but a nice walk is possible and he should still be able to enjoy his music. He sounds incredibly talented; I have always wanted to learn to play piano.

There are some helpful and knowledgeable people on this forum. Don't be afraid to ask for advice , particularly if Geoff goes onto dialysis.

Nikki.

[jennieck in reply to Nicolala]

Hello Nikki

Nice to hear from you! G is already on dialysis - the whole thing has happened extremely quickly as his kidney function went from 20% to 6% in a matter of weeks. We have just had our third night of home dialysis and quite a few problems with the machine. Our younger son Isaac has christened the machine "Rodney the Tooth Fairy" as it "takes things away from you in the night" !!!! (He is in his 20s but has a great sense of humour!) - and the lady we spoke to last night referred to our difficulties with the machine as "teething troubles" so I think he is right!

We are still experimenting with different foods to see what he can eat. He is on anti sickness medication but still struggling. Good to hear about your positive experiences. Jennie

[Nicolala in reply to jennieck]

Hi Jennie

Goodness me. You must both still be reeling.

Home dialysis is the best way; I've done it for years, I do nocturnal now, 8hrs through the night. Sons-yes I have one in his 20s! They're hilarious, aren't they!

Speak to your home care nurse. He/she should be able to advise you re sickness. It's normal on dialysis in the early days. Avoid eating after the first hour of dialysis.. but day to day your husband must be feeling pretty rubbish.

[jennieck in reply to Nicolala]

Hi Nicolala

Thanks for responding. G is already on the overnight machine - they fast tracked him because he went from Stage 1 to Stage 5 in just 3 months. We are still getting to grips with all the alarms from the machine when it is on the draining cycles. (Fifth night tonight).

Jennie

[Nicolala in reply to jennieck]

Ah, so he does peritoneal dialysis. I'm on haemo. Did pd many years ago but the overnight machines weren't available back then.

[jennieck in reply to Nicolala]

You look very glamorous Nikki after all these years - is it an old photo?? X!!!

[Nicolala in reply to jennieck]

Haha! Thanks-no it's a couple of months old. My view is that if I don't look ill, I don't feel it! I don't want to look like a kidney patient. People don't know I'm ill unless I tell them. I work in primary school; children often ask me about my arms as I have had 3 fistulas and lots of scarring. They get a diluted version, which they readily accept. I never leave the house without makeup☺

[jennieck in reply to Nicolala]

Hi Nikki

Sounds a bit like me with my chronic asthma. I tell people when I want to and hate being labelled with it. Some people get very patronising when they know. I too never leave the house without make up on (not much though!!) Jennie

[Hidden]

Hi Jennie

My husband was diagnosed with stage 4 CKD last year and started PD in April. He's in his 40s. He does feel better now he is dialysing and is sick less often, has more energy and generally feels a bit better in himself. Sometimes he eats ok and sometimes he doesn't but then he has soup and toast or something light. He says the weird taste is there sometimes but not all the time.

Vicky.

[jennieck]

Thanks Vicky -- we hope it will get better in time! Jennie

[Hidden]

The NKF has a load of printed material (and downloadable) available from their helpline

Which might be a better option if he doesn't 'Do forums'

kidney.org.uk/helpline

[jennieck]

Thanks, JMan! Jennie