Just Found out about Kidney Problems

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

Post Reply
beckyboo
Posts: 8
Joined: Sun Oct 17, 2004 9:03 am
Location: York

Just Found out about Kidney Problems

Post by beckyboo »

Hi All,

My name is Becky, I am 27 years old from North Yorkshire.

Just found this wonderful site!
I cannot beleive how much useful information it has. My doctor has told me none of what i have leant from this site - it's shocking!

Anyway, for the past year, my kidneys have been monitored after finding out I had extremely high blood pressure and severe kidney scaring.
I have recently been told that they aren't doing too well but I won't know for sure till next year as they need 'another plot on their graph' with regards to creatine levels.

Anyway, I am pretty scared.
I beleive I have about 30 - 40% working kidneys but this is reducing slowly.
Even though the doctor said there is nothing I can do (apart from take my high blood pressure pills), I know there is.

I have decided to take the aggressive approach and find out everything I can do to support my kidneys. The dietician was totally useless so I need to talk to someone who REALLY understands kidneys diets and even alternative ways of supporting them.

I am wondering if anyone out there has any tips and advise about how I can keep my kidneys at a safe level before they fail completely. I know in the future I will probably need dialysis, but I want to buy myself as much time as possible.

Also, is anyone out there who has had children with damaged kidneys??
My doctor has hinted (as they do, they never say it out right!) that it wouldn't be a good move...I just want to know if anyone has been in the same situation before.

Cheers guys!

Becky
debbie
Posts: 62
Joined: Tue Jun 08, 2004 11:40 am
Location: West Sussex. UK

hi Becky

Post by debbie »

I'm not much help as kidney's failed very quickly so didn't get chance to alter diet etc, however I fully agree with keeping on top of your blood pressure. A friend of a friend is in similar situation and a renal nurse has told her to have children now and not too wait. There are lots more knowledgable people on here who will have answers for you :D Take care
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: Just Found out about Kidney Problems

Post by JMan »

Hi Becky

Welcome to the site.
Docs are always seem very wary of telling patients too much before they have all the figures. Creatinine is one indicator main indicator of kidney function and the Glomerular Filtration Rate (GFR) is another (you can calculate your GFR here: http://www.kidney.org.uk/Medical-Info/k ... ey-fn.html )

Are you seeing a nephrologist (kidney doc) or is this your GP?

The 'renal diet' isn't that nice, but you SHOULD be able to get hold of books or a GOOD renal dietician if you hunt around. There are differing medical views on renal diet pre-dx as some docs think its better to try and prolong the life of a failing kidney whilst others think 'pre-empting' the urgent need for dialysis by either starting earlier or transplanting before that stage, is better. These are all things to ask questions about (of your doctor:D ) Generally it involves moderating the following: Protien, sodium, potassium, phosphorus/phosphate in your diet.

Re Kids. Yes it can be done. Yes it IS risky. You really need to talk to a good renal doc with experience with pregnancies combined with renal issues to answer that one.

Keep asking questions:)


Take a look at the site links in my sig, there are some books and diet advice within the sites of the lower 2[/url]
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
bluemoon
Posts: 120
Joined: Thu Jul 15, 2004 5:36 pm
Location: North Yorks

Post by bluemoon »

Hi Becky,

I went about a year before having to go on dialysis. I am also seen at York and I know what you mean about the dietician, I think drs and nurses are very good there though.

I think I was in a similar situation, the drs told me that it was just a matter of waiting or trying to delay the inevitable. This did not seem right. My partner is a bit new agey and I ended up with crystals round the bed, healing from some very peculiar people and all sorts of lotions and potions. Anyway one tip I did get which I tried was to have nettle tea with celery. This was meant to be a surefire way to avoid dialysis.

Anyway, in short I tried everything I saw dialysis as the worse possible outcome (it is!). But in some ways it was almost a relief to go on it. The waiting was awful and I felt really better after I went on.

Enough rambling, hope it helps.
Jim
kassie
Posts: 3
Joined: Sun Oct 17, 2004 7:13 pm
Location: Essex, England

Post by kassie »

Hi i read your words and it was great to hear that im not alone, it was like listening to myself, if that makes sense, and not much does some days, i am awaiting a biop result, but have suffered with my kidneys for as long as i can remember, the outlook at the moment is all a bit hazy ( at college and uni i was always laid up with bad kidneys and sadly not the uni bad boys!)nor was i boozing away merrily at the union bar or smoking! sorry but i have to try and be light and retain my sense of humour, its wot keeps me going at times....my career has suffered from bouts of infection and yes i worry about the future and if anyone will take me on with my health and the kids issue..i too only recently found this site and was initially nervous about going onto it, but within hours it has reinstored my faith in the human race , there are caring peple out there who understand, it helps in those moments when you feel very down and frustrated, but i try to be as positive as possible kassie, im lucky though my dietician has been nice, although its hard controlling food and avoiding all the nice things! xx
beckyboo
Posts: 8
Joined: Sun Oct 17, 2004 9:03 am
Location: York

Post by beckyboo »

Hi All,

It's great to hear from you all about your experiences and tips and I feel lighter knowing that there is some great support out there.

I looked in interest at those websites and had fun calculating the GRF!

At the moment, I am seeing a Kidney Doctor at York District - Dr jones! He is good - but I have seen no one else, no nurses or anyone. Should
I be?

I was interested to read about different Doctor's Views on what should be done. I do find it hard to get what the future holds for me...especially as I don't get much time with my doctor.

Also - does anyone have any experience of going Private?

Thanks for the Tea Tip - I am certainly going to try that. I was also told about Ginger Tea and also about wrapping the kidneys in ginger! Why not!
Have found a book about Kidney Diets but it's out of print - does anyone know of any that are still about?

Kassie - I know what you mean, when the future is uncertain, it can make you unsure of stuff. I run my own business with my partner and I am unsure of whether, as I get worse, whether I can keep it going. It's our only source of income apart from bits and bobs and I cannot get medical insurance. Mmmmm...

Plus, I am desperate for kids! My life has kind of been leading that way...but now.......!

I have been looking into surragacy and adoption, but my heart breaks knowing that my partner will never have his own kids, especially as he can as he's healthy.

Sorry, just realised I have rambled on and on....

Anyway, keep me posted on your lives and if anyone wants to contact me, my email address is: [email protected]

Keep Happy and Healthy,

Becky
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Renal Diet

Post by JMan »

Hal is the man for the diet stuff :D

HERE:
http://kidneypatientguide.org.uk/newBB/ ... hp?p=95#95 is one of his pertinent posts :D search for 'renal diet' on google will also bring up a load of information.

My only advice is try and be aware of WHY and HOW any suggested herbal remedies affect the kidneys.. Many are diuretics, making the kidney filter more and so bringing a temporary improvement in blood results (eg forcing the kidney to 'flush things through'). Some are also dangerous so do tell your doc or seek advice from a medically trained herbalist. And if you DO find something that works.. Let us know :)

I guess the other good advice is keep in shape as well as possible in any other 'normal' ways.

No experience about going private myself. Possibly the advantage you may save is TIME (in waiting for procedures etc) many NHS renal docs also run private clinics. At the end of the day its the NHS Hospitals that have most of the specialist depts under 1 roof, and its likely thats where you'd be treated in an emergency.

Hugs..

J
Last edited by JMan on Wed Oct 20, 2004 9:55 pm, edited 1 time in total.
wing
Posts: 345
Joined: Tue Aug 03, 2004 10:56 am

Post by wing »

I too was concerned about my diet when I was first diagnosed, as I saw it as something that I had control over in an effort to help myself.
I discussed this with the wonderful Professor whose care I am under and he said to me:
"take care of your cardio-vascular system. There is nothing dietary that will make any difference to your renal failure (bearing in mind that the causes of renal failure are many and varied). Take a low fat, low salt diet - as we all should, and exercise within your limitations".
His rationale was that the progression of the renal failure was inevitable due to the underlying cause (Polycystic Kidney Disease), but that it is important to make/keep yourself as fit as possible in the event that you may eventually have a transplant. He said that in the majority of cases where transplant fails, it is often due to vascular problems.Keeping your heart and blood vessels healthy, gives the best chance of success with transplant.
He also said that in the future it may be necessary to have some dietary restrictions (it was - I was on a low potassium diet for a while but my potassium came down nicely and I no longer need to stick to this) - but in the meantime :
"why deprive yourself if you don't need to?"
I love that man!!!!!!!
George
Posts: 133
Joined: Fri Apr 23, 2004 3:13 pm
Location: Wakefield West Yorkshire UK

Post by George »

Hi beckyboo, i'm just down the road from you at Wakefield and go to Leeds G.I. for dialysis. Thing with diet is we all have individual needs, there is not really a diet that is right for all. For instance I have no salt restrictions, but have to avoid green leafed veg like cabbage & sprouts and fish, but this is ok with me as I hate fish, thats hate not ate. This is because this raises my urate levels and I end up with crippling bouts of gout.
It seems there is enough Yorkies here on this site lately to form our own branch :wink: Pre dialysis I was on a low protien diet, but strangely had to have thousands of calories (despite being a tub of lard) It was butter thickly spread and plenty of cream, chips etc. Now my greatest restriction is dairy products, milk, cheese yoghurt. But can I still CAN have cream as this is not high in phrosphate.

On a positive note, It took almost 8 years for my kidneys to finally give up the ghost, so you may have more time to have your children and enjoy bringing them up than you thought, but get advice especially with you bp being high. Even on dialysis you should be able to do some type of work. I was only on dialysis 3 weeks before I returned to full time work, although you will have a few set backs along this long bumpy road known as life. Good luck for the future
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi beckyboo,

I think everyone has given you some great advice ... but you asked about diet ? Have you been given any specific advice on what diet to follow ?

Hal.
beckyboo
Posts: 8
Joined: Sun Oct 17, 2004 9:03 am
Location: York

Post by beckyboo »

Hi all!

Wow - It's great to hear from so many people. I am really touched.
You're right - many Yorkies here...! Is there a support group for people with kidney issues in the Yorkshire/York area?

With regards to diet, I think the problem is that you cannot specify a diet that will suit all - I know George mentioned that.

I have been told to lose weight and have a low protein and low salt diet.
But I know that I can be doing more to support my kidneys this is where I have the problem with advice. It was so wishy washy and had no regard for other issues. I was there - 10mins max...that was it, my dietry advice. I beleive that diet is so important and food can heal if you take the right stuff, but what's right for me?

I am a life long vegetarian so that's not a problem - but what about the rest. Some places say low potassium, but someone I spoke to yesterday said she had to be on a high potassium diet (as potassium can be lost through the kidneys). Other people I have spoken to said they were told to go on a high protein diet.

I went through all those websites on diets and it was totally fascinating. Thank you for all the information.

I think that you need to eat stuff that is specifically related to you and your problem...my problem is that I have no one to chat to about this. It's all very frustrating.

Wing - I thought the thoughts from the Professor were amazing (I wish I got that kind of thinking from my doc). It really makes sense...you need a sense of reality along with positive thinking!

Anyway, just to say that I tried the Nettle Tea with celery - it was really tasty and a great substitute for my beloved tea and coffee...Great tip - I will let you know how it goes in time.

Thanks for all your helps guys....

Keep Happy and Healthy,

Beckyboo
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi,

Just a quick note on diets.

Do not go for high potassium or low potassium - check with your doctor on this. If your kidneys still get rid of potassium fine then there should be no reason to cut down. The majority of kidney failure patients do have to watch potassium, although only when they are close/on dialysis (usually on haemo dialysis as opposed to peritoneal dialysis). There are also some patients who run very low potassiums despite their kidneys not working at all.

Again, similar with the protein. One of the reasons it is so confusing there are different beliefs in the benefit of low protein and high protien diets for varying conditions. Some doctors say follow low protein to reduce strain on kidneys, but some will tell you there is conflicting evidence that this helps. Also personally my doctors were concerned that a lack of protein would lead to malnourishment.

Reading the web sites should give you some good recipes. There are also plenty of books out there (reasonably priced or free) for recipes or information:

http://www.kidney.org.uk/books/index.html
http://www.ikidney.com/iKidney/Marketpl ... iewAll.htm

(a lot of these are American but they will send them over - obviously this makes it a bit more expensive)

Take care,

Hal.
rubincain
Posts: 6
Joined: Wed Oct 27, 2004 8:12 pm

Post by rubincain »

ignore all typos :P

Hi there, I was rushed into hospital at the begining of the year with less that 5% kideny fiunction and had to go straight onto dialysis. I too had scarred glomuri caused by my own immune system attacking my kidneys. If thats something you have. Membranoproliferative glumolomafritus sp?

then altering your diet isnt going to prolong the life of your kidneys. The diet thing is still a great idea though, the long term problems of high potassium, phosphate and blood pressure is the main thing that causes problems for people with renal failure. Even people on dialysis struggle to keep these things in balance. Personally I am younger than you at 26 so I have made a BIG effort to keep all these things under control while I wait for a transplant. This has made a huge differance to my health, so much so that I have even started my own business and I am much happier now than I was before.

What ever happens make sure you you get regular blood checks and if your creatinin keeps dropping you will have to work yourself up to a transplant, its far better to do this as early as possible so you dont have to go onto dialysis. The comon perception of dialysis is that it makes you feel better but it does the opposit to the majoprity of people, in the long term it also damages your body. I just metnion this as I feel at some point you need to focus on a transplant as its the best form of treatment. I obviously dont know if it will ever come to that for you as many fors of kidnye diseas are reverable with steroid treatment.
Post Reply