New and concerned

[James W]

Hi,

I went to my doctors 2 weeks ago for a check over. The reason I decided to go was because my mum is on dialysis and I have high blood pressure. I got all my results back which were normal apart from my gfr? rating which was 49, then the doctor informed me that was about what a person in their 60's should be and that I was at stage 3 renal failure. I am only 32 and got married last year. This news has sent me into a bit of a spin (only found out thursday). She has sent bloods and urine for a double check and wants me to go onto ace inhibitors, I have many many questions for her, but what should I really be asking? Who else do I need to see? What can I do now? I have a full check about every 2 years and my rating last time was in the 50's and my doc said that was no issue, I have another appointment Wednesday to get the second set of results and get on the meds. Thanks

[JMan]

Hi,

I went to my doctors 2 weeks ago for a check over. The reason I decided to go was because my mum is on dialysis and I have high blood pressure. I got all my results back which were normal apart from my gfr? rating which was 49, then the doctor informed me that was about what a person in their 60's should be and that I was at stage 3 renal failure. I am only 32 and got married last year. This news has sent me into a bit of a spin (only found out thursday). She has sent bloods and urine for a double check and wants me to go onto ace inhibitors, I have many many questions for her, but what should I really be asking? Who else do I need to see? What can I do now? I have a full check about every 2 years and my rating last time was in the 50's and my doc said that was no issue, I have another appointment Wednesday to get the second set of results and get on the meds. Thanks

High James W, welcome to Kidney Patient Guide. Ever since they changed to testing eGFR more people have been diagnosed with kidney problems it seems.
Stage 3 is:

CKD stage 3 is eGFR 30-59 ml/min, a moderate reduction in kidney function

See:http://www.kidney.org.uk/Medical-Info/c ... index.html

Ace inhibitors seem to be the 'default' bp tablet these days, but there are other ways to control BP, such as diet, exercise, relaxation techniques.

Write down your questions, and your worries, don't get fobbed off with vague answers, at a pinch you might be referred to a nephrologist(kidney specialist) But providing you kidney function is stable it's not a lot to worry about..

Note I'm not a doc, but good luck with grilling you GP:)

J.. who coincidentally is also a James W.

[dkjane]

Hi James,
When I first got diagnosed.....I was told to cut my meat consumption
way down. Later was put on a low ace-inhibitor, which is renoprotective.
Please do take care of your BP..should be 130 or below.
Good Luck from Jane
( 25% 1979, 50% 1997, 30% 1999 and 15% 2007)

[Helen Rambaut]

Welcome to the Board. There are lots of us here of different ages who have been where you are now.

With a mother on dialysis and a GFR of 49 at age 32 I would demand to see a nephrologist myself and get into the system. In my personal opinion its important for you to be satisfied as to the reasons why your GFR is where it is. I am not a doctor but am someone who was sent to the nephrologist 30 years ago at age 19 and at that stage I think I had about 75% kidney function. The key was that my mother was on dialysis. It was another 25 years before I needed dialysis myself. I do not know why your mother is on dialysis so the fact that she is may or may not be relevant to you.

Within the last 2 years GPs have been given targets to monitor blood pressure etc and look for early signs of kidney disease. One of the 6 categories of people they should specially look at are the siblings and children of those in end stage renal failure (stage 5). I got this info from the NKF magazine Kidney Life.

At my hospital, patients who are at 20% kidney function or a year away from dialysis are being told about the various forms of dialysis treatment and the living kidney donor transplant programme. I expect that in the future its likely that more relatives of stage 5 kidney patients will be picked up at an earlier stage in the screening for potential live donation. Has anyone in your mother's family or friends been told about living kidney donation?

Helen

[James W]

Hi Helen,

No one in the family has been talked to about this programme, I think we still find it difficult to talk about the situation, obviously the support is there between us all, but detail we shy (rightly or wrongly) away from at this time. From my perspective I am getting told by independant doctors and a nurse who is a friend of the family that at a gfr of 49 at 32 is recoverable with me being fit, non smoker, non drinker, not suffering from anything else and going on ace inhibitors. It seems the more I read the more it's a bit of a lottery ( I am sticking firmly in the it's going to be fine if I work at it camp!). One of my points is I need to get in with a nephrologist. My mum has only one kidney, so I will need to check on that too.
Thanks
James

[bigbuzzard]

Hi James

Your story sounds very familiar, in some respects. In my case, I inherited Polycystic Kidney Disease from my mother. She was an dialysis for a couple years, then had a transplant 14 years ago. I was tested for the condition, and found that I too had it, though at the time still had normal kidney function - this was back in my early twenties. They said it may or may not ever affect me, abd that if it did it wouldn't be until my 40s/50s, and there was nothing I could do to influence it. Since then, I always had high blood pressure (diastolic >100), and the docs always said maybe I should be on something for this. I always resisted that, as I felt unwilling to start taking drugs that would have to carry on forever. I kept saying I would lose weight/eat better/do more exercise to try and reduce it - but never really did those things seriously. The next time I saw a renal doctor was after a blood test last year gave me a creatinine level of 960 micro mols/ltr. This is the blood result they use to estimate your GFR. That gave me a GFR of 6 - so I had to start dialysis immediately (which made me feel much better than I had!).

I've since discovered that long term high blood pressure can damage your kidneys and cause them to deteriorate more quickly. I wish I'd known that earlier, as I would have been much more amenable to taking the blood pressure drugs. I've now been on those since Feb 2006, and they seem pretty benign, and work really well. Whether doing this would in fact have made any difference to the rate at which my kidneys failed with PKD I have no idea.

I'm now 39, and had a living donor kidney transplant from a friend 3 weeks ago - it's made me feel 20 years younger!

I hope some of this is useful. It sounds like you have exactly the right attitude. Do make sure you get referred to a renal specialist, so you can keep tabs on how it's going.

Having your mother's medical history written down would be a useful thing to take with you when you do see someone, in case there's an hereditary element.

Good luck. Send me a PM if you want to have a chat on the phone about all this.

Regards

Andy

[James W]

Cheers Andy, appreciate the support. I will drop you a PM later on this week. (In with the Doc on Wednesday)

[James W]

Bit of an update. Got some more results back. GFR up 2 to 51, creatinine 144, something else (forgotton what) that is expected to be 2.6 is 26 (they say thats not an issue), no protein or blood shown in my urine. No one seems particularly rushed or concerned except me and my family. So I have booked in with a BUPA renal specialist next week. It's going to cost me alot, but I want this sorting. My mum had to go back into hospital for a few days this week and asked if she could have passed any of her issues on, i was pleased the answer was no (more for her than me).

[jenjen]

Bit of an update. Got some more results back. GFR up 2 to 51, creatinine 144, something else (forgotton what) that is expected to be 2.6 is 26 (they say thats not an issue), no protein or blood shown in my urine. No one seems particularly rushed or concerned except me and my family. So I have booked in with a BUPA renal specialist next week. It's going to cost me alot, but I want this sorting. My mum had to go back into hospital for a few days this week and asked if she could have passed any of her issues on, i was pleased the answer was no (more for her than me).

Hi, try not to be too concerned about minor fluctuations in GFR and creatinine: it is more a general upwards trend that is the concern. Creat/GFR fluctutates for a number of reasons, so try not to stress too much

I would also say that all renal docs generally are really good at their jobs and know exactly what they are doing, and if there was anything that was going to cause any major problems in the short term they would be straight on it.

The main issue for you to prevent a further decline in renal function in the long term is to make sure your blood pressure is controlled. You could also go on drugs to try stop the decline but it really depends on what is causing your kidney failure. However, even with good drug control, kidneys are weird organs and just do what the hell they want and there is nothing you can do about it.

I personally would trust the renal docs, but with kidney stuff you need to keep asking questions and reading as much as possible as there is a lot to learn. Have you talked to your regular renal doc about these concerns?

[Hal]

Hi James,

Sorry to hear you've had some issues. However, as Helen and others have said, it is very good that these things have been picked up early.

Its also a good sign that there's no blood and protein in your urine.

Your doing the right thing taking this further, personally I think your GP should refer you to a nephrologist rather than trying to treat this herself.

Going to see a Bupa specialist will help you find things out I'm sure, but of course you are entitled to get this done for free on the NHS (waiting longer of course).

I'd advise you to make sure whoever you see does a proper investigation if necessary into any cause for the low GFR. This is not to scare you, but there are many people who end up on dialysis because such investigation or proper follow up has not been done - that said I'm sure you will be fine.

Regards,

Hal.

[James W]

Ok, so it's been a good few months since I posted and surpsingly coming back to the site brought back the anxiety I felt originally. But things are looking up. Went to the hospital for my second 4 month check up and my figures are taking a slight upward trend in function. The consultant seems pleased, (I was driving down the street peeping my horn at people I didn't know and waving!).

So..am I still worried? A little, but it doesn't take up every waking moment like it used to. Am I more positive? Yep, plus the consultant last time gave me loads of confidence back.

So the thing I have learnt is that if you get in early you have a really good shout.

Just thought I would post this up.

[amanda in CA]

Is the consultant that you have seen a nephrologist? Given your mom's history and now your problems, you need to have a full renal workup to determine why your results are not normal. different renal issues require different treatments. I don't want to depress you, but there can be fluctuations in blood results and the underlying causes can still be there despite this. It is crucially important that you find out what the underlying cause is. My advice is, if you haven't seen a nephrologist as yet, you must do so. It is your right to see one and something that is very important given that your mother has renal issues.

[James W]

Well it's been 3 years so thought I would check back in. My gfr has varied in that time between 50 and 43, Creatinine has stayed pretty stable around 150-160, my doc (nephrologist) tells me not to worry, as I am doing everything I can, and my results are "stable". Although my results fluctuate between 50 and 43, they are very slowly declining. So I have taken a more pro active approach, seen a dietician (told I don't need to at this stage, but I think prevention is better than cure) and also having my kidneys re scanned to see where we are.

Recently though I am finding it difficult to keep positive about this situation, when really thats half the battle, Doc's are telling me I am stable, and not to worry, but that goes in one ear and out the other!! So I am doing all I can now to take it out of fate's hands. I have started looking at kidney diet books, in particular a book called kidney diet sectrets, and was wondering if anyone had used this book or had results from other books?

Oh and I re read my thread and there were some genuinely nice comments on there, so thanks again, they helped.

James

[JMan]

James, slowly is the key word here, rather than dwelling on it, try to enjoy the living, the fun, the laughs.
I'm aware of the book, and having had a look at the website it's very much aimed at you buying the book, dare I say it typical, also most of the terms will refer to US numbers and protocols which may not apply here in quite the same way.
I''d recommend Eating Well with Kidney failure from Class publishing if it's diet your concerned about.

http://www.class.co.uk/books-kidneys-57

Cheaper on Amazon usually. The Class books are I think NKF approved so they have medical backing.

Have you asking for counseling or help on stress management to ease your worries? Just a thought.
The mind plays a lot of tricks when your worried about something and it can definitely be said for kidney failure. It's all to easy to look at the symptoms on paper, what the doctor said etc, which isn't always that helpful..

Take care

J

[cazpi]

I have a kidney diet book, it's american, I can honestly say I would never cook or eat any of the items in it! I'm vegetarian for a start, and the vegetarian section is tiny, it is also about 50% cakes, desserts and sweet stuff, and lots of the ingredients are things we don't have here "coffee rich" "graham crackers" etc.

Simpler to just learn to identify the foods you need to avoid (or only eat a little of) and eat as normally as you can while working round those.