Diet, B/P, ??

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HI everyone,  2 newby" on here!  Just after some advise really. GFR 18..PTH 15, getting quite breathless now and tired! Heart feels like its really labouring when i go on exercise bike and sometimes irregular at night. Should i be on a special diet by now?  Also is coffee bad for me?  Neph lowered my Ramiprilfrom 5mg to 2.5  but B/P stil high (140/100)?? Any advice would be appreciated...thanks Andy.

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  • Posted

    Andy, I have only one kidney and CKD3 so not really able to help you as regards diet but I'm sure others will be along who are at the higher stages of kidney failure and therefore better able to advise you.

    However, I am interested in the reason behind your nephrologist reducing your Ramipril from 5mg to 2.5mg when you still have high blood pressure - did he perhaps think that the Ramipril was aggravating your kidney function?  I only ask as Ramipril is one of the BP lowering meds that I have been tried on twice but had to come off each time because of side effects.  At the time someone posted on one of the hypertension forums that I shouldn't take Ramipril as it had wrecked her kidney function.  However, my renal consultant (and other doctors, it seems) is under the impression that Ramipril is one of the BP lowering drugs that helps to protect the kidney.  I'm now on Losartan - no side effects but unfortunately it isn't reducing my very high blood pressure.

    I would be interested to hear from you - meanwhile I hope someone comes along with good advice for you.  

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    • Posted

      Hi Mrs O, I mistakenly said it was my neph.. Sorry for confusion! It was actually my cardiologist who lowered it as I was experiencing dizzy spells... Which turned out to be anxiety. I really should ask for it to doubled. But they don't communicate well and often disagree ! Loser tan? Is that the same as pravastatin? I rarely take mine as they give me joint pain!
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    • Posted

      Hi,I'm also at stage 3, my GP is always telling me to have a low salt diet but now he's saying low fat and low sugar too,which sounds pretty much like the diet everyone should be on even if they haven't any medical problems. I would definitely speak to your neph asap as lowering your Ramapril without consulting him could be dangerous. I'm on 10ml, it doesn't only lower your bp but helps protect kidney. The neph might change you to something that works that the cardiologist is happy with.
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    • Posted

      Andy, no Losartan Potassium is a totally different medication to Pravastatin. Pracastatin is a statin used to treat those with high cholesterol.  As with all statins, one of the most common side effects if muscle and joint pain.  Losartan Potassium is a medication to reduce high blood presssure - it is an Angiotensin II Receptor Antagonist, and is supposed to work on the kidney, adrenal glands, heart, brain and sympathetic nervous system to lower blood pressure.

      I did meet someone at a gym session for patients referred by their GP recently, who said she was in end stage kidney disease and was on a restricted diet to try and help.  I do know that in the later stages of kidney disease, a reduced protein diet is recommended.  I don't know whether coffee is actually bad for the kidneys but certainly too much of the caffeine it contains is not good for those with high blood pressure.  You probably already know that salt should be restricted in those with high blood pressure.  But I do think you should ask to be referred to someone who can advise you re the diet to follow when the kidneys are so low functioning.  Of course the regular blood tests will help to see whether you have any problems with your creatine, potassium, urea and sodium levels, which might be helped with diet. 

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  • Posted

    Hi,

    I have end stage renal failure and haven't long started dialysis.  Your BP is too high (both bits) why has your BP meds been lowered if your BP is like that?  you need to ask about that asap and get that under control as that will be the difference on the length of time you hold on to your remaining kidney function for.  I didnt get any symptoms until I was at about 12 % but we are all different.  Under no circumstances do you alter your diet without the say so of your consultant and dietician its very dangerous.  Every time you have your bloods done they will be checked to see what your potassium and phosphate levels are and if you haven;t been told to do anything different you carry on as you are and assume you are fine.  I had high potassium so had to change things for that and phosohate for a time but that went back to normal before I started dialysis,  If you ask your consultant to tell you the results they should do that for you, explaining what yours is and what is normal.  Please keep us updated and ask away if you have any further questions

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    • Posted

      Thanks for taking the trouble to comment Helen, just took b/p ...was 127/101. the bottom one is always quite high ? Ihave always watched what i eat anyway as i have Lupus and have found over time which foods aggravate it.(no dairy) Saw "neph" last wednesday and he said next time i go i'll be seeing the dietician, but i access my bloods online and they were mostly ok... creatinine 312, potass 5, pho 1.10,urea 18.4etc. . Am still undecide which form of dialysis to opt for, definately home nocturnal as they seem to have far better outcome rates. But cant choose between hemo/p.d? Maybe you could advise?
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  • Posted

    Hi,

    Of course no probs, your bloods don't look to bad except for your potassium which is a little on the high side but not too bad.  I would leave well alone as you are due to see the dietician, they will give you advice (in the form of booklets) of what to eat and what to limit, if they tell you to limit certain things then come back to me but like I said before don't change anything yet as is dangerous, one tip is don't eat salt but don't eat low salt either ad that is really bad.  Next the dialysis I looked on you tube at each one (much to my husbands dismay, he thought I was mad looking at in in such detail) I didn't fancy haemo I don't like being faffed with and I don't like hospitals (bad really as I will have to stay when I have a transplant but thats another story) so I opted for PD (Peritoneal Dialysis) I was 9% when they suddenly thought oh we need to do something and I was invited to have my PD catheter fitted, they made me sit there all day then tried to send my away without the op.  I told them I wasn;t leaving til they did it and they phoned the renal unit and asked did I mean it and would I really not go away, once it was established I was going no where it went ahead.  It hurt like hell when I came too, but I had morphine so was ok, I pestered to go home straight after as I didn't want to stop so I went home with co codamol! was ok until the next day and thats when you will feel it, there is loads of trapped air in your stomach (they pump you full of air so they can do what they do) it was nasty at one point it hurt that much I couldn't catch my breath and I am no wus.  Then the day after it gets better and your on the home stretch, it hurts to laugh and cough and turn over in bed and stand up  as they cut through your stomach muscles(I kind of rolled off the sofa, then got up, classy not lol). then its fine. Mine was left to heal for 3 weeks then I had training you get loads of support and help and the PD nurses are on hand 24/7.  So you have the fluid put in you (called the fill) I had trouble with this bit as I am only little and suffered splints so they just reduced the amount the of fluid and I was ok, its weird when you fill it feels like you have eaten too much dinner, then it stays there for a while (the dwell) then it empties (the drain) depending on the programme depends on how many times it cycles the PD nurses do this then you have a final fill that stays all day so the catheter can float in or you get a stich all day.  While you get used to it you may get drain pain this hurts but as you get used to the process its eases and not every one gets it I'm a skinny minny so my catheter get stuck on my inards and if I eat too late.  I didn't have anywhere to keep the supplies (It comes in a lorry every month!) so they bought me a shed how good is that oh youve got renal failure have a shed, every cloud and all that.  Its not so bad once you get into it, sorry if its more detail than you would of liked but they didn;t tell me all the bad bits and its best to know from someone who has done it and not just read the leaflet so to speak.  if you have any further questions please ask

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  • Posted

    My god..... PAIN PAIN and more PAIN by the sounds of it. Could be "hemo" for me i think!! Thank again..for the honesty and advice.
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  • Posted

    Hi,

    Its not that bad oh course its going to hurt they cut holes in you! For haemo you have a line in your neck that is prone to infection while they grow your fistuala in your arm (conect a vein and artery together and then wait until its wide enough to use) you a severley restriceted on what you can eat and drink (sometimes ML's per day) the fistula can get blocked and you have to go to the hospital 3 times a week and sit there for hours,  you can have really low BP if they take too much fluid off you and bad cramps.  Thats why I said look into both properly as once everything has settled with PD its fine and doesn't hurt at all, I have only had problems due to my size.  Good to your local haemo unit and ask to have a look and see if the patients will talk to you, thats what I did to make my choice, when I say choice its not like we are picking if we want carrot cake or chocolate cake neither choice is nice however you need to pick and you need to be prepard the the reality in that its not nice to start with.  What I can say is give it three weeks and you won;t feel tired anymore, you won't be as breathless and your appeitete will return.  If you choose one and it doesn't suit you, you always have the option of changing, they will always mention PD to you and try and sell that as its cheaper for them as you are not in the hospital all the time, its really not that bad there was no point me telling you I skipped home from the hospital and got on with things as normal as that wasn't the case my GFR was dropping by the day and I was in a bad way but I'm great now and don't mind doing what I have to do at all.  Transplant for me next my friend is a match so she just has some final loose ends to tie up then we will more than likely go ahead...now thats scary as thats a massive hole cut in my side.  We are all planning a massive "we are not dead" camping trip with all our family and friends so we don't think about what is to come just our camping trip.  I feel lucky I won't be in hospital alone I will have her with me so I can look after her, my brave lovely friend take care and keep me updated with where you are up to and what you decide take care x 

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  • Posted

    Hello,

    I was sad to hear Helen's reply. Can I give you comfort and encouragement? Sadly,Helen had an unusually bad experience. I talked to haemodialysis patients who said that they preferred not to have a roomful of boxes and no reminder at home of dialysis and opted for this method because it meant their 3 days a week could be a social outing and they could go on holiday provided they booked their dialysis days ahead near their destination.

    I have peritoneal dialysis at home. I asked for sedation when the peritoneal tube was insertd. I knew nothing about it, had absolutely no pain or discomfort afterwards, had a test run the next day having a little fluid in an out - the out (drain) elicited a small 'ouch' from me but I would not call it a pain! It was left six weeks to heal before beginning dialysis at home (having had the training).

    I would call it a bit of a nuisance but think of it as my lifeline and therefore my friend.

    I plug myself in at night and let the machine do its' thing. If I need a night off, it will not hurt me to miss a night occasionally.

    Breathlessness: I suffered this as a side effect of BP medication - very badly! There are many other choices of tablets.

    Some people choose to dialyse during the day - no Machine - every 4 hours for about 40 mins. attach a bag of fluid and a drain bag and read, watch TV or work at your desk.

    Diet: ask for a discussion with the dietician and stop worrying.

    Good luck.

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    • Posted

      Hi,

      Don't feel sad for me I wouldn't want anyones pitty!.  I am intersted to hear what type of catheter you have? I was offered an epidural where I would of had to stay in hospital, or general where I could go home after.  I had three insicions, one where the little tube comes out, and two other cuts about an inch and a half long.  I was only being honest when I said it hurt we are all different and patient do suffer with drain pain! like I also pointed out the issue I have had have been explained to me and are down to my size, I also explained that no everyone has problems and gave an account of my personal situation.  I can also confirm that I don't have a bedroom full of boxes as I can't be doing with mess.

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    • Posted

      Thanks Sonia, unfortunately I am one of those worrying types! But I do take comfort from your words. I did think that line in neck was emergency only tho! Needless to say I'm still very undecided as to what form of dialysis I will have..... but all your input is very much appreciated. Having a little break in sunny Scarborough this weekend and some red "vino" so happy enough x!
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