Feeling the symptoms

[StephenPeachey]

Hope you'll had a good Christmas and New Year

My GFR was 15 in December. I've had and an ECG and I'm healthy for a transplant and will being going on the list. In the last few weeks I've really been feeling quite unwell tingling in my fingers and aches in my ankles. I'm getting iron injections but still no EPO the nurses at the satellite dialysis unit says that iron might be enough although I'm feeling worse and my Nepth doctor in his referral letter says I should be getting EPO. To top it all off I had a gout attack yesterday tremendous pain and the colchine that I'm on, although working is making me feel sick. Incidentally I hardly drink and am a normal weight. I just feel it's down hill all the way I've been told it's about four to six months before dialysis. Sorry for the rambling I just need somewhere to vent

Stephen

[Elfadan]

Hi Stephenpeachey,
Have you started dialysis? or not yet?

Thanks

[StephenPeachey]

Hi Elfadan

No not yet I was told it will probably be within six months

[SKM23435]

Hi Stephen,

I remember this part of your journey well. The uncirtanty of the future and the feeling grotty.
In an odd way I think it gets better from here. Your anaemia should get sorted, calcium levels (cramp) reviewed, a plan for the future gets made. You also find you will feel better on dialysis once you start.

Feel free to rant on here. Many of us know what you are going through. Everyone is different though.

Sue

[hotashel]

Hi Elfadan

No not yet I was told it will probably be within six months

Hi,

I have just been through what you are going through and the others are right it does get better, pre dialysis I wasn't interested in food (it was a worry as I haven't the weight to loose) to be honest even looking at the food made me retch, never mind trying to actually eat it. Then there is the lack of iron, to be fair to my renal unit they are pretty on top when it comes to all that, I get the iron infusions when needed and have only recently started on EPO after about two weeks of dialysis. I opted for PD and it ended up a bit of an emergency for the catheter operation as the Dr's can only guess when things may decline through no fault of theirs I wasn't waiting the 18 months that was first thought it was kind of now. They really had my back when I needed them in the end so it was ok. I also fell asleep if I sat down during the day and was in bed for 9 each night.
I couldn't remember feeling any different I had felt crap for so long, but I promise you give it three weeks at least after you start dialysis and when your iron and blood count is sorted and you will feel better than you have in a long time wait and see (I started dialysis at 9%) My husband laughs at me and tells me i'm a bit hyper for the time of night it is. It will get better you are just at the crap part I have to agree what has been said. Have you decided what type of dialysis you want yet, if not it may be a good idea to have a think and do some research if you can.
I had some good news today I have been awarded personal independents payments so that will help.
Good look and keep us informed

[wagolynn]

Hi StephenPeachey,
I would go to my GP ASAP, and ask him what the nephrologist said about EPO, tell you are confused because you thought it had been prescribed and you are not getting it. The GP should contact the nephrologist to clear it up.

It not unusual for staff on units to think they know better, however the nephrologist may have subsequently decided to try the iron first. To make new red blood cells both EPO and iron must be available, your kidneys used to manufacture the EPO but their ability to do that is likely to have been reduced or failed completely.

Best wishes.

[codyedwardwilliams]

Hope you'll had a good Christmas and New Year

My GFR was 15 in December. I've had and an ECG and I'm healthy for a transplant and will being going on the list. In the last few weeks I've really been feeling quite unwell tingling in my fingers and aches in my ankles. I'm getting iron injections but still no EPO the nurses at the satellite dialysis unit says that iron might be enough although I'm feeling worse and my Nepth doctor in his referral letter says I should be getting EPO. To top it all off I had a gout attack yesterday tremendous pain and the colchine that I'm on, although working is making me feel sick. Incidentally I hardly drink and am a normal weight. I just feel it's down hill all the way I've been told it's about four to six months before dialysis. Sorry for the rambling I just need somewhere to vent

Stephen

You must try to be conscious with diet now since what you eat affects your condition. Limiting purine in your diet is very important if you have gout. You might as well want to check out UK Gout Society for more gout diet tips you can follow.

[Tibbs]

Also check out this link:

http://fourhourworkweek.com/2009/10/05/gout/

I think I've put it up here before, but it's very interesting. I stopped eating sugar as part of my diet, and I eat more protein and high purine food, particularly prawns than I did when I really suffered with gout. I noticed a distict drop in gouty twinges since my diet change, which I used to have even though I'm on allopurinol.

The article does mention (with a citation, #5) that limiting purine consumtion doesn't do much with regard to Uric Acid levels.