worried

[junecollin]

I have just found out I have a ceatinine level of 12 and am considered stage 5. Cannot seem to get appointment with a consultant and have been left high and dry and dont know what to do other than keep badgering doctors for an appointment

[Charlene_Coxhead]

Firstly try not to panic easier said then done. First question how are you feeling in yourself do you have any symptoms? My renal function is only 5.7 but most days I feel ok. I had my fistula fitted 12months ago but not yet on dialysis i am maintaining myself with the help of my consultant, diet medication and fluid restriction.

Second question is are you under a renal consultant?

Third question did you already know you had kidney problems?

Good luck June getting some answers

[junecollin in reply to Charlene_Coxhead]

Thanks for relying. I feel ok in myself. I am still waiting for an appointment with a consultant because I have just returned home from spain where I had a cnsultant that was useless. I did not know my renal function was so low until I had a blood test here. Have you got any tips about what I can eat to try to help my kidneys until I can get some help from a dietician? Can you still go swimming with a fistula? I love acquafit and wonder if I will be ble to do it with a fistula. Yes I have known that I have problems with my kidneys but it was always under control Had iit for 40 years or more.

[Charlene_Coxhead in reply to junecollin]

My plan is to do haemo dialsyis at home and after the initial healing process of about 2 to 4 weeks you can swim and bath and shower as normal, not sure if you do peritoneal dialsyis as think you have to clip the tube and cover it.

Everyones diet and fluid restrictions are very different so wouldn't want to give you specific. All I can say is eat a well balanced diet, avoid salt and salty snacks, don't drink coke or Pepsi, the best drink would be water. Here is a website that is useful

davita.com/recipes/

Do you have a consultants name and the hospital you will be treated at? If you do maybe call them direct.

Try not to worry and hold on to the fact you are feeling ok, a lot of things can affect your creatinine level like fluid and protein intake. Also the don't just look at creatinine, Phosphate, urea, potassium, sodium will all be considered. I am a strong believe that if you stay strong, positive and active and gain control which I can see you ate doing.

If i can help just message me as like to think I'm a good listener and we all need to be here for each other.

[junecollin in reply to Charlene_Coxhead]

Thanks for your advice. Its nice to know someone else in the same position, you have made me feel a lot better. No I dont have a consultants name Im still waiting for an appointment. I live on the Isle Of Wight and will feel a lot better when I can speak to a consultant, but I suppose all I can do is wait unti then. Its difficult trying to shop for food when you dont really know what you can eat anymore. Speak soon..

[Charlene_Coxhead in reply to junecollin]

June you sound like you are just like me the more you know about your condition the more you can take control and help delay your condition from getting worse. We can't ever stop it but slow it down at least. I hope you get the answers you need and seen quickly and push to see a dietician too.

Keep me posted I would like to know how you are getting on.

Take care

[junecollin in reply to Charlene_Coxhead]

Hallo Charlene, yes I will keep you informed. At the moment. I have an "urgent" appointment in August and have been told that if I dont hear anything sooner, thats when I will finally see a consultant. Until then I am trying to eat things that might help me but I LOVE cups of tea and am limiting them to 2/3 a day, misery! How long have you had your dodgy kidneys? I am now 74 and have found since I was ill in spain with the flu etc my skin looks like wrinkley prunes! Its not the sun as I didnt go out in it and It happened suddenly. Is that something to do with the kidneys? Speak soon

[Charlene_Coxhead in reply to junecollin]

Hi June

That appointment doesn't sound very urgent to me I would get the renal consultants name and call their secretary direct and explain your concerns.

I was 21years old when I was diagnosed and already in stage 4 renal failure.i was born with the condition but didn't know anything about it. I am 38years old and have been in stage 5 for the last 2 years when I got very unwell. With the help of my renal consultant and family I have delayed dialsyis. No one knows how but I'm very strict. In my favour I guess I have dairy allergies so I don't miss that as a restriction.

You are doing a great joined at trying to take control of your condition and that is the best thing you can do.

[junecollin in reply to Charlene_Coxhead]

Hi Charlene, I know thats what I should do, chase up the consultants secretary but to be honest, as I dont feel ill and am being careful, I really dont want a fistula because to me it wiil be a constant reminder that really I am not very well. orr this is a spanish keyboard with no apostrophes.

Speak soon

[Charlene_Coxhead in reply to junecollin]

I get what you mean about the whole fistula thing but my theory is I would rather have something ready for the day then have a emergency neck line until the other is fittered.

It's hard to feel well most of the time when are numbers are saying different.

Keep well Joan

[junecollin in reply to Charlene_Coxhead]

Hi Charlene, just had a phone call for consultant on 5th July so we will see what happens then. Needless to say that I am really nervous at the moment,still at least I will have more information about where I am.

Speak soon

[Charlene_Coxhead in reply to junecollin]

That's fantastic news don't be nervous I now easy to say for me but you will get answers. Make notes of your questions you have and don't worry about asking any concerns you have. This appointment is for you to take control. Ask to see a dietican too.

Good luck with it and please let me know how you get.

[mingmiley in reply to junecollin]

Low protein, low or no salt diet before you go on the dialysis, but after starts dialysis they want you to eat more protein and still low or no salt food.

[junecollin in reply to mingmiley]

Thanks for replying mingmiley. How long have you suffered with your kidneys? Does dialysis interfere with your life a lot?

[mingmiley in reply to junecollin]

I did dialysis in 1989, In 1992 I had a transplant that lasted 16 yrs, the year 2009 I started dialysis again until now. I'm 67 now. Does dialysis interfere with my life a lot? not really. Maybe because my age, I live alone in a senior apt, not working, therefore going to dialysis ctr sort like going out of the house. But if you are younger and still working I assume this will be an inconvenience to you, in that case, some people chose to do hemodialysis or PD AT NIGHT. I hope you can get in touch with a Nephrologist fast to get you to start dialysis.