Confused

[mybirdbuddie]

Hi all, just to update you. According to my nephrologist I was back to s stage 4 again and he wasn't very happy. However , he only wants to see me at the end of December hence my confusion !! Hope you are all keeping well.

[Charlene_Coxhead]

Did he say what he wasnt happy about?

Has anything else changed in your bloods?, gained weight/bmi, blood pressure increased? Anything like that?

If your function has taken you from stage 5 to 4 that's a good thing and as long as they've repeated the bloods to make sure it wasnt just an error then that's great news. Also if he was concerned he wouldnt be leaving you 4 months. If I went 6 weeks that was a good appointment.

Do you have regular bloods and can you see your results online that if there was an issue you could call someone?

I see it has a positive thing and maybe you caught them off guard or on a bad day.

[mybirdbuddie in reply to Charlene_Coxhead]

Hi Charlene, he wasn't happy with my creatinine level which had shot up again..said he would see me in 3 months which, on receipt of my appointment letter has turned out to be 5 months. Think the problem here is too many patients, not enough consultants. I feel for them all..so overworked.

[Charlene_Coxhead in reply to mybirdbuddie]

I'm sorry to hear that and your experience with your consultant isn't the best. I'm very lucky I have an excellent consultant and although I was diagnosed at 20% renal function 2001 and 21years old after being born with the issue but didnt know, I was told I would need dialysis by 2009 and lasted till 2019 and that's thanks to my consultant his advice and a lot of hard work but so forth it. I started dialysis in the end of january this year.

If your creatinine has gone up how has your renal function improved to put you back into stage 4. Usually if your creatinine is raised that means your function is worse. I can see why you are confused.

My advise keep following a health lifestyle, try and stay active even if it's just a walk for 5minutes anything counts. Keep having regular blood tests and if you are based kn the UK and not already signed up to Patientview then sign up as you can monitor your own blood results which is really helpful as you can spot changes.

Keep fighting this disease and someone here is always going to help or support you in any way possible. We are all in similar vote all mixed ages, some young some old this disease doesnt care.

Take care

Charlene x

[mybirdbuddie in reply to Charlene_Coxhead]

Dear Charlene,

So sorry to hear that you are already on dialysis at such a young age..bless you xx

At my age of 82 thought I was being a bit thick in my thoughts but feel better that you are also a little confused . Saw my Dr today and she has arranged further blood tests each month which makes me feel much better.

What a lovely crowd of people you are so considerate and caring...you certainly make my day with excellent suggestions and advice. My grateful thanks to each and every one of you xx

[Charlene_Coxhead in reply to mybirdbuddie]

There is no need for thanks to any of us we all need some advice or some one to lean on every now again.

I'm glad you have organised monthly bloods as that will help you take control of this disease and that's the key to this awful disease. Yes I've been unlucky having to do dialysis so young but it could have been worse I got 10 years more than any one thought.

When you next got to see your renal consultant have a list of questions or symptoms dont let them hurry you out the door if you dont have answers or confused tell them. You seem to have a very good understand of what going on and I think doctors are all to quick to group people in to certain groups.

When I was in stage 5 I started keeping a daily diary if how I felt, good and bad and what exercise I achieved. It was so I could try and spot a trend. I also weighed myself daily as started to store fluid and suffer with ankle swelling.