new stage 4 kidney patient

[realsis]

Hi everyone, I'm a 45 year old mother of 2. I just found out I have stage 4 kidney disease about 4 days ago. I was told I'm operating at 29%
I've been dealing with severe swelling and fatigue. Even the bottoms of my feet hurt from swelling. I came here for support and to talk to others going through the same issues I am. Because I am so new, I'm still in shock from my diagnosis and frankly I'm a bit depressed ..I have not totally accepted this yet and perhaps you all can help. Thank you for listening

[SKM23435]

Hi Realsis,

Welcome to the forum.

I think most of us on here have been scared, anxious or depressed by our diagnoses sometimes.
As mentioned on recent posts it's often the unknown that freaks us the most.
Stage 4 is rather stressful as its a waiting game. Waiting to get worse and waiting to see what happens next. Added to which its all so new.

Hang in there. Chin up. You are amongst friends. There's loads of useful help and advice on this forum. Just ask. Or feel free to just let off steam.

Sue

[hotashel]

Hi,

Welcome, it is scary enough when you find out you have CKD and most people don't find out until later on in the stages. I was stage 3 when I was diagnosed with CKD stage 3 however had, had kidney problems since I was young. In April this year after a dramatic drop in function they sprung it on me while I was attending an appointment alone that I would need a transplant, even though I knew it would happen at some point I had been told it would be at least two years previously so it was a massive shock.
I have been today and another shock I am only 9% so need a rather quick operation to get me a PD line for home dialysis. All very scary but I was expecting this so not as bad.
My advice is to ask questions and if you don't understand, keep asking until you do this will take away some of the worry of the whole process. Are you taking any medication to control your blood pressure, that is very important for us suffers. I have tiredness but I have been really lucky and have no swelling, the only time that happened was when I had my second child and my feet wouldn't fit in shoes so I had to go to work in my slippers. I know what you mean about the pain my feet were so painful the only way I could bare it was for people to rub the swelling so it went away. I am lucky not only to have had people at home to do this but people in work would do it too!.
Do keep us updated on how you get on as said in the other post there are lovely people on here, wait til you meet dotty with her red lipstick shes ace
Take care

[bigbuzzard]

Hi realsis

Welcome. This all does seem really scary and daunting. The night after I went home having been told of my diagnosis my other half ended up calling an ambulance at 6 in the morning, as I'd been up all night having what she thought might be a heart attack - but was just some sort of stress/shock reaction.

That was way back in 2006 - since then I've been through dialysis (both kinds), two transplants, got remarried, had my first child, moved from the city to the country (none of which may happen to you, my kidney function was about 6%) and they've all been the best years of my life! This forum has really helped - especially in the early days. It seemed like the prospect of a normal life were slipping away through my fingers, but here I discovered that all sorts of people were dealing with CKD (chronic kidney disease) at all stages, and managing to get on with their lives as well. It really is possible - and you'll find you have hidden depths.

If you want to know as much as possible about what's going on, and be able to understand what consultants are talking about, one good thing is to get to know what the different blood test results mean. A good place to do that is the Patient View website - use one of the 'demo' logins, and look at the explanations you get by clicking on the top of each column in the 'results' tab. There's also an info section there with links about every conceivable kind of kidney disease that might be useful. Another good place is the Edinburgh Renal website: http://www.edren.org/pages/edreninfo.php

I'd echo the earlier advice about asking questions to the renal doctors you meet. I've never met one yet who isn't willing to keep explaining stuff until you're clear you know what's going on , as much as that's ever possible! And never be afraid to ask why something is (or isn't) happening - especially if you have a nagging feeling that something isn't quite right. Things do slip through cracks - usually without terrible consequences, apart from waiting longer than necessary for something.

[ScrapheapHuman]

Hello, I am 30 with two children and also have stage 4 CKD. I have always known my kidneys were bad, as I had a birth defect. My kidneys have progressively got worse the older I have got. Last year my kidneys took a nose dive, which sparked the living transplant process and that knocked me sideways. It made it seem very real. Thankfully they recovered slightly so the transplant is now on hold.

It is such a crappy disease, I get such terribly itchy legs, and feel exhausted. Just generally feel plain crap! But because people don't understand it they can be quite insensitive to it! I have found this forum to be amazing, I don't really post too much, but I do often come on here for a read. Everyone is so lovely and so helpful! It is nice to be able to vent with people who understand!

[Grey]

On the itchy legs side have them check your bloods as high phosphates causes that and with phosphate binders it can be controlled.