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hi there 

I'm new to the kidney forums, wanting to reach out to others dealing with the same thing.

have CKD due to a genetic condition called Alagilliy syndrome :/ I'm 39 with a husband, 2 cats & a rescue dog 

I'm currently in stage 3 almost 4 with my latest eGFR rate being 31 and my creatine at 176.

The only restrictions right now are to try & go more vegetarian... Any words of wisdom from those dealing with it longer ? 

Hi,

Things can be a challenge for sure, I find the diet very restrictive for my partner who isn't great with veggies. I think one of the bisect things for us has been to try to stay positive, which on some days can be difficult. Live all the fur babies, we have two cats, one is deaf and one a rescue and one geriatric half blind poodle who is barometer for when ?John is not feeling well. :)
Hello,
I have PKD. Got is around 15. Scheduled for a pre emptive transplant in April. My husband of 26 years is my donor ❤. Having surgery at St. Paul's in Vancouver. We live in Williams Lake.
GFR *
Hi, I'm in Vancouver and was diagnosed with FSGS in December 2013. Recently I've been wanting to talk to anybody about my experience and compare notes with others going through renal failure. My friends are sympathetic and understanding but they don't really get it. So I decided to find a support group and here I am.

Welcome to the board Wendy. I know you will find a lot of people willing to chat with you and discuss what is going on with them and their kidney issues and it helps to talk to others that are in the same boat as you are. It is very hard for people that do not have kidney disease to relate to those that do simply because they can  not feel the effects of the disease that you feel.

There is also the psychological side of the disease and that is half the battle in and of itself.

One of the the things I found most helpful is to not live for the disease but to live with it. With modern treatments available today kidney disease is very manageable but it takes a lot of effort, time and work, and like anything else you only get out of it what you put into it.

I think a lot of us get into the why me mind set and become depressed and that's easy to do but the truth is almost all kidney failure is no ones fault it just happens. It is a disease that occurs across the world and no one is immune from it. Very few people have kidney disease from something they did in life that caused it like drug abuse or coming in contact with an outside element that causes the disease to flair up. There is some genetic possibilities but the reality is no one knows for sure what causes it. Again it does no good to point fingers looking for blame. Your time is better spent dealing with the condition and working on keeping the kidney function you have left with proper diet, exercise and medical treatment.

Any questions you have just ask and I am sure others will jump in to try and answer what they can for you.

Thanks Pete. It's heartening to know I'm not alone with this disease. I've felt that way since it all began. I look forward to finding people to connect with and talk to.
Hi everyone

My sister always tells me not to check on ehealth after a blood test but darn it I can't help it. I had a test on Wednesday and I'm at 14%GFR now. I'm not surprised, I knew it was coming. I've been extra tired lately, appetite isn't great. I have a neuphrologist appt on Tuesday. Problem is my doctor was in the wrong health authority and she's retired so I have to go to a new doctor/clinic in my own health authority. Wendy I see your from Vancouver. My neuphrologist was in the Diamond Center, very easy to get to. But that's the Coastal Authority and I'm in Fraser Health Authority which means I have to go to Surrey now. Driving in Surrey is even scarier than Stage 5. Apologies to anyone living in Surrey but too many shootings at cars lately. I get lost trying to find it every time. Ended up in New Westminster even when I was using a GPS.

I have no idea where I will go from here. Do people in Stage 5 still drive? I feel way too sleepy to go further than the closest grocery store, even at that I may start ordering groceries in.

Other question is about Ontario. I have family in Ottawa. I grew up there. It is more my size of city, everything is more convenient - except the weather. Does anyone know if services in Ottawa would be easy to get since I'm moving from a different province? I want to do home dialysis. I wanted to try PD but can't now because of a scar.

I'd have to sell my house here, etc. But I'd want to do that soon as long as it's not to late to decide that.

Shirley

Shirley they can put an emergency inlet in your neck to get you on Hemo therapy a lot faster so that is not an issue. The tissue is finding a clinic you can get yourself to and I can not help you on that. They will need to do surgery to get a fistula put in for long term hemo dialysis and that takes about 6 months total healing time but the emergency fistula will hold you until then,.. Your in for a lot of new training so get ready to learn a new way of life and diet and exercise.

Best of luck to you!!

Thanks Pete. I can pay to have someone drive me here and it's deductible under Health on income tax - but I'm really way too cheap to do that, aside from maybe doctor appointments. I want to do home hemodialysis eventually but that's 6 weeks training with a caregiver and I don't have a caregiver here.

Thanks about the emergency inlet. Didn't realize they could do that or the emergency fistula. They must have done that on my dad 50+ years ago. He only had 5 hours to live. I don't understand why my previous doctor hadn't set up the fistula at least or sent me to a dialysis specialist like she promised 2 years ago.

Shirley

Not sure of why things were not done Shirley. Most doctors can not force a person to start dialysis and until they decide to commit to it there is little they can do.

Most times it is the patients reluctance that causes the delay. I know from talking with you the last year you have wavered ever which way on this and now your GFR has dropped enough your starting to take this more seriously and that's a good thing.

I know for me I waited until mine dropped to 20 percent before I got serious and now I regret I did not start sooner but you live and you learn. No going back now you just have to live for the future. 

All of us have different situations and circumstances that tend to dictate how we react to being told we have kidney failure and each is unique to each individual and their ability to care for themselves with the support and finances they have available. No one is to blame just life really.

This is true Pete. I did waver cause I'm depressed a lot, especially after my husband died. I also don't know if my other blood readings are affecting the decisions. Since I had chemo my red and white blood cells for sure are messed up. I don't understand the other readings enough to know what's what.

I knew this was inevitable cause I have PKD and this is the way it progresses. I've done my best exercise and diet wise.

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