Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I just want to say hello to the group and how nice it is to find such helpful and supportive messages here! I'm 48 and in stage 3-4, GFR hovering around 35-40. I was diagnosed in my 30's, my mom died of it at 56, her mom at 44, so I've learned a lot about this disease over the years but it still throws me curve balls sometimes! I feel blessed to have been pretty healthy and even an active runner for many years (and still try to when I can). But this is the first year I can sense things really catching up with me. I lost more than half my function in 2014. Got a bad kidney infection in October and lost a little more. Lot' more pain and fatigue now, but I'm still trying to work full-time, mom of 3 boys, and newly separated, moving toward divorce, so it's been a hard stretch, but am hoping for a better 2015! Anyway just wondering if anyone else experienced such a rapid loss of function, and what I may have to prepare myself for. My neph is very positive and I'm trying to stay that way and not be scared. I get labs done every 2 months now, going in again next week. Also, I went through menopause last year too. I suppose it's one less thing to worry about...LOL... but still! :) Anyway, greetings to you all, and wishing you all the best!
Heather
Welcome to the group. I am the same age as you and my kidney function is around 35%, too. I become very tired, very easily (though I'm not sure how much mild/moderate anaemia may be contributing to that). I have the problem of an enormous liver as well. My function dropped more rapidly last year, but still there is no way of knowing how long the kidneys will keep going. The decline may continue at the same rate, speed up or slow down. Some have seen a plateau for several years. All we can do is work with what we have now. You have certainly had a lot on your plate recently and going through a divorce is very stressful, which can also affect your health. I hope that 2015 is a more positive time for your and your kidneys.
Look forward to hearimg more from you,
Chewitt
I am a new to the group as well.
GFR of 12- Very tired however I am determined to stay active and make good food choices to maximize my energy levels.
Still working full time and trying to stay positive & motivated.
Glad to be here with others who understand what I'm dealing with
I'm 63 and my function is dropping more rapidly lately. I don't know why because this disease is supposed to be predictably progressive. My GFR is 17 now, which really shocked me. I was hoping it would stay in the 20's for awhile. My new neph is doing blood tests every month. It's said dialysis is started at 12-15% but I've heard you can wait until as low as 8%. I'm not looking forward to it but I'd love to be able to start home nocturnal PD now so I could have more energy.
My dad died at 55 but his sister lived to 96 so you never know. I don't know which parent passed it on but their dad had a heart attack at 61 and their mother lived into her 90's as well.
It sounds like you have a good doctor and it's good you're able to stay positive. I think my blood tests were still 4 months apart when I was at your GFR. I'd love to have had them more often cause I use them as a guage to make sure I'm eating properly. I've found lately that I eat by the clock. I'm seldom hungry.
The fatigue is what really gets to me. I feel fine otherwise *knock on wood*. I'm finding it's hard having to give up a lot of things I enjoyed because I'm so tired.
Good luck and please stay in touch so we know how you're doing.
Stay in touch.
Shirley
I was taking estrogen but had to stop due to a pulmonary embolism this fall. (Blood clot in lung). So far dialysis has gone fairly smoothly. No nausea or pounding headaches. Those were my big fears. Some people tend to crap but I still urinate and have not had to have excess fluid pulled yet.
Hopefully you will still have lots of time before you have to worry about dialysis. Welcome to the group
Then I drink so much water that my eyeballs are floating - haha
Any good ideas or recipes you all could share?
I don't know much about eating vegetarian with PKD. I was told not to eat high potassium foods which includes things like nuts and lentils. But I was also told to limit protein to a piece of meat the size of my palm and about 1/2" thick. It's only a theory but they believe limiting protein early in the disease slows progression. Hopefully you've checked with your dietician to see what foods you can eat. I've found that I can eat most foods I ate before I went on a renal diet if I adjust them a bit. Absolutely no salt. Other spices can make up for the lack of salt and I've noticed most recipes have onions and garlic included, which I can't eat. Onions make me sick. One soup I make a lot is beef barley using the Campell's no salt added broths. There is a vegetable one you could use. This recipe was given to me at the kidney clinic and is a variation of the recipe on the campbell's site. I have to leave out the mushrooms too. It replaces them with celery. I make two batches at a time and it freezes really well. Sometimes I just don't feel like cooking. I also have to limit milk (calcium) to 1/2 cup a day but my neph didn't quite understand why I wasn't allowed yogurt. I eat it anyway cause I like it.
I have a Pinterest account and have a section with a few renal friendly recipes here: https://www.pinterest.com/meadow1951/renal-friendly-recipes/ My daughter likes most of the recipes even without salt added. She can add some at the table if she wants. Also the low sodium kikoman soy sauce is okay for using in stir fries.
I am new to the group and can't tell you how much relief I have from reading some of your posts. Chrissyblue, I am 57 and my GFR is up and down between 32 and 40. It makes me feel better to hear you tell about being tired. I am tired 90% of the time and like Shirleymac, sometimes my legs and arms are so tied I have trouble getting up stairs and I easily become short of breath and have heart palpitations. I was very active until about 6 years ago when I began to feel tired and pushed myself tearing my ACL. After surgery I never quite got back to the fitness level again. ( this is when my diagnosis came from an ultrasound when my back was damaged at that same time) I am always being told that my kidneys should not make me tired, that there is no reason I should be. I get the feeling my doctor feels I am neurotic. I get such bad heart palpitations that my husband can feel them with his hand on my chest and yet there is nothing wrong with my heart. Recently if I don't eat well, I vomit. I am starting to feel like I am going crazy! My husband thinks I am "crying wolf" and also tells me that because the doctor says that I shouldn't be tired it is all in my head and I am just being lazy ( I am not a lazy person. I have a full time, very stressful career, take care of my aging mom and have adult children with grandchildren. I am not sure if my marriage will survive this. And the most bizarre part, I have numerous cysts on my kidneys, and my kidneys have what they call cortical thinning with my left kidney almost totally destroyed. Not typical for PKD, except for the cysts. My liver is also covered/filled with multiple cysts and lesions. My liver is enlarged but my kidneys are shrinking.. The blessing here is that my swelling is not nearly as bad as for some of you. This was the same for my Dad ( diseased 70 after 10 years on dialysis, my Aunt ( kidney transplant at 69) and my grandmothers autopsy showed and was labeled as death (60 yrs) from shrunken kidneys in 1979. I cannot find any information on this variant of the disease. If there is anyone out there that has heard of this I would love to hear. IN the meantime, please know how much this site means to me and I wish you all the comforts that can be had from the care and love on this site! I am in Manitoba Canada and there is no PKD support group here. If there is anyone else out there in Manitoba that would love to meet and discuss our support for each other, I would welcome the chance to meet! I feel very alone...