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.
Hi everyone
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... "
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... "
Take care ...
Great news that your husband has a growing understanding of this disease and will hopefully be there to support you in the months and years to come. Remember to support him, too. It's hard for spouses to cope with some of the ramifications. I'm so glad that you are taking time to rest without feeling guilty and that you are finding ways to alleviate some of the symptoms.
Take care,
Chewitt