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Hello, My name is Elizabeth. I am 43 yrs old and the youngest of six. I am also a genetic mutant and newly diagnosed. I have 2 girls, 10 and 12 years old. The 10 year old, Elena also has type 1 diabetes, as well as some other health concerns. If my girls have a 50% chance of getting it, which do you think it will be? I don't want to know...I love my family (my parents, sisters and brother), but none of them are aware of the needs of a diabetic, even after several years they have not made an effort to learn, and don't seem at all interested in hearing about PKD. So, besides for my boyfriend and my ex-husband (yea, I know), I don't have support with this. I was okay with that, but lately have had a fair amount of pain and don't want to whine to my family. I recently had another sonogram and am waiting for my nephrologist to call me with the results. The technician said the cysts had grown an average of 2 cm each, and there are now many more than there were 6 months ago. Is that normal growth? I felt bruised after the sonogram, even though she wasn't pressing hard. I also feel like laying on my back adds to the pain and cramping by pressing on my kidneys. I start yoga classes on Wednesday and I'm hoping that helps with pain. |
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hi Elizabeth and welcome to the best support group on the internet. as far as wondering which daughter was "lucky" enough to inherit the gene, it is not one of two, either has a 50% chance, that means both could have it, neither could have it or one could have it. it doesn't do any of you any good worrying about it. there are treatments in human trials that may slow or stop the growth of cysts, the cause of kidney failure in PKD. the best thing for all of you is a healthy lifestyle, low sodium and lots of water, keeping your blood pressure under control, exercise, no smoking, no alcohol or in moderation, no "recreational" drugs, lots of exercise, fresh air - all common sense things for everyone, PKD or not. you will find lots of support here so don't be a stranger. |
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| | From:  pkdLin | Sent: 8/19/2008 12:00 AM |
Welcome! I'm glad you found your way here. Sometimes family and friends refuse to believe there are problems because they are emotionally unavailable, not capable of being supportive for whatever reason. Sometimes too they just can't face a problem; I can relate. A few in my family are like that, and I don't have a large family. My mother was the worst because if she admitted I had issues she also had to admit that I might not be able to take care of her.
I had the same experience with the cyst growth so I guess at least it's usual for us! There is a 50% chance each of your daughters could have pkd, or not. That doesn't mean one will have it and one not so it's useless to try and guess. So far my oldest (35) has pkd. but youngest (31) doesn't. I have an older brother who doesn't have it, at least no signs so far and he is 56. My father had pkd. but grandparents were both older when they passed and so my father must've been a mutant also.
If your family won't face facts there really is nothing you can do, but whatever you do don't pretend there isn't anything happening to you. Don't use pkd as an excuse, but if you don't feel well, are in pain, ect. just tell your family and be done with it. You can aways come here and shoot the breeze with people who know the problems and believe you. Lin |
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Welcome Elizabeth. I, like you have PKD as a result of a gene mutation. No one else in my family is known to have it. I have one son, who's 30, and as of yet, shows no signs of PKD. He keeps an eye on his blood pressure, eats right, drinks plenty of water, and has never had issues with kidney stones or infections. Should he start to have issues then he will look into the possibility, but I feel, as he does that it's borrowing trouble to check into something like this if there are no symptoms. Either he will get it or he won't. There is no cure, and if he's going to develop it, there's no way to avoid it. I told him to live his life and worry should the time come for worry., but don't bother now. Lin, and Spiderwoman are correct. There is a 50% chance of developing PKD, but that means there is also a 50% chance your girls will never develop it. I'm sorry your family is in denial. The diagnosis of PKD sounds pretty scary in the beginning. Perhaps that's where their denial comes from. I was diagnosed at 21 yrs of age and really thought my life was OVER. Twenty seven years later, I'm still here  . At first my Mom was terrified, and thought that somehow having me so late in her life had caused the disease. None of us understood PKD much. Now, as the years have passed we have all educated ourselves more. I no longer fear PKD. I respect it and accept it as something that I must manage on a daily basis Over time with experience and knowledge you will stop being frightened by your disease and come to accept it as something you must deal with instead. Perhaps once your family has had a chance to digest the idea that you have this disease they will be willing to talk about it and offer you more of their support. As for educating yourself, read everything you can, ask a ton of questions to your doctors, even if they don't seem to want to take the time to talk to you, make them! Here on this board you will find a wealth of information and many people in all stages of the disease. Many of us are willing to share our own personal experiences with you in order to help you deal with things. Again, welcome, and keep coming back. This is a great place to visit, vent, ask questions, whatever. We're glad to have you. Maggie |
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Elizabeth, Welcome! What is sometimes helpful for family is to attend appointments with you so that they can become educated. Sometimes when they hear something from a doctor it's more convincing than when we say it. It's scary knowing that our children may get this illness. Fact is: if they have it they have had it since birth. It doesn't develop. You get it at birth (genetics) although symptoms may not appear for many years. For me, my abdomen is very sensitive. I do not have much pain, but noone can put pressure on me or it makes me feel very naseous. |
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Thank you for all of your support and feedback. My nephrologist called today about my 6 month sonogram (comparison from original diagnosis). My left was 14 cm and is now 19 cm. He told me what to expect, should a cyst burst, but not to worry. He also wants me to go to a urologist and kidney specialist (surgeon?) at John Hopkins in Baltimore. Six months ago I had a breast MRI, thats when they stumbled on the fact that I had masses on the tops of my kidneys and began looking closer at them. I was fine, no pain, no idea. I'm surprised at how large and tender my kidneys have become. As far as my children, I do understand that either of them may have this, or not, but I've spent 10 years fighting for her with doctors. I've seen her go through so much...MRI's, EEG's, yearly sleep studys, 3 shots a day, constant finger pricks, she doesn't even flinch when getting her blood drawn. Without getting into her medical and developmental problems more, this would be so unfair!! Obviously, I don't want either of my children to have this diagnosis. I hope that makes better sense and explains a little more of my fears for her. |
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| | | From: barb | Sent: 8/20/2008 4:53 AM |
In a message dated 8/18/2008 6:27:34 PM Eastern Daylight Time, [email protected] writes: If my girls have a 50% chance of getting it, which do you think it will be?
Elizabeth, when they say that there is a 50% chance of your girls inheriting PKD from you, what they mean is that EACH ONE has a 50% chance to inherit it. So, both could inherit it, neither could inherit it, or one could inherit it. Think of it as a coin toss where each toss has a 50% chance to land on heads and a 50% chance to land on tails. It's like this because ADPKD is a dominant genetic disease. It's not an either/or situation.
I hope that this explains things for you.
Barb
It's only a deal if it's where you want to go. Find your travel deal here. |
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