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| | | From: CaraS (Original Message) | Sent: 5/2/2007 5:55 AM |
Hi there, I was diagnosed with PKD about 2 years ago. I will be 30 this summer and am still completely confused and lost about how PKD can/ or will affect my life. So far everything is good they found the cysts when checking for gall stones, and of course the ultrasound tech told me I had some disease when I was hoping for a gall stone. At this point I haven't done much besides go to the nephrologist, who didn't have much to say and just feel like I am sitting around waiting to get sick. I have some regular pain and during my last pregnancy had a cyst or two burst and that was pretty scary to see blood and other stuff unexpectedly. I have three beautiful little boys that I spend a lot of time wondering and waiting to see if they will have this too. I was adopted and have no family history so I am the first one I have ever known to have it and to say the least I am a bit overwhelmed, since my doctor says there isn't really anything I can do about it. So hopefully this group will be able to give me a little insight into what I can expect and what if anything I can or should be doing. I look forward to getting much more knowledgable about PKD through you guys. Thanks!!! Cara |
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| | | From: KatieO | Sent: 5/2/2007 4:29 PM |
I wouldn't say there's nothing you can do at this point. I would certainly recommend that you live a very healthy and active lifestyle! Cut way back on your sodium, your health and your family's health with thank you. We all eat WAY too much sodium, try to start cutting back on salty foods such as those that are packaged, pre-prepared, canned, cured, pickled, etc. They're all way too high in salt to be healthy. Too much salt is NOT good for your kidneys, whether your have PKD or not! Drink plenty of water. Most people are clinically dehydrated, people with PKD can be even more so since our kidneys don't tend to hold as much fluid so it passes right through. If you smoke, quit. You may want to look at how much meat you eat, most of us eat too much. Don't cut back too far but check the nutritional requirements of a healthy person your age. Eat lots of colourful fruits and vegetables. The more colour in your diet, the better. Get plenty of excercise. Have fun! Don't live your life worried about what may or may not be down the road. It's a waste of your time and energy. You'll miss the joys in front of you today. PKD is not the end of the world. 40% of PKD patients never have any major problems associated with the disease. They die of old age, many never having known they had it. For those of us who do have problems, PKD is a slow-progressing disease. We learn to deal with it. In some ways we are blessed by it because it brings out our strengths and our will to persevere and come out on top no matter what. It often makes us better people. It also makes us look around and realize there are so many people in this world so much worse off than we are. |
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| | From:  jjrrb | Sent: 5/2/2007 9:51 PM |
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Hi Cara
My father was the first one in our family to have PKD. I've done genealogy
and gotten the death information from both of his parents. Since neither one of
them had PKD his was caused by a mutated gene. I got it but my two sisters
didn't. So even though you're adopted (my kids are too) you might be the first
one with it anyway. Your children have a 50% chance of getting it so it is
possible they are free of it. When they are old enough you can get them tested.
I was 13 when my dad died and they did blood tests on all of us and declared us
PKD free. I don't know if it was my age or the fact that it was only 1965 and
they didn't have the knowledge to diagnose yet.
Your doctor is right to a certain extent. It isn't cureable but as
Spiderwoman pointed out there's lots you can do to look after yourself.
Diet is important. I'd never looked at the amount of salt on packaging until
recently. It's incredible! Even the soups that say low salt on the lable
have incredible amounts of salt in them. Regular soups are off the clock!
I've switched to salt free margerine and I stay away from salty snacks like
potato chips. I have raw baby carrots instead. They are crunchy like
chips but not salty.
Hang around... just from reading the posts here I'm feeling much more
positive than I was a few weeks ago. A few weeks ago I figured I was doomed. Now
I have hope.
Shirley |
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Reply
| | | From: pkdLin | Sent: 5/3/2007 10:09 PM |
Welcome Cara, Others have given such good advice that all I can add is welcome, oh and get a bp cuff so the second bp starts to rise you can tell your doc. and he/she can prescribe meds... In fact my son who was dx last year was put on a bp med. that has the added benefit of helping to preserve kidney function. I was put on bp meds. many years ago so I guess the area I live in wasn't so far behind the times as I tend to think.
Shirley, Now quit talking nonsense lol No one with pkd is doomed. We just won't allow that to happen. We can't feel wonderfull or positive every minute of the day but we can share the ups and downs and gain strength and understanding from one another. We have a wonderfull "family" here and we hold each other up (and yes occassionally drag each other) until things are looking up. Stick around the two of you and you will see what a special group we have here, and you will become one of us. I like to think of us as cousins! Lin. |
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| | | From: jjrrb | Sent: 5/3/2007 10:46 PM |
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Thanks Lin
I've already learned in the short time I've been here what a special group
this is. I don't feel doomed anymore, I feel hopeful and grateful
Shirley
----- Original Message -----
Sent: Thursday, May 03, 2007 2:09
PM
Subject: Re: New member
New
member
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| From: pkdLin |
Welcome Cara, Others have given such
good advice that all I can add is welcome, oh and get a bp cuff
so the second bp starts to rise you can tell your doc. and
he/she can prescribe meds... In fact my son who was dx last year
was put on a bp med. that has the added benefit of helping to
preserve kidney function. I was put on bp meds. many years ago
so I guess the area I live in wasn't so far behind the times as
I tend to think.
Shirley, Now quit talking nonsense lol
No one with pkd is doomed. We just won't allow that to happen.
We can't feel wonderfull or positive every minute of the day but
we can share the ups and downs and gain strength and
understanding from one another. We have a wonderfull "family"
here and we hold each other up (and yes occassionally drag each
other) until things are looking up. Stick around the two of you
and you will see what a special group we have here, and you will
become one of us. I like to think of us as cousins! Lin.
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Reply
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Cara, PKD may never affect you; it may simply be one of those unusual things that is found when doctors are looking for something else. Then again, as time goes on, you may slowly (and the emphasis is on slowly) develop decreased kidney function. Unfortuantely, even with known family histories, none of us has a crystal ball. The progression of my father's disease is very different from mine (thank goodness, as my father died of an aortic dissection, now known to be related to PKD, at age 41 and I'm 45). I know siblings where both have PKD, but one went into kidney failure at 37 and the other still has virtually normal kidney function and no complications whatsoever. While it's convenient to know your biological family history, it's not essential for this disease and each patient even within a family may have a very different progression. Your doctor is right, to an extent, that there is nothing they can do for you and the PKD. However, keeping your blood pressure at 120/75 or lower will work wonders for your kidney as well as your heart and the rest of your cardiovascular system (it's healthy for everyone, regardless whether they have an underlying disease or not). Eating a healthy diet, drinking lots of fresh water, get lots of fresh air and plenty of exercise will be great as well (perhaps avoiding high impact/extreme sports like rock climbing, judo and the like would be a good idea). Watch the sodium content in your food; we all tend to eat too much sodium, especially if we rely on canned or prepared foods. Most importantly, love those 3 precious sons of yours and create a wonderful, loving, caring home for them and your family. Loving life and others is by far the best thing you can do for yourself and others. Be a part of your life, don't sit on the sidelines and wait and worry. I know at times that's easier said than done and we all wonder, late at night, what the future will hold. But without a crystal ball, we have to create our own futures and you have the opportunity to make it a wonderful one! Do learn what you can about PKD so you empower yourself to be an active participant in your own health, but take it easy on the learning curve. I am thankful the internet wasn't available when I was diagnosed because it meant I had to learn about kidneys and PKD slowly, when I could access information at medical libraries and through my doctors (I was blessed with some wonderful doctors, most of them general practitioners who took patient care and advocacy to heart and practiced it with care). With the internet and immediate access to so much information it's easy to get innundated with materials and internalize so much of it that you can become frozen with fear and sheer information overload. You may have PKD, but it is only part of what you are, it doesn't define WHO you are. You are a mother, a wife, a daughter and a valued member of society. You are loved and a loving person with adorable boys (we have a picture page where you can post photos of your boys and brag to your heart's content about them; we love family photos!). You define who you want to be and who you are; please don't let PKD define that for you. Best wishes, Ruth |
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Reply
| | | From: Sally | Sent: 7/1/2007 1:50 PM |
Hi Cara,
Welcome to you. I found this wonderful group by accident and I am so thankful I did. The people here are great. You said you are overwhelmed and wonder about your boys. Well, my advice is just hug them, love them and enjoy them and do not worry about PKD in your kids until you have too and maybe you never will. My daughter who is now eighteen years old has PKD. I do not. My x-husband has it. So does his mother, brother and nephew. No one in his family even knew about this disease until our daughter was found to have it. They diagnosed her at eight months. She was having double hernia surgery and the radiologist found it. I was told by the kidney doctor that she would probably need a transplant before the age of ten.I told him he needed to make a guess and he told me that is all it would be. Well I am proud to say she still has her original kidneys and she is as I said eighteen years old. She did not have any problems with her kidneys until two years ago. She started having back pain. It got worse and then her side started to really hurt.She still has the originals it is just her right one has now had two sugeries in the last year. After both surgeries she felt instant relief from the pain. My daughters peds doctor told me when she was eight months old to just enjoy life with her. This is what we have done and it has been an amazing journey. We decided early on we would not let PKD ruin our lives. Worry some I must admit I do but I tell myself there is nothing I can do about the PKD but there is everything I can do about how we live our lives. I hope this helps.
Sally |
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Reply
| | | From: pkdLin | Sent: 7/1/2007 2:05 PM |
| Welcome Cara, I have two sons 30 and 34 and was dx. shortly before the age you were. I was devestated to say the least, thinking my two sons would end up without a mother as back then they were very young. Prior to the age of the internet there was no information available other than what the doctor divulged, and that was very little. It was total isolation as there was no way to communicate with others that have pkd... I cried a lot before I realized I wasn't going to get sick and die from pkd., nor were my boys going to be motherless. I did eventually progress to needing dialysis but my boys were all grown up, one in the Navy and the other in college. Live your life, have fun being a mother and don't worry about the pkd until it's time to worry. I would suggest all that others h ave suggested and in addition getting a bp cuff so you can monitor yours at home. Even for those who don't have pkd it's a good idea to keep track of what is a normal bp for you. I've seen many on dialysis just because of hypertension in the absense of kidney disease. I hope you keep coming to this site. We have a wonderfull "family" here. Lin. |
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