|
|
 |
Reply
| | From:  Jrsygirl17 (Original Message) | Sent: 9/6/2007 8:09 PM |
Hi All - I'm new here and am hoping to get to know some of you better so I'll start w/an intro about me. My Mom has PKD and was diagnosed just over 10 years ago. At that time I had a kidney ultrasound done which showed nothing. They told me if I was going to get it, it would have shown up by the time I was 30 so I should be fine. Well...not so. For 10+ years, I thought I had dodged this challenge. I've accepted the diagnosis and am now learning what I need to do differently to keep my kidneys functioning normally. I want to prolong the kidney function as long as possible. I'm a single Mom of 2 boys, ages 13 and 4. Of course, I'm concerned about them inheriting this. Looking forward to learning more, Donna |
|
 First
Previous
2-9 of 9
Next
Last
|
|
Reply
| |
hi Donna and welcome. you really don't give very much information about where you are with your PKD. as for keeping your kidneys functioning normally, the best advice is to live the healthiest life possible, don't smoke, if you drink, do so in moderation, eat healthy but go low on salt (also sugar and fat, just for general health). it is good for your children to learn to leave salt alone too. it is not necessary, or even helpful to limit protein but like everything else it should be in moderation. vegetable sources of protein are better but don't eliminate meat from your diet without nutritional guidance because unless done correctly you will lose nutrition. you should be getting plenty of exercise and drinking lots of water. go easy on caffeinated drinks since caffeine can add to cyst pain and it has been suggested that it can cause cysts to grow. as for your sons, it is best to keep them very healthy and allow a very normal life. there is no reason to test them for PKD and it would be unwise to do so since it may cause insurance problems in the future. I hope you will be happy here and will visit often. |
|
Reply
| | | From: PKDmom | Sent: 9/7/2007 11:16 PM |
Hi Donna, I just wanted to say hi and welcome to the group. I noticed your screen name is "Jrsygirl17". Do you live in NJ? I live in Mercer County, NJ. Anyway, the best way to take care of your kidneys is to take care of yourself... Eat healthy, drink water, exercise, and limit soda, salt and caffeine. Also, make sure that your blood pressure is in the normal range (or lower). There are a lot of amazing people here who will offer wonderful advice and support, so if you have any questions at all, just ask! -Marlene- |
|
Reply
| |
Welcome Donna!! Sorry to hear you were diagnosed, but glad you found this group. There is alot of knowledge here. Jenny |
|
Reply
| | | From: pkdLin | Sent: 9/8/2007 12:52 PM |
Hi Donna, welcome to the "family"! My name is Lin. and I've been on dialysis for six years. I have two son, one with pkd.. When I was dx. they were much younger and I worried about them having it, and too about them being left without a mother, but I'm still here.
I live in NJ too, Sussex County. Hope you love it here. Lin. |
|
Reply
| | | From: barb | Sent: 9/8/2007 6:21 PM |
Donna, if you are not yet a member of the PKD Foundation, I urge you to join (you can do so online at www.pkdcure.org) and get on the mailing list and also on the NJ chapter's email list. You can send me the info for the email list online at [email protected]. If you want to talk, I'll email you my phone number. You can also come to one (or even both!) of our chapter's walks on Saturday, September 15 on the boardwalk at Seaside Park and on Sunday, September 16 at Liberty State Park in Jersey City.
Welcome aboard!
Barb Seidman
co-coordinator
New Jersey chapter
PKD Foundation
|
|
Reply
| |
Donna, Welcome to the family...and I say that not only because we share a PKD gene but also because this truly is an online family who supports one another through all our ups and downs, PKD related or not!)! Marlene covered it well: Eat healthy: low fat, low sodium. Learn to read labels! If you have excess weight to lose, now is the time to do it. Just try slow and steady weight loss, nothing drastic and not the high protein South Beach diet craze. The motto needs to be all things in moderation! Ask for a consult to a renal dietician for diet recommendations even if you have normal kidney function right now and don't need to lose weight; they will give you excellent recommendations for now and in the future! They can also help you develop family and kidney friendly menus for the entire family to enjoy. Drink lots of water: As long as you don't have a fluid restriction (which generally doesn't come until late in the progression of the disease), you should probably be drinking 2-3 liters of water per day. Keeping very well hydrated is crucial; it keeps kidney stones from forming (we're at a higher risk of forming stones, ugh!) as well as keeps the kidneys flushed and in PKD mice has shown to be almost as effective as a medication that's in human trials as a possible treatment for PKD. And yes, your body will get used to that intake and you won't be peeing all the time! Keep your blood pressure low: 120/75 is the AMA recommendation for normal blood pressure; it's no longer the "below 140/90" we grew up with. If your BP is higher than the 120/75, talk with your doctor about how to get it lower. There are specific blood pressure medications that have been shown to be beneficial for patients with kidney diseases, specifically ACE inhibitors (lisionopril, etc.) and angiotensin receptor blockers/antagonists (ARBs such as losartan or irbesartan). Keeping your BP low is probably the most important thing you can do. Studies have shown that keeping BP low can add 15 years to the life of a kidney! Get plenty of exercise: the standard recommendation for maintaining health is at least 30 minutes 3-5 times per week. Avoid contact sports such as kickboxing...not good for PKD kidneys if they get hit as they're more fragile than non-cystic kidneys. As for your kids, if they want to play contact sports, make sure they wear all the appropriate pads. Limit caffeine (colas, many other sodas, rootbeer, coffee, etc.): Some studies have shown that caffeine intake can increase the formation of cysts. The recommendation by the PKD specialists is no more than 2 cups per day of caffeinated beverages. There are tons of information available on the PKD Foundation website, www.pkdcure.org. A great place to look on the site is under "Events" then "National Convention on PKD". They've posted all of the presentations from the convention in Orlando in June. The presentations are made by THE specialist and experts in PKD, so they know what they're talking about. On the foundation website you can also download the latest Q&A on PKD booklet along with some other materials, all of which will enhance your knowledge of PKD and what to do. When it comes to your boys, testing to see if they have PKD is not recommended, especially as there is no treatment at this time. A diagnosis may make it much more difficult for them to get medical or life insurance later in life as well as limit some of their employment opportunities as well. I know they're young now, but it's best for them to wait and make any decision to be tested when they're adults or if / when they exhibit any symptoms. We do not have a genetic nondiscrimination act here in the US (the one under consideration has a hold placed on it in the Senate) so companies, employers and insurance companies can still discriminate based on possible genetic makeup (and in some cases may be able to do so even after the act passes....it just depends on the working of the actual bill). Keep in mind that only about 50% of patients with PKD progress to kidney failure and your family history is not necessarily an indication of how your particular disease will progress. For some people, PKD is an incidental diagnosis and they never have any problems whatsoever. And some people do progress to kidney failure. But with advances in modern medicine and treatment options for many of the complications of PKD (alas there is no treatment or cure for the disease itself), most of us will fare much, much better than previous generations. And hopefully there will be a treatment before our children exhibit symptoms of the disease...although I hope and pray your kids didn't inherit the gene at all!! Best wishes and welcome again! Ruth |
|
Reply
| |
hi donna. WELCOME!!!! lol. im kristina. im 18 and live in NYC. ive had PKD for 3.5yrs and had a successful kidney transplant for 1.6yrs. you've come to the right place. everyone is really friendly and the advice is accurate. we just have one suggestion...ALWAYS CHECK INFORMATION OUT WITH YOUR NEPHROLOGIST/PRIMARY PHYSICIAN BEFORE DOING ANYTHING!!! we are not doctors. we are just talking from personal experience and everyone is different. welcome again and ttus. STAY HEALTHY AS POSSIBLE!
Jrsygirl17 <[email protected]> wrote:
Hi - PKD Diagnosed on 8/28/07
Reply
| | | From: Jrsygirl17 |
Hi All - I'm new here and am hoping to get to know some of you better so I'll start w/an intro about me. My Mom has PKD and was diagnosed just over 10 years ago. At that time I had a kidney ultrasound done which
showed nothing. They told me if I was going to get it, it would have shown up by the time I was 30 so I should be fine. Well...not so. For 10+ years, I thought I had dodged this challenge. I've accepted the diagnosis and am now learning what I need to do differently to keep my kidneys functioning normally. I want to prolong the kidney function as long as possible. I'm a single Mom of 2 boys, ages 13 and 4. Of course, I'm concerned about them inheriting this. Looking forward to learning more, Donna | |
View other groups in this category.
Sick sense of humor? Visit Yahoo! TV's
Comedy with an Edge to see what's on, when.
|
|
Reply
| |
Donna, Another tidbit....if you contact the PKD Foundation, even if you don't join, they will gladly send you information brochures and old copies of the books they still have in stock (slightly outdated information, but still very relevant). Give them a call or send an email to [email protected]. The contact information is also on the website, www.pkdcure.org. Their mission is research and patient education/public awareness, so your request is part of why they exist! Best wishes, Ruth |
|
|
First
Previous
2-9 of 9
Next
Last
|
|
|
Free Forum Hosting
Important Announcement
Return to Introductions