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 am looking for support for myself and hopefully I can provide support for someone else through an experience or knowledge. I am feeling a little helpless lately. I want to be healthy but my body is changing and it is taking a toll on me not just physically but mentally as well. I feel like I am losing control! I feel like the doctors don't have any answers to what I want. I am so tired of hearing "It's just the progression of your disease" Like thats all there is and like thats ok. What ever happened to preventive care. Like how about trying to prevent further progression. I want to know what I can do differently to slow down the progression of my disease. I feel the doctors want to wait until I need dialysis before they care. Ok now I sound like I'm venting. I can go on and on but I guess I will save it for another entry but I do want to ask if anyone knows about Tolvaptan and the criteria for being a candidate for this medication. It will hopefully be FDA approved in September. Thanks for listening!!
I too recently joined the group and share the same concerns and frustrations.I also have so many symptoms and problems that are secondary to PKD.This has been the most amazing place and group of people.They are all loving and caring ,offering very useful advice and support.I felt alone in my battle until sharing with everyone here.It has pushed me to seek more answers and find more help in treatment in my health care options.Knowing is half the battle,and this group knows their stuff!!!! I suffer from so many side effects and constant pain.I feel for you and wish you well.I cannot give you any expert advice yet,because I am still trying to find the right fit for me. Listen to the wonderful people you meet on here,I have learned so much in just a few weeks and made some friends too.
Thank you for sharing your dads story as well. It is great to hear he is doing so good.
Hello Angie and thank you for the hug:) I had kinda of a rough day today so getting a hug was great! I agree this has been a great place to get support. You say you can't give any expert advice yet but let me tell you that your story was the first story I read before I signed up as a member and you were partially responsible because you sounded like I felt and I thought for the first time that I was going to find people that can really relate so thank you! I hope I will be able to help you or provide some kind of support for you sometime. I hope your day is good and that you are feeling well!
Yes finding this site and the support has really helped me although lately I can't seem to snap out of my pity partyI have for myself d/t the frustration I have with not being able to tolerate some of my normal daily activities which I see you definitely understand. And my constant nausea and discomfort and fatigue and now constant twitching eyelid and muscle cramps which I suppose could be from my diet or lack of. I have started juicing every so often just so I know I get some good nutrients and I do add ginger:)
I feel frustrated for you! That you are not being able to enjoy your activities without the after effects I can relate and I understand:) Hopefully we will learn on this site what we don't get from our doctors but through others experience. I feel bad that I feel glad for others experience because I know they have PKD and I just don't wish this on anyone.
I will be thinking and hoping that I will have something helpful to share with you. Have a great day!!
I want to add my welcome! I am in the same place you are with the nausea and discomfort sleeping. After leaving 2 restaurants within 2 months time with vomiting on the way home I told my doctor he needs to advise me on my diet. I had been eating small quantities every 2 hours like she said but then why this sudden onset of losing my cookies in a very public place. I became afraid to eat out anymore. Then she said to blendarize your fruits and veggies together and drink that for breakfast and lunch so that if you do eat out for dinner drink a smoothie before dinner and then you won't eat as much. I take home "doggie bags" now. If you can prepare your own simple meals that is best. Tonight I had brown rice with string beans (steamed) and carrots. I try to eat 6 vegetables a day and 3 fruits. My bread is sprouted wheat (Ezekiel bread) which comes frozen. It is very easy to digest and since this past December I am almost nausea free. If I cheat and eat cheese or fried foods or Snickers candy bar I pay for it with the nausea.
I have enlarged liver and kidneys so they press against the stomach. The stomach needs to churn and turn over the bolus of food to digest it so with us it doesn't get turned over normally so we have to help it by liquifying the food. I love to make home vegetable soups.
Hang in there. I hope you feel better.
Jessica
I am glad your nausea has improved and I hope it keeps up that way. I wish you well!!!! If you have any favorite soup recipes or any juiced or smoothie recipe feel free to share with me:)
I have the twitching eyelid problem. I'm sure it's the result of chronic tiredness, as if I ever have a run of better sleep, it goes away. I have to tell people that I'm not winking at them! I have just started hacing quite a lot of cramp, and am wondering about the reason for it. As you say, it may be dietary. Detective time again.
Jessica, thank you for sharing your tips about blending and juicing. The trouble is, I find liquids as bad as foods, and just the thought of what I would have to drink makes me feel nauseaus. I shall try to persevere with little and often. As for eating out - haven't done that for a long, long time now. I need to stretch out when I've eaten, and the sodium is a problem. My long suffering family puts up with this.
Best wishes to all,
Chewitt
I recently bought this recipe book called "Insiders Guide To Cooking With Herbs and Spices" by Chef Jennifer Bucko Lamplough. She is a teacher of chefs and uses fresh herbs and quality ingredients. Since we don't use salt, and I don't use black pepper, knowing how to make vegetables taste good is what I want.
The book is published by:
Botanical Food Company, Inc.
101 Parkshore Drive, Suite 100
Folsom, CA 95630
Tel: 1-888-878-3663
gourmetgarden.com
I'm having fun with it and I am growing my own herbs this year. Nothing like the smell of fresh basil, I'm tellin' ya. Spicy greens and chickpea soup is my favorite soup. And with no salt either! It's amazing. Really helps to enjoy food even though that familiar nausea is there but it doesn't get worse after I eat these soups so that's a good thing.
Now as far as smoothies I put in a little raw spinach or green leaf lettuce in with pineapple juice, yogurt, honey, apple or orange juice or grape juice, hempseeds (protein), and water. It is a funny color but it tastes great and digests very well and doesn't make the nausea worse, it actually helps it.
Hope this has been helpful and maybe we can combine our ideas with what works for you and what doesn't and share our recipes and experiences. That may be fun.:-)
Good health to you.
How do I get into this PKD Recipe Group?
I have not had very good days lately tolerating food I eat. For a long time it had been just nausea but now keeping it down is a challenge. My husband says its like having a lap band only not what I want. I guess I need to try even smaller portions and juice more that I have been. Sounds a little better now that I have some new recipes:)
I found the PKD recipe site by doing a search of the support groups. It looks like it doesn't have any recent activity but now that Spiderwoman has mentioned it maybe members will realize it's there. I will join and post some recipes if I find some good ones to share that I have the nutritional values on.
I hope everyone has a great day!!