My name is Lisa. My husband has Polystic Kidney Disease. He was on dialysis for 4 years, the last year before we were married. 2 years ago he received a transplant but as a chef we are committed to helping people on dialysis live a better quality of life while waiting for transplant. We are going out and teaching kidney patients to create recipes that taste good and still meet the requirement So this is my question. I have a very clear understanding of the limitations of the diet but as patients who have to struggle with preparing something that tastes good enough to want to go through the trouble of making, what is your biggest challenge? We are eager to get patients' input on this so we can better serve the community.
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01-22-2014, 11:38 AM #1
- Join Date
- Oct 2012
What are your challenges on a kidney diet?
01-22-2014, 03:29 PM #2
- Join Date
- Nov 2013
Hi Lisa, I am Cheryl. My biggest challenge is that I am always exhausted after dialysis. I am OK on Saturday and Sunday so that would be the only time I could help prepare a meal. My Blessed husband is always available to help me though. I hope you and your husband can come up with some recipes that don't taste like garbage. DaVita has a couple of cookbooks out but UGGG......disgusting. Also, I know there are a LOT of diabetic patients and I hope you could come up with something tasty without sugar.
01-27-2014, 11:45 PM #3
- Join Date
- Aug 2013
Are food chooses important if you are not on dialysis . My Dr didn't seem too concerned. I'm new at stage 3 and very confused if I can or cannot really make a difference with what I eat and food is important to me. Help!
01-28-2014, 09:37 PM #4
- Join Date
- Nov 2012
I am new to posting and I am thankful for the opportunity to do so- My name is Valorie and I have struggled with Urological disease for 51 years now1
I have been living with stage 5 Kidney failure and due to difficulty with getting a fistula for Dialysis (My veins are not big enough and have failed to keep a fistula viable), my docotrs and I have determined that a transplant is my best option. I am on the Johns Hopkins Transplant list and have been blessed to have two sisters that have been determined a match....We are currently awaiting my sisters evaluation work up and negotiations with my insurance company...Before I have the transplant I first have to have a Urological surgery to remove my native kidneys, years of massive scarring and entire diseased urological system....I than will begin temporary dialysis with a catheter allow the body to be prepared for transplant...
I share all this because I realize others in my situation have gone through a life time of struggle, are faced with similar day-to-day life struggles with energy levels, diet, not being able to live life free of pain and being tired all the time. I have lived on pain medication for five years now, recently have come to the point of having to take a leave of absence from my beloved teaching position (I am a preschool teacher of 33+years, consider it my passion and life calling...I am anxious to return to the classroom! I am thankful that I have a place of employment that have guaranteed a place for me when I am able to return after the transplant- I have been blessed through out my life with amazing support from family and friends and an unwavering faith in an ever present God, recently I have a had a group of friends begin a support fund to help my husband and I offset the mount hospital bills...we even have had a fundraiser in my honor at a local gym, a zumba day fund raiser, A beautiful benefit concert given for me...
I mention this because I am strengthen by my faith my friends and family and not a day goes by that I am not grateful...
I only struggle with a couple things and was wondering if there are others who struggle as well-
first: The energy level...I seem to be tired and want to spend most my days sleeping life away
I struggle with itching ans take benedryl for that, which just adds to my lethargy
And the biggest thing not have a simple straight ford diet plan to follow for stage five-I get so tired trying to figure out what I can and cannot have I finally get disillusioned and just give up... I struggle with nausea form the buildup of toxcins and have a limited appetite anyway...
I am blessed to have a Husband that does the majority of the cooking and goes to great lengths to stay within the guidelines of the Renal diet.
We have several materials regarding renal regulations and I have had a appointment with a renal dietitian, The difficulty is there is so much controversy between many of them. One list says I can have something while another says not to...
It would be awesome if there was one simple diet plan to follow for stage Five kind of like an ABC's for the renal diet!
I have kept away from posts as I often see a lot of negativity and threads from people who sadly have given up, or are bitter with their circumstances...
I appreciated your thread because I appreciate your desire to help and reach out...
I am also interested in hearing from anyone that is living with dialysis...I am nervous about dialysis beginning for me in the next couple months, I will also be having dialysis as a complete replacement for my kidneys since they will have been removed...
I have read all the information regarding dialysis and understand the process however, that doesn't hep the nerves and unknown...I appreciate any insight that I can recieve and am thankful for the sharing and journey with others living with Kidneydisease
Grace and Peace,
Mrs. Valorie Andrist Woodbridge, VA 2 Corinthians 16-18
01-29-2014, 01:08 PM #5
- Join Date
- Jul 2012
Since you are going to have dialysis with a catheter, you don't have to be nervous about the treatment. Most are nervous with the needles and since I have been having trouble with my fistulas( with many of the reasons you gave) I have a catheter and on the days they use that, I have no discomfort and the only pain from where the needles go in is not bad. Usually that pain only last a few seconds to 30 seconds and when they are in, I have no problems with pain. I rate dialysis with a catheter with 0% pain and dialysis with 1% pain until the fistula stops and then there is infusion and bruising.
As for the diet. I ended up before dialysis eating mostly veggies, fruit and small amounts of fish or chicken. I mean small as 1 or 2 oz. No salt, cheese, little milk for coffee and much less coffee. I used spices to foods for flavor and stayed away from anything that has high wheat content. I gave up pop too. I drank lots of water to keep the kidneys working and then am limited now although not as limited as other since I have PKD.
I too have faith in God and know that if there is a kidney out there, it will be provided. So far, only two live donors with one being rejected. My husband is my second source and he is to take a BP test for the second time soon. If he passes that, he will have other tests ordered until he is accepted or rejected. I have church support in prayer but no one has offered a kidney or asked for information. I am on the Ohio State Kidney donor list in Columbus.
Kathlynn Cramer for Ohio
Last edited by kcramer; 01-29-2014 at 01:12 PM.
01-29-2014, 02:20 PM #6
- Join Date
- Nov 2012
So wonderful to hear from you!
I hope that things work out with your Husband,,,I look forward to corresponding with you...I am getting adjusted to not working since I had to give up my teaching job because of the low energy and frequent hospitalizations due to kidney infections and high creatine levels. I am finding it difficult to not be active like I was...when I do get active I find myself tired after just a couple of hours...I guess this new transition is just going to take time...I am an extrovert and enjoy people. I find myself alone in my house...
It is a nice thing to be able to share me thoughts with others going through a similar journey...I battled having to stop working as long as I could as I have taught preschool for over 30 years and consider it my life calling and passion..When I found myself consistantly living with stage 5 and no possibility of lowering my ckd creatine to Stage 4...It was time.
I am thankful that you have shared the ways you have dealt with your diet...I do most of the same however, I must admit staying away from cheese is difficult especially cheddar...It seems all my favorite foods are a no-no...I am hoping my taste buds will evenually except a new favorite out of the approved list.
I am trying to embrace this time between having the two surgeries, transplant as a gift of preparation and reflection...It is difficult though...
I look forward to getting to know you more .
I noticed that you said you are on a list state of Ohio are you from there? My husband has relatives who live in the Michigan/Ohio area! There has been a hard winter in that part of the country!
Thanks again for sharing
Grace and peace-
04-05-2014, 09:02 AM #7
- Join Date
- Apr 2014
My name is Kim and its only been two weeks since my mom has been on Dialysis. It was devastating news to her because she also is a type 2 diabetic. She is 78, and because of her health issues now lives with my husband & myself. The challenge is trying to prepare meals for someone who was the best Southern cook & family chef for the family. Now nothing I fix tastes good to her. No sugar, no salt, no taste...has decreased her appetite.