Anyone out there with Polycystic Kidney Disease??

tamanella
tamanella Posts: 500 Member
edited September 24 in Motivation and Support
Hi! My name is Tami and I have Polycystic Kidney Disease. I was just wondering if anyone else on MFP has this too. I thought maybe we can be a sense of support for one another as we navigate through this weight loss and controlling our disease. I'd love to hear from you! :heart:

Replies

  • carrieliz81
    carrieliz81 Posts: 489 Member
    My mom has PKD... she had a transplant 11 years ago and is doing great! I wish you all the luck in the world with your PKD and MFP journey!
  • mangos4music
    mangos4music Posts: 126 Member
    my mom also has pkd. i believe the cysts and have spread to her gallbladder as well. her kidneys are currently the size of footballs and u can actually feel the cysts through her skin now. she is shaylee73 on my friends list. you should add her its always great to have support thats in a similar boat to yours
  • tamanella
    tamanella Posts: 500 Member
    I'll be sure to add her as a friend! Thank you :0)
  • mispooh
    mispooh Posts: 1
    Hi Tami...I have PKD and am new to MFP! Good to meet someone with similar issues!

    ~melissa
  • MsRose2012
    MsRose2012 Posts: 25
    I have PKD, my mom has it and my grandmother had it. The last time I I had it checked I only had 2 small cysts which I think is great being 41. I often think about diet and dos and don'ts. I don't usually post but would like a friend :)
  • badblood
    badblood Posts: 43 Member
    Hello, I to have PKD and was lucky enough to get a transplant in January of this year. I have a free reign as far as foods are concerned now but did have to watch my potassium intake when I was pre transplant which can be tricky, I also had to be careful with calcium and phosphate but had to keep my protein intake up when I was on haemodialysis. Steroids meant I put on over a stone since the op but am now managing that and it is slowly coming off. If I got my PKD kidneys removed I would lose a stone (14lbs) overnight!

    Feel free to add me.
  • jenrod1118
    jenrod1118 Posts: 150 Member
    Hi everyone. I too have PKD. My mother was blessed with a new kidney last september, and my uncle is currently on dialysis. The thought of being in there position one day does terrify me. It's always good to have additional support with someone going through the same situation.
  • whiteeagle12
    whiteeagle12 Posts: 6
    hey i got Polycystic Kidney Disease i well be 30 year old i had 4 kids but 3 live and i am stage 4 Polycystic Kidney Disease . my doctor told me to loss weight and eat small meals well that easy say then done i don't know what not to eat or what u should eat all i know i need watch my calories and fat and sodium and not eat any red meat told me to eat fish chicken and i add turkey meat
    can some be my friend i feel like i cant do this i don't know what to do i want to loss this weight so bad lol
  • ToEKnee213
    ToEKnee213 Posts: 1,031 Member
    I have PKD as well. Just found out about a year ago. I'm just starting to learn more about it, but my internist advised me to not get too worked up, especially since I am trying to lose weight.
  • whiteeagle12
    whiteeagle12 Posts: 6
    i got more bad new from doctor but it all ok i still going to try to eat right and try loss weight lol i would like to have buddy that know what i going throw and has pdk too or they dont have to have pdk i just like to have some friend plz



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  • JnanaNari
    JnanaNari Posts: 12
    Hi everyone! I'm new to MFP (been here just under 2 weeks), and am happy to have found this thread. I was diagnosed with PKD in 2008.
  • jillybean_75
    jillybean_75 Posts: 70 Member
    I also have PKD. I was diagnosed in 2010 (I was 34). My dad had it, was on dialysis, had 2 different kidney transplants both last 4 years. He died 11 years ago next month from an infection due to his immune system not being resistant enough. He was 70. My brother has it too, but he knew since he was a kid. We all got tested as kids, but mine didn't show up until in my mid-30's (high blood pressure at a OB/GYN..and had an ultrasound based on family history...there it was).

    Anyway, I am trying to lose weight. Everything is ok for now, BP is controlled. It will be good to make some other friends on here with this situation.
  • cadmad2323
    cadmad2323 Posts: 2
    Hello everyone out there. I also have PKD. Kidney function is at 39% and dropping. Been a long time since I have been on here but to date I have lost 40 lbs in almost a year now. It has been a hard journey but I am trying to stick with it. It hasn't seem to be going anywhere the last couple of months and my kidney function is down a % each time I have a blooddraw. Don't know what else to do at this point. How I lost the weight- going to the gym 3-5 days a week and working with a trainer has made a big difference.
  • GoneKona
    GoneKona Posts: 87
    Yep, I have PKD. Feel free to add me if you wish!
  • ssgolds
    ssgolds Posts: 8
    Yet another lucky one with PKD. Kidneys a little under 40%. I've lost about 60lbs over the past 4 years and kept it off for the most part. Sure helped with my high blood pressure.
  • fufuberry1
    fufuberry1 Posts: 1
    so, did you guys find that because of your PKD, that you gained weight? I am thinking that I MAY have PKD (not sure). I have been gaining weight steadily over the past few years despite maintaining the same diet I always had (I think). and I have high BP but eat little salt. Losing weight is a *kitten* for me, and I'm wondering if I have this condition or not. But I want to know if you all gained weight because of having PKD...?
  • glovepuppet
    glovepuppet Posts: 1,710 Member
    i don't but my mother & sister do.
    my mother has it in her kidneys, liver & bowel. she's refusing dialysis.
    my sister is ok, so far, but struggles with her weight. though that might be more due to the PCOD.
    so, did you guys find that because of your PKD, that you gained weight? I am thinking that I MAY have PKD (not sure). I have been gaining weight steadily over the past few years despite maintaining the same diet I always had (I think). and I have high BP but eat little salt. Losing weight is a *kitten* for me, and I'm wondering if I have this condition or not. But I want to know if you all gained weight because of having PKD...?
    is there any reason to think you have?
    seems a random conclusion to jump to.
  • Walberg1960
    Walberg1960 Posts: 5
    Hi

    I've got PKD (Cysts in liver too). I was diagnosed back in 1990, I think, I was close to 30.
    My mother had PKD too. But I didn't have any symptom's... by chance I had my blood pressure measured and it was way to high! My weight was normal. My blood pressure got treated with medicine (it was not enough to loose weight). Gradually my kidney function dropped, and in October 2007 I started in dialysis (Peritoneal dialysis). I had to take care of what I ate, primarily reduce protein intake.
    In June 2008 I was so lucky to get a kidney transplant! So now I can eat without restrictions, but has to take care of my body, as everyone else! My weight is within the normal range, but I think, it's because I'm a runner (long distance). I use MFP as a tool, to stabilize and adjust my foods.

    Henrik (from Denmark)
  • avrababy
    avrababy Posts: 1 Member
    Hi, Glad you started this post! I've found a wealth of information from the PKD Foundation, www.pkdcure.org! Kelly Welsh is a renal dietician and has blog,there is also a nutrition webinar that you can watch.

    I'm fortunate thus far, as the cyst growth has been slow and I maintain 'normal' renal function. Internalizing the 'reality' of PKD took me time. I have had life long dis-ordered eating....with the experience of being on many 'diets'.

    I've lost 45lbs approx. a year and half ago and have maintained the loss. Working with a knowledgable renal dietician is key to coming up with a personal plan for every kidney patient. I've made a list of food suggestions and recommendations watching Kelly's webinar! Maybe that will be helpful to you? The trick is - in changing habits and focus. That wasn't easy and is a daily practice and some times....I trip and fall...but the key is to get back up and keep going. Focus on what we want, not what we had. I'm leading a seminar for the Hudson Valley PKD Chapter in NY soon...about healthy lifestyle. Joining your local PKD Foundation Chapter is a great place for networking and support! Be well...:flowerforyou:
  • ravikambhoj
    ravikambhoj Posts: 2 Member
    Hi, I also have PKD, it runs in the family. My dad, my two uncles and one of my aunt died of Kidney failure many years ago. They could have lived longer if the disease was diagnosed early and they were more careful in taking the right medication etc.

    In the last few months I've gained a bit of weight and now I'm back on track to loose it, l've just enrolled myself into another half marathon which is a good goal to work towards and stay fit.
  • cydulrich
    cydulrich Posts: 12 Member
    Hi, My husband has PKD, he is now 59 and was diagnosed in 2003. He has never been on dialysis and so far is doing very well. He had an advantage when he was diagnosed, he is allergic to milk and has not eaten any milk products since he was 20. We were informed while he was in the hospital that milk products and the bovine protein are detrimental to people with PKD. He does have very high blood pressure and is on meds for it. He drinks a lot of water daily and is fairly active. In 2005 he had a quad by-pass due to a genetic problem, and because of his PKD, he was only given blood thinners through the surgery itself and a Nephrologist was in the operating room during the surgery monitoring his kidney function. He refused to have stents put in and opted for the by-pass because of the PKD and the damage that blood thinners do to healthy kidneys, let alone damaged ones.

    I wish everyone here with PKD the best. It is such an unknown condition that is not in the public eye that there are times that I think our friends believe we are making it up.
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