The surgeon who removed my PKD kidneys when I was 18 years old said I looked “11 months pregnant.”
Some of us look normal on the outside although our kidneys and/or liver are enlarged and polluted with PKD cysts. Others must visually deal with the reminder of PKD every day, like my dear friend Cheri Barton. I met Cheri at a PKD National Convention several years ago and she holds a special place in my heart. Regardless of her large PKD belly, she lives a positive life, has an infectious smile and a beautiful spirit. I asked her if she would share her story with you. For those of you with an enlarged stomach due to PKD, I hope this provides you with some comfort knowing that you are not alone. For those of you without PKD that have days when you feel bloated, you may now think twice about complaining when your stomach feels distended. Most importantly this teaches us to accept and be proud of our bodies when we look in the mirror. Thank you Cheri for sharing your strength and courage with all of us.
Cheri Barton:
“I once heard someone say that you should never ask a woman if she’s pregnant unless you actually see the baby coming out of her. Most people haven’t heard about this rule because I get asked it all the time. When people first started asking me if I was pregnant, I would turn very red and mumble some reply, then they would also turn red and it was embarrassing for both of us. As my PKD liver grew larger, I got more used to the question and just gave an explanation about my cysts. Only once, while buying a decaf, did I say ‘yes’, and what a huge mistake that was! Try answering “when are you due” and while busily trying to calculate the imaginary due date in my head she was on to the next question “is it a boy or a girl”, etc. After escaping, I looked at my husband and said that I would never ‘pretend to be pregnant’ again. About 10 minutes later, someone else asked me, and we both cracked up laughing. Let’s just say, that person got a full PKD lecture.
I am a PKD mutant. My parents don’t have it. I had never heard of polycystic kidney disease until I was diagnosed with it about thirteen years ago. Our third child was about a year old when I noticed some lumps in my stomach. I also noticed that my waistline was getting bigger. I asked my doctor about the lumps and she agreed that something didn’t feel right. She sent me for an ultrasound. At the ultrasound, I learned that both of my kidneys and my liver were filled with cysts. I was referred to a nephrologist and I was diagnosed with polycystic kidney disease and polycystic liver disease.
I surfed the internet and I found the PKD Foundation’s website, www.pkdfoundation.staging.wpengine.com. There, I found out it has a Canadian affliate, PKD Foundation of Canada (www.endpkd.ca). I learned that the Foundations have an annual Walk for PKD and that Toronto would be having one that September of 2004. I live in the small town of Vankleek Hill, Ontario, Canada and I knew that my community would support me. Our local paper ran an article about PKD and how I was trying to raise money to bring to the Toronto Walk. I held a bake sale, got Scotiabank to match my fundraising, and ended up bringing over eight thousand dollars to Toronto. The next year I decided to start my own Walk for PKD in Vankleek Hill. In the last 10 years we have raised just over $150,000 in my little community.
I joined the TEMPO drug trial for PKD in Montreal. I have been in the trial for 5 years. It is very interesting to be a part of a drug trial and I am certainly being well cared for. I also volunteer to give talks about organ & tissue donation. I have been to two PKD National Conventions in the USA. One in Dallas, Texas and the other in San Diego, California. My parents funded the trips for my sister and I. The Conventions were excellent. I learned about the science of PKD, polycystic liver disease, pain management, nutrition, clinical trials, transplantation and much more. I had read the book called “My Favorite American” about Valen Keefer and I was so excited to get to meet Valen after explaining to her that my daughter had done a project about her for school. My sister and I got to spend some time shopping with Valen in San Diego. Anyone who has met her knows what a sweet, wonderful human being Valen is and we have kept in touch over the years.
Thirteen years ago I had never heard of PKD. Since then, my liver has grown so large I can only wear maternity clothes. The manager of the maternity store is always happy to see me. After all, she doesn’t have many permanent customers. The cysts show through my skin as bumps on my belly that are hard to hide. I have three hernias in my abdomen from the weight and pressure of my liver. I have to wrap bandages around my abdomen every day to hold in hernias. The surgeons told me that they can’t operate. I can’t have my hernias repaired because it’s too complicated. I can’t have a liver reduction because I don’t have enough good liver tissue left. I will need a liver transplant eventually, probably before a kidney transplant.
My worst fears about PKD came true. Both of our daughters, now 20 and 17 years old, have PKD. Our 17-year-old daughter already has over 30 cysts in each kidney and is taking blood pressure medication. Our 14-year-old son has not been tested yet.
Despite all of this, I have always been a positive person and I am grateful and happy for the life I have. I am trying to pass this positive attitude to my children. I never make people feel bad for asking me if I’m pregnant. I’m 46 years old! I’m just glad that people are still asking me! I look at it as an opportunity to spread the word about PKD. It was so much easier for me to answer the pregnant question after I accepted the fact that I really do look pregnant. (OK, maybe with a lumpy alien baby but still…) It has become more important to me to make sure the other person doesn’t feel embarrassed for asking me than it is for me to get upset about being asked.
I’m not going to say that I never get a little discouraged by my appearance. It does happen from time to time, but I don’t believe in wasting time stressing about things that you can’t change. It’s important to be grateful, and to learn to be happy with the body you have, after all it’s the only one you get. Always make the best of what you have. Someone told me that she wears big scarves or necklaces so people don’t notice her big chest. I definitely don’t have the chest problem, but I use her advice to draw attention away from my liver. I also try to wear clothes that hide the lumps. (I’m hoping the tight maternity style will end soon!)
So be proactive, get involved with your local PKD Chapter. Talk to people about PKD. Encourage people to be organ donors. Be grateful. If you can be grateful then you can be happy. I am grateful that my kidneys and my liver still work. I am grateful for my wonderful life and my friends and family. I am grateful to have met Valen and glad that she asked me to be in her blog. I hope it helps those of you who have PKD/PLD affecting your body image as well as your health. Happiness or hopelessness – they are both like diseases – you need to decide which germs you want to spread.”
Saw this on facebook and was immediately drawn to read it. First let me start my saying that you don’t look 46 and I love the t-shirt with no baby on board.
I am a 56 year old with a kidney transplant, one good kidney and 2 oversized ones. I am terribly uncomfortable with my large stomach but have to laugh when I know people look at me at think I am way to old to be pregnant. I would love to have my kidneys removed but have been told it is to dangerous. And so as I push myself out of a chair like a pregnant woman I am thankful for what I have and who I am.
Hi Jennie,
Thank you for your support in my blog and reading this blog post. I am glad that you enjoyed this post. Awesome that you received a kidney transplant and I commend your positive attitude!
I’m struggling with my stomache swellingvat the moment. I feel very nauseous. My stomache is just do swollen and feels so heavy. The lain radiates to my sides and lower back and in between my shoulder blades. I keel wondering if it’s all pkd related or there is something else wrong with me
Hi Lisa,
These all sound like the symptoms I endured before both of my kidneys were removed. However, I definitely suggest you share all of this to your nephrologist so they are aware of how you’re feeling and see if your team suggests you get any tests done. I’m so sorry you’re enduring all of this. I can emphasize with how awful it is. I had both of my kidney removed when I was 18 and a transplant at 19. I am now 37 and 18 years post-kidney transplant. Sending strength and love.
Hello,I also have PKD and can’t take it anymore as my kidneys are huge and my chest hurts I am in pain most of the time sick to my stomach all the time I see you had yours out before transplant how does that work?
Thank you very
Hi!
The cysts on my kidneys wouldn’t stop bleeding, so they actually removed both of my kidneys when they were working 60% because the cyst bleeds would have killed me. They removed both kidneys and then I instantly went on dialysis and then 7 months later I received a kidney transplant from a living donor. And now that same kidney is doing great 18 years later. I’m sorry you are enduring so much from your large kidneys. This is something to definitely discuss with your doctor and see if they think it would be beneficial to remove yours. I hear they sometimes remove the kidneys at the time of transplant. Wishing you all the best!!
Regarding bloating and polysyctic kidney Disease and weight loss
I am so glad I stumbled across this. I am 52 years old and people regularly assume I am pregnant. I do at times feel disheartened. But thank you for your positive attitude. Maybe I’ll start looking at maternity clothes again. 🤔
I am 77 and and it’s been 18 since my very successful kidney transplant. I have a bulge that cases me to wear bigger sized clothes at the top. I have a small hernia but absolutely no pain. My quality of life at 77 is better than when I was in my 40s.. That more than make up for my side stomach bulge!
It’s wonderful to hear what people have to say about PKD. I was diagnosed with PKD/PLD at 60 years young. At that time I had no idea what PKD was. My mother had it, God bless her soul, and did not share that with me. I don’t blame her for not telling me because I was able to do all the things I wanted to do without that burden. I started horseback riding at about 56 years young. I don’t know if I would’ve done that if I had known I had this disease. I feel everyone’s angst; however, I keep myself busy and I’m comfortable in my own skin. What helped me was I lost 70 pounds and my abdomen diminished. I don’t have the waistline I used to have but I still feel fortunate and grateful that I don’t have the worst case scenario. I eat as healthy as I can, educate myself about this disease, meditate, do some cardio and attend tai chi class twice per week. My family is my support system. My daughter is my donor when the time comes. She is so wonderful and how could I fathom then that having birthed her would save my life now. I love my life with or without PKD. Love yourself enough and as my father, God bless his soul, would always tell me,“KEEP YOUR HEAD UP” — and I always do. Thank you for this platform.l to share some of my journey.💖🤗
Dear Donna,
Thank you for sharing your beautiful light and hope-filled sentiments to brighten our day and give encouragement to many on their path with PKD. Amazing that you are at your age and have not had to receive a transplant yet. That is wonderful and I am sure encouraging to many. I received my kidney transplant at 19 and my liver transplant at 35. Both needed because of PKD. Keep that positive spirit and you’ll be able to get through anything. Wishing you all the best!!
I’m scared
What if I took a kidney from my daughter and then she gets it as 50 percent or more hereditary and then she has nobody to give her kidney as I only had one child
I do not think I could do that !!
Donna are you still doing well x
Hi, I have polycystic kidneys and liver and both of my kidneys were big at 25 cms. I’d read that the weight of them can cause curvature of the spine and so I asked my renal doctor if they could be removed. Guys Hospital said that to remove both at the same time would be dangerous but agreed to remove one. I had this done about 6 months before I was blessed to get a new kidney. I’m not well enough to face the removal of the second kidney but I think it’s a good option if you can. Best wishes
Go to cedars sinai or an affiliate hospital they will remove them. I am going there for my Transplant and I know my dear friend who had hers done at UCLA went over to Cedars because UCLA wouldn’t take the kidneys up at Cedars did.
Cheri,
I found myself relating to so much of what you said. I too have the ‘PKD’ belly. The first time I was asked if I was pregnant, I was 16 and was so focused on the idea that I just got my driver’s license that I couldn’t believe someone thought I was pregnant! It is now 10 years later (gosh, time flies), and I still get asked. I have a much more positive attitude now than I did before, and knowing I am not alone definitely helps. The hardest part for me is knowing that there aren’t that many people my age dealing with this – I was young when I was diagnosed with ADPKD. But as you said, I have to be positive and have a positive outlook and be grateful for what I do have.
Thanks for being an inspiration! I needed this as the weather gets warmer and the clothes become more difficult to use as a cover up. Good luck on your PKD journey!
Hi Whitney,
I am happy that you were able to relate and find comfort in this post. I too was diagnosed young at the age of 10. My gigantic kidneys were removed at 18. I admire your strength and courage. Keep that positive outlook and I wish you the best on your PKD journey!
I was diagnosed with PKD in 1997. My kidneys and liver are very enlarged. Cyst have broken more than once causing a lot of pain. I have pain on a regular basis with nausea. I have issues with my bowel, which causes pain also. I am very short of breath because I can’t expand my lungs due to my enlarged organs. I was wondering if anyone else have these issues. I am tired all the time with reduced energy. I also have heart palpitations which are caused by mitral valve prolapse which is another side effect from this disease.
I inherited PCKD from my father. I am now 75 and over the past 5 or 6 years my tummy has become extremely large. I also get breathless from the enlarged liver pressing on the lungs. I am getting ready for dialysis as it is too dangerous for a transplant and no donors either. I try to enjoy everyday. They are precious.
Cheri,
Thank you for sharing your story. I inherited my PKD from my Dad who is gone now and didnt get my diagnosis until I was in my late 30s. I have 2 children. One appears to be Cyst free but one has more than a few so likely. I do not have the obvious signs that you have and I admire your bravery and your positive approach to inquiries. I do often ask my neprologist- What does he think my organs weigh so I can maintain a healthy weight for me. The BMI test is not accurate for PKD patients but it is the baseline for every one from GPs to Insurance Companies and even Weight Watchers. Maybe we should start a community discussion about how much we think our cysts add to our weight. Even with this disease,we need to keep our bodies strong and healthy to carry us through, and its easy to blame everything on PKD. Anyway, Thank you for sharing, and best wishes to you and your family on your PKD journey.
Hi Mary,
Thank you for your support and reading my blog. I am glad you enjoyed this post. I appreciate you sharing your PKD history and proactive knowledge with all of us. Wish you the best!
I am 25 going on 26 currently pregnant with my second child and getting sterilized afterwards due to having ADPKD and my kidneys have gotten bigger and more back pain. It’s nice to have come across this site and see other women outside myself have the same disease and have an extension as well I’ve been so self conscious about my appearance outside pregnancy that it hurts when people would assume I was pregnant when at the time I wasn’t and now I look bigger then I really am due to my kidneys being so enlarged. I got it from my dad. Idk how to get over it and get over the rude comments about my appearance outside pregnancy
Hi Jenyca,
My heart goes out to you and I can totally sympathize. I will never forget the day when I was 18 and transferred to a different floor in the hospital and a nurse came into my room and after looking at me, asked when my due date was. I was devastated. I just looked at my mom to answer and take care of her, because I couldn’t. Having PKD takes great strength on many levels, physically and mentally. I appreciate you sharing your story on my blog. I hope your second pregnancy is going well. I am now 34 and had both kidneys removed and a kidney transplant almost 15 years ago. I wish you all the best on your PKD journey. Sending you a big hug! Hang in there! PKD Will Not Beat US!
I have recently seen a surgeon due to a new abdominal pain. He told me my kidneys are 4 times the size the should be. He then recommended bariatric surgery because I am obese. I told him cysts have weight. He kept talking and added what my BMI is INCLUDING cysts in my kidneys and liver. If I did not have PKD and PLD I would not have a bulging stomach. I would way a bit less. I would not be in constant pain so I would be getting more exercise. I have MVP as well which caused connective tissue disorder. I have tried my best to think positive since my blood pressure is good and my creatinine is only slightly elevated ATM, but ignorant doctors just cause me to feel overwhelmed. I also went to a nephrologist and she dared to tell me my kidneys do NOT HURT. WAIT… WHAT?? HEAVY SIGH… Thank you everyone for sharing.
Dear Kathy,
I am sincerely sorry you are being treated like this by doctors who are not fully educated on our disease and the realities of our symptoms and what day to day life is like for us. With how you’re being treated, it made me first think that going to a PKD specialist and or PKD clinic would be ideal for you! Are you aware of any close to you? If not, if you share the town/state where you live, I will help find the closest one to you. If you aren’t comfortable sharing that information here, then you are welcome to email me: pkdwillnotbeatme@yahoo.com Sending strength and love to you! Please know you are not alone.
Omg I could not believe that she said your kidneys dont hurt !!! Hello !! How on earth would they know..we are the ones with this disease, it seems like no ones cares. I too have this disease and a big stomach, I’m very conscious of my stomach and try to wear clothing that doesnt make me look fat. I’m 53 menopausal and still try to make the effort to put a brave smile on and keep going. I cant wait to have these two removed some day.
As the others, I too was drawn to read this article as I have been asked many times if I was pregnant. It has been a few years since that happened as I am now 56. But I used to tell anyone who asked “that, yes I am, twins due in February” – it would get them quiet real quick. If they were sincere in asking I would explain PKD to them. I too have tons of cysts on kidneys and liver. My 3 sisters and niece also have PKD. My dad had it too, RIP. I may look into maternity tops at thrift stores – I am disabled from a nerve damage illness so I’m on a tight budget. I have to buy jeans/pants to fit my belly and the legs are always real baggy. I feel much better after reading of others in this same situation. I’m off to swim in a pool and there are a couple of very pregnant women there…I will sit by them and not look so bad. Best wishes to you Cheri and you other ladies!
Hi Christine,
Thank you for your support and reading this post. I am happy that you found comfort knowing that you are not alone. I commend your strength and wish you the best!
Cheri, LOVED your story and your positive attitude! I have the PKD belly and I don’t think I was this big at 9 months with my pregnancies. I am really embarrassed about having to go out in public and find myself hurrying in & out of the places I have to go. I am 53 years old so it’s not like I might be pregnant, but I do get some looks like boy, I really let myself go after quitting work, which I had to quit due to the PKD. I LOVE THE T-SHIRT and hoping you can tell me where myself & others can order one at!! It is perfect for us PKD’ers and says just whats on our minds! Thanks so much for the encouraging article & wish you much luck with your liver & kidneys!! Hugs…
Hi Jamie,
I am grateful to hear that you were able to connect and find comfort from this post as your live courageously on your PKD journey. Cheri had her t-shirt made at a local store where she lives that makes custom t-shirts. Best wishes!
I am a 30 yo male with PDK so I can’t really use the pregnancy excuse. It’s very hard for me not to remain self conscious about my large belly. Everybody thinks I have beer belly because I snack on too many potato chips. I’m to the point where I don’t even like going out in public anymore because I am so embarassed!
Hi Will,
I appreciate you opening up and sharing your story. I am very sorry that you are enduring this. Although it does not make it go away, I hope after reading this post that you know you are not alone. Sending strength your way as you walk your path of PKD. Wishing you the best!
Hey Will I am another male with PKD. I am 6’ 2” and generally slender aside from a large abdomen. Even my family take the mickey and I saw a doctors letter describing me as centrally obese. I find it very tiresome that even medics don’t seem to understand the condition. I think all we can do is suck it up and develop a thick skin about it, and when we have the opportunity explain the situation. Don’t stop going out man, life is for living. Hope things improve for you.
Thank you for sharing your story. I had a kidney transplant 19 years ago. My kidneys and liver cysts kept growing. I too was asked if I was pregnant. The first time that I was asked I burst into tears. Eventually the kidneys became so enlarged I had trouble keeping any food down. I had to have them them removed. I had some good years after that where I was so proud of my “new body”. Then my liver cysts kept growing and growing. Thank you for the reminder to be proud of who we are and not let body image control our happiness.
Hi Carol,
I am glad that you enjoyed this post. Thank you for reading my blog. I am sorry to hear of the roller coaster ride your body has endured, but a big congratulations on 19 years with your gift of life. Wish you the best!
Cheri, thanks for writing what you did. My circumstance is almost identical to Jennie, who wrote this morning. Though I don’t drink at all, I have a very big ‘beer belly’. I guess with women, you’re pregnant, with men, we drink beer.
Hi Carl,
Thank you for reading this post. I am sorry for what you are enduring and I hope it provided you with some comfort knowing that you are not alone. Wish you the best!
Hey Carl,
In relation to your post, I just returned from Jamaica and I was in the ocean swimming (more like floating as a result of my large belly). Suddenly this little girl (age 8) tapped me on the shoulder at the dare of her friends, and said ” excuse me Mr. but are you pregnant? ” All I could do is laugh which made her and and her friends laugh. So there you go……I guess men can get that pregnant look also….lol
Good Luck in your journey !!
Fred
Great article. Cheri is a smart, stubborn, resourceful, positive, and inspirational sister.
Hi Bryan,
Thank you so much for reading this post on my blog. I agree, your sister is remarkable!
Cheri,
Great post! You’re making a big difference with PKD in Canada, keep up the good work.
As a guy, the “PKD gut” is easy to pass off as a beer belly and I suspect most people think that’s all it is. It’s definitely harder for you.
Best of luck with your walks and you and your family’s health,
Bill
Hi Bill,
Thank you for your kind words. I am sure the “beer belly” for a guy is difficult just like a PKD pregnant belly is for women. Thank you for reading this post and for sharing. Wishing you the best of health!
Jennie & Jamie – I had the t-shirt made for me at a local store that does custom shirts, banners etc. It says “PKD Foundation of Canada” on the back! (I wasn’t too happy with how big they made the arrow.)
Whitney – Sorry you are starting this so young. I know what you mean about the change in weather wardrobe. Summer is definitely harder that winter.
Mary – I have stopped looking at the weight scale. I weigh more now than I did when I was really pregnant so I find it easier just not to stress about my weight. I figure the cyst weight doesn’t count as real weight.
Christine – some maternity store have sale racks with really reduced prices. You should try to find one pair of pants that you are comfortable in….or ask your thrift shop to keep an eye open for maternity pants for you. A good pair of comfortable maternity jeans are a blessing. If I find a pair that fit perfectly, I wear them until they are so worn down they are almost see-through.LOL
Jamie – I know how you feel about the looks that you get, but don’t let them stop you from going places. You don’t need to hide. I always remind myself that there are other people who have even worse diseases that are more visible to others than PKD.
Carol – Not fair that your liver is growing big now after getting your big kidneys removed. Keep positive!
Will & Carl – I know what you mean about the beer belly. I have met other men with PKD who get beer-belly comments. I’m sure it is just at bad as being called pregnant. Unfair for sure.
Stay healthy everyone and remember to drink as much water as you can tolerate every day. (If your kidney function allows it)
You sound like me before I had my liver resection. I am thankful that I was a candidate. Best wishes for a speedy move up the transplant list.
Hi Kelly,
Thank you for reading this blog post. Wishing you the best of health!
Dear Cheri……it was so wonderful reading your story on Valens blog. You are both strong, positive, inspirational ladies and I feel very blessed to know you both. As I read your story, it brought back all my memories of what I too went through, before I had my 1st liver transplant 16 years ago. All the emotions you describe, I also felt and totally understand your day to day challenges. I found that buying pants with an adjustable waists, worked the best for me, as I could change it as the day went along. I used to try and get tops that I could blousson out, to try and disguise my huge belly. I also was asked about “my baby”, on a daily basis. The funniest story, was when someone told my daughter how wonderful they thought I was, for being a surrogate mother to all those babies!!!!!!! Cheri, you have been an amazing advocate for and supporter of the PKDFOC. We are so grateful to you, your family and your community. Van Kleek Hill, now holds a special place in our hearts, since you joined us. Keep strong, keep fighting and keep the faith and you will be just fine. God Bless xo
Hi Jan,
Thank you so much for your support and for sharing your story and strength on my blog. I admire you very much and love you bunches! Sure do wish we lived closer. Hugs!
Cheri is such an amazing daughter of whom my wife and are are both so proud. It is wonderfull that she is sharing her story and getting such positive feedback from so many people. She has inspired me to wear the green ribbon constantly for years now for Organ and tissue donation to help spread the word. Thank you for being so proactive Cheri and for being the incredible human being that you are.
Hi Tony,
Congratulations on raising an amazingly strong woman. I am so thankful that my path crossed Cheri’s and admire her greatly. Thank you for wearing the green ribbon!
Great article sis. I have heard your response to people who ask you the pregnant question many, many times and each time you respond which such grace. You take the opportunity to spread PKD awareness and always take care to make sure they don’t feel bad for asking. Your positive outlook is really quite incredible and I am so proud of my beautiful sister!
Hi Lynn,
Thank you so much for sharing here on my blog. I was delighted when your sister was willing to share her story as I knew it was one many of us could relate to and be inspired by. I hope you are doing great! Hugs!
It’s never easy when you just have one of the other. PLD or PKD. I’m sure having both is unbelievably hard but I love your attitude! The PKD Foundation 2014 Cnference this year in Kansas City is coming up. I urge you to attend. You will never feel at home as you will there! I wish you the best!
Hi Marlene,
Thank you for reading this post. I’m glad you enjoyed it and love Cheri’s attitude. I sure do as well. I share your same sentiments on the Conventions. Best wishes!
Cheri, you are an inspiration to all of us. I’m proud to call you a friend who brings happiness to the table each and every time we meet. You are truly a beautiful person, both inside and out.
Hi Josee,
Thank you for reading this post and sharing your sentiments. I completely agree with you. Cheri is amazing! Take care!
I’m 37 and just had a kidney transplant 2.5 weeks ago. My native PKD kidneys will be removed in 2 to 4 months. So now I have 3 kidneys,2 of which weight at least 20 pounds each! I was diagnosed with PKD at age 6, after losing my dad to PKD related brain aneurysm. I too also had a brain aneurysm at age 24 and was blessed that the doctor’s found it in time. I look somewhat pregnant, but since I’ve already had twins I feel like I look more fat then pregnant! LOL I just keep praying that my removal will go smoothly, so I can begin a new chapter of my life!
Hi Allison,
Congratulations on receiving the gift of life just 2.5 weeks ago. That is fantastic! I hope everything is going well and you are feeling great. Thank you for reading this post and sharing your story. Sending strength and positive wishes that the removal of your kidneys will go smoothly and you can begin the next beautiful chapter of your life!
Thank you so much for sharing. I only look about 7 months along & I’m definitely carrying high.Diagnosed at 18 with PKD, i have outlived all of my ancestors that had the disease. Diagnosed with Polycystic Liver disease last year. Drs told me in my 20’s I would be in renal failure by 40, but i will be 50 this year & all levels still show good. I have a closet full of shrinking clothes and it gets me down sometimes. Your positive outlook was just what I needed! Thank you!
Hi Leigh,
Thank you so much for reading this post and sharing your story. Great to hear that this post was “just what you needed.” Awesome that you are beating the predictions of your doctors! I hope that continues for many many years. I hope this story provided you with a little comfort and hope as you continue on your PKD journey. Sending strength and positive thoughts your way. Best wishes!
Cheri,
Thank you so much for sharing. Your words made me realize that while it is embarrassing and uncomfortable, etc., you are handling it with great grace and confidence. I’m 38 with PKD diagnosed at 14, and single in LA, where appearance is too much the focus. I’m not at the stage yet, but I’m on my way and starting to notice it much more in the past year. I too have cysts on both kidneys and my liver. Yours and Valen’s words are giving me great insight as to how I can handle this with dignity when the day comes. I also feel so bad when I think of how heavy it must feel- I’m already uncomfortable with these enlarged organs! Stay strong and keep up your amazing spirit. You are inspirational. – Jennifer
Hi Jennifer,
Thank you so much for reading this post and sharing your experiences. I appreciate your kind words and hope this blog is playing a small part in helping you along your PKD journey. You are a strong and positive woman! Keep up that beautiful spirit. Best wishes always!
Thank you for all of the wonderful comments. Stay healthy, stay positive, and enjoy each day.
Hi Cheri~
Thank you so much for sending positive thoughts for my future nephrectomy! Yes, your right it will be beautiful. This disease has been in my life since the day I was born and reeked havoc on my family and myself since I was 6 yrs old. I’m so grateful to the Lord above for giving me a chance to raise my children without the constant pain. Prayers to all with PKD & their families!
♡~ Allison
Hi Allison,
I’m sorry for the confusion. I wanted to let you know that the message you responded to came from me, Valen Keefer who is the blog writer for PKD Will Not Beat, not Cheri. Hope you’re having a beautiful day!
Hi Valen,
Thank you for letting me know who I needed to direct my thanks to. I appreciate your care and concern. Love your blog, it sure hits home!
Hi Allison,
So glad that you are enjoying my blog. Wishing you the best of health!
I am so grateful for this essay. I am am asked every day about my pregnancy, and it’s so hurtful and embarrassing to feel that I look strange or grotesque. My brother does not drink at all, but people assume he is an alcoholic.
I made a very personal and individual decision not to have children because of my PKD — my branch of it will end with me. So in addition to feeling set apart (or rendered invisible), when people ask me about what they think is a pregnancy, it can be especially hurtful because I feel not-quite normal in another way, too.
Last week, I decided to start telling people about PKD to raise awareness and support. Finding this article helps give me the strength to do it.
Wishing you health.
Hi Orlee,
I’m thankful that you have connected and found comfort through this blog post. I’m very sorry what you and your brother have to deal with every day. I too feel the same way about having children. We must remain as mentally strong as we can while being visually reminded every day of our PKD. I commend your strength and hope as you share your story it will be as therapeutic as it has been for me. Thank you for reading my blog. I wish you the best of health!
-Valen
Hi,
I just want to thank you for the story. It made me feel better. I, too have gone through it, exactly the same. It took me a couple of years to except my body the way it is now, but since I have done it, I am no longer (hardly ever) embarrassed about my belly and wear tight maternity shirts, instead of hiding it. It gives me a chance to spread the word about PKD.
Hi Lori,
I’m glad you enjoyed this story. Your positive spirit and resilience is inspiring. Thank you for sharing your strength with all of us.
I too have PKD and PLD and purchase all my clothes from a company called Cut Loose that makes lovely clothes for everyday women who don’t like wearing tight clothes. I always find something nice. http://www.cutloose.com.
Thanks for sharing your story.
Hi Ann,
Thank you very much for sharing this fantastic and helpful site. I hope your health is well. Take care.
Ann,
Thank you for sharing this site. It can be exhausting searching for comfortable clothes that look nice.
I came across this blog from earlier this year and was so glad to read from others who can relate. (not that I am glad that they have PKD but glad that I am not alone). I struggle with the weight of my kidneys and am wondering if anyone knows why they don’t remove. My doctor keeps saying it is too risky of a surgery but I am thinking that carrying all that weight around the middle cannot be good for ones health. Anyone out there have their kidney’s removed? Just curious?
Hi Jennie,
I am glad that you found my blog and others that you can relate to. You are definitely not alone. My kidneys were the size of footballs and were removed when I was 18 years old. They were functioning 60% when they removed them. Hard to believe, however my cysts would not stop bleeding and they were forced to take my kidneys out or I would have not survived. My incision is the whole way across my rib cage, more than 15 inches long. It is a massive surgery and I believe the doctors only do it if absolutely necessary. Although we suffer the same disease, our bodies are quite different. I would suggest expressing your emotions/concerns to your doctor on this topic and ask all of the questions you have in order to be comfortable with how you and your health is being treated. Wish you all the best!
so I feel a little silly asking this, but do you find that you have bladder incontinence? I am wondering if it is because of the large size of my PKD kidneys that I have this problem!
Hi Julie,
Thank you for sharing and asking. There are never any silly questions on this blog. 🙂 I have reached out to Cheri and asked her. I’ll let you know what she says. My kidneys were the size of footballs and removed when I was 18 years old. I do not recall having any bladder issues, but I was very ill at the time, hospitalized and on a lot of meds. I’ll be in touch when I hear from Cheri. Take care!
Hi Julie,
I heard back from Cheri, and she does not have bladder incontinence from her PKD/PLD. I would suggest informing your doctor on this and getting their feedback. Wishing you all the best!
Hi,
I was diagnosed with PKD when I was 67 yrs and I am now almost 70. I just had a renal CT to get a better look at the mass on my right kidney. My GP just called me and said to get a hold of my specialist which I replied I had an appointment for Feb 2/ 2024. He said no you call them now because your kidney needs to be removed. I was kind of in shock and didn’t ask any questions (duh) and now waiting to hear from my specialist. I know you can live with one kidney but can you live with one kidney with PKD.
I doubt I could get a transplant at my age.
Everyone’s stories are inspirational and I wish you all the best. Guess I’ll have to wait for my call to get any answers for my questions that I wrote down so as not to forget.
I have been researching all morning since the call but no where is the answer for living with one kidney with PKD.
Love,
Jyl
Love all of your comments. I too also have a huge Pkd belly. I just wish I could look normal but I’m finally realizing this Pkd is my life. I’m the 5TH Person in my family to have Pkd then next is my sister and my 19 year old son also has PKD. So we know everything about this disease just wish it would be easier mentally and physically . Hopefully there will be a cure soon for this awful disease.
Hi Karen,
Thank you for sharing and I’m so sorry that you live with the visual reminder that you have PKD. I have learned it is important to accept the “new normals” along our path of PKD. It’s not easy and we need to share our emotions to help keep us strong, focused and positive. We do battle a lot mentally and physically and I hope the support of others and knowing we are not alone helps a bit. I will continue sharing my journey and doing all I can in hopes for a treatment and cure! I hope when you look in the mirror, you see the strong PKD warrior that you are!
Thank you for this article and for the encouraging posts on your blog. I’m 51 and over the past 2-years, my gut has almost tripled in size – pants fall off because I’ve lost weight and muscle tone, but my stomach girth requires me to wear a XXL shirt. The larger I get, the more difficult it is to eat what I used to, or breathe normally while bending over…I’m sure you all know the feeling. Last week my Nephrologist shared with me that he will speak to his colleagues at UCSF Nephrology – though I’m still stage 3, my kidney function isn’t low enough for dialysis / transplant; he said there is a “different list” for patients who have special needs – i.e. what I am suffering with now. I’m almost to the point where I would rather have them both removed (each kidney is the size of a very long, inflated football) so that I can breathe, sleep and function normally without gut and back pain. : ) Hang in there everyone!
Hi Gary,
Thank you for sharing your personal journey, although I am very sorry to hear what you are enduring. I can totally relate and sympathize, as I dealt with all of the same symptoms. Mine were so huge that a nurse asked when I was due. So not cool when you are in your teens. Mine were removed when I was 18-years-old and I am so grateful to not have them in my body anymore. If it is safe for your health, I hope you can get them removed, so you can breathe better, eat better and just feel a whole lot better. Wishing you all the best and thank you for your support and for reading my blog.
I hate to be a downer, but this truly is a nightmare. I am going to be 31 this year and the “PKD Belly” is now REALLY starting to show. I literally look like i am 9 months pregnant. I’ve even had people ask me if I am pregnant. It’s frustrating because I feel like there is nothing i can do to change this except complete removal of the PKD kidneys. I eat very healthy, do not drink alcohol, never have….very active. It is very depressing because i don’t have anyone else i can identify with. It almost feels like i have a disability. Eating has become more of a pain now as i feel like there is literally no room in my torso left for anything else. Also, what do i do when i actually want to get pregnant? How could there possibly be enough room for 2 football sized kidneys, all my other organs, and then possibly a growing baby? Someone….ANYONE…..is there any other treatment to shrink these cysts and kidneys or is it only to have them completely removed?
Hi Justine,
I am so very sorry and can totally relate and sympathize. I was asked by a nurse when I was due when I was 18-years-old! I was mortified and just looked at my mom to handle the situation. This is not fair and totally sucks and all of your emotions are understandable. Do you see a nephrologist on a regular basis? Have they discussed kidney removal with you? Mine needed to be removed because my cysts would not stop bleeding. They were working 60%, but needed to be removed or they would have killed me. I would suggest sharing your thoughts, frustrations and symptoms with your nephrologist and get their input. Sending love and strength your way. Please know that you are not alone.
You are so beautiful! I’m 22, and I was diagnosed with PKD at 18, lately my abdomen has gotten much bigger in size, i look 3-4 months pregnant but I’m not. I didn’t realize that it was a symptom of pkd. I haven’t changed my diet much but I have gained weight on the scale. I was just wondering if anyone here that has experienced an enlarged belly has also experienced weight gain? I can’t see my nephrologist at the moment because I haven’t met my deductible and ultrasounds cost a fortune for me right now (I’m a college student) thanks in advance for your help!
Hi Hana,
I was diagnosed when I was 10 and at 18 had enlarged kidneys that made me look “11 months pregnant” -said by my surgeon. Both of my kidneys were removed and I received a transplant at 19. I’m now 33. I don’t recall my weight at that time as I was super sick and spent about a year in the hospital, however our kidneys can grow to the size of footballs and weigh a lot, which would increase our weight.
Even if you can’t get an ultrasound right now because of insurance, can you at least go for an appointment? Makes me sad that insurance is holding you back from taking the best care of yourself. If there is any way I can help you, please let me know. Also, if you’re on Facebook, feel free to friend me at: Valen Cover Keefer. Wishing you all the best!
Hi my name is Tammy have pkd my live is geting big I am not stressed about it it is what it is great big it nice to not be the only family with it thanks
Hi Tammy,
Thank you for sharing your positivity and letting others know that they are not alone, too. Wishing you all the best!
Truly an inspiration reading these posts. Every day is a blessing. I too have had to correct people on it not being a pregnancy. My father and brother have had transplants. I am 36 and have had 1 pregnancy. I was surprised she fit in there but she did and no complications. I am now on Tolvaptan but finding hard on my body and not sure about carrying on.
I am going to get cysts drained soon and very excited about that. Any shrinkage will be welcomed.
I am even about to try some chinese herbal treatment, why not, will let you guys know if it works. Has anyone had any luck with lifestyle changes? No alcohol or coffee? I have not given up those vices but am thinking it may help?
The potential of anyeurisms scare me more than the thought of dialysis or transplant.
Hi Helena,
Thank you for reading my blog and I’m happy to hear that you find it inspiring.
I appreciate you being open and sharing your story, emotions and questions in regards to your PKD journey. I’m very sorry that you have to deal with a distended stomach. I remember when a nurse asked me when I was due. It was awful. I’m sorry that you are dealing with that as well.
So wonderful to hear that you carried a child with no complications.
I hope you are talking with your doctor on how Tolvaptan is affecting you.
I’m thinking positive thoughts that your cyst drain procedure will go great and provide you some relief.
I appreciate your willingness to share different routes of treatment that you try and if it helps or not.
I was super sick and in the hospital when my kidneys were huge and was fed by a PICC line, so unfortunately, I don’t have any advice when it comes to lifestyle changes. Hopefully others will see this comment and respond to you.
I agree that aneurysms are very scary. Do you have a family history of them? If so, it is good to get regular MRI’s of the brain. I’d encourage you to talk to your doctor about this to help ease some of your concerns.
Wishing you all the best!
Hi everyone!!! I am 51 and yes….I’m looking like I’m pregnant. I am a lead vocalist who loved to show off her flat stomach and wear sexy clothes. . Lol. Not anymore. This passed year my belly has has grown quite a bit! Honestly, it was very encouraging to read your blog. knowing i wasn’t alone…..but I really wish you all didn’t have to go through this. But we are very blessed. There are worse diseases out there. We just happen to have a reminder of it physically. I pray they come up with a cure for every disease out there. Wouldn’t that be amazing !! Until then…keep smiling everyone. You are all amazing!!!
Hi Dionna,
Fun that you are a lead vocalist! I’m so sorry that you are enduring the visible side effect of PKD. I’m happy to hear that it was encouraging to read my blog – that means a lot! Your positive spirit will help greatly when living with PKD and I appreciate you sharing your bright soul with all of us. Wishing you all the best!
Cheri and Valen thank you for sharing this post as well as the others who shared their stories. I am 5 feet, small framed, 41 year old teacher and I look 5 months pregnant! My first graders always ask me if “I had a baby in my tummy” my reply, “Nope just had a big burrito for lunch, make sure you tell your parents that as well!” I never let other people’s comments get to me. I thank God every day that I am alive and able to be with my two girls ( 2 year old and 8 year old). I treasure every moment and memories I have with them because I lost my father from PKD at 13 yrs old. I do get sad when people at the gym cheer me on and says “wow, good for you mama, you kicked butt being pregnant and all” or when asked at Open House “Will you be going on maternity leave soon?” I do educate people when necessary but if it’s just a passing stranger, I dont feel I need to give details. Be proud of who you are. Count your blessings daily. My 8 year old daughter said to me the other day, “Mama, your body is like an oyster shell, who you are inside is a pearl!” My daughter watches my attitude and how I respond to this disease, therefore I need to be a good role model on how I fight PKD because one day we will find out if she has this disease as well. Praying for guidance in all of your journey.
Dear Michelle,
Thank you for sharing this raw comment on what it is truly like to live with PKD on the inside and outside and teaching all of us what resilience and strength looks like. And your daughters comment is remarkable and oh-so true. Sending lots of love and I hope your children live a PKD free life. Hugs!
I’m turning 45 this year, and slowly my belly is looking more and more like it did when I was pregnant 16 years ago. No matter what I do, I can’t seem to lose a pound or an inch in my belly. I’m not sure if it’s just because I’m over 40 and weight loss is harder, or if it is truly due to the PKD. I know this sounds weird, but how do I know the difference between just gaining excess weight and a growing belly is due to PKD?
Hi Suzy,
This doesn’t sound weird at all, as PKD can cause our abdomens to enlarge. Have you had an ultrasound or scan of your abdomen recently? When they do these tests, they can measure the size of your kidneys and in turn help you assess how much of your belly growth is due to your kidneys. Hope this helps. Wishing you all the very best!
I am 58 years old and have ADPKD1 inherited from my mother. I was wondering if your weight is also much higher than it should be because of the size of your kidneys and liver. I have a bit of a belly from enlarged kidneys but at 5’8 1/2″, I weigh more than each of my two younger brother (ages 49 and 52) who are 6’5″ and 6’6″. I’m trying to figure out what exactly makes me weigh so much! I have always weighed more than I look but this is nuts. I weigh 15 lbs. more than them.
Thanks!
It depends on the size of your PKD kidneys. The cysts are fluid filled, so there is extra weight in a PKD kidney moreso than in a ‘normal’ kidney. The average kidney can weigh about 1/4 of a pound or 113.4 grams. Since a polycystic kidney is fluid filled it will weigh more….and the larger the kidney the more fluid filled cysts, thus the kidney has extra weight. So just keep being physically fit and exercise as you can and your doc says is ok, and the rest of your body will be in great shape. There’s not much you can do about the size of your abdomen from the enlarged kidneys. So yes, you will weigh more because of the kidneys. Stay well!!
obviously like your web site but you have to check the spelling on several of your posts.
A number of them are rife with spelling problems and I to find it
very bothersome to inform the truth on the other hand I’ll surely come
back again.
I enjoyed this comments . I have pkd had a transplant 18 months ago but now struggling with my own kidneys being so big . The weight gain and being uncomfortable 😣 bending eating and trying to keep fit as possible . Going to talk to my clinic when this lockdown is over . Stay safe all 🌈❤️
Hi Sylvia,
Congratulations on being 18 months post-transplant! Yay!!! Sorry to hear you are still enduring the side effects of having your original kidneys. If safe for you, hopefully you can get them removed some day. Hope you’re staying safe and healthy during this unique time in our lives.
It is great to hear about others experiences. I am 69 now and have PKD which I have known about for 40years now. it is only is recent years that my kidney function really dropped. My Gfr is now 8 and I am on a couple of kidney transplant lists. I have had liver cysts this whole time but they have gotten really large in the past couple of years, forcing me to buy larger clothes to wear. It is very uncomfortable. My doctor is going to look into getting me on the lists for a liver transplant too. Has anyone had a kidney and liver transplant at the same time? I have heard it is better for them to come from the same donor.
Hi Kathy,
So fantastic that you have lived so many wonderful years before dealing with severe issues from PKD. I am 38 years old and received a kidney transplant when I was 19 and a liver transplant when I was 35 because of PKD. I did not receive them at the same time, but now navigate being a dual-transplant recipient, with a new kidney and liver. I am glad to hear that you are on a couple kidney transplant lists and hope that you receive “the call” very soon and that all goes smoothly. Wishing you all the very best!!
So many strong people on here, u should give yourself a clap on the back.
As I write this I’m.laying on the flat if my back, cyst just burst, I’m swollen, chronic back pain and swollen like a beached whale ready to explode. I’m a 42 Yr old guy stage 3b pkd
There are times when everything is fine no.major swelling. It’s easy to feel robbed of your confidence on the days when u can’t see your toes; when then 3Xl feels tight that u considering getting 4xl clothes.
In the last few months, I have had new colleagues suggest I go loose weight. I have been so annoyed I oppen my chef jacket and make them look at my kidneys.
Some days as I suggested I hate my body, some days I just don’t care.
Dear Brian,
Thank you very much for being so honest and willing to share what life can be like with PKD. I am sincerely sorry for what you’re enduring. When I was 18, a nurse walked into my hospital room and asked when I was due. I was devastated and recall just looking at my mom like please get this person out of my room. I am thankful that both of my gigantic kidneys were removed. Thank you again for your strength and sharing so that others know they are not alone. Wishing you all the very best on your path with PKD.
I’m a Canadian woman living in the UK whose mother’s large family has had more than an average number of ADPKD cases; a “lucky” kidney infection 40 years ago got me a diagnosis early enough to be useful. An immediate 24-hour depression lifted when the specialist said that keeping my BP down was the only thing I could do to could slow it down, which largely worked for 40 years. (Because of this, my current renal guy doesn’t believe it’s the dominant form; but recent research at the University of Toronto discovered a mutant family gene that means some of us need transplants in our 30s and 40s, while others have stayed well into later life.) But even relatively well patients may have many associated and mutually interactive conditions, and I’ve discovered specialists either don’t know, or won’t share, widely available information about their management – it’s left to us to find reliable research on the insomnia, digestive and dietary problems; neuropathic, heart and circulatory issues; inflammatory nephritis, liver, and skin problems, etc, and how to monitor signs of deterioration. At nearly 80, I’ve always felt lucky; and even though it’s now deteriorating, I’m really thankful as my mum died in her 60s after years of dialysis, too long ago to have a transplant at 60-plus. So to those of our band who’re really suffering I’d say, While a positive outlook helps, I know it’s really hard to do when things are bad. Best wishes and good luck to everyone.
I’m grateful for all of these comments and it’s amazing that this post from 2014 keeps on giving! I’ve been dealing with PKD belly and found this blog post while searching for information regarding the removal of the kidneys during a transplant. My sister had a transplant in 2019 but she never had the enlargement of the kidneys themselves so they were not removed when she received her new kidney. I’m under good care with my nephrologist and just now reading these comments and realizing why he wants another MRI as he saw something in my brain on my last scan. I didn’t know aneurysms were part of it!
I actually am so glad that I have spent my life doing what I wanted to as much as possible as no future is guaranteed. I am on Jinarc for free (from the company) and I’ve been really lucky that I can work for myself and have a partner who works. I’m still travelling and not dealing with too many side affects (knock wood).
I think a lot of our body image issues are from a deep societal fatphobia and I’ve been using my own situation with a massive belly to remind myself that even if I was fat it doesn’t make me a bad person. I was really afraid to see some old friends in case they thought I was fat but really who cares? If they don’t want to be around me because they think I’m fat (too old to be pregnant) then they were never really interested in me as a person.
I went to Mexico recently and went swimming and snorkelling with my huge belly and I didn’t even think about it. it was really life affirming. We all deserve to live life and enjoy ourselves without the societal shame about disabled bodies or fatness. I work really hard to remember that my future is not guaranteed so there’s no way I’m stopping myself from doing everything I want to do for as long as I can. And I always get a seat on the subway!
Hi Jen! Your first sentence touched me, as I am so thankful that this post that I wrote almost 10 years ago “keeps on giving!” 🙂 I really appreciate you sharing your truth and personal journey for others to learn from and be inspired by. Warms my heart to know that you are living live to the fullest no matter what!
I have a long line of PKD in my family. My dad passed away 5 years ago after spending 5 years in dialysis. I have just recently gotten this large belly. I have never had a weight problem and I think I need to go to the dr. Did anyone else “suddenly” get this big belly? I’m near tears.