Body Image and a PKD Belly

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.

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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.

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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.

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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.”

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