I'm 47 years old and people are still asking me if I am pregnant. I try to take it as a compliment about how young I must look, but when people first started asking me, I would turn very red and uncomfortable. Then they would also turn red and it was embarrassing for both of us. I have the dominant form of polycystic kidney disease (ADPKD) and polycystic liver disease (PLD), causing my kidneys and liver to develop multiple fluid-filled cysts. As a result of cyst growth due to ADPKD, kidneys become significantly enlarged and, over time, kidney function deteriorates. ADPKD is one of the most common life-threatening genetic diseases, affecting approximately one in 500 people.
Only once, while buying a decaf coffee, did I say "yes" when asked by another customer if I was pregnant, and what a big mistake that was! I tried answering her first question, "when are you due?" and was in the middle of trying to calculate my imaginary due date when she was already on to the next: "Is it a boy or a girl?" 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 burst into laughter.
ADPKD is a genetic disease -- and a parent carrying the gene has a 50 per cent chance of passing it on to their children -- but I mutated the disease, which means my parents don't have it, and I hadn't even heard of it until I was diagnosed about 13 years ago. At that time, our third child was about a year old when I noticed protruding lumps in my stomach and my waistline getting bigger. My doctor sent me for an ultrasound where I learned both of my kidneys and my liver were filled with cysts. I was then referred to a nephrologist who diagnosed me with both ADPKD and PLD.
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 and I will need a liver transplant eventually, probably before a kidney transplant.
Recently, my worst fears about ADPKD came true: both of our daughters, now 20 and 17 years old, have ADPKD. 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. It has been a roller-coaster journey full of disappointing news and challenges, but also opportunities and evaluating the most important things in life. Here are some of the things I've learned along the way:
Get involved with the patient community (and your local community!)
After being diagnosed, I started researching, and found out that the PKD Foundation of Canada has a chapter in Toronto and it hosts annual Walk for PKD events in September. That year, I held a bake sale in my small town of Vankleek Hill, got Scotiabank to match my fundraising, and ended up bringing over $8,000 to Toronto. The next year I started my own Walk for PKD in Vankleek Hill and 11 years later, we have raised over $170,000 for the PKD Foundation of Canada from my little community alone. It wasn't easy at first being so forthcoming about my disease, but the support from my community has been more positive than I could have ever imagined.
If you're living with a chronic illness or know someone who is, be proactive and get involved with a foundation or patient community. Knowing you're not going through it alone and have a whole network of support relieves a lot of stress and questions.
Learn to love your body
Since I was diagnosed 13 years ago, my liver has grown so large I can only wear maternity clothes. I try to wear clothes that hide the lumps, and I'm hoping the tight-fitting maternity trend will end soon! The manager of the maternity store is always happy to see me. After all, she doesn't have many life-long customers. I'm not going to say that I never get a little discouraged by my appearance and my health. 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 learn to be happy with the body you have and make the best of it.
Research your options
When I was first diagnosed with ADPKD, there weren't any treatments available that would slow the progression of the disease. I worked with my physician on managing symptoms, which included blood pressure medication, drinking lots of water and adjusting my diet to help my kidneys. I also enrolled in a clinical trial six-and-a-half years ago for a treatment, JINARC™, which was recently approved by Health Canada for adults with ADPKD. It's so exciting to finally have a treatment available that could slow the progression of this difficult disease, and to know that I was a part of the process.
Despite all of this, I have always been a positive person and I'm grateful and happy for the life I have. I am trying to pass this positive attitude onto my children. I never make people feel bad for asking me if I'm pregnant, but instead I look at it as an opportunity to spread the word about ADPKD. 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. Happiness or hopelessness -- they are both like diseases -- you need to decide which germs you want to spread.
Cheri Barton lives in Vankleek Hill, Ontario.
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