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Judi’s Fight Like a Girl Story (Polycystic Kidney Disease aka PKD)

Judi's Story (PKD)In brief I was born with polycystic kidney disease and began suffering symptoms when I was in my late teens. The cysts are in my kidneys and liver which caused both organs to be enlarged. When a cyst itself enlarged and became engorged with blood or infection they became extremely painful. Eventually they would rupture and cause internal bleeding for which the only “cure” was to lie flat on my back for weeks at a time. I once figured out that if I added my “down time” all together out of 16 years in my twenties and thirties I spent an entire three of those years flat on my back in bed and/or on the sofa trying to get the bleeding to stop. It was disabling and caused me to limit and exclude many activities I wanted to do and it also meant that I couldn’t wear many types of clothing that I wanted to wear because I could have nothing touch my waist – ever. It would cause the cysts to act up and bleed if I did.

In spite of all of this my husband and I did adopt ( because we didn’t want to pass this hereditary disease on) and raise three children who were hard to find homes for. Two were of mixed race and one was an older child. All were and are a blessing to us!

At the age of 36 I lost my kidney function entirely and had both kidneys removed in two separate operations. I was mighty glad to be rid of them, too! After over three years on dialysis, I received a deceased donor kidney that lasted for 14 glorious years. In 2002, when that kidney rejected, my brother-in-law gave me one of his kidneys and both he and I are still going strong to this day. May God bless both of my donors and their loved ones. Since their generous gift and the removal of my diseased kidneys I have lived a pain free, active life.

Yes, it’s often been a tough fight, many times I found being so ill during my young years to be extremely isolating. There are now serious side effects from my medications that cause me problems and my transplant won’t last forever but all in all I am a very happy, VERY grateful woman! Two months before I married my high school sweetheart at the age of 22 I was diagnosed with my disease and told that I would not live past the age of 40. Here I am today, married to the same man, with 4 grandchildren and am 63 years old!

Thank you for this website and FB page. How nice to have fellow “FIGHTERS” to share with. We’re fighters, we’re survivors, and we don’t take any moment of any day for granted because of it!!!

Judi
New York/Florida
Submitted 9-7-11

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

6 comments

  1. What an amazing story! I am 24, and I also have renal failure (we’re not sure why, yet) and I worry about being infertile, and also not being able to adopt due to my health. If you don’t mind my asking, was this something you found difficult?

    Holly
    Christchurch, New Zealand

    • Hi Holly. So sorry you have to deal with this. Renal failure doesn’t make you infertile as far as I know. I wouldn’t worry about that if I were you. I’ve read of many women who have had children both while dialyzing and with a transplant as long as they have close supervision by their medical team.

      We adopted our children because my disease is hereditary and so my husband and I decided not to pass it on and adopt children in need instead. It was very rewarding and not difficult for us. But then, I had always wanted to adopt at least part of our family, anyway. Guess I kind of felt as though we made lemonade out of lemons.

      As far as renal disease preventing you from adopting, that probably could be a problem, unfortunately. When I look back I’m surprised we were accepted to adopt although I was healthy at the time. And, it was probably a careless move on our part for the sake of our children. Thanks be to God it did work out fine for all of us.

      I have a feeling things will work out for you and I’ll keep you in my prayers. I don’t know your entire story, but I can say from my own experience that being young is on your side. Again from my own experience my overall advice is to NOT miss any immunosuppressant medication doses (and hopefully no other meds you’re on, either), take them on time and don’t eat 2 hours before or after you take them. When you feel tired, drained, or just “off” take care of yourself, rest, relax, etc. Our bodies are not starting out at 100% each day and we have to be good to ourselves first in order to be good to anyone else in our lives. Wishing you all the best!!! Judi

  2. . I am 38 and a mother of 2 children. I also suffer from PKD. I was diagnosed at the age of 14. My husband and family are supportive but sometimes PKD just takes over and I have to miss out on so much of our families life. Its hard because sometimes I don’t look sick even though I deal with this disease on a daily basis. Thank you for telling your story

  3. Hi Judi, I just wanted to thank you for sharing your story with the world. One of my family member has also been diagnosed with PKD . By reading your story we were relieved knowing that even after Kidney Transplant one can survive well. All our best wishes to you and your family.
    MM
    Melbourne
    16.03.2012

  4. Judi, I loved reading your story! I, like the others, also have PKD. When I was in my mid-20s I had severe flank pain that dropped me to the floor (twice), so I had all manner of tests run yet the doctors couldn’t diagnose the problem. Fast forward to my mid-30s, and once again I had the same severe pain so I went to an Urgent Care facility where I was treated horribly by an intern (he didn’t believe that it hurt as badly as I claimed, so he karate chopped my right kidney…when I screamed and fell off of the table he realized that there could possibly be a greater problem than he had first thought). I was sent for testing to see if I had a kidney stone, and although that was ruled out the technician urged me to go to a nephrologist because it took my body 4x the normal time frame to allow the dye to pass through my system. Unfortunately, I had an HMO plan so it took a full year of fighting with the insurance company, and with my doctor, to finally get permission to see the nephrologist. By this time I had pretty much figured out what the problem was myself, and the CT scan tech agreed that it was a strong possibility. The nephrologist confirmed the diagnosis and put me on pain meds for when the cysts rupture. Now, I’m 48 years old, still holding on to my original set of kidneys, still have occasional pain, but I’m finding that my mid section is expanding…not a good sign. I will be scheduling an appointment soon to have a follow-up done to determine my kidney function (blood results have not changed significantly, so fingers crossed it won’t be bad). Thank you for sharing your story. I have been living with this for so long that it has just become a part of my life that I don’t really think about, but I should…I am also a warrior and I proudly fight like a girl!

  5. Hi Judi,

    Can you tell me what your first symptoms of PKD were? I have a 16 year old son that I am worried about, his aunt and cousin both have PKD , and he complains sometimes that when he doesnt get enough water his kidneys hurt. I am taking him in for a blood test tomorrow to find out if he has elevated protein levels, and I guess we will take it from there…

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