About

My name is Michele and I live in NY with my husband, Matt, and three boys: Max, Nate, and Gabe. Max is 8 and just finished second grade. Nate is almost 5 and will be in kindergarten in September. And Gabe is 2 and will go to nursery school three mornings a week in the fall.

Max and Gabe were diagnosed with ARPKD (Autosomal Recessive Polycystic Kidney Disease) two years ago.  This has really changed the way we thought things would go in our life.  ARPKD (www.pkdcure.org) is a genetic condition that affects their kidneys and will ultimately lead to the need for a kidney transplant. Right now both boys are doing well with the exception of having high blood pressure that they both take medicine for on a daily basis.

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8 Comments Add your own

  • 1. Javier  |  October 27, 2009 at 6:45 pm

    We are parents of two children aged sixteen and fourteen affected ARPKD. We live in Madrid (Spain). Our children have not yet been transplanted. They lead a normal life with medication and medical checks every three months. I do not understand much English but will now visit your blog. A greeting

    Reply
  • 2. Sarah  |  July 2, 2010 at 4:54 am

    Hi – Just came across your blog and wanted to say hi. We are from Auckland, New Zealand, and also are affected by ARPKD. Our son was born six months ago but sadly lived only six hours due to ARPKD. It has been so devastating. I am very glad to hear your children are doing well with ARPKD and will be very interested to read your progress. Thank you for sharing your journey. Kind regards, Sarah.

    Reply
  • 3. Mary Galvez  |  July 22, 2010 at 3:32 pm

    Recognized the pic of your boys while randomly searching info on ARPKD. 🙂

    Reply
  • 4. Inbal  |  October 8, 2011 at 11:52 am

    Hi Michele. I am a mother to a 3 year old boy with ADPKD, and 24 weeks pregnant with a girl who is likely to have ARPKD. we just found out and waiting for a diagnosys. Then we’ll decide what to do. I entered your blog several times during the last few days, and must say that your blog is probably the best information source, other then plain medical pages, for me right now. English is not my language, but you managed to reach me over seas and other gaps. keep going and may you all be well. I’ll keep visiting.

    Reply
  • 5. Sherri Lerner  |  January 5, 2012 at 9:36 am

    Hey Michele.
    I’m troubled to see all the hurdles and difficulties you and your guys (all four) have been going through lately. I hope things work out with new drs and the kids’ health. I hope you are managing to keep your head above water too. I can’t imagine…

    Sherri Lerner

    Reply
  • 6. Audra Forst  |  September 6, 2012 at 9:52 pm

    Hi Michele, I too have an 8 year old son with ARPKD. At my 20 week ultrasound they discovered that his kidneys were much larger than normal for that age… and while they could not diagnose till birth they speculated that is was PKD. He beat the odds and survived!!! He has had a very healthy life much like your boys only dealing with high blood pressure til recently. He became anemic as well. Over the last year his growth really slowed down… almost stopped and his disease has begun to progress. We are currently set up for a 3 day visit at the U of Minnesota to begin his transplant evaluation. While we’ve known his entire life that it would come to this… OVERWHELMED is the word. Like you, my main worry is my son’s well being and quality of life. I thank God everyday for him and for the 8 healthy years that we’ve shared. This is my first attempt to gain support, and I’m thrilled to have been directed here! Thanks for doing what you do!!!

    Reply
    • 7. Minnesota Prairie Roots  |  December 31, 2012 at 4:06 pm

      I’m a Minnesota blogger who on December 13 read a newspaper article about Audra’s son, Samuel, and his need for an immediate kidney transplant. If anyone knows whether Samuel received this transplant, I’d like to hear. I blogged about his need for a new kidney and would like to update my readers.

      The news headline read: Young Gibbon boy hopes for a Christmas miracle; needs a kidney transplant ASAP.

      I pray that Samuel and his family got their miracle.

      Reply
  • 8. Heather Brown  |  April 2, 2013 at 2:40 pm

    Hi. My name is HEATHER. I am pregnant with my second child and was told about 9 weeks ago at my 22 week check that our little one has ARPKD. I was given little hope of our baby surviving and was even offered to terminate my pregnancy if I wanted to.

    I am 31 weeks pregnant today. Little to no fluid aroudn our baby but she is thriving. She is measuring about 11 days ahead of schedule and we are due back in the doctors office Thursday.

    Any suggestions as to what we need to be thinking about and preparing for? I just want to make sure I am ready and know the right things to ask.

    Thanks

    Reply

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