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Kidney Chronicles: Part One - wolfhirschhorn.org

     I have asked on the list serve if any one could help with any information about kidney diseases and transplants, and although many people offered support, no one responded about actually going through a transplant. So I thought I would blog about our experiences to help others. And as usual, I am being selfish here because writing is the best way for me to deal with the emotional roller coaster we have been on since hearing this news two weeks ago, the day before Christmas Eve.
     When Amelia was released from the NICU three and half years ago, her first specialist appointment was with a nephrologist, “Dr. K.” Joe and I both went the first time, but because we had to be seen for once a week throughout the summer, Joe did not come back with me because he had to work. This left me alone with a man who I hated with a passion because he made me cry the first four visits. It didn’t help that I was an emotional mess after Amelia was born. It felt like every doctor had some negative news for me about her future. During the first visit, Dr. K. very bluntly told me that Amelia would need a kidney transplant after she reached twenty five pounds and that it would come from one of her parents. He explained about her kidney disease and put her on two medications: Kayaxalate and Sodium Bicitra. But by the end of the summer, her kidneys were functioning so well they took her off both medications and we only had to be seen once every three months. I believed we had won a very important battle and told myself no one could predict the future and never once thought about the kidney transplant until two weeks ago.
     I grew to love and respect and Dr. K. He was tough on me in the beginning but I realize now he was preparing me for a lifetime of brick walls. But I am ok with brick walls. I can handle brick walls. To quote one of my favorite men, Randy Pausch, “Brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something!” And I have learned that what I want for Amelia, I usually get for Amelia!
     Dr. K once said to me, “It’s a shame about the developmental and mental delays with these children. They are all so happy.” I paused for a moment. What came out of my mouth could not have surprised either of us more.
     “No, that is not the sad part. I don’t care if she ever goes to a regular school or acts like a ‘regular’ child. I love who she is and wouldn’t change anything about her except for her health. Now, are we going to get these kidneys working or not?”
     He smiled at me for the first time. Unfortunately, this would be one of our last visits with Dr. K.
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     Up until Christmas Eve, Joe took Mia to her nephrologists visits every three months because I went back to work. We switched doctors so we could be seen at a satellite office and not have to travel into the city every time she needed to be seen. All her lab results for the next three years were great except when she was sick and she would dehydrate. But during this time she was always hospitalized because of her breathing, so they “fixed” the kidneys with IV fluids.
     This past summer Amelia had open heart surgery to repair her ASD. This was the ASD we never knew she had until she became very sick last March and coded. Her surgery went so well I felt I had dreamt it. She was in for four days and sent home to recover. She was not intubated for very long after the surgery. She did not get sick or need to be hospitalized at all this winter because her heart was working correctly. So why now? Why are her kidneys failing now? She is the healthiest she has ever been. She is the strongest she has ever been and most importantly, she is the happiest she has ever been.
     This Tuesday we meet with the Transplant team with  our laundry list of questions. I am confident they will answer all of our questions about the procedure and the logistics of the transplant. I am not sure they are going to be able to answer the question that has been burning in my heart since we heard the news. “How do we tell the boys?”

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8 Responses to Kidney Chronicles: Part One

  1. Laurie says:

    Chrissy, I do not know what to say; I am trying to put myself in your shoes right now, and I just cannot. Mia is definitely one of the sweetest babies I know~ with or without this syndrome our children share. All I can offer is words of love, my support, and reassurance that she will make it through this challenge as she always has– with a fierce spirit and ultimate success. My prayers will be with you always, and if there is anything I can do, do not hesitate to reach out to me. Jersey girls stick together. xoxo

  2. Sheral Jackson says:

    Chrissy & Joe,
    I’m sorry you have yet another obstacle to jump over! I do know that if anyone is strong enough to get over it, it’s you both! I have no words that can take away your pain, your worry or the easiest way to tell the boys! The only words I have are I will keep you all in my prayers, my thoughts & my hopes! If there is anything I can do, please let me know…
    Sheral

  3. Heather says:

    Chrissy, you mentioned feeling like you are on an emotional rollercoaster, and I can feel that through your writing. After reading this, I am both frustrated/saddened with you that Mia has to go through this, and impressed/strengthened by the momma-warrior spirit you seem to possess. I will be thinking of you and Mia this week as you progress through this journey. Also – I too am a big Randy Pausch fan and loved the quote you included. Climb that brick wall or knock it down or do whatever you need to do to get your little girl healthy! We’re rooting for you and your family!

  4. Anonymous says:

    As I read your stories, even in this sad time, you and your daughter are always an inspiration to me. I know that you and your family will get through this and be stronger. I love hearing about Mia and sharing in her journey. We will be with you on this one, too. Always in our thoughts. Sending hugs.

  5. Erica Fujimoto says:

    Chrissy and Joe, tears are streaming down my cheeks reading this. I am always so blown away by your strength in all things. I know you probably don’t feel like it, but you really are such wonderful parents. Next time I am in NJ, I really want to meet your amazing little Mia. You are all so inspiring! Love you all, Erica

  6. Chandra says:

    I saw this link on Facebook. I am so sorry you and your family are going through this.
    I know very little about transplants, but I do have a girlfriend that donated one of her kidney’s to her cousin. Is this not an option for your family?(I mean would you be able to look for donors yourself?)
    My thoughts and prayers are with you.

  7. judith says:

    Have you considered A I DuPont hosp for children. It’s about 30 minutes down 95. I have a granddaughter who has very severe Lymes. It actually affects her like a stroke would. The doc at CHOP said it was all in her head. hope you find a doc whith respect for your faily

  8. shirley bidnick says:

    I learned about this site after reading that Mia was denied a transplant in the Inclusion Daily, so I want to thank you for bringing me here. I hve started reading through all the stories and now I am on Amelia’s. You are a dragon mom,so unapologetically emotional,passionate, strong, and creative. I enjoy the privilege of seeing your family photos. The pictures of Amelia with her two big brothers and burley gentle father are a powerful image of weak and strong. She looks so safe, secure and comfortable with them, where she belongs. I am very interested in the outcome for Mia. My daughter was born with a missing kidney and now has kidney failure. She will need a transplant eventually. When her physician told me this, he never indicated that her genetic condition could stand in the way. Since reading about your situation, I have learned that individuals with severe disabilities are put on transplant lists but they don’t recieve organs. I want to learn more about the specific disease process that causes the failure in WHS and what, if anything can be done to slow it down. The literature I have found about kidney abnormalities in WHS has been limited. I know you are dealing with a major crisis in your life right now. I am signed up to recieve updates on Mia’s situation. I pray that God will help her get a kidney,the transplant will be successful, your whole family will stay strong, and the outcome will be positive. When it is over and you are all enjoying good health I hope you will be able to share what you know about WHS and kidney failure with me. You and your family are always on my mind and in my prayers.

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