The Diagnosis

August 30, 2008 at 1:50 am 2 comments

We had friends staying with us this week and they started asking questions about how the boys were diagnosed and it brought back a lot of memories, most of them painful ones. Hearing the diagnosis of ARPKD was a really hard thing and even harder the second time around. Granted Gabe was born with lung issues and a possibility of something going on with his kidneys. But I still didn’t want to believe anything was wrong with him. When he was first born and was so sick I was stuck at a different hospital and had just had a C-Section. I didn’t have access to Dr. Google so really just lay in the hospital bed worrying about it. Just worrying about his lungs, not really that he would be diagnosed with a kidney disease. Then once he pulled through and the first nephrologist (Dr Bad Bedside Manner who we don’t use anymore) didn’t want to diagnose him I guess I got my hopes up. Then on April 18, 2006, (Max’s sixth birthday) we took Gabe to Dr Awesome for a second opinion. He immediately gave the diagnosis if ARPKD as a “working diagnosis” and wanted to do more testing to confirm. That was a hard day. We had to pull it together to go to Max’s school to celebrate his birthday, which was not the easiest thing in the world to do. The next few weeks went by in a blur. I was home taking care of a newborn, taking care of 2 older boys, recovering from the C-Section, living life, and trying to plan Gabe’s bris…. While talking to Dr Awesome we asked about Max and Nate. Since they were not showing any symptoms he felt we didn’t need to get them tested but also said if we would lie awake at night worrying then we should. So, guess which one we chose? After not much deliberation we decided we needed to. On Wednesday, April 26th, we took them in to have sonograms.  Nate went first and screamed the whole time. He was not yet 3 at the time and just didn’t want to be bothered (as usual). We had to hold him down, which the technician said made it harder to read the sonogram. Then Max lay there like an angel. The technician left the room and came back in and said the radiologist wanted to come back in and examine Max. I said “you mean Nate”. I thought she had the names backwards since Nate was the one who wouldn’t lay still. She said “No, Max”. We knew then. My heart sank and I had a pit in my stomach, that really hasn’t gone away. I have never been so devastated in my life.

For some reason Max’s diagnosis was much harder on me than Gabe’s. I think with Gabe since he was sick at birth we were expecting it more. Plus we were just getting to know him and he didn’t have a personality yet. But, Max was 6 and my sweet boy. It was just devastating. Of course now I am equally devastated by both boys having ARPKD and I wish neither one had it. But, I think I will always remember back on when both boys were given the diagnosis and how I felt.


Entry filed under: Uncategorized.

Helpless Emotionally Detached

2 Comments Add your own

  • 1. ml18  |  August 30, 2008 at 3:55 am

    Hi Michele, as I read this post, I could relate so well to everything you wrote! I remember when I took Jessica for her ultrasound last year. I was sitting behind the technician as she did the scan. I remember her slowly measuring several of the larger cysts on both kidneys. She walked out several times, probably to discuss what she saw with the radiologist. I was devastated and was so scared. I really knew nothing about PKD and had no idea what impact this would have on my baby’s future. Time and knowledge have helped me to cope better, although I definitely have my setbacks. I’m thankful that medical research is moving in on a better understanding of PKD and treatments for this disease. Hopefully, it will be available for all those impacted by this disease in the very near future.
    Ironically, Jessica is leaving for college tomorrow, so now my hubby and I will officially be empty-nesters. I’m just praying that everyone stays healthy so we can enjoy this new chapter in our lives!
    I’m also keeping your boys and your family in my prayers and praying for good health for all of you!!!!

  • 2. kidneyeyemomma  |  August 30, 2008 at 8:11 pm

    I remember the day Max was diagnosed. About a week earlier I’d responded to Matt’s post about 2nd child testing and he contacted me about it. I told him our story (Gage diagnosed age 3) and some of the hindsight things we noticed.

    I remember we emailed that day and he told me Max had it too. I clearly remember that my heart sank too. I think of course, because it is so sad that any child is diagnosed with arpkd. But I think I felt it differently because it was also your 2nd child with it. And for some reason I felt an immediate “I know what that is like, to have two kids with it.”

    I think even then I found you as a kindred spirit and yet, I’d never met you. Now, looking back, the connection we had started before you and I even ever emailed (Matt did all the emailed back then!).

    I think it is good to remember these kinds of times. I think that it also helps us remember how sad times WERE and how great times can be if we appreciate what is right in from of our eyes, instead of ahead of us.

    Love you,


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