Archive for April, 2012


The Hudson Valley Chapter of the PKD Foundation is having a cocktail party in May and they are honoring me. I feel very honored 🙂 And very proud!



April 16, 2012 at 10:13 am Leave a comment

Double checking

Lately I feel like I have to double check so much when it comes to information from doctors and pharmacies.  Recently the mail order pharmacy sent Gabe a medicine that is 300 mg and should be taken once a day and they wrote on the bottle twice a day. The pharmacy is saying the doctor made the mistake and the doctor is saying the pharmacy made the mistake. Either way I had to stay on top of it and luckily knew what to give him. Then the other day Gabe had a strep test that came back negative but the 24 hour one came back positive. But by that time we were already in California at my parents for our spring break. So I called the pediatrician and told her I wanted him to have something different than amoxicillan since he had just had that 2 weeks prior. First she argued with me and said in the chart it showed we hadn’t been there since February. Then I said I wanted a pill instead of liquid because he hates the taste. She said he was too small for the pill. So she called in the prescription to the local pharmacy and my dad picked it up and came home with a capsule of 500 mg twice a day! I called the pharmacist and he agreed that it seemed high for someone who only weighed 35 lbs but that he questioned the doctor and that is what she ordered. I was frustrated since we had had a whole conversation about his size and kidney disease and the fact that he hates the liquid. I decided at that point to call the nephrologist to make sure the dosage was correct and the doctor on call said although it was probably fine she felt it was too high and changed it.


I am just so frustrated with having to double check everything. I am also frustrated because I feel like it is all on me to figure out all of the medical details for the boys.

April 9, 2012 at 4:27 pm Leave a comment


Matt says I expect way too much from people and that is why I am always disappointed. I think I do expect a lot and want a lot from the people in my life. From my friends and family and also from the doctors we go to see. I want people to support me and listen to me and also for the doctors to respect me and the boys. I know it’s just not that easy and I am often disappointed. I often feel like I was such a different person before the boys were diagnosed with ARPKD. I was always a worrier and did always expect a lot from people but I was also more laid back and calmer. I worried less. I know I am a good advocate for the boys but I hate that I worry like I do and that I am not as carefree as I once was. I don’t think I laugh as much as I used to and I get upset a lot easier. And I expect a lot more from people. Probably way too much and I am often disappointed. It’s hard for me to figure out a way to go back to the way I was before. Our life is so different now. Things were a lot easier before. It’s sad to me that the boys will not have a carefree easy life. It’s sad that they will always have their health to think about. Even though they are “milder” at this point they will have daily medications most likely for the rest of their lives. And endless doctor’s appointments and the constant thought of their kidneys and how their lifestyle affects them.

So…yes I do expect a lot from people. But honestly I think at this point it’s okay for me to have these expectations if those are the kind of people I need in my life supporting me.

April 1, 2012 at 4:41 pm Leave a comment

April 2012
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