the future

August 26, 2009 at 10:28 pm 1 comment

I am often thinking about the future, as you probably know by reading my blog. And boy does it frighten me. Right now we are fairly status quo and that is a good thing. But the future…now that is a different story. That will bring lots of “fun” changes for the boys as far as health goes. I’ve been thinking a lot about it because my two friends with kids with ARPKD have had a lot going on in their lives lately and it makes me realize what is in store for us. I know every child with this disease is different but no child with this disease lives a care free life. My one friend has two kids with this disease, one has had a transplant and one is about to. The one who already had a transplant had a staph infection last week from a spider bite b/c he is immunosuppressed b/c of the transplant. Her other child is about to have a transplant and if she were not scheduled for one would be on dialysis and has many many issues going on right now while waiting for her new kidney. My other friend with a son with ARPKD is in the hospital with him right now. He had a transplant and she found out that he is in slow rejection b/c of a virus and now he was dehydrated b/c of a stomach bug. Just a little spider bite and just a stomach bug. Not at all related to ARPKD but how it affects them b/c they do have ARPKD.  

All the little extra things we as parents of kids with ARPKD have to think about b/c our kids do have ARPKD.  Like not getting dehydrated, not taking motrin, not getting kicked in the belly, watching out for blood pressures, making sure there is no blood where it shouldn’t be (you get the picture), making sure a bug bite doesn’t get infected, making sure they are only tired from doing too much not from being anemic or having a low white count or having a liver infection…., making sure they take their meds when they should, making sure to get the refills we need on meds when we should, making sure to have a copy of all of the blood tests and sonograms we have ever done, staying on top of our insurance…….. and I could go on and on. People often say to me “oh they look so good”, or “oh they could have a cure soon”, or “G-d only gives you what you can handle”, or “but they have good kidney function right now”, or “it could be worse”, or “it is what it is”, or “blah, blah, blah”…… Yes, it is what it is and I have to handle it b/c who else would but come on. Sometimes it’s just too much and really we are status quo and things are quiet around here compared to my friends with kids with ARPKD but this disease is just enough to push me over the edge sometimes. Or a lot of the times.

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1 Comment Add your own

  • 1. kidneyeyemomma  |  August 27, 2009 at 12:55 am

    Yeah, it is hard to think about the future.

    Also, I think what is doubly hard is the fact that your are living with us and all of our arpkd related drama. I KNOW it is hard not to put yourself in our position.

    I am not trying to change your mind about these feelings because they are real and I’ve felt them. I just want you to know I understand. Love you. Sometimes its okay to be sad about all of this some times. It’s not okay to get stuck there.

    Reply

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