Wednesday, March 26, 2008

Hemophilia Sucks

Today #1 said "I hate hemophilia".

I had to agree, it sucks.

He couldn't find a vein for his infusion and had to call me upstairs to help him. It's not really a huge deal. He had already stuck himself with the needle, but knew that he wasn't in the vein. When he called me, he still had the vein in his elbow and asked me if I could try to make it work. No go.

So, I asked him where he wanted me to stick him and he pointed to his wrist...I don't know why he picks that one, it's a painful place to stick a needle. But he's got a nice plump vein there, so I did. And it hurt. And I had to dig for the vein a little.

The last time he did his infusion, he didn't call me. But he'd tried to stick himself three times and couldn't get it. He came downstairs with tears in his eyes and I felt so bad for him! I asked him why he didn't call for me sooner...I could've helped.

That time he asked me to try sticking him in his hand. Sheesh. I'm terrible with hand veins, but thank goodness I got it on the first try.

He's got 3 good veins that he'll try and he's very reluctant to let me try any new ones. Today he was just very overwhelmed with the whole thing and told me that he really wishes he didn't have hemophilia.

Hemophilia does suck. 9 and 12 year old boys should not have to stick themselves with needles just so they can be "normal boys".

But life goes on and hopefully in 4 days (that's when we do pokes again) #1's favorite vein will be up to the challenge.

I hate that they have this burden at such a young age.

5 comments:

Jennifer said...

Rix,
Wow. I can't even imagine, it's a cliche, but it really is harder to see our kids in pain (be it physical, emotional or mental) than to suffer ourselves.
I have two kids that have, in a way, been spoiled by good health. It makes me ashamed of the way they bitch about their braces, when I know your kids go through so much more.
Jennifer

ElyPerez said...

Rix,

There's a new product on the market called KytoStat. KytoStat is as easy to use as a regular bandaid. Just apply it to the wound and it stops the bleeding. You don’t even need to wipe the blood away. In fact, the blood helps the chitosan in KytoStat to seal the wound.

This bandage is a good product for people with hemophilia to have in case of an emergency. I work for HemCon, the company that makes it, and am glad to answer any questions you have.

Pulley said...

My son still has his port, but I can imagine when we transistion him to peripheral sticks. When did your son learn to stick himself?

BTY Ely - KytoStat works for external bleeds only and please let others know your product contains shellfish! but thanks for the company plug.

Rixblix said...

Hi Pully. Actually, I have two boys with severe hemophilia B. We transitioned them from port to arm pokes at around age 6. They've been infusing themselves since they were 8 (the oldest started at 8) and 7 (the youngest wanted to make sure he was poking younger that the oldest!)

And thanks for pointing out the shellfish thing. I looked it up when the comment was first posted but completely forgot the respond! It's also interesting to note that this same "compound" has been hailed as a weight loss drug.

Maybe I can use it to fix my periods and it'll help me lose some weight??

Here's the wiki link:

http://en.wikipedia.org/wiki/Chitosan

Can you imagine what would happen to a hemo with a shellfish allergy if they tried this product? *shudder*

ElyPerez said...

Rix,

Thanks for pointing that out. Actually, there are no documented cases of chitosan causing allergic reactions. More than 1 million bandages have shipped and there are no reports of negative effects.