Kathy’s son Nathan has received treatment for hemophilia at Puget Sound Blood Center since he was an infant. She shares her experiences with this bleeding disorder.
Can you tell me a little about Nathan?
My son is a miracle child! I was a single mom from about the time he was born, and he’s made me grow up. He’s now 29 years old.
He went to Central in Ellensburg and loves to be physical. He wrestled in high school and played baseball. He works out, drinks protein drinks, and is very health conscious – actually, he’s about 80% health conscious. He eats his ice cream and stuff too.
Nathan’s a huge (and I mean HUGE) Seahawks fan! Our family knows not to bother Nathan on game day; Nathan is really funny about his Seahawks.
A lot of people don’t know he’s a hemophiliac; he doesn’t want them to think he’s weak and ask questions like, “Aren’t you afraid of AIDS?” He gets tired of questions. People think he’s going to get cut and blood is just going to rush out of him. People ask him why he doesn’t go on disability, but he wants to work [for the Des Moines water sewer district].
How was he diagnosed?
At birth, I didn’t know he was a hemophiliac. He was circumcised and rushed that night to the hospital.
In those days, he was the youngest hemophiliac to have a Port-A-Cath. He used to tell the kids at school that he had a gunshot wound and they couldn’t get the bullet out, that the Port-A-Cath lump was a bullet.
How did you hear about Puget Sound Blood Center?
[PSBC] picked up on me when Nathan was circumcised. They came and started talking to me about what hemophilia was. I was so devastated that I even went to the 700 club asking what I could do! Many times, the Puget Sound Blood ladies came to our house after hours, and many times I cried on their shoulders, them standing around and finding a vein on him in the bathtub and hanging a “drip drip” bag from the curtain rod.
What obstacles has PSBC helped you through?
It’s been the training and guidance. They trained me on flushing his Port-A-Cath. They gathered all my supplies when I was doing it at home – made sure that I had the heparin, the needles, and cleaning kit. They took care of me. Otherwise I wouldn’t have known what to order.
I’ve learned a lot – I have no medical background. When I was young, I even gave him pepto bismol and learned the hard way that pepto bismol has aspirin [which prevents blood from clotting] in it!
Can you tell me about any memorable bleeds?
One time I went to a baby shower and I left Nathan with a girlfriend who had two boys and she called me hysterically crying because Nathan was bleeding hard and didn’t know what to do because he was hurting so bad. She had him in the hot tub to soothe him, and hot tubs make your blood rush faster.
He’d be going to baseball, and we’d hide in the parking lot and he’d infuse in the parking lot before the game. He’s got a wonderful group of friends as far as support. I remember one time going to a baseball game when he was 14 and having to carry him because he had a bleed and he couldn’t walk. I used to carry an ice chest with dry ice for blood products and one time I went to lift it out and half the seat came with it.
What has Nate been able to do because of treatment?
He really, really wanted to play football. Every single one of his friends were football players, and that hurt him. In his last year, he did make the football team, but he never actually played a game because he knew he couldn’t. But he did it just to know that he could do it, that he could make the team and he was satisfied with that.
What advice do you have for moms who might be new to living with their child’s hemophilia?
It was really hard for me to accept, but – I hate to say just let him go and be – but it works itself out. It was harder on me than it was for him; I learned a lot from him in just taking it as it comes. It hurts, but seeing him interact with his friends and stuff – it just fell into place. Let him be a kid. I always told myself I wouldn’t hold him back from anything (except football) but I tried to do it nonchalantly. I treat him like I treat my other child.