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Sunday, February 10, 2008

Don't Quit Your Day Job

I had a nice visit this week from a young man with hemophilia named Tom. Not my son, another nice young man named Tom. I have determined that this Tom, age 26, is the person with hemophilia who now lives closest to me. Even my own son doesn't live with me anymore, so he can be a substitute.

Anyway, the way we met was strange. Last September I decided to rip up the carpet in my basement, which was in dire need of extermination, after years of pets and children had taken their toll. I hired a local flooring company to place lovely tiles that are immune to regurgitated dog food and ground up Doritos. One of the three young men tiling my floor asked me, "Does your son have hemophilia? Because I do." He had seen photos on my basement walls of me with Paul Newman at Camp Hole in the Wall (oh yeah, can't miss that photo), and put two and two together. Here he was, on his knees all day, using really sharp cutting tools to tear up the carpet! We talked for a long time, and I sent him away with all kinds of books and newsletters, and told him to contact me if he ever needed anything. He only lives about three miles away.

So this week Tom did stop by. He quit his job. Tom, Tom! What were you thinking, I wailed, as if he were my own son. Now he has no insurance and no way to pay for factor. No unemployment checks, nothing. Tom also didn't know what to do. He had never really been connected to the community, even though, as I learned, he and my son Tommy had the same nurse as children.

My first thought was, don't get any more factor sent you from your home care company. If his rep decides to send a quick shipment and does not check in first... Tom could be stuck with a bill he could never afford. Did he contact his home care company immediately to stop any more shipments? No. I made him promise to call that afternoon, so he will not accidentally get stuck with a big shipment that would eventually ruin his credit rating.

Did he tell his HTC? No. That would be his next call. Does he know what product he uses? Yes. And thankfully, his home care company enrolled him in a coupon program, so he has lots of coupons. Cash them in! He should get some free factor.

After talking, Tom saw his error. A person with hemophilia if at all possible should never just quit their job. So much preparation needs to be done first. At least we have lots of help in this community. From ACCESS to PSI to the Hemophilia Hotline, Tom has many resources to contact for advise and help. And as he walked out the door (I couldn't tell if he was happy or sorry he came), I handed him this issue of PEN--"What To Do When You Lose Your Insurance." The forlorn young man on the front could have been him.

Guys with hemophilia--don't quit your day job. Tough it out for the sake of your health. Or I am coming to lecture you, too.

2 comments :

Kerry said...

Hi Laurie!
I loved your blog about Tom! I am going to make Paul (18 yrs) and Nate (17 yrs) both read it. In fact I'm going to print it out so I can wave it in front of them whenever I need to!!!!
Thanks for everything,
Kerry Fatula

Anonymous said...

HI, LAURIE....I HAVE 2 SONS WITH HEOPHILIA- ONE MILD AND ONE SEVERE. THE ONE WHO IS SEVERE IS ON PROPHY 3X A WEEK. WE HAVE BEEN DEALING WITH THIS FOR 13 YEARS AND I AM AMAZED AT HOW LITTLE INFO IS STILL OUT THERE CONCERNING THIS DISORDER. I AM CONSTANTLY MEETING NEW PEOPLE THRU EVENTS THAT HFI SPONSORS, SO I KNOW THERE ARE MORE OF US OUT THERE. I HAVE READ SOME OF YOUR BOOK- RAISING A SON WITH HEMOPHILIA- AND I JUST WANT TO SAY KEEP GETTING THE WORD OUT. THANK YOU FOR YOUR EFFORTS!
ALICIA MORADO- IL

 
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