Home Infusion: A Hole in One
As our son Vohn grew up, he wanted to get involved in all kinds of sports. While
my husband and I allowed Vohn to participate, we were very particular about
which sports he should play. Golf was the first sport he pursued. Later, we let
him play basketball, believing it would be a safe sport for him. As it turns
out, he got hurt anyway!
While playing basketball at about 8 years old, Vohn developed a recurring bleed
in his ring finger that lasted more than six months. When the bleed still
wasn’t healing, we had to make him stop playing. We had to go to the emergency
room or the outpatient infusion clinic almost every day so that he could get
treatment. This was not only inconvenient, but very traumatic for Vohn.
When Vohn’s finger finally healed, we realized that if we had known how to
self-infuse, Vohn wouldn’t have gone through his bleed for so long and wouldn’t
have suffered so much. That was the point at which I told myself, “I really
need to learn how to home-infuse to make it better for Vohn.” I won’t deny that
learning to infuse was very difficult and scary at first. The first time I
tried to infuse Vohn, I couldn’t find his vein and had to stick him several
times; we were both crying. It continued like that for a few months until I
perfected the process. Eventually, I became comfortable to the extent that I
would rather give him the infusion myself than allow someone else to infuse
him.
Vohn’s first experience with self-infusion took place when he was about 10 years
of age. We had gone to the hemophilia treatment center (HTC) for an infusion
and were speaking with Vohn’s nurse, Richard, who’s always so wonderful and
caring. Vohn trusts Richard because he’s so sensitive of Vohn’s feelings. He
will not do anything unless Vohn is comfortable with it. He also explains the
procedure and educates us all the time. In short, Richard is just very helpful.
One day, shortly after Vohn had won the CSL Behring Junior National Championship
in golf (part of the Gettin’ in the GameSM program), he went to the
HTC for an infusion. Richard said, “Vohn, maybe it’s time for you to start
learning how to infuse yourself.” Vohn didn’t say anything at first. Then
Richard said, “Well, why don’t we do it this way? Relax, close your eyes. Maybe
you can imagine that you’re in the 11th hole, or teeing off, or something to do
with playing golf. Then do the shot.” And Vohn did. He associated the infusion
with golf—with something that he enjoys doing—and that’s when he first had the
courage to self-infuse. Even after that, of course, Mom still took over. He was
supposed to infuse by himself when we were home, but I still felt more
comfortable doing it for him.
Later, Vohn attended hemophilia camp for the first time. For a long while we
didn’t allow him to go, because we feared that something would happen to him.
But it turned out well, and that’s when he really learned how to do the
infusion himself with very little supervision. That really built his confidence
and since then, Vohn has been doing his shots just by himself.
Now that Vohn knows how to self-infuse, it means more independence for both of
us. I don’t have to worry when he travels, as long as he has his medicine with
him. I feel that nothing is going to happen to him as long as he maintains treatment.
Moving the infusions to our home made things less complicated.
Every day is a normal day now, even though we’re still living with hemophilia.
The infusions have become part of Vohn’s routine and we’re living our lives
without tremendous interruption, like families without hemophilia.
