wait until someone comes in so they can tell him. Maybe it IS
just the flu. Should I google creatinine levels of 19.0? Wait, is
this really room 9?
On March 29, 2014 my fiancé Paul was diagnosed with renal
failure, at age 42. He was to begin dialysis immediately in
order to save his life. He would need a temporary port in his
chest as access for the dialysis but would soon undergo a
procedure to create a fistula in his upper arm for long-term
care. He would visit a dialysis clinic three times a week for 4
hours in order to stay alive. This is what needed to be done to
stay alive. Stay alive. That’s all we needed right? To stay alive?
Well, of course. This is the only way, in center dialysis. At least
that is what we thought.
Paul traveled “in center” with other individuals on dialysis
three times a week for four hours for two years. He worked
full-time and tried to maintain his happy life of traveling,
spending time with family and friends, and getting married,
to me. Paul was lucky to be alive. Despite the way in center
treatments made him feel, we were lucky they said. Lucky
to be alive. Despite the way Paul could not travel as he once
did because of the harsh treatments, we were lucky. Lucky to
be alive they said. Despite leaving early and missing out on
some family functions, social gatherings, and date nights due
to fatigue and low blood pressure, we were lucky. Lucky to be
alive they said. But, selfishly I thought, couldn’t we be luckier?
Two and half years after Paul was diagnosed with end stage
renal failure, we answered our own question. Yes, maybe we
could be luckier. It just required some research, self-advocacy,
and persistence. While we were happy that Paul was alive and
grateful for in center dialysis, we soon learned the modality
of Home Hemodialysis. We learned about the modality out
of sheer curiosity. It may have been introduced in passing at
the start of our scare, but it was never introduced as a viable
option until 2.5 years later when we discovered it through our
own research. Home hemodialysis is not for everyone. But, it
is certainly an option that needs to be explored and discussed
between patient, family, and medical team. An option that
should be provided so that patient and family can make the
final decision, not someone else on behalf of them. This was
an option that we didn’t really know much about from the
start. We connected with NxStage Kidney Care near our home
to learn more about the modality and soon began training to
do hemodialysis, at home. Why not try to feel better? That
was our motto. If it doesn’t work, Paul can go back in center.
But, what if it does work?
I won’t lie, it was absolutely terrifying at first. Sometimes,
it can still be for me as his partner. But, “going home” has
significantly changed our lives for the better. Paul has never
felt better since that terrifying night in the emergency room.
We dialyze five times a week in our home and control our own
schedule. Paul’s blood pressure is no longer a key concern for
his illness. When I need to be away from home, Paul can visit
in clinic and still receive the home hemodialysis care he needs
without going back in center. Home hemodialysis requires
patience, commitment, and dedication. There are times when
I am exhausted from a long day and think about how I can
possibly help dialyze for the next 3.5 hours. But, then I see the
difference in my husband. He may still face the challenges of
kidney failure but I can honestly say I have him back in my life.
And, more importantly, he has full control of his own.
With proper planning and coordination, traveling on home
hemodialysis is just as possible as in center dialysis. Paul
and I have noticed a huge difference in how he feels while
traveling. When he was going in center, he would need
at least one day to recover from each treatment and was
subject to dialyzing during times that were required in center.
Often times this was 6:00 a.m. treatments, on vacation.
With home hemodialysis we can treat right before bedtime
and he still feels great! Since starting home hemodialysis we
have traveled to Myrtle Beach, Hawaii, and Captiva Island, FL
all while bringing our machine and medical supplies. Again,
home hemodialysis is not for everyone, but shouldn’t you
find out if it is right for you before dismissing it? You are
certainly worth it.
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