My best friend, Jean
By Bill March
It's
hard now to imagine our life before PH, although it was only an issue
for 3 1/2 years of our twenty-year marriage. The first ten years were
spent on a beautiful lake in central Pennsylvania with our St Bernard,
Heidi and my daughter from a previous marriage, Amy. Jean knew that
she could never replace the 9-year-old’s mother, so she and Amy
became the best of friends.
After Amy left
for college, Jean and I decided to move to Florida. We just sold
everything and headed south. This was not like her because security
was very important to her, but she adapted well. We spent the first
six years exploring Tampa Bay by boat. We both loved to be on the
water. After Heidi died, I really missed my St. Bernard. At every
holiday, when Jean would ask what I wanted as a gift. I always said
another St. Bernard, only half seriously. Well, for my birthday,
there was a St Bernard in an Easter basket at our front door; the
pup had been shipped all the way from Pennsylvania. Hannah, the
newest member of our family, became Jean's nurse and a source of
great comfort to her in the later stages of the PH. (After three
months, Hannah still has not gotten over the loss of MOM.)
Jean and I had
a marriage that most people can only wish for. Most Importantly,
we were best friends, and that was very important to both of us.
When she was diagnosed with PH, our friendship sustained us through
all of the ordeals. On more than one occasion Jean asked me why
I continued to put up with all of her problems, and I would promptly
remind her, "in sickness and health, for better or worse”.
After receiving
the diagnosis, Jean wasted no time in finding the local support
group; in short order, she became the group leader. Her focus became
very clear - PH advocacy, the ladies bible study group and strengthening
our already strong relationship. Oh, and fighting with the health
insurance companies!
As the time
passed, Jean became increasingly weaker, not so much from the PH
but from all of the other illnesses that she contracted. In no particular
order, they consisted of: two viral lung infections, a frozen shoulder,
abscessed tooth, hyperthyroidism and shingles. And that was only
in 2001. While PH was listed as the cause of death, Jean really
died because her body just wore out from fighting all of the ailments
that she contracted. After every illness, you could look at her
and see it had taken something from her.
Many times,
Jean was referred to as an “angel”, often from people
who had only met her once. There was something special about her.
She had this knack of making people feel comfortable around her.
There were no bad people, in her mind. And when anyone asked how
she was feeling, she always said " I feel pretty good. I am
getting a little better." I was the only person who (I thought)
knew how sick she was, and even then I had to ask very direct questions.
She would never come right out and say the words, I am sick.
But probably
the best example of Jean's character is best reflected in how she
handled herself in the final months. I found out from a very close
friend of hers later that Jean knew she was dying in November of
2001, two months before her death. Even then, her only concern was
not for herself, but for me. She was not going to tell me that she
was dying because she did not want to hurt me. Not only that, but
she made this person she had confided in, promise to take care of
me after she was gone. (I still receive a daily phone call from
her.)
Jean passed
gracefully and peacefully in January. About a week prior she said,
" God has told me that he is ready for me now. God also told
me that he has plans for you, but I don't know what they are. You
will find out in time." A few days later I said goodnight to
her for the last time while she was in the hospital. She said she
felt tired and wanted to go to sleep. I believe that she knew at
that point that she would not wake up, but again, would not say
anything to me because she did not want me to worry.
And that was
Jean - always thinking of others before herself! The last time I
saw Jean, she was rising to the Heavens. She was the biggest, brightest
star I have ever seen. That star hung in the sky from 2:30 A.M.
until dawn without changing position . I believe that Jean has received
her reward for being one of the very good people in this world.
The Plight of the
Caregiver
By Jean March
It is devastating
to be diagnosed with Pulmonary Hypertension. It changes our lives.
We live with constant reminders of the disease. But, I believe the
plight of the Caregiver is much worse. When I am sick, I go to the
hospital and someone takes care of me. I feel bad but medication
helps.
When I am sick,
my husband comes to the hospital also. He worries about me. He makes
sure I am receiving the best of care. He brings me whatever I need
and helps me mix the Flolan. He follows the nurse to the refrigerator
to make sure she places the ice packs in the freezer and the cassettes
in the refrigerator and not vice versa. He calls me several times
a day to make sure I am OK. If I have a procedure, he is there waiting
for me when I return to my room. He visits every day. He loves me.
He also has
to go to work and take care of everything at home. He has to explain
to the dog that not only has she been alone all day long but now
he’s too tired to spend much time with her. If he has any time
left, he takes care of himself.
PH affects the
Caregiver more than anyone can realize. They live in constant awareness
that their loved one may become ill or need their help. They make
important decisions based upon what the doctors think may happen.
They live their lives under a tremendous amount of PH stress.
Perhaps those
researchers can come up with a much needed cure for the PH Caregiver.
Perhaps this cure should help them sleep better, give them more
hours in the day and help them worry less. Perhaps it can give them
wisdom to make important decisions based upon supreme knowledge
of what this disease will do with their loved one.
To all the
caregivers out there, we salute you!
Footnote by Bill March
I believe that
God's plan for me is for me to continue Jean's work with the PH
community. I have agreed to continue as the support group leader
in Tampa Bay and have created a not-for-profit foundation in Jean's
honor. It is called, "The Jean March Memorial PH Caregivers
Foundation, Inc." Our hope is to create a fund of $10 million
to be used to provide support to PH patients and their caregivers.
For further information on the foundation and how you can help,
my e-mail address is wmarch@tampabay.rr.com.
May 1, 2002
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