My best friend, Jean

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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