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Caregiver story

Denise VigueDenise Vigue

Pulmonary Hypertension...“What little we know”

Today’s woman has many stresses in her life including balancing career and family. In her care and work for others oftentimes she may neglect her own physical health. Exercise and fitness clubs abound with women rushing from work then rushing home to either cook or care for their families. Even for the single woman taking time out from her busy schedule to workout doesn’t always take priority.

So one day she feels a little breathless climbing the stairs at work. She may think she is simply out of shape, and mentally reminds herself to get back to the gym. Then a few weeks go by and she may experience that same breathless feeling just getting up in the morning.

A trip to the doctor often times leads to a cursory exam. With the usual culprits ruled out like a Thyroid condition, Anemia, Diabetes, a virus or “women’s problems,” she feels better and her doctor tells her to eat a healthier diet, relax a little more and take vitamins.

She may have a cough and think a cold is coming on. With all the symptoms of a cold, she takes it easy, bed rest, fluids, TLC from family and cold remedies. After a few more weeks, she goes to the doctor again. “Some viruses can have you down for weeks,” her doctor tells her, “It’s not uncommon. Take it easy.” So she gets antibiotics and goes back to work.

With that pesky cough hurting her chest she still feels run down and still has that heavy feeling in her chest, so yet another doctor visit. By this time she and her family and the doctor are becoming a bit concerned. A full blood work up and complete physical are done, but nothing out of the ordinary shows up. Finally, the doctor suggests she see a psychiatrist. "Perhaps she has some mental problems that need to be dealt with that may be affecting her health."

Feeling depressed about being so tired, she goes to see the recommended psychiatrist. By this time she also thinks, “Maybe something is wrong with her mind.” Of course, the psychiatrist knows she has gone through a complete physical, so they talk about her feelings. She is definitely depressed. She agrees to an anti-depressant prescription and begins weekly visits to discuss her feelings. She is too tired to work, so she takes some time off.

Then one day at home while attempting with great effort to clean her house, she faints. Her doctor and psychiatrist make joint referrals to a series of specialists-with nothing out of ordinary showing up.

Finally, many months later one specialist says, “I believe you have Pulmonary Hypertension.” Relief at last. She is not crazy and everyone is so happy! So what now? What medicine can she take? More tests are taken. Relief turns to horror and non-comprehension when the doctor confirms the diagnosis and tells her and her family that indeed she has PH. A rare fatal condition with no known cure.

“But I’m only 37!” she cries. “How can this be? No one in my family has such a thing.” “What causes this and why me?” Frustration ensues since the cause is unknown. Dread grips the family when they are told most patients live only a few years after diagnosis.

She goes home with her family and they cry and they cry and prepare for her death-with no where to turn for support or hope. Day after day they watch her as she slowly gets weaker. Her breathing becomes more labored and painful. Although some of the medications give her a little relief, she suffers from extreme leg cramps, muscle weakness, pernicious anemia, syncope, labored breathing, depression and fear.

Two months before her 39th birthday she dies. Her mother still cannot understand why the doctors couldn’t save her.

For my sisters, Dee Dee Topczewski and Valma Borla who both died from Pulmonary Hypertension and Primary Pulmonary Hypertension

Written by Denise J. Vigue,
Volunteer PH Support Group Leader
Green Bay Group - Pulmonary Hypertension Association

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.