Our Journeys

PHAmerica Honors Essays

Neeta Pai

"How do I manage my daily life still without knowing what it will be like until I wake up that morning? I could be faced with a possible severe gushing nose bleed that may or may not stop with homemade packing. Sometimes, if the bleeding is bad, I might need an emergency room (ER) visit and rest to stop the hemorrhage. Other times I may feel tired, fatigued, short of breath from IPAH, unable to do anything or I may just feel less than enthusiastic to have a full day with a less than cooperative body."

- Neeta Pai

Which is worse: no diagnosis or no treatment? How do I deal with it? One must ask a pulmonary arterial hypertension patient this question! We have all gone through a major obstacle course to finally get a diagnosis, just before entering or after having entered the final stage of pulmonary hypertension. Believe me when I say you are amongst a very fortunate and elite few if you were diagnosed when your mean pulmonary arterial pressure was still low.

Next comes the treatment part. What are the options or perhaps I should ask what were the options from when I was diagnosed in the 21st century, 2004 to be exact? "An oral pill named Tracleer that may not work for you. Or you could go on an elaborate 24/7 intravenous (IV) hook up system named Flolan that you, yourself, maintain." Well, what do you know? I opted for the last one along with the oral pill. It took more than 12 weeks to receive, thanks to the insurance hoops, loopholes in the specialty pharmacy protocol and a busy New York City nurse. "Yaay! I am still alive and doing better, thanks to the family and friends that cared."

That was my first sigh of relief! It will be exactly seven years since my diagnosis of idiopathic pulmonary arterial hypertension (IPAH) on September 16th. I still struggle with the same thought of which is worse: no diagnosis or no treatment available. Even after seven years, I am still recognized as the third patient in the nation to have two rare disease combination with no cure – IPAH and acquired Von Willenbrand's - insufficient factor VIII – a form of hemophilia, which is a clotting disorder. Recent additions to these two have been a deviation of hereditary hemorrhagic telangiectasia (HHT) with arteriovenous malformations (AVMs) in the liver and possible telangiectasia in the nostrils.

How do I manage my daily life still without knowing what it will be like until I wake up that morning? I could be faced with a possible severe gushing nose bleed that may or may not stop with homemade packing. Sometimes, if the bleeding is bad, I might need an emergency room (ER) visit and rest to stop the hemorrhage. Other times I may feel tired, fatigued, short of breath from IPAH, unable to do anything or I may just feel less than enthusiastic to have a full day with a less than cooperative body.

I count my blessings. First, I realize upon awakening that I am alive to enjoy another beautiful day – it does not matter if it is sunny, rainy or snowy. I can breathe through my nostrils and not just my mouth! (if I have to breathe through my mouth, I count my blessings that am even able to breathe). I offer my gratitude for a roof over my head, all our needs met without any debts. I also offer my thanks to my great hubby who balances our check book well and prioritizes our needs from wants. We are independent, thanks to Blue Cross/Blue Shield who pays for all my medical care and caring physicians at Mayo clinic. I'm thankful to the awesome benefits from the jobs we both held at Coca-Cola. I offer my gratitude for my loving, dearest husband, who has stood by me like a rock of strength and courage, a pillar of positivity. I also am grateful for our children, who are available at our beck and call.

Now, I am ready to offer my gratitude to my higher power (call it what you may) to be able to pray for the wellness and happiness of all the people on this earth and in other worlds.

I continue my prayers asking that formless God of the Universe to bless me with the courage and guidance to deal with whatever that I may have to face today and to fight to finish the day with a happy smile! Eventually, happiness lies within you and your own self. As Charles R. Swindoll puts it so
appropriately, "Life is 10% what happens to you and 90% how you react to it." "Samasta Loka Sukhino Bhavantu" is a Sanskrit prayer meaning: Let the whole Universe be happy!

Afterthought:

The best thing that happened to me was my option of having chosen not to go on IV Flolan treatment, despite a lot of pressure from my caring physicians who then, did not know of my clotting disorder. Now, we know had I been on IV Flolan, I wouldn't be here to tell my story today! Its all God's Grace :-)

 

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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.