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Patient story

Lily McGlone

by her mother, Dianna McGlone

Lily McGloneMy daughter has primary pulmonary hypertension. She was born on March 7, 2009. This is her story.

The first time that pulmonary hypertension was introduced to me, the doctors never actually said those words. The cardiologist basically said that the pressures in Lily's heart were high, and here is some Sildenafil and Furosemide to treat it. She was just a couple months old at the time. This was before she had open-heart surgery.

The second time that pulmonary hypertension was brought up to me, the words the doctor did use were “If the pressures in her heart are too high, we can't do surgery. It will kill her.” Wow. I thought her problem was just a hole in her heart. They ended up having to do the surgery without getting a read of the pressures because her lung collapsed, and she was placed on life-support. It had gone from being a case of “Oh, this is a routine surgery, she'll be fine...” to basically, “Hope for the best, prepare for the worst.”

Six months after surgery, Lily was still on Sildenafil and Furosemide. The pressures in her heart weren't getting any better. It began to be something that the cardiologist mentioned to me at each appointment. At nine months, he told me he was referring her to -- and here came those dreaded words -- a pulmonary hypertension specialist. It still didn't seem like that big of a deal. I had been dealing with so many other problems of Lily's that I didn't do any research. I just faithfully gave Lily her medicines and waited to see what the doctor would say. She started seeing Dr. Daniels. He said that the pressures in her heart were high, but she was active and happy, so why mess with anything just yet.

Three months later, we had another appointment. I believe it was at this one that he talked about doing a heart catheterization and the possibility of stronger medicines. He talked about continuous infusion and suddenly I went from not really worrying about her 'high blood pressure' to being absolutely petrified. What WAS pulmonary hypertension? I did research until I nearly broke the keyboard. I read medical journals, hospital sites, anything that looked reputable. I found the PHA website. I went into the chat rooms. I told them I felt like it was a death sentence for my daughter. The patients in the chat rooms reassured me they were still alive and kicking, so it wasn't a death sentence.

On Nov 5, 2010, Lily had the heart catheterization. The doctor explained it this way: “You have your regular blood pressure, and then you have your pulmonary blood pressure. The pulmonary blood pressure measures how hard your heart has to work to pump blood to your lungs. Your pulmonary pressure should be about a fifth, or 20 percent, of your regular blood pressure. Lily's is 70 percent.” He talked about medications again. He said she reacted well to Nitric Oxide. He thought she'd do well on a medicine called Bosentan. He didn't see the need to go straight to an IV medication.

About two weeks after her heart catheterization, we got the Bosentan in the mail. We have to check in with the company every month. We have to watch Lily for side effects. She has to have liver function tests every month, but she has the medicine. On January 11, 2011 we go for her first appointment since beginning the medication. I can only hope that it’s helping her. We won't really be able to tell until then.

Every day is a struggle. There are good days, and there are bad days. On the bad days, I can barely hold back tears. On the bad days, I grieve. I grieve for the loss of my daughter's normal life. I grieve for the loss of the memories we will never get to make, because this disease will restrict her. On the good days, I make memories. I realize that every single second I have with my daughter is precious in a way that only other parents with a chronically ill child can understand. I slow-dance with her in the living room. I hold her while she has a bottle after I put her oxygen on her at night. I take hundreds of pictures. I love her like there is no tomorrow because I'm acutely aware of the fact that her tomorrows might be very limited.

If I could tell a parent of a child with PH anything, it would be: "Every single day, set out to make a good memory with your child. Hug them. Kiss them. Laugh with them. Strive to give them as much of a normal childhood as possible. Also, remember, you are NOT alone! You have PHriends now!”

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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.