OUR JOURNEYS

Patient story

Clarissa Newman

Beginning in 1993 I was treated for asthma in Germany. After a bunch of test and half year later they found out what was wrong with me.

It wasn't asthma, I had PPH.

I was told not to carry anything heavy and to slow down, they never told me and my parents what I really had.

In late 1993 I met my husband in Germany while he was stationed there (military). After dating for 4 months he asked me to marry him and I thought about my illness so I explained to him that I can't do a whole lot and can't have any children he didn't care about that, he still wanted to marry me - so in September 2nd 1994 we got married in Germany. And in December of 1994 I came to the United States and have been here ever since.

Well in 1996 I got really sick and I was in the ER almost every day. It was a hard time for us I thought my husband would leave me (who wants to bother with a sick person?), but he stood by my side.

In February 1997 they put me on Flolan in San Antonio TX. Being in the military, we moved a lot so they sent us to Kansas after living there for a couple of months I got pneumonia they increased my Flolan and put me on antibiotics, IV, inhaler etc.

After 2 weeks they sent me home. I still had to take antibiotics and inhaler.

I was home for a month when it started again - I was on 5 liters of oxygen and still couldn't breathe. My left lung collapsed, so the ambulance drove me to Kansas City. My husband was driving behind them. As I arrived at the hospital, they decided to put me on the breathing machine but they had to have the consent from my husband and he still was on the road after 2 hours he arrived at the hospital they got their consent from him and they cleaned my lung out as well as they could and put me on the breathing machine. They told my husband that I might not make it. After 4 days I woke up and complained about being hungry so they took the tube out and I could start eating just fluid so I still couldn't eat real food but I could eat popsicles. I had to stay another month in the hospital till they released me. I was on 12 bottles of Flolan 1.5.

We moved to Louisiana and I met Dr. Deboisblanc in New Orleans LSU. He couldn't believe that I was on 12 bottle of Flolan, so he slowly decreased the Flolan. After 4 years in Louisiana he took me off Flolan. I had been on Flolan for 7 years, but now I just had to take the Tracleer and the Viagra.

My husband got orders to move again to Colorado Springs - bad idea, after a year I’m back on Flolan and oxygen.

So now I have to mix my med. Again, that sucks. But the good news is we are going back to Louisiana in January 2008 and hopefully God will give me another chance to get off the Flolan again.

Don't give up there is always a Miracle. Maybe one Day you'll be the one who gets off Flolan. Just believe in it and it will happen.

Sincerely,
Clarissa

If you like to write me my E-mail is: clarissanewman@hotmail.com Looking forward talking to you

 

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