OUR JOURNEYS

Patient story

Debbie Rainwater

"I know God only gives us as much as we can handle and my son asks me why God gave me PH. I tell him I am not sure but if he hadn't, I would not have met all the wonderful people I have and that he wants me to get awareness about PH out to the community."

In July 2011, I started getting a cough that just wouldn't go away. I just kept taking cough drops hoping it would go away. Over the next couple of months, my breathing was getting bad. I couldn't even walk from the bedroom to the bathroom without being out of breath. I started falling asleep at work and was getting really bloated. I thought it would just go away.

On Halloween night my mom said something to me that made me go to the doctor the next day. She said that my husband and adult son would be devastated if I died but would be able to handle it, but what would my 12 year old do without his mother? I went and saw a physician’s assistant and gave her all my symptoms. She had me get a chest x-ray, gave me an antibiotic and told me to make an appointment to see her the next week. So I did all those things and went home. The following Monday, I just couldn't get out of bed. I called in sick to work and went back to sleep. My husband kept calling me from work asking if I had gone to Urgent Care. I said I was going to. Well, he got scared, called my mom and had her come over to my house to take me to Urgent Care. I saw a doctor this time and she had me do another chest x-ray. I waited in the exam room for her and when she came in she told me she was sending me straight to the hospital.

I went to my local emergency room and was admitted into the ICU. I had many tests done and no one could figure out what was wrong. The next day, they put me in a regular room and so I thought I would go home in a couple of days. The next day, my husband came in to see me and could not wake me up. He went and got the nurses and they could not wake me up either. They put me back in ICU. I was put on a ventilator and sedated. After 3 days, the doctors at my local hospital could not figure out what was wrong so they transferred me to a hospital an hour a way that had more advanced equipment and knowledge. I was transferred to a pulmonologist. He did lots of tests and finally he did a right heart catheterization and determined that I had pulmonary hypertension. Dr. Jeffrey Sager is my angel. I stayed 10 more days in intensive care and then was sent home on oxygen and a BiPAP machine. My body has a hard time getting rid of the CO2 and the levels were off the charts which is why I was unable to be woken up. I was also diagnosed with diabetes in the hospital.

"I will never say I am glad I got PH but I am happy I have met wonderful people on my journey that has just started."

I now take 8 different medications. I am able to work and exercise. I have changed my whole life. I watch what I eat and I work out at the gym 3 times a week. Although I do get frustrated at times because I don't always feel good, I know I have come a long way and I have all my doctors and nurses to thank. I try not to always think about having a disease with no cure because it makes me sad and scared. I get worried about it getting worse and what will happen when it doesn’t. I try to focus on the positive. I have lost 110 pounds and am looking forward to losing more.

For me, PH is hereditary. My father has it, his parents had it, and my mom's sister has it. Next month, August 18, 2012, I will be participating in a 5K walk to raise money for research to find a cure for PH. I am so excited that I am able to actually do the walk. I am looking forward to attending the next PH conference. I know God only gives us as much as we can handle and my son asks me why God gave me PH. I tell him I am not sure but if he hadn't, I would not have met all the wonderful people I have and that he wants me to get awareness about PH out to the community. I attend a local support group every 3 months and I get to talk to others who have PH and how they are dealing with it. It helps me a lot. I will never say I am glad I got PH but I am happy I have met wonderful people on my journey that has just started.

 

FacebookGoogle +TwitterLinkedInPinterestInstagramYouTubeBloggerFeedsPHAware Download our App

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

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.