I am a registered nurse, forty-nine years old, who loved being an acute care nurse. In February 2009, while I was working I started to get shortness of breath for a couple of weeks, so I thought my body was telling me it was time to quit smoking.
I called my primary physician told him what was going on so he made an appointment for Monday, March 2, 2009. On Friday, February 27, my day off, I got this bloody nose that would not quit, it was coming out like a faucet. So I went to the ER. The doctors there couldn't stop it, so they put a rocket in my sinus to stop it, did labs, and vital signs and my blood pressure was 210/165. Yeah, can you believe that? They thought I was stroking. Well, they brought my blood pressure (BP) down with a little Ativan, and sent me home.
The next Sunday night the nose started up again, back to the ER, but this time I was given Lobetolol for the elevated BP's and had a chest x-ray, and a CT scan where it was found that I had Interstitial Lung Disease.
On Monday when I went to my primary, he got the ball rolling, sent me to a rheumatologist, blood specialist, pulmonologist and started me on some oxygen at night and had a sleep study done to rule out sleep apnea, did more labs, ruled out many other diseases, but was absolutely great.
It took two months to get in to see the rheumatologist he sent me to at National Jewish Hospital in Denver, Colorado, where I was originally diagnosed with interstitial lung disease and undifferentiated connective tissue disease. During this week long visit to the hospital, I had numerous testing done and during this testing, my shortness of breath increased dramatically, and my heart rate was off the charts. So the doctor called a cardiovascular specialist at University of Colorado Hospital for a consult, and they decided to do a high resolution CT scan to rule out a Pulmonary Embolism. They suspected a PE and referred me for a right heart cath to see what was going on with the pressures. Two weeks later I was diagnosed with severe Pulmonary Hypertension and a PE in my right mid lung. Needless to say, I was working up until this time where I was placed on oxygen 24/7 and my employer told me I could not return to work due to this. I was also started on Coumadin and numerous other medicines. I was not too happy to not be able to return to work. Then my extended illness pay and my sick pay ran out. I was terminated from my job.
Then in November, I woke up one day, and I could not walk to my bathroom, I about passed out, so I called my doctor and he had me come in and sent me directly to the ER and I was in the hospital for fourteen days, I had a diagnosis of Diffuse Alveoli with Hemorrhage, I almost died, but I made it with the help of mass doses of prednisone and other drugs, about fifteen other medications.
The prednisone has made my muscles mush, I have a moon face, I have constant pain in my knees, I can no longer shop in a store unless they have a wheelchair due to my shortness of breath and weakness. I lost my car, home, and my livelihood, but thank goodness I am still alive. I have had to return to the hospital again in February, but I am out now, still short of breath, still with elevated heart rate, and pain but I am alive.
I just want the immuno-suppressant to work, I want to be able to breath, and shop. I still have work to do here on earth and I am going to do it. It is just amazing that I have never been sick in my life and then in a years time, I am where I am. But I do have faith, loving and supportive daughters and family.
I just wanted to give you my story, and I will keep you all posted.
Email: [email protected]
Story edited 04-10-2010 JTD
Story posted 04-13-2010 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Pulmonary Hypertension Stories
Overlap Syndrome Stories
Undifferentiated Connective Tissue Disease (UCTD)
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.