SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Catherine S: Surviving Daughter of Pulmonary Fibrosis Patient

I miss my mother every day.

I Love You, Photography by Shelley EnszIn the end of April my mother did not feel so well and asked the GP to come. He diagnosed pneumonia.

My mother felt so bad she asked him to send her to a hospital. Her legs were swollen and she could not take care of herself, so she said. He refused and gave her antibiotics. They did not work.

The following weekend my mother rang again, but there was a stand-in GP, who refused to come, though the antibiotics did not work for a week now. My mother had strange skin and fingernails now.

After the weekend her own GP sent her to the hospital, because she insisted. There they did not let her leave and started the same antibiotics. Nothing worked. When we had still two hours to go for the last cocktail, my sister and I decided with my mom to get her to a university-hospital, instead of this local one. We had to take responsibility for the journey, because the "local" lung specialist was certain she could "fix" my mom in several days, even though every medicine failed and she had been running a high fever for 14 days. An ambulance drove my mom to the city. In several hours we had a diagnosis: lung fibrosis.

Four weeks ago my mother biked 50 KS in the woods. Next day she was so much without air, they put her on the breathing machine, without calling us. This was very bad because my mom had said she needed to talk important things over with us. It was a misunderstanding, they could have waited, so we were told. The doctor on duty thought it was not that bad with my mother.

We never spoke to each other again, though she tried sometimes, when she was on the surface. But being on the surface made her panic. The doctors even tried to breathe her with nitrogen and gave her chemotherapy (endoxan). After twenty days we had it stopped. Her whole body was healthy, except the lungs. She choked in five minutes. We allowed no resuscitation and took her home.

We feel terrible. Our father lives near Russia (for work and his newlywed wife) and does not support us. We arranged everything, including the funeral and the emptying of the parental home.

It's been nearly nine months ago now. I miss my mother every day.

I have two little girls. Is this disease genetic? Was it scleroderma? For as far as I know, nobody can tell me.

I wish everybody good, good health and a strong mind. Thanks for letting me share this story.

To Contact the Author

Catherine S.
Posted 2-15-2000
LINKS
Pulmonary Fibrosis
Survivor Stories, In Memory
Go to Cathy: Probable CREST Scleroderma
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Jim Miller, Arlene Marie Petulla, Frances Maude Baldwin Watson and Rubye Mai Blocker Westmoreland.
Thanks to Winn Schillberg for donating to scleroderma research.
Donate or Shop Now
 

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

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. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.