In 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.
Survivor Stories, In Memory
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.
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