I'd like to welcome you to the International Scleroderma Network. Although I usually keep a low profile online, I work very hard behind the scenes to keep the ISN running smoothly.
Shelley and I have always enjoyed collaborating on projects, and I believe that our team spirit and enthusiasm has just naturally spilled over into every aspect of the ISN.
I'm a retired independent courier driver. Over the years I drove pop truck, forklift, school bus, tour bus, limousine, and cabs. Always on the go and eager to be around people, I also work part-time as a greeter at a Panera Bread restaurant in Edina, Minnesota, and I appear in television ads for Corner Medical Supply, modeling OxyView glasses (eye glasses that also deliver oxygen) and sleep apnea units. I also appear in online promotional videos for Nonin oximeters.
I have severe COPD (asthma and emphysema) caused by alpha-1 antitrypsin deficiency (A1A). People with A1A tend to get severe emphysema and sometimes liver disease. I am on 5 liters of oxygen. I have been listed for a lung transplant since June 2004, but I have chosen to be inactive on the list because I am holding my own, for the time being.
I also have dyxlexia, so I didn't really learn how to read until after Shelley and I were married. I have since read nearly every self-help positive thinking book on the market and met many motivational speakers such as Zig Ziglar, Norman Vincent Peale and his wife Ruth, and Cavett Roberts. I am a past member of Toastmasters International, which I highly recommend to anyone who wants to overcome their fear of public speaking or improve their speeches. Now that I'm retired, so to speak, I've switched to reading purely for enjoyment and am an avid mystery reader.
Although many people might find it devastating or depressing for both partners to have serious illnesses, we consider it to be an enormous blessing. For one, we both understand the importance of pacing ourselves and we sprinkle ample rest breaks throughout the day. We both have trouble feeling sorry for ourselves for very long, when we consider what our spouse is going through. We each devote ourselves to drastically simplying life to reduce stress and to allow time for things that really matter.
I spent five years with a chosen "inactive" status on the UNOS lung transplant list. My lung function worsened so that now I am on 6 liters of oxygen at rest and 8 or more with activity. So on July 16, 2009, my transplant listing was (re)activated. In August 2009, I was called as a matching donor lung was found, however, in the end the surgeon rejected the donor lung. So I am eagerly awaiting another match.
On January 7, 2010, I had a successful single-lung transplant. I was off oxygen completely within a few days of surgery! I am making an excellent recovery, despite various issues, including series of infections. I was out of the hospital in just eight days. Within a short while I was able to work on ISN projects again, and at five months I returned to my part-time job as a Panera restaurant greeter.
Gene peacefully passed away in February 2014 from leukemia, with his wife Shelley by his side in a room with soft lighting, warm blankets, inspirational music, and the sharing of many happy memories and prayers.
We thoroughly enjoyed every moment of his four bonus years thanks to his lung transplant!
His greatest legacy to family and friends was his amazing happiness which he so generously shared with others, as well as his enthusiastic and abiding work on behalf of those affected by scleroderma, throughout the world.
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
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