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Sally is sharing her story of hope and resilience as part of our “Thriving with LAM” series for Worldwide LAM Awareness Month 2020. Lymphangioleiomyomatosis (LAM) is a rare lung disease without a cure.
Sally was diagnosed in 1981. We’re grateful to her for telling her story and offering her advice for living and thriving with LAM.
I originally started having issues in 1975. I had a bronchoscopy which showed the LAM but the doctor didn’t know it. I had a lung biopsy in 1981 because of symptoms flaring up.
I again showed symptoms, but there was again no diagnosis. I was given Depo Provera shots (the only thing given at the time). After being on it for so long, I decided to stop the shots and then menopause kicked in.
In 1985, I was seeing a pulmonary doctor at Kaiser. One visit, he came in the room and said “you have lymphangioleiomyomatosis and you’ll need a transplant in your 50s” and then walked out.
I did my research at Case Western Reserve Library here in Cleveland. After I read the reports on TSC and LAM, I went outside on the steps and cried. But after a few minutes, I realized that I had beaten the odds on a LAM death sentence (this was back when life expectancy was 10 years to live). I was going on 10 years with symptoms so I was ok.
TSC was a reality check. I should be mentally incapacitated but there I was, 31, and doing quite well. I had found out I had TSC at 21 years old and 6 months pregnant. I had not known it would come back in relation to LAM.
Life went on.
I finally saw my first LAM doctor, Paul Lange at University Hospitals. I now follow up at the Cleveland Clinic, first with Jeff Chapman and now Joseph Parambil.
With the treatment of sirolimus (the only approved treatment for LAM), I have chosen not to get a transplant, although I did go through the transplant process. The best thing ever that happened was the MILES trial and sirolimus. It saved my life.
I don’t dwell on it. It’s been 39 years since my diagnosis. I’m 68 years old and I have had a great life. I have a son, Chris, who is 46. I work out and do what I want to do since retiring in 2011.
Don’t sweat the small stuff. Go live your life. Do what you want.
My name is Sally Nagel, 68, born in Texas; wound up in Ohio 40 years ago where I decided to stay after a divorce from an abusive marriage. I have two older sisters, Julianne and Deborah, where one lives in New Mexico, the other one in Texas. My son, Chris, is 46.