Learned to live with Fatigue since childhood

Feb 20, 2018

By: candy

Lethargy was part of my life since a very young child. At the age of 14 was my first menstrual cycle, but continued to have only 2 a year with cramping. At the age of 21 I was diagnosed with Stein Leventhal Syndrome (P.C.O.). I was informed I had a "streak ovary" and a surgical wedge resection was done on the other ovary. I wasn't told until a few years later of the "Infertility problem" and getting pregnant was improbable. As I mentioned, I didn't have much energy and also struggled with low blood sugar, mood swings and depression (that I tried to cover up). Doctors didn't learn of the hypoglycemia or imbalance until I was 19. This part of the story is boring, but contributes I believe to a vicious cycle of ups and downs.
The Birt-Hogg-Dube didn't manifest until the first (left) lung collapse in 1985 (But that time I had been blessed w/twin girls ages 10, and a 7 year old daughter). I experienced 2nd lung collapse (right lung) April 1986 when they did a surgical procedure but it failed. These occurred while living in Las Vegas NV. In June of 1986 I traveled to Salt Lake City when a new surgeon removed the lower right lobe, and did a more thorough REPAIR and told me at some point in time I would need to return and have the repair surgery done to the left lung also. (Amazingly at that time I was told I was pregnant also). I again traveled to S.L.City in Oct 1986 because of a lung collapse (left lung); and then in Feb 1987 gave birth to another baby girl (my third complete C-section).
I've still had problems with blebs on the lungs causing partial collapses; but have not had to endure another major lung surgery. I've been on oxygen since June 2016. Although I still experience fatigue, I try to focus on the blessings of the medical advances that have extended my life. In our extended family, 2 of my daughters, 2 sisters, and about 10+ cousins have been confirmed with B.H.D.
I hope that having shared this story will be of some hope and encouragement to others.

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