Living With Marfans


As the 90's progressed, my symptoms did not improve. Although my Echo's and MRI's looked good, the symptoms continued. I had several scheduled visits to my primary care physician(s), but their take on my condition was similar to the cardiologists.

Toward the end of 1995, my symptoms got worse. Along with the high fatigue, the elevated pains, the headaches, and the shortness of breath, I noticed at times I was getting dizzy.

In 1996 and 1997 I had to work limited part-time due to my health. I thought if I had more time to rest maybe my symptoms would improve.

In 1998, I increased my work time not because my health improved but mainly due to monetary reasons. I still was unable to work full time no matter how I pushed myself.

In 1999 and 2000, I increased my work time even more due to the workload and job requirements, but still was unable to work full-time on a consistent basis. It was near agony working during this period, but yet I pushed myself onward.

In the beginning of 2001, due to further degeneration of my health, I cut my hours back to more part-time and made a very important health decision.  I wanted my Doctors to run a battery of tests on me to find out what is causing these symptoms and how much of it is related to the Marfans and the medications.  If we could rule out everything but Marfans, then maybe I could get some answers. ( I have included a list of tests that have been done on me through the 90's to present).

Through all the emergency visits, all the regular doctors visits, all the testing, maybe finally I would get some answers and just as important, some relief. Unfortunately, most of them came back normal. In a way it should be a blessing they did, but I knew it pointed me in the area I knew little about at the time, MARFANS.