Living With Marfans

Beginning of the Hospital Era:

In 1981, when I was 22 years old, I had my appendix removed.  I had it done at Beth Israel hospital in Boston.  My family told them that I had Marfans and at the time, I really wasn't exactly sure what Marfans was or how it related to surgery but if it was useful information so be it.

In 1985, I was seen at Beth Israel for severe diahria and stomache bloating.  I actually had diahria for almost a month.  I lost a lot of weight.  All the weight I had put on through exercise and heavy calorie intake was gone.  Several tests were done, including a full gastro series. The cause was not clear.  It wasn't till they did a lactose intolerance test that they concluded I had lactose intolerance.

After modifying my diet, I began my exercise and calorie intake again.  Even with the non-lactose diet, I experienced stomache bloating and cramping rather frequently.  Both myself, my doctors and my nutritionist were puzzled.  I continued through these times and kept myself motivated.

Even though with these new problems hampering my day-to-day life, I continued to persue a healthier me.  As the 80's weigned, I found it harder to get the energy to workout.  Although I loved the 'pump' of exercising, I noticed that my fatigue level as well as my shortness of breath had increased.  I had to cut back on working out and I did less strenuous exercise.  In my mind, I thought my problems with being able to exercise was mostly due to my stomach and the sunken chest I had.  I never thought that Marfans was as complicated as it was or that my body could be sending me signals.  All I knew was that Abraham Lincoln had Marfans and he was supposedly healthy as an ox.


Jon's graduation 1984 cousin Diana, Jon and cousin David