Jane M USA
I’m 51 yrs old and was diagnosed with Degos in August of 1996. I had noticed a spot on my right thigh in March of ’96 but didn’t really think anything of it. Then in May while on a fishing trip with my husband, I noticed another on on my neck and two more on my left leg. Being a Doctor’s daughter I thought this was a little out of the ordinary, so I went to my Internist who insisted it was pigment changes.
I was not comfortable with that and asked for a referral to a Dermatologist. He then biopsied one of the lesions on my left leg and a week later he told me that he could not treat what I had, (he had seen a case like this when he was an intern, some 20 yrs prior) and he was referring me to the head Dermatologist at the University of Kansas Med Center. He told me that I had Degos disease and not to be frightened. I was not sure what he meant by that comment, so my husband went to the medical library at KU Med Center and copied everything he could find on it.
Well………….. if we weren’t taken aback with what we read!!! I was taking 650mg of aspirin x 3 and 75 mg of dypridimole daily after being reassessed by the Dr. at KU. Spots seemed to slow down and we thought we had it under control.
Then in April of 2000, I had a heart attack right in the ER at KU!!! They did not believe I was having an attack since I was only 47 at the time and no history of heart trouble. I kept insisting I was until I had to prove it to them by going Code Blue on them and had to have the paddles taking to me twice to revive me. I was then in a coma for 36 hrs and woke in ICU on a breathing machine! I bounced back and the doctors told me that my right artery had dissected (exploded). They did an angioplasty on me and sent me home on 5 days later! Told me to go back to work in two weeks and see their Cardiologist in 4 weeks.
Well, that didn’t happen, because I was still not feeling right three weeks later and went to a different Cardiologist for a second opinion and he put me right in the hospital from the office. I didn’t have time to blink! I was back in the Mid America Heart Institue for 2 weeks and in that time they did another angiogram and angioplasty and found out that my right artery had not exploded, it had been attacked by my blood cells and had blocked up the artery to the point that now they could not save it.
I lost 10% of my heart muscle and my Cardiologist is convinced that it was the Degos that caused the MI in the first place. He has now consulted with my Dermatologist and they both concur that it was the Degos that was at fault.
Now instead of Dypridamole they have me on 75 mg of Plavix (blood thinner and clot buster) along with 1950 mg of aspirin a day. Spots show up at intervals of 1-2 every 18 mos and since I’m allergic to Trental, there is not much else they can give me. I know that most professionals think that the disease can hit the small intestine and/or the brain. It can also hit the eyes and heart. I just want everyone to be aware of that.
I’m the type of person that stays “up” for the most part and I don’t let this thing get to me. I figure I have my life to live and I’m going to live it. I play golf, bowl, fish, read and play on my computer. I have a wonderful family and my husband is great! I take my meds each day, but other than that reminder, we don’t talk or even think of it. I don’t want any of you to think that I’m not concerned or worried. I am, but it takes too much energy to worry 24/7 about something that at this point I can do very little about. I would rather have a positive attitude and live a little!! What about you kids??? 🙂