Oklahoma Mastocytosis Society - Our Stories






Sharing Experience With A Smile

 Systemic Mastocytosis has been very devastating to me.  I had always been able to work and found time to do things with my family and friends prior to my diagnosis and progress.  Now, I am unable to hold down a job, take care of our home, or even do the things with my so that are so important to a child.

In 1982, I had my first shock attack. At the time, I had numerous tests, which found my liver and spleen to be enlarged, evidence of heart valve damage, and my white blood cell count was very high at 50 to 70,000.  My doctor suspected leukemia and insisted on a bone marrow test, but I refused.  I figured if it were leukemia, I had no intention of going through chemo, or anything else, so what was the sense if further testing.

For about 5 years, my health was stable, and then, in 1987, it started again. I would feel fine and then awake in the middle of the night with a heart rate of 120-140 beats per minute. I would get up to use the bathroom and wake up in the E.R. It was at this time that I was diagnosed as having Systemic Mastocytosis via a 24-hour urine test that showed high histamine levels.  The diagnosis was later confirmed by a bone marrow biopsy in 1995.

It was in 1994 that the disease seemed to be progressing at a more rapid pace.  I would have an attack and be in the hospital for a day or two.  Following the attacks, I would be unable to do anything for a week to over a month.  Eventually, I would return to work for a short period until another attack.  It was in the later part of 1994, the disease seemed to progress to the point where even the least amount of effort to do anything could throw me into an attack and shock.

I now have attacks for no apparent reason at all.  I have found some things that seem to trigger an attack-temperature changes (such as warm showers or going outside or inside during cold or hot weather), many smells (such as perfumes and cleaning agents), physical stress, mental stress, almost any normal activity, many foods, and many medicines.  I have good days every so often where I feel okay, or actually normal again, and I try to do things around the house as long as I take it slow, easy, and rest as soon as I feel tired or sick.  I found that the extended activity most often bring son the more severe attacks that have become life threatening on many occasions.  Also, following one of these good days, I usually have one of the more severe attacks within a day or two.

I treat the attacks at home with anti-histamines, an epi-pen and Primatene mist.  After medicating I am transported to the E.R., but on most occasions, I will sit in the parking lot while my wife monitors my pulse and blood pressure if I am conscious and talking.  As long as I remain conscious and the BP doesn't fall too low, we will return home when the attack eases.  If I do go into the E.R., they usually treat the attacks as I do at home but are able to treat additional symptoms-falling body temperature, administer antibiotics for the high white blood count, which often accompanies an attack, and sometimes an Arbitrol updraft for the lack of oxygen in the blood.

I have many days that I cannot remember one minute to the next what I am doing or are supposed to be doing.  There are days with such confusion that I cannot concentrate on even the simplest things, and days when I have so much joint pain that I am unable to do anything.  Almost daily, and sometimes several times a day, I never know when I MUST sit or lie down immediately.  Within a few minutes, I have a tremendous fatigued feeling and will sleep for hours.  I can be feeling okay one minute, and the next minute, will be fighting to stay conscious long enough to use the epi-pen and other emergency medicines.  There are many times that I would not be able to administer emergency medication without the assistance of my wife and/or son.  I have many days that I can do nothing at all but just sit.  Even the act of walking from one room to the next will exhaust me to the point of having to sleep for a short while.

I guess the best thing I can say about Mastocytosis is that I have had it for over 18 years now and am still alive and going. It would be easy at times to call it quits, but I have fought too long to give up now. I have found my experiences can be used to help someone. The Mastocytosis has helped patients from all over the world. My thanks could never be stressed enough to all those that have donated their time, money, or expertise to this site.             



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