My personal story with autoimmune disease

I am not a doctor and thank my lucky stars that I am not. The pressure must be intense. Instead I am among a much smaller group of scientists, doctors, and laymen who care more about preventing illness than treating it. None the less, some of us reach a point  when doctors get full credit for saving our lives. We reach a point where prevention is no longer an option.

Here is my story, some of which was garnered in conversation with doctors, family, and friends. Because I was in la-la land.

On the afternoon of January 13, 2000, I left my office in Overland Park, KS, feeling really awful. I do remember that. Near midnight after a severe bout of bloody diarrhea my husband took me to the emergency room. I was unconscious to the world before I was even put in an evaluation room. Multiple doctors later I was diagnosed with TTP, thrombotic thrombocytopenic purpura. This was not a well known condition and they held training sessions for the floor nurses; they had never heard of it.

As an FYI, TTP now shows up as a side effect of certain medications advertised on television. Since I have first hand knowledge of this “side effect” it hurts me that anyone would even suggest using a medication that might actually cause it.

TTP is most often an autoimmune condition, the immune system creates antibodies attacking an enzyme in the blood coagulation system causing tiny blood clots to form in the small blood vessels throughout the body. These clots cause rupture of red blood cells and damage to organs in the body. The understanding of how this condition develops was published in 1998, only two years before I grew ill.

Generally speaking TTP comes in three forms, one of which is genetically inherited and very rare. I didn’t have that one. Otherwise there is an idiopathic and secondary form. Color me idiopathic. In case the word idiopathic doesn’t compute for you, let me help. It means we don’t know where it came from (what caused the autoimmune reaction) and we don’t know where it went. So you can understand why I was on full alert for many years before I became satisfied that it wasn’t coming back.

Untreated, TTP is a death sentence. The cure was daily replacement of my blood plasma, some 40 plus times in my case, until the blood no longer showed evidence of autoimmune antibodies. And I was given steroids to suppress the immune system. They simply flush out the plasma (including the antibodies and shot blood cells) and replace it with fresh frozen plasma. The hospital did not have the equipment for plasmapherisis and instead used equipment intended for kidney dialysis. Remember, TTP was very uncommon.

About 45 days after I was admitted I woke up, my first words being, “Can someone tell me what’s going on here.”  I can imagine me saying that. Whatever they told me didn’t stick because I couldn’t even remember the time of day. 45 days in a coma kinda messes with your mind and physical capabilities and rehab was required before I could even sit up unaided.

In July of that year i officially retired from a 38 year career in the telecommunications industry and moved to Mount Ida, Arkansas. I have good news and bad news.

First the good news. I really do love Mount Ida. Further, the organ damage possible, including kidney damage which was most feared, has not appeared. Thank you, Lord. The bad news is that I have residual high blood pressure, a condition I never had before I was sick. I also have type 2 diabetes. Admittedly my diet and genetics predisposed me for diabetes but I believe that the steroids kicked me over the edge.  I also have diabetic neuropathy, damage to nerves in my feet. This damage is not fun. Further, I have cataracts which commonly occur for those who had extensive treatment with steroids. Steroids are often the first course of action to suppress the immune system and any diabetic can tell you what happens to their blood sugar when taking steroids.

Generally speaking, autoimmune diseases like arthritis, lupus, fibromyalgia, (and the list goes on) are not curable so I am very blessed. Once the autoimmune condition appears, your best bet is to prevent ongoing attacks by identifying and avoiding the factor(s) that engage the attacks. Since my book went to press, my continuing research reinforces that food and environmental factors are almost always the major causes. My research also shows that attending to those causes can prevent most autoimmune conditions in the first place.

I recently posted this blog, What to do about arthritis flares!, that talks about some of these factors and provides a long laundry list of autoimmune diseases. The post includes links to sources and doctors imminently qualified to help people with autoimmune diseases. Please click on the link and read more if you or a family member are in any danger.

Why is this important? Because if you can avoid activating an autoimmune condition in the first place or at least know how to prevent attacks, you can sidestep or minimize the inevitable consequences. I am cured of TTP but instead have diabetes, neuropathy, and high blood pressure.  Please learn from my experience.

Leave a Reply