Barb Story

My adventure with Lupus appeared to have begun in March, 2002.  For several days I experienced bleeding gums, my nose dripped blood, there was petechiae (tiny red dots on my skin from minute hemorrhages) on my arms and legs along with very dark bruising in peculiar place such as between fingers and toes, tops of wrists & inner thighs.  There was also a broken blood vessel in my left eye.  Some blood work showed my platelets were at 16 with the range being 150 – 400. Platelets are the blood cells that are responsible for clotting blood.  Without them a person could bleed to death easily.  A bone marrow biopsy the next morning showed my bone marrow was producing platelets as it should, but obviously my immune system was killing them.  That day they were down to 0.  I was diagnosed with ITP (idiopathic thrombocytopenic purpura) and was given three IV immunoglobulin treatments along with 140 mg daily of prednisone, a dose the pharmacist hesitated to give me because it’s dangerously high.  Prednisone can perforate your stomach, deplete your bones of calcium, damage vital organs, cause severe insomnia, mouth sores, thin skin, hair loss and confuse your mind, among other things.  It is a dose no one can function on. It makes my muscles so weak that walking is difficult.  But it is first in protocol for ITP treatment.  In about 6 weeks life was almost normal again with platelets up and I was weaning off the prednisone

In August, 2004 I suddenly developed a 104 degree fever with severe muscle pain in my ribs.  In a few hours it went away.  A few days later the fever and pain returned causing me to see the doctor. His thinking was gall bladder.  An ultra sound showed that that was fine, so we went on to an MRI along with other tests and blood work.  My liver was suspected, but blood work showed it to be ok.  Blood work did indicate an autoimmune process going on.  Meanwhile fevers and pain disappeared.  Along the way I was diagnosed with anti-phospholipid syndrome found in many Lupus patients.  It can cause blood clots.  I was put on aspirin.  In October, 2004 my skin looked yellow.  I tried to ignore it.  A few days later, as I was putting clothes in the washer, I suddenly realized I was too weak to stand up and found myself resting the top half of my body on the washer.  I was hospitalized immediately.  With the focus on my liver, blood work was done and revealed my hemoglobin was at 6 with the range being 11-16.  Hemoglobin, along with red blood cells, carries oxygen from the lungs to the rest of the body.  That explained the jaundice (yellowing of the skin caused by breakdown of hemoglobin in red blood cells).  Now my immune system was killing my red blood cells. I was diagnosed with hemolytic anemia.   I was in the hospital several days and, of course back to 120 mg of my “favorite drug”!  By Christmas time I was back to work half time.   My life was no longer in danger.  But the pieces of the puzzle were coming together for the doctors and I was diagnosed with Lupus.

On November 6, 2007 at 4:00 pm I came into the house after working outside and discovered petechia covering my arms and legs.  I hadn’t seen this since March, 2002.  A quick call to the doctor got me in for blood work and found my platelets at 3.  All the bruising and bleeding was back.  In the ER that evening I was given a unit of platelets from the Blood Bank.  My platelets continued to drop during the next few days and landed at 1.  Once again I was started on 120 mg of prednisone and immunoglobulin IV treatments.  They did not work.  A week later I was bleeding internally and was hospitalized for a couple days with many infusions of platelets.  My count was still down to almost nothing.  As one nurse put it, “It seems your immune system gobbles up the platelets as soon as we put them in you!”  A bone marrow biopsy again indicated ITP.  I was started on a new IV chemo related treatment that was to target the B cells that were causing the trouble.  The B cells (part of my immune system) “remember” the platelets and kill them as if they were bacteria or virus cells.  The treatments seemed to be working a little.  By Christmas I had finished the IV treatments and was still on the 120 mg of prednisone.  The doctors were very concerned about what damage that dose of prednisone could be doing.  On Christmas Eve day I was given the news that my platelets had dropped from 103 (which we were so happy about) to 57 and it was suggested that my only chance was to have my spleen removed because the platelets were sure to continue dropping.  The spleen is a very vascular organ located in the upper left side of the abdomen.  One of its responsibilities is the destruction of old red blood cells and platelets.  It is part of the lymphatic system.  I spent my Christmas Eve researching the splenectomy on the internet.  Three days later I was back to having platelets infused because my count was down to 7.  Once again I was given the IV drug that brought me to 103 in hopes that it would work for me again so that I could have enough platelets to get me through surgery.  The doctor explained to me that I could not continue with the IV treatments for maintenance of platelets and there were no guarantees the surgery would work.  It was a risk I had to take.  For 3 months I had daily blood draws including weekends and holidays. If platelets were under 10, I had them infused.  It was a challenge for medical staff because my veins were very difficult to penetrate due to the use they were getting and the drugs I had to be on. On February 1, 2008 I had my spleen removed.  My platelets went to 600+ one day post surgery.  I now have monthly blood work with hopes of my platelets moving into the normal range and staying there. 

Hopefully, my blood work will stay good.  I can live with the mucous membrane sores, joint pain, achy muscles, brain fog, tiredness, painfully dry eyes, etc.  But I can’t live without blood cells.

In looking back, I think the stress of losing my mother in 1998, my son’s leukemia in 1999, moving twice and major job stress until recently, all probably contributed to my illness.  Also, I do not relax well.  All of that combined with genetic makeup (having relatives with autoimmune diseases) brought me to having Lupus. Looking at my milder symptoms previously mentioned, I think I had the disease long before it was diagnosed.