The Diagnosis

My Tuesday morning hemoglobin count was 7.9 and my platelets were back up to 33,000.  The threshold they usually use to determine whether or not to transfuse a patient is 8.0.  Since I had only been on the three-times-a-day dose of steroids for 24 hours, they decided to wait it out and see what Wednesday’s number looked like.  They wanted to give the steroids time to kick in and do their job.  Also, there is always a risk with a transfusion, especially when the blood isn’t an exact match.  If Wednesday’s number is up then I will likely be able to go home.  If Wednesday’s number is down, despite the added steroids, I will have to start IVIG treatment, which is an infusion once a day for three days (this would make my earliest departure Saturday).

Everything came back negative.  By process of elimination, it was determined that I have Evans Syndrome.  Evans Syndrome is a drop in two of the three blood groups (in my case, red blood cells and platelets) with no underlying cause.  The primary course of treatment is steroids.  These are used to suppress the immune system and temporarily stop it from destroying healthy cells and platelets.  I will likely be on a large dose of steroids for the foreseeable future.    

I got to walk around the hospital halls with an aide on Tuesday while wearing a pulse oximeter so they could measure my heart rate and oxygen levels.  Luckily, I did so well that they took me off the oxygen mask!  As I slept Tuesday night, my heart rate dropped to 45 beats per minute and ICU sent the nurse in to wake me up and make sure I wasn’t crashing.  If anything, this just proved that my tachycardia was fading!

The Emergency Room

My husband, my mother-in-law, and I arrived at the Saratoga Hospital Emergency Room around noon on Saturday, May 28th.  The minute I mentioned chest tightening as a symptom, they whisked me back to Triage 1 and immediately hooked me up to an EKG.  I think it is the fastest I have ever been seen in the ER.

Thankfully, the EKG showed that the strain wasn’t on my heart.  They walked me back to a private room where an ER nurse took my vitals and started me on IV fluids for dehydration.  She also drew blood for the lab and asked for a urine sample.  The bathroom was literally two doors down from mine and I had to stop twice to catch my breath.  When I returned from the bathroom she checked my vitals again and informed me my oxygen saturation was low and my heart rate increased 40% when I stood up (tachycardia).  I was put on in-room oxygen while I waited for someone from radiology to wheel me in for a chest x-ray.

The x-rays showed no spots/shadows on my lungs, no clots, and no concerns.  Whew!  By the time I got back from radiology, the phlebotomist was waiting to take more blood.  The first round had hemolyzed because it was taken through the IV instead of directly from the vein.

After the phlebotomist finished, the PA told me I would be getting three CT scans (chest, abdomen, pelvis) to check for signs of internal bleeding or clotting. Two nice ladies wheeled me to the machine and informed me that, if I consented, my abdomen CT would be with contrast to better highlight blood vessels and tissues and check for tears or bleeds.  I’m happy the technician vividly and accurately described all of the strange sensations the iodine injection would make me feel, otherwise I am 100% positive I would have thought I soiled myself.  The scans showed an enlarged spleen and liver, but, thankfully, no internal bleeding!

When I returned back to my room, the results of the urine sample and blood draws were back.  The PA explained to me that my liver enzymes were slightly raised, my bilirubin count was high, and my hemoglobin and platelets were both extremely low.

Important definitions

Hemoglobin is the protein molecule in the red blood cells that carries oxygen to tissues and returns carbon dioxide from the tissues to the lungs to then be released.  An average hemoglobin count is between 12 and 18 (usually 12-16 for females).  My count was at 5.3.  My baseline blood work from six weeks prior, when I had first started the diet, showed a count of 10.7.  

Bilirubin is an orange-yellow substance made during the breakdown of red blood cells.  It passes through the liver and is eventually excreted.  A high bilirubin count can indicate an increased rate of destruction of red blood cells, which is also called hemolysis.  My raised bilirubin levels were the cause of my dark urine and jaundice.

Platelets are cells that travel around the bloodstream and bind together to repair broken blood vessels.  When your platelets are low you are at a higher risk for internal bleeding and blood loss because your body cannot form clots.  A normal platelet count is 150,000-450,000 per microliter of circulating blood.  My platelet count was 39,000.  My baseline blood work from six weeks prior showed a count of 43,000.

So what does all this mean?  My numbers were low – too low – and I was admitted with jaundice and a preliminary diagnosis of hemolytic anemia.