quote OBX2Kayak: "Did you get a second opinion?"
Well........this diagnosis is reliable, but the process to get to the diagnosis was a journey of well over a year, and the cause is unknown.
A year ago last October, my son-in-law and I went on a brief canoe trip in the UP. Thursday, I was humping packs and canoes easily over portages. That afternoon the weather turned cold, rain started and I got cold and chilled.
Next day, I was having trouble huffing and puffing just picking up fire wood!
After returning home, I didn't think much more about it. I had a routine check up with my kidney doctor (I'm diabetic) and they noticed I was becoming anemic. They assumed it was due to decreasing kidney function and began threating me with a common monthly hormone injections which stimulates your bone marrow to produce more red blood cells.
Prior to receiving the injections I had to undergo monthly blood tests. Some were good, some were bad, but eventually the kidney doctor became to suspect that something else was causing the anemia.
I was then referred to a hemotologist/oncologist. She started from scratch and did not assume that the anemia was caused by either my diabetes or kidney issues.
Test after test and what seemed like gallons of blood being drawn, they began to draw a picture of what what going on. My immune system was attacking my red blood cells as if they were an enemy instead of a friend.
So, the puzzle begins to become more clear. They know what is happening, but not why. This is like a jigsaw puzzle with hundreds of pieces laying out on the table that have to be properly put into the puzzle in order to see the final picture.
The big picture is referred to as "Autoimmune Hemolytic Anemia" where your antibodies destroy your healthy red blood cells.
The normal regimen for treatment is to start with treatments using Prednisone (corticosteriod). This didn't improve my red blood counts. So then they try a common anti rejection drug used quite often on transplant patients. This didn't have time to work before I caught a bad case of the "pukes" from a stomach virus.
Suddenly, my red blood count plummeted and I didn't have enough strength to brush my teeth, my skin turned yellow and I was rushed to the emergency room. I found myself in the hospital for a week, receiving transfusions.
While in the emergency room and intensive care, I received three units of blood. The hospital obviously tests my blood, types it, and checks for antibodies that are agreeable to the donor's blood. They monitor closely to make sure that your body doesn't attack the donor's blood.
Turns out that the hospital had to "heat" the donor blood in order to keep me from rejecting it, due to antibody testing. This was the first clue that I might have the "Cold Agglutenen Disease" Further blood testing and bone marrow biopsies, confirmed the diagnosis.
Of course, now that I finally have a diagnosis, many of the things that have been happening to me have begun to make a lot of sense.
Weird things like my ears turned purple after being outside working in the cold one day just before Thanksgiving. My blood coagulating at room temperature when drawn for blood tests, etc.
It's a very rare disorder, and diagnosis was really a matter of eliminating a bunch of other more common causes.
I'm now home from the hospital and am slowly beginning to feel stronger from the transfusions . I spent a week in the cancer wing of the hospital being treated and tested. That alone was a very humbling and enlightening experience.
God sends us angels in many forms to help us all. Kiss a nurse! Those gentle, kind and caring people deserve all the praise I can give them.
So, tomorrow I meet with the hemotologist to discuss a plan of attack. At this point, I hope to be able to get back to the point where I am strong enough to paddle my canoe once again. Ah.....a new challenge, and new adventure!
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