maarmie's musings

Wednesday, March 27, 2013

I almost died

Cool title, eh? I almost died. I almost died? I almost died! I did!

So it all started out with a virus. You know, one of those viruses noone can do anything for. You just have a fever and chills and headaches and feel queasy and you've vomited a few times and it'll pass and there's nothing we can do for you and you just have to wait it out kind of thing. Only I didn't get better. I kept getting worse. And that's not like me. Even when I had swine flu, I was comatose in my bed with fever and vomiting for two days and then I was feeling much, much better. With this virus, the sweats and chills kept coming for more than a week, I was getting paler and paler, the headaches became a constant companion, and I couldn't walk more than two steps without having to sit down for a rest.

The first time I went to the doctor for the virus, he took a urine sample (dark orange in colour) and tested it for glucose (negative) did the whole temperature, blood pressure, oxygen level thing and sent me on my way. By the end of that week, I was feeling even more crappy, so I figured I should talk to the doctor again. All they would give me was a telephone appointment. He reiterated it was a virus and that I should just rest, etc.

That weekend was a nightmare with me not even being able to wash more than two dishes without needing a rest. The headaches were intensifying, and I knew something must be seriously wrong. The following Monday, I made an emergency appointment at my surgery but requested a different doctor. I went in to that appointment knowing that if I was turned away with "it's only a virus" I was going straight to the emergency room because I could no longer really function. I could barely take care of Elliot, and I was miserable.

The new doctor took one look at me and became concerned. She noted my "interesting colouring" and tested my urine for protein (positive) and felt my abdomen and did other routine tests and ordered blood tests. She was hoping the results of the blood tests would be in that night and personally phoned me at half 7 that night to say they weren't in yet. The next afternoon, I got a call from a nurse at the surgery who mentioned something about a blood transfusion and booked me in to see the same doctor three hours later. I went to the appointment and sat with the doctor as she looked at the blood results for the first time. She said I was severely anaemic (normal red blood cell count is between 118 and 148 and mine was 79 at the time)  and said she was getting on the phone right then to get me booked into the hospital. She asked if I could go right away and I said "Please. Please can I go right away."

An hour later I was booked into ward 6c and would move to 6a then 5c before being released three days later. In that time, I had a blood transfusion of 3 units of O+ (my red blood cell count had fallen to 59) and one of the thoughts was that I had leukemia given that my marrow had stopped producing red blood cells altogether. There were mumblings of a bone marrow test (cringe) but then they discovered the dirty little secret about myself that I didn't even know: I have a hereditary red blood cell disorder called spherocytosis. I was basically a time bomb waiting to go off my entire life, and I finally did.

I have since found out that my paternal grandfather had spherocytosis and that my uncle and cousin both have it. I'm assuming my dad is a carrier of the gene that causes my red blood cells to be produced as spheres instead of flat pillows with concave sides thereby making them weaker and more prone to bursting and makes my spleen see them as foreign bodies it is determined to kill. Because my red blood cells have a much shorter life span than other people's, my bone marrow is used to producing many, many times the number of blood cells that a normal person does. However, I just happened to have contracted parvovirus and this one virus in particular causes bone marrow to stop producing red blood cells altogether for a short time. For the average person, this is no big deal. For me, this is fatal without intervention.

A scan of my abdomen shows my spleen to be twice the size it should be and shows my gall bladder to contain three small gallstones, another side effect of this hereditary condition. The haemotology outpatient department of the hospital will be monitoring me on an ongoing basis to see if my spleen grows or shrinks and to check me to make sure I don't become chronically anaemic. If my spleen grows or I become chronically anaemic, I will have my spleen removed (and my gall bladder removed at the same time, what the heck!) and will go on low-grade antibiotics for the rest of my life. As it is now, I'm taking a monster-strength amount of folic acid every day for the rest of my life to keep my marrow producing just as fast as it possibly can.

After I got out of the hospital, I had all sorts of other issues that seemed to spring from being in the hospital and off my feet for a few weeks. I developed tendonitis in both legs and had severe leg cramps in my calves to the point of being unable to walk and handing Elliot over to her dad as I could no longer care for her. I went and stayed with a friend for a week. She cooked for me the entire week so I only had to get up for the toilet, and that, and only that, is what enabled me to get better. I have been in the emergency room several times since with various leg pains and chest pains and have had my heart, lungs and legs checked and rechecked. Nothing is wrong with my heart of lungs, but I can't help feeling like my whole body has completely turned on me.

I was off work for 5 weeks. Now, almost six weeks after the first sign of virus, I am still anaemic (last count was 114 but I'm on a very heavy period right now and I'm all pale and slightly dizzy again) and my liver function is all off. They have done toxicity tests and tests for Hepatitis C and other viruses that could cause it to be off but have found no other cause as of yet. Either my liver function has always been off and I've never known it or all the medication and the parvovirus are still throwing it for a loop.

All I know is that I'm tired of all the bloodlettings, and my arms and hands are begging for a reprieve.


Anonymous said...

I'm glad you're feeling better and on the mend x

JA said...

This is unbelievable to me. I hope you're all right, Julie. What a terrible, terrible experience.