Tuesday, December 15, 2009

Six Months

Today I had blood drawn. I feel badly because I genuinely want some of the bloodwork to come back abnormal. I should hope that nothing's abnormal, but if that's the case I'll have to spend more time searching for answers, wondering if I'll ever find one.

My doctor's checking me for vitamin deficiencies, immune system problems, a high Digoxin (heart medication) level and liver injury (ALT count which was high back in June). I had about seven vials of blood extracted -- some were short, others long. I watched the blood come out and it bubbled a bit, which means my heart was racing. I didn't feel it racing, though, and I wasn't anxious, so I started wondering if maybe the Digoxin level was actually low.

Many things can influence the Digoxin level like fibre, other medications, illness and many other things. Also, Digoxin has a very narrow therapeutic index which means that there is a very small window of effectiveness. If my blood level is lower than the index, the Digoxin won't work effectively and if it's higher, it can produce nasty side effects. I made sure that I took the Digoxin at 8AM, at least six hours before I had the blood drawn to make sure the level found in the bloodwork accurately represented my average level. I didn't want to risk a result that could steer my doctor's investigation into the wrong direction.

I imagined what the Digoxin level would be as I watched the blood lady fill the vials. I kept staring at the blood, thinking that it looked a little dark for blood and wondering if this meant anything. When I got home I had to stop myself from googling "dark blood" because I figured my findings would make me even more paranoid.

I continued to stare at the vials of blood as if my naked eyes and scientifically uneducated mind would be able to find a problem. Since I hit the sixth month mark of my illness on December 8, I've been in investigation mode, convinced that if there is a problem, doctors aren't looking hard enough to find it or that the tests won't be assessed properly. I stopped believing that I've been suffering from some sort of post-viral syndrome that will heal without treatment and started wondering if something more serious is going on. If it's true that the virus has simply affected my Dandy Walker syndrome, that's fine; I can live with that. I'll get rehab or whatever else may help me. But that doesn't explain the abdominal and leg pain and swelling, nausea, tiredness, etc.

My doctor said that if this bloodwork comes back normal, I'm likely not dealing with something serious like an auto-immune disorder or condition triggered by a virus. I'm not sure how I will react to the results. I will ask my doctor to run more tests, specifically on the blood vessels and nerves in my legs. I don't see what another ultrasound of my belly would do since the two I've had already have come back normal. Maybe a CT scan?

If my Digoxin level is abnormal, I'll go back to my cardiologist for his opinion and tests. Now that I have my school schedule, I will make an appointment to see my neurologist in January after the MRI of my head. I also have an appointment with the opthamologist who wants to see me in January. And I think I'll make another appointment with my internist too. She seems to know a lot about post-viral situations and she seems to know a lot of doctors too. A referral from her is sure to make other doctors take me seriously.

I always want a situation that will guarantee doctors will take me seriously. I am grateful for my Dandy Walker, hydrocephalus, asthma and heart medications which have afforded me sympathy and immediate investigation. I've heard so many stories of doctors not being thorough with patients who've grown up with perfect health or at least no serious diagnosis or have only recently been suffering. On the show Mystery Diagnosis, many patients featured are in one of these situations. The doctors either tell them their symptoms all in their heads or that they're just tired or stressed. Not me. When I say I have a shunt, doctors send me for tests right away and examine me thoroughly. My conditions are a gateway into the medical system, an instigator of investigation.

I will get the results of my bloodwork at my allergy shot appointment in a few days. I want to feel and look really sick when I go into see him to open the gateway a little wider in case the bloodwork comes back normal. If the bloodwork comes back abnormal AND I feel and look sick, I won't feel guilty at all for complaining. I hate complaining when tests and examinations are normal because I feel like I look like a hypochondriac. I'm trying to remember what my internist told me when I cried to her months ago. She said "It's not that there isn't anything wrong with you; we just haven't found it yet."

She's been completely supportive throughout this whole thing, as have my other doctors. So why do I feel so defensive, ready to beg for tests and second opinions? I seem to be letting the negative medical experiences of others influence my faith in doctors who have always been there when I've needed them. Don't get me wrong, I've had some negative experiences. One time a family doctor said I was fine and then I ended up in the hospital overnight with 12 oxygen treatments. It wasn't this situation that made me question doctors, though. I only recently developed a lack of trust in doctors and this was because of stories I heard from friends and a television show! Also, doctors still don't know what's wrong with me after six months of illness. This feels like far too long. I stopped going for tests months ago, so maybe if I'd continued, I would have an answer by now. But until I got bloodwork done today, I saw no point in even going to the doctor. I was convinced I would only be disappointed and no one would solve my puzzle.

When I noticed I'd been sick for half of a year, I became driven to search again. One month to five months seemed like an acceptable amount of time to be sick. I've been through that before, but I had to push through school at the same time. So I know I can do it again! I'm strong. I'm used to feeling like garbage. But I've never been sick for this long. Previous long-term illnesses gradually got better either on their own or with treatment. This time I'm not getting much better and there is no treatment. This is a different situation and so I'm going to take different tactics. I will cry to doctors if I have to. I will take pictures of my swollen feet and videotape of my wobbly gait. I will beg for tests. I will give them printouts of my blog. I won't nod my head and agree with doctors if they say I'm fine or that I'll get better on my own.

I'm not stubborn anymore. I need help.


  1. I love you Ash. You are one of the strongest people I know!! Fight for what you want. xo

  2. Thank you, love! I'm excited to see you! Your hugs will help me fight.

  3. You do whatever you need to do. Doctors and specialists are great, but they can't know everything.

    And don't be afraid to use Google! (I did. P'raps I'll tell you about it some time.) It's like millions of brains all in one place.
    You seem intelligent enough to be able to weed out the genuine stuff from the paranoia stuff.

  4. You're right and my situation seems to defy medical knowledge! Unfortunately, Dandy Walker is pretty rare and I haven't been able to find much info on the net about it -- specifically about the variant. When I was in university I had access to scholarly resources, but I could hardly even find info in there -- or info about my arrythmia! What medical info have you googled for??

    And I'm pleased to see you've read so far into into my blog! Thank you so much for your interest!