About two weeks ago, my lymph nodes in my neck started to swell.  Totally a normal thing for the Lyme, so no worries, right?  WRONG!  While the one on the right stayed around about the  normal size of a regularly swollen lymph node (you know, grape sized) the one on the left continued to grow.  I mentioned it to my nurse on her normal weekly visit, who promptly replied with (surprise, surprise) “yeah, that’s a normal Lyme thing.”  Ok, no biggie. 

By the next Monday, a week ago, I was feeling pretty run down.  That left lymph had reached the size of a small egg, and was visible to the naked eye, but only after being pointed out.  But I was stuffy, so I figured head cold, no big deal.  Annoying, yes, but worrisome, no.  Tuesday, was worse.  By the time I got home, I was seeing double and wanted nothing more but to lay down.  Forever.  My nurse came over Wednesday, promptly noticing that I did not go to work, and after donning her protective mask (always a good sign!), checked me out.  The left lymph was now a medium sized egg encroaching quickly on the large.  I assured her I had no intention of going to work any time soon, so she did her thing (blood draw, checked my symptoms, temp, blood pressure) and left.  Thursday brought my monthly check up with my doc.  By 2pm, the left lymph was lime sized (ha, ironic huh?) and very visible.  Besides that, Wednesday evening onwards it had been pushing so hard on everything else that should fit quite comfortably in that region of my neck that my teeth, inner ear, jaw, and throat were throbbing with pain.  The doc checked me out and was visibly concerned.  My earlier (completely stupid, overzealous, and morbid) Internet research of swollen lymphs being the first sign of lymphoma all over his face. 

He gave me a shot of cortisone in the upper hip, which by the way really freaking hurts!  And wrote me three new prescriptions: Prednisone, Valtrex, and high dose potassium (apparently the antibiotics are lowering my potassium levels…hence those weekly blood draws) and told me to take a 4 day break from my IV therapy to let my body recover.  I had more blood drawn in the office to check for lymphoma, another Epstein-Barr panel, and whatever else may be going on in there, and headed home and back to bed. 

Friday I woke up feeling somewhat normal, that is, until I tried to eat.  Pepperoni pizza and Mt. Dew.  Except I couldn’t taste anything.  I could smell it.  I could feel the spice of the pepperoni on my tongue, but no taste whatsoever.  WTF, man?!  So I left a message at my docs office to see what was going on, which was later returned with an “oh that’s normal.”  Ok, great.  (My taste did return by Saturday morning)  I had to take th boy to meet his dad for Christmas on Saturday, and with the projected snow, we decided to drive up Friday night, spend the night, and come home a little earlier on Saturday.  Not needing to do any infusions til Monday, I packed my stack of pills, but did not bring my IV supplies. 

Saturday morning we woke to fluffy white mountains of snow, and falling snow, and blowing snow…you get the idea.  We dropped the boy early, ate breakfast (mmmm…Cracker Barrel) and headed out at about 1030 for our short 3 hours drive home.  Yeah, right.  While the roads were clear of traffic, another round of blizzard came through in the early afternoon and by 3pm the plows had given up clearing snow from the highways and the visibility was so bad we were forced to find a hotel for the  night, 2 hours from home.  Not such a bad thing under normal circumstances, but…

The doc also recently put me on Vyvanse, an mild ADHD medication to help with my Lymie brain fog.  It works great for that, except that it also makes me TOTALLY WIRED for about 20 hours after taking it.  Also, the steroids (prednisone) make me jittery, and being in a heated vehicle for two days, driving under stressful conditions had completely dried out and worn out my body to no end.  So I was totally wasted physically, but completely wired mentally.  Not a good combination for rest. 

Then I noticed, my tube was fairly, uh, empty. 

Normally, my tube, the 6 or so inches of tubing that hangs out of my chest from my catheter, is full of heparin (blood thinner) between IV infusions.  Being a “Groshong” catheter, it is specifically designed to be self-sealing, nothing in, nothing out unless there is pressure placed on the valve, like from a syringe pushing fluid or pulling blood.  That is the point of the thing.  So if there is nothing in my tube, specifically only 2 inches worth of fluid in the 6-ish inches worth of tube, where the hell did it go?  At home, I probably would have just flushed some saline through and called it a day, but, I didn’t bring any saline.  And I was snowed into some out of the way hotel in the middle of who knows where because there is a million feet of snow outside.  So now what? 

When we finally got home Sunday afternoon, the mere 2 inches of fluid that were in the tube were completely gone.  I called the 24-hour nurse hot line, trying not to panic in front of Mr. W and his sensitivities to all things that may cause me pain or discomfort.  The nurse on the line was utterly confused.  Not in the confused way that he was inept, but in the confused way that it’s not supposed to ever go dry.  No matter what.  It’s designed that way.  That’s the freaking point of the thing!  So he told me to clamp my tube as close to my body as I can, and a nurse will be out to check it in the morning.  Meanwhile, if I have any weird feelings, especially in my chest, head to the ER.  Ok, yeah, that will help me sleep.  Thanks.  Oh yeah, and in “clamping my tube close to my body,” that has basically resulted in the clamp, roughly the size and shape of a pair of kiddie-scissors across my chest, held in place with two ace bandages wrapped around my upper body and a sports bra.  On the inside, things are digging and pinching and just plain uncomfortable.  On the outside, I look like I’ve sprouted a third, rather misshapen boob in the center of my chest, slightly higher than the other two.  Luckily, I’m fairly un-endowed in the boob department, so it could be worse.  I suppose. 

I spoke to my nurse this morning, and she talked me through drawing out the air, so I’ll be trying that later on this afternoon.  And the adventures in Lyme continue…

This entry was posted on Monday, December 21st, 2009 at 4:48 pm and is filed under Lyme disease, Mr. W, health, insomnia, kids, mental, physical. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.