Friday, December 7, 2012

Getting PICC'd On and More...

Life with Lyme is never dull. Except when you can't do anything but lay on the couch and cry... My intentions were to write this post a few months ago. Yep. Lyme. No fun. So here we are. Fiiiiinally updating. Hopefully will be more caught up and can continue on a more normal schedule of updates.

School started and with it came a new set of obstacles such as waking up at the right time to get all of my kiddos to school at the right times. 4K drop-off at 7:50. Back home until 8:15 to get my middle schooler off to school by 8:30, and then a half-hour wait in the van until the 9:00 hour when I can let my 2nd grader out for the start of her day. The last two schools are literally 90 seconds apart. I sit. A lot. :)

The girls have been doing great with their treatments. I really hope and pray that we won't need to be treating much longer, at least for the Lyme and Bart. The Babesia needs to be treated for about a year or so, and that's ok. Except for the part where insurance resets in January and we will have to begin paying for the Mepron again. That's the ├╝ber expensive medicine. $5,000 for 3 months for one person. Our co-pay is 10% at best.
Here we are at our quarterly post-blood draw Starbucks treat. Nothing makes a girl feel better after a poke like a nice decaf Latte, Hot Chocolate, Steamer, or Caramel Apple Spice!

As for me, just like the summer, my downward spiral and plateau down there in the valley continued. My LLND and I discussed a different plan, which included me being joined in holy union with a plastic tube, better known as a PICC line. Until then, I got to stop taking oral antibiotics – as they had pretty much shredded my stomach – and begin a month-long regimen of 3 times weekly Bicillin injections, which my amazing hubby got to administer.
Bicillin. A thick white goo, three times a week. 1.5" long needle,  has to go ALL the way into my hip muscle. And it's not a thin needle. It's actually quite large. 21 Gauge if you know what that means.

I had another Western blot (Lyme test) and this time, even the CDC (Center for Disease Control) couldn't deny that I am POSITIVE for Lyme! The longer you treat, the more your body can identify the bacteria and begin to make more antibodies against it. We needed a CDC-positive test result for the insurance company to approve and pay for the PICC line.

The paperwork was finally processed and the appointment was made for me to travel 3 hours to a hospital in Appleton, WI, to get my PICC line. This is not a surprise to Lymies as we know how much scrutiny our doctors are under. This was the only hospital the company could find that would allow my doctor privileges to order my PICC line. Serious drama in the medical world revolving around a tiny spirochete called Borrelia Burgdorferi (the Lyme bacteria) makes getting treatment frustrating to say the least!!

My hubby drove up with me (of course) for my appointment. A Peripherally Inserted Central Catheter (PICC) was placed in my right arm, above the elbow, on the inside. This is good for up to a year, and Lord-willing, will remain until it is no longer needed.
The amazing lady who inserted my PICC line. This is a surgical procedure, so Nick had to leave the room for the actual insertion.
 They had to try 6 times to get the catheter inserted properly. It goes up a vein that travels through the shoulder and then joins the Jugular (which we don't want) and then the Superior Vena Cava (which we do want). This is where we want the PICC – it stops just above the heart, so that the medicine gets mixed with the largest volume of blood and sent throughout the body immediately. She finally got the PICC placed and off we went to radiology for a chest X-ray to make sure my PICC looked good and in the right place. Hooray! It was, and we headed for home.

Here it is!
So now I had the fun of learning how to infuse my meds, how to flush the line, and keep it in good condition, including not getting it wet. Press 'N Seal is good for this! So is my husband, who washes my hair for me. Yes. That's right.

Unfortunately, after the first week we discovered I have an allergy to adhesives, like my father. So we switched to hypo-allergenic dressings (called a tegaderm) and very specific tape called Mefix. The following picture shows my arm, finally healing from the blisters and sporting a new clear tegaderm.

Yes, it's the same arm... the first picture was taken in a mirror. :)
There were more blisters, but you get the idea. So now my life would consist of twice daily antibiotic infusions, along with taking oral meds as well. Each infusion takes about 45 minutes start to finish. I do get weekends off, though. The new protocol seems to be working. I hope. It runs on a 4-week cycle, and about week 3 I began to see some improvements.

I could actually walk (still slowly) up my stairs without stopping half-way. My legs were still in a good amount of fatigue and pain at the top, but I could do it! Well, at the end of week 4, I took a major crash and it seemed that all the progress I had made was completely gone. I had more fatigue than I had had in weeks, the limb pain and fatigue was back in full-force, and my migraines came back.

This disease is frustrating, to say the least. My LLND and I are figuring that this is a result of the die-off (that's the herx, or Herxheimer, reaction) from the bacteria letting go of all the neurotoxins which really make you feel sicker. Much sicker.

Okay, this post is long enough. I will continue (hopefully) and keep posting regularly again.

Peace, love, and cider mugs to you all. Stay well.