I figure I should write this before a Herx hits again so hard I cannot think.

Surgery went well. It was slightly different than last time; since my port had already been removed, it was less invasive than before. Because it was less invasive, I was denied any of the strong painkillers when I woke up, and only given a couple of Tramacet, which works about as well as Tylenol for me. The thing is, because I am in constant pain, my brain processes it differently. My threshold is lower than it once was, because the pain receptors in my brain are basically fried. So, while a procedure of this kind may not require the heavy-hitter painkillers for others; for me, I was struggling greatly. I was in and out of consciousness afterwards (still waking up from being put under, I suppose) and at one point I even dreamt that they offered me cough syrup in my response to my requests for pain meds, as, “it says on the bottle it is good for chest pain!” I woke up thinking the nurses were a bunch of idiots sorely mistaken, and then realized it was all just a dream.

It turns out my surgeons were quite pleased with how the scar from my port removal has healed (which came as a bit of a shock to me, because I think it is pretty gnarly); but apparently the scar tissue from the previous port exchange left the scarring quite deep, and so far it is healing as cleanly as possible! (And hey— I’ll take all the good news I can get!) My neck was left significantly more painful afterwards, as it was more difficult to route the catheter through the vein this time due to scar tissue that had (not surprisingly, it seemed) built up there, and had to be cleared out before proceeding.

New Hickman line, old scar, and my sad neck

A different brand of catheter was used this time (still making it a Hickman line, but with a Groshong catheter, which works slightly differently, and is different in size); and I have to say, I am so much more comfortable with the looks of this one! It is—dare I say—worth having the last one fail, I prefer it that much more! It looks very similar to my PICC line (the line I started out with) in size and color; and has a butterfly clasp that is sutured to my chest to keep the line from moving until my body has healed around the internal cuff, which is also much higher up (in case the stitches come out? I sure hope not!) The surgeon joked beforehand that he would, “stitch, glue, tape—whatever we have to do to keep it in place this time!” Which I have to admit, was kind of neat to hear, as the more often I see him, the more of a personality I get to see. I have a third fourth access scar on my neck (from routing two ports, and now, two Hickmans); and potentially more scarring, as the hospital failed to read my bright NEON orange bracelet stating my latex allergy, and used latex Steri-Strips to suture my neck wound closed. This resulted in major blistering, which turned into what looks like burn marks, in the four places the tape was adhered to. The entrance wound itself healed beautifully this time, though!

A new device has left me with new methods of bathing; because water had leaked into my dressing twice (a big no-no) while only sponge bathing, showering was completely out of the question. My hair, which I decided way back that I was growing out until I got better, was found impossible to wash by any home devices; between it being down to my hips, and with my neck still hurting from recovery and all. SO, after going the longest I have ever gone without washing my hair, I went to a salon to get it washed. I got some funny looks, and more than one, “You just want it washed? Not blow dried, or styled at all?” But when all was said and done, I was pretty grateful!  Now, I feel there should be some sort of contest to guess how long I really went without washing it. But, for lack of a (decent) prize, I will tell you: NINE DAYS. That is right, people! Even longer than when this all started with meningitis! (And that is only because then, my dear mother washed my hair from bed, as I lay with my head hanging over the edge with a Rubbermaid below me. Now that is love! If only my poor neck could have held up my head, and all this hair, this time around!)  

I started IV antibiotics (for the first time in over 5 months!!) the day after we arrived home. True to form, a Herx kicked in on day 3, and by day 4, all I could do was lay flat in a dark room, and sleep. It got to the point at times where it was so bad I couldn’t even sleep for the severity of symptoms! I had truly forgotten how hard treatment could be, but am ever so grateful it is hitting me so hard. Why? Because that means I am killing off SO much Lyme my body can’t keep up with the toxins it is leaving behind as it dies off! I am fighting this, even if I’m doing it lying down. It is quite reminiscent of my early days of IV treatments, when we were living down south, and all I could do was wake to eat, and read to Jack, before I was back to sleeping again; of a time where I was too sick to visit, to leave bed, to play. Only this time, we are pulsing my treatment, which means I am allotted breaks to recuperate for a couple of days at a time before hitting it hard again. And I pray—Oh I pray!—that this will be what leads us to the very end of this. 

I have to thank you all once again for the army of prayers that surrounded me as I went in for surgery. They kept me calm, and when I wasn't, they gave me strength to pray for peace myself.

God bless each and every one of you! 

Kate

P.S. May is Lyme Disease Awareness Month! What can you do to show your support?

“…and, behold, I am with you always even  unto the end of the age."  Matthew 28:20