Hello again! I am back, recovering nicely, and overall pleased with my decision to have a port inserted.

My surgery took place last Friday. I wasn’t to receive a call until the Thursday ( you read that right—just one day before) to find out what time my surgery was at and when I should arrive at the hospital. We have been fortunate to have company come down the past two weekends; first, my parents; and last weekend, Jack’s Godparents. Unfortunately, I began an awful Herx just days before my parents arrived, and because of it, was even worse company than I anticipated I would be. The weekend went by all too fast (in both cases), and left me longing for home and loved ones even more than before they came.

By 3:30pm on Thursday  I STILL hadn’t heard back from the hospital to let me know what time I was to come in, and I was beginning to worry; I didn’t want the office to close for the night without scheduling me in! So I called the surgeon’s office, and they assured me that “they usually call after 4pm.” Much to my relief, the phone rang less than ten minutes later, telling me to come in at 11:15am to prep for my surgery which was to take place at 1:15pm.

We arrived barely 5 minutes late (pretty darn good for a girl who takes at least half an hour to get out of bed at noon, never mind at ten thirty!) We had to sit in the waiting room until someone who could admit us called us in to fill out forms, and give me grief for being what turned into 15 minutes late (I don’t think the last 10 counted—we were sitting in the waiting room! Oh well.)

Once upstairs in my shared room (more on that later), I proceeded to enjoy the luxury of changing into a hospital gown. I was almost one of those people you see on movies with their rear ends hanging out the back, but I must have gotten lucky, and instead received the latest trend; for only my upper back was left completely exposed. (Quite high fashion, I thought-- I almost regret not having pictures to share with you all!)

An IV went in my arm , as we couldn’t use the one that had been administering my antibiotics with, because for the second of three times this week, the vein had collapsed. (Side story: the first time it happened earlier in the week my arm slowly but surely started to swell and dent funny and then get all red and hot—*shudder* God’s way, I’m sure, of preparing me once more by helping me say goodbye to the old with confidence.)

All the while, as the nurse wrote down that I had a latex allergy in a billion different places in the same binder, and then wrote it again on a neon orange wristband for everyone to notice, my “neighbours” must’ve had ten guests crammed in on their side of the curtain. All of whom spoke at the top of their voice. The youngest, I think, was in the middle of receiving help with her homework, and we could hear math equations being worked aloud. The rest spoke as though they were not sharing a room with another patient at all; their loud voices adding to glare of the fluorescent lighting and together grating on what was left of my nerves.

The grandfather (or husband to the patient) was quite endearing. It must have been 12:30pm by this point, and the adult children started asking if they could bring the patient something to eat. The patient insisted what the hospital had provided (a bran muffin) would be enough. But the adult daughter carried on to ask if the mother was sure, because she was going to get herself a ham and cheese “samich.” Well, this brought on the scrutiny of the grandfather, asking, “what do you need that for? Didn’t you have breakfast?” (the answer over a long drawn out conversation turned from “no” into, “just two pieces of toast.”) I don’t know why the lady had to defend herself, she was an adult, and it was lunchtime after all! Unfortunately for me, they all traipsed back in with yummy smelling lunches (I had been on a mandatory fast for the past 13 hours!), complaining about the fourteen dollar bananas in the cafeteria and audibly enjoying them anyway. 

Then all of a sudden, the two hours were up, and I was being wheeled away. Matt told me that he loved me, and I got too choked up to respond. And all I could think as they wheeled me away was: if something bad happened to me, he would always remember that I didn’t say it back.

I was stationed alongside three other stretchers and given a gigantic sock to wear over my hair. The nurse just shoved it on, and I wondered why I couldn’t have put it on myself. The lady beside me later got a nurse who put one on her and told her “to adjust it until [she felt] comfortable” ( you can bet I began rearranging my bangs asap so I didn’t have to feel like a dog being pet the wrong way for another second!)

 The surgeon and anesthesiologist each took a side of the bed (and oddly, a side of the coin) when presenting me with my options. Since it was the same surgeon who told me that a PICC line hurt less than a scratch, I was a little wary of his bold assurance that if I went his route of topical anesthetic and laughing gas, I wouldn’t remember a thing. I told him I was really scared, and I didn’t want to hear or notice anything once, let alone a memory I may or may not have of it later. I was told I could be “given something” for being scared, but since I had already been administered Ativan on the way down and was looped to high heaven, I didn’t think he had enough tricks in his bag to win me over. The anesthesiologist kindly offered to put me under, and I took him up on it right away.

Now, I can assure you the sensation was nothing like I had imagined from my television-only experience of anesthetic. You know how when doctors say “pressure” they really mean pressure-like pain? Well, when they told me (as I took deep breaths of oxygen) that what they were about to inject into my IV line would feel “tingly,” they really meant I would feel an awful tingly-like pain throughout all my veins and up into my mask down my nose and throat; but before I could even so much as cough, I was out.

I’ve often wondered if I would be one of those people who question where the heck they were when they woke up from something like that. (I learned I am not). I knew what had happened, where I was (well, in the hospital, I had never been in that exact room before), and that I felt like I had been shot in the chest. My neck was also sore, as I wasn’t told until right before I went in that that was what the procedure entailed (I guess they can’t just follow your vein as they go along, like they do with a PICC, they need to stop halfway through to re-route into the right vein so it ends up right in your heart.) I was quite horrified to see the bandaging on my neck, as it was made to look like the tubing was bulging out from under my skin so far it was more disturbing than the lump the port caused in my chest. (Thankfully, that was just the way they bent the bandage, and the tubing is not very noticeable at all.)

See? Barely noticeable above my collarbone. 

(The IV tubing /scar is far more prominent!) And that's gauze...not tissue, I swear!!

Day one sucked. I was given a shot of Demoral in the muscle of my leg for the pain, so when I got home I felt like I had brutally worked out the one limb, the muscle was so sore. I was given other pain killers to take home, but even still my neck was so sore I couldn’t turn my head, or sit up on my own; that, and my chest kept me from moving my right shoulder at all; so, basically between the pain and the meds I was a bit of a zombie. Our friends arrived that night, but I am afraid I was even poorer company than I was for my parents the weekend before. 

Saturday (day two) I slept all day until 7pm. All that sleep really helped with the pain, and I had some mobility return, but I was still nursing my right side and drained from the previous day’s events.

I should add that my baby  little boy turns two this week, and being that we are away, the festivities have been stretching out over the entire month, mixing in with Easter (in wherein he was far too spoiled with gifts—something we were trying to downplay in our efforts to teach him the true meaning of the holiday.) The men spent all day preparing a “birthday party” for our little guy, including making and icing a dump truck cake (from scratch!!) and buying matching balloons and wrapping paper for the gifts. Our neighbour-friends came over for cake and presents, and everyone was so kind to accommodate me by bringing the cake in my room as we sang happy birthday, and again later so I could watch the gifts being opened. Our efforts about Easter will have to be revisited, I suppose, as when the day was done, after filling up on chocolate cake and staying up late to play with his new toys, my little/big boy left the room waving and saying, “Happy Easter!!”

Birthday boy eating his cake

Monday I went in to get my port accessed so that we could begin using it. I had my dressings removed, and my incisions had healed up quite nicely (and quickly!) to my relief and surprise. I was quite nervous to have the needle enter into the port, but the worst of it was the nurse press down on my tender skin, trying to find the centre of the port and hold it still.  The needle hurt for a second, and then the strangest sensation once it had entered the port itself...as though that was right where it was supposed to be; it felt “right” somehow. I’m guessing like the idea of having a dislocated body part re-set; painful, and then everything is right where it should be. Anyway, we were educated on how to use it, and sent on our way. I had the first use of it that night, and it was great! No beeping machine, angry at me for bending my elbow, no fumbling single-handedly to wrap a sore arm up for the night. I do look even more robotic than with the PICC line in, but it is low enough that I won’t have to wear turtlenecks this summer to hide it! I found out Tuesday morning that I can still sleep with my IV running, despite its new location—yet another bonus!

I want to thank you all for your prayers; they got me through what was probably the scariest experience of my life, to date. You can be confident we are praying for you all!

 "Gee, guys, lay off the pictures...can't a guy enjoy his bottle in peace?"

Blessings and lots of love,

Kate

For I know the plans I have for you,” declares the LORD,

 “plans to prosper you and not to harm you, plans to give you hope and a future. 

 Then you will call on me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  I will be found by you,” declares the LORD, “and will bring you back from captivity^. 

~Jeremiah 29:11-13

Life With Lyme Documentary

As requested: the video from the "When Life Gives You Lyme," fundraiser! Special thanks to Ruth and JD for working so hard to get this up and running,

And, without further ado: http://youtu.be/Kca781n9ZZc

I thought I would start and end this post with good news. Well, at least in the sense that no news is good news, right? We have yet to hear back about the bacterial culture done on my malfunctioned PICC line from 2 weeks ago, so I am taking that as a good sign. We met with our surgeon who couldn’t confidently assure us that we wouldn’t have the same problem again; apparently they use the same lines all across Alberta, and I am not the first patient who has experienced difficulties leading to removal and reinsertion. I was presented with the option of having a central port (or “Port-a- Cath”) implanted under the skin in my chest. Like so:

Because it is under the skin, it needs to be accessed by a needle (with IV tubing attached) and remains in the skin for a week before requiring a dressing change (similar to the duration of the PICC line dressing lifespan); only this time, a dressing change involves removing the IV tubes by pulling the needle out and getting them reinserted by getting stuck with a new one. This makes it much more sanitary (smaller hole for infection to get into). It can last under the skin forever, so if I end up needing treatments/hydration less frequently, I can just remove the IV line and not need the dressing/tubing in my way. Eventually when I am finished with it, I can have it removed.

The downsides: a two inch scar on my chest. A gross looking bump: (http://upload.wikimedia.org/wikipedia/commons/thumb/e/e7/Port-catheter.jpg/220px-Port-catheter.jpg), and getting poked every week.

The pros (as compared to a PICC): I can lift more than 10lbs without causing my incision damage. So as I get better and can do more, I will actually be able to DO more! I am hoping I can cover it more discreetly; I do not have to worry about 

kinking the IV tubing when I am hooked up to the pump (and heaven forbid bend my elbow to read, or type, or crochet!); there is much less worry over infection, and it is all-in-all more reliable.

I have my surgery scheduled for April 20^th (next Friday), and I’m scared. They don’t put you under, just local anesthesia and something to make you loopy/notice less. Please pray all goes well, and that I get over this grossed-out feeling I have at my mental image of what it will look like.

Good news:

1.       My parents are in town!! Yay :)
2.         My Neighbour-friend rented me a wheelchair, so on my “good” days, I can get out and go for walks with Jack, and maybe even out shopping!
3.      My mood is much better these days. I don’t know if it is because I am healing or because of the gorgeous weather here, but I am feeling less burdened and more positive and hopeful than I have been in over a year.

I pray that you all had a joyful Easter, filled with the hope and promise of new life!

Blessings,

Kate

 “But let all who take refuge in you be glad; 

   let them ever sing for joy. 

Spread your protection over them, 
   that those who love your name may rejoice in you.

Surely, LORD, you bless the righteous; 
   you surround them with your favor as with a shield.”

~ Psalm 5:11-12

I just want to thank everyone who answered my facebook plea for prayers at the last minute yesterday. I had a minor freak out at the hospital and it sure helped knowing you were there for me J I figured an explanation was due, so here it is:

Saturday night, as Matt was flushing my PICC line to begin my evening IV, the line malfunctioned and suddenly my arm, and the bedding beneath it, was soaked! We couldn’t figure out what had happened until I noticed saline under what was supposed to be an airtight bandage; the line had burst in some way-- how and where was beyond us!  We called our Neighbour Friends and they came rushing over (almost) to our rescue.  As everyone sat on the floor around my bed, we decided to forgo the Emerg at 10:00pm (based off of previous experience, they wouldn’t know what to do besides remove the line—and we wanted to stay as far away from that option as possible!) I still had one working port to administer to; so, we drained the saline from the bandage and taped my arm to mummy proportions while I prayed for it to remain sterile until at least Monday.

Sunday night I was feeling awful: loopy (from my pain meds? Still not sure about that one); a weak pulse; dizzy; weak; difficulty breathing. I was deliriously tired but could not win the fight with my OCD as I stayed up until 2am. Once I went to bed for the night, I lay there, unable to sleep until 5am. Four short hours later I was up to head out to a doctor’s appointment, and then the hospital to get my line assessed.

Once again, my doctor was very pleased with how I have been reacting to the medication (she was expecting, based off of my symptoms and her experience, for my Herx to be much more severe.) This time, we were given hope that if things continue this way we would get to come home “sooner rather than later.” (Wonderful news, but oh how I wish there was a number that translated into!)

We headed over to the hospital after, and before we got there I noticed the saline had eaten away at the glue holding the plastic dressing down over my PICC. Instead of being airtight, there was a clear pathway of air all the way up to my incision. The nurses inspected, tried flushing it for themselves, and then left to call the surgeon to get orders on how to proceed. JUST before our lovely nurse came back, another poked her head around the privacy curtain and said, “so, you’re getting your line out today, eh?” All I could say was “...I don’t know, that’s why they are on the phone with the surgeon!” As soon as she left, I promptly started to cry. I knew what it felt like to have a PICC line going in—I couldn’t imagine what it felt like to have the plastic “vein” removed! 

As it turned out, it did have to be removed. It was scary for a few reasons. First, the two lines weren’t locked where we thought they were, meaning it had been open to infection for two days. Second, as soon as the old dressing came off, I was to have the line removed (which I felt entirely unprepared for!) I asked if there would be any freezing, but the nurse kindly told me that it wouldn’t feel as bad on the way out, as it had already cleared itself a pathway on the way in. So, I said a Hail Mary, held Matt’s hand, and was told to, “take deep breaths in... and out,” until finally, it was done. I barely felt a thing!  We looked at the line and sure enough, on the underbelly of it was a 4mm break in the tubing. Yikes! Part of the line that was near my heart was collected to have a bacterial culture done to make sure that I don’t have an infection that needs to be treated before we proceed with getting another line put in.

So, while I wait for the results and the new appointment to follow, a temporary line put has been put in my hand (kind of like the ones they poke you with at the hospital, only with a tube leading out so we can hook it up for IV’s at home). It’s funny... after a month of getting used to my PICC line slowly becoming a part of me, I honestly feel like something is missing now! Hopefully we won’t have to wait too long to get the surgery set—I have no intentions of getting used to this pain in my hand!

Matt is home for the next two weeks, and our nanny went home to Edmonton for Easter weekend/her week off.  Jack is so happy to have his Daddy back; every time he heard an airplane overhead he would say, “Plane. Daddy? Work?” It was adorable and heart wrenching at the same time. We’re both glad to have him home! The last (and only other time) I was away from home for Easter was when I was honeymooning in Venice, 3 years ago...getting bitten by a tick. I missed my family then, and I sure do miss them now!

Praying for you this Holy Week; that you will experience Christ in a new way, and open your hearts up to Him as He did for us!

Blessings and love,

Kate

“I waited patiently for the LORD; 

   he turned to me and heard my cry. 

He lifted me out of the slimy pit, 

   out of the mud and mire; 

he set my feet on a rock 

   and gave me a firm place to stand. 

 He put a new song in my mouth, 

   a hymn of praise to our God. 

Many will see and fear the LORD 

   and put their trust in him.

 Blessed is the one 

   who trusts in the LORD, 

who does not look to the proud...”

“Many, LORD my God, 

   are the wonders you have done, 

   the things you planned for us. 

None can compare with you; 

   were I to speak and tell of your deeds, 

   they would be too many to declare.”

~Psalm 40:1-5

Well I know I haven’t written an update in long time and the longer I leave it, the more I forget! Reviewing this, it is obvious I am at no shortage for words, so hopefully I’ve included all the juicy details!  (If you finish reading this, and you’re bored, thinking, “that was considered ‘juicy’??” please assume it’s because I left something out!)

 It has been 3 1/2 weeks since my PICC line was inserted, and it has finally reached a point where it isn’t constantly hurting and/or bleeding every time I move. I am glad to have passed that stage; it was upsetting, and not at all what I expected. I was quite disturbed by how foreign it looked and felt; how painful; and, how painfully obvious it was that I am sick. Up until a few weeks ago, there had been nothing really physically distinguishing me as ill. In fact, if I mustered up the strength to get all dolled- up, those who knew of my illness would likely think I was on the road to recovery. And while I suppose an arm is easy enough to hide, I still feel “marked” somehow. Even so, I am grateful the skin around this alien device has almost healed, and it is slowing becoming a member of my body. I would like to say it is an unnoticed member, but the plastic and layers upon layers of tape bandages, along with the crawl-out of-your-skin itchy feeling,  and being unable to lift more than ten pounds are all near-constant reminders of its presence.

 I was sent the prettiest package of armbands from my dear friend Ruth (pictures in the last post). They were custom knit by a fellow Lyme patient, softer and more comfortable (not to mention, attractive) than the burn wraps they send you home with from the hospital, and I am living in them!! I am sure they are a bit curious looking despite how attractive they are; so, if you see someone on the street with a knit tube worn around their bicep, they either have a PICC line underneath, or we have started a trend!

I started IV antibiotics the day after surgery, which is partly why I haven’t written much of anything since. I have been sicker than ever: my pain is worse (meds accordingly increased, which helps a little), I've been sleeping almost all day, waking only to eat and go to the bathroom, and then back to sleep until the evening-time. I still have the drive to stay up later than I should, but overall I was clocking in around 17 hours a day of sleep per day. I get hooked up to my IV meds 2 x's a day for 2 hours each time. On Tuesdays and Fridays I get extra fluids, so I am hooked up for three, 2 hour, intervals. The unfortunate thing is, in a carpeted home with five sets of stairs, it is really difficult to get around (not that I feel well enough to, anyhow!)  I have tried to do other things while the machine runs, but it gets angry and beeps at me for kinking the line by bending my elbow! I have learned to sleep with it running, so it isn't terribly bad. Apparently I am “lucky,” and faring better than most; although, the second month is foreseen to be worse as the bacteria will have come out of hiding and there will be more to kill off.

The one day I don’t get to sleep in is Tuesdays. I have to leave the house once a week to get my dressing changed, so that has become not only “dressing change day”, but also “coffee day” too. (On a side note, it is amazing how effective coffee is when you only drink it occasionally. It is by far my favourite drug “sometimes” food in our diet). It is a little crazy how important it is to keep my PICC line sterile so it doesn’t get infected, although understandably so; if it does, it will have to be removed and reinserted only after the infection clears up. So every Tuesday, Matt wheels me into the hospital to have my dressing changed, and the bandage that I just comfortably wore into the crease of my arm gets removed; everything underneath gets sterilized and swapped out (except for the PICC tubing itself). I am really nervous about infection and having to get a new line in/have my treatment set back that I am glad to do it, really. And the nurses there are so kind; they make it as pleasant an experience as possible!

Part of my paranoia stems from the day of my surgery, when a woman was in getting her PICC line replaced for that very reason; somehow, it had gotten infected, and had to be removed and replaced.  We sat there, waiting, and I was feeling surprisingly calm. Our lovely neighbour-friends drove us and were there to reassure me, as they had been down this road before. The husband of the Lyme patient in the operating room was a friend of our neighbours as well, and he sat in the waiting area, tapping his foot, waiting beyond what the surgeon had said would take “two minutes”. The time for my appointment came and went, and some speculation was starting to surface within the small talk being made. Sure enough, a nurse came out, pulled the husband aside, and said (audibly), “she’s having another one of her seizures; we can’t finish today.” So they wheeled her out, right past me, having the most violent seizure I've ever seen! So much for me not worrying! Less than a moment later, the same nurse came out: “Mrs. Thiel? We’re ready for you”. I had brought my rosary to pray in the event my nerves did get the best of me, but (as my Grandma would say) I was scared “spitless”; so badly that I couldn’t remember the words to the prayers. So instead, I pulled out a tiny cross, a gift that had often been held by stronger hands than mine, and clung to it for dear life. My procedure took longer than the estimated two minutes, but thankfully all went well, and continues to so far!

We have had some visitors here; our friends from down the street, of course, and the parents of a good friend back in Edmonton. The activity hasn’t been to the same amount or type as it was back home though. I am lonely, and I miss everyone terribly. So far, time is dragging by. Matt left for work yesterday evening, bringing his 3 months of stress leave to an end. I was so sad to see him go! On the bright side: my in-laws are here!! And I couldn’t be more grateful that they are. With them, they brought a sense of home; a lot of comfort, help, and joy (along with many items we forgot back in Edmonton, and presents for Jack!) And Jack was skipping and dancing and waving his arms in excitement to see “Papa!” (That is right, it is spoken each and every time with an exclamation mark—that boy sure loves his Grandfathers!)

Yesterday morning we had our 6 week check-up with Dr. Ryser . We drove the 5 minutes to our Doctor’s office here, and made a conference call to Kansas City. Everything is going better than planned so far; I have been feeling worse than ever in all the right ways, which means it’s working! Also, the Babesia they figured I had back in September (but was hiding behind the Lyme) has started to surface (in the form of horrendous bone pain and chest pain), which is also “exciting,” because we can work on treating that too. Unfortunately, both doctors said they want us here for as long as my Herxes are strong (I wish I knew the timeline for that!) It’s understandable, as it’s the safest thing to do, but boy do I want to come home already! When asked by Dr. Ryser how our Doctor thought we were doing, she said, “Just brilliant. They are a remarkable young couple, and incredibly brave. I can’t say I know of another 26 year old who would have the courage to take on what they have.” God bless her! What a kind and encouraging heart. Finally, everything I need in a doctor and more.

The past two days have been much better; previously, I couldn’t get out of bed; one day—I couldn’t even walk! I have been up and around the house a bit which is a huge improvement, sleeping less, and steadying myself for what’s to come. And with that, I am off to bed. I may not be sleeping 17 hours a day, but I still need more than half of that to keep this body fighting!

Prayers and love for all of you back home.

Kate

"For you will forget your suffering, 

recalling it only as waters that have flowed by. 

 Your life will be brighter than noonday; 

its darkness will be like the morning. 

 You will be confident, because there is hope. 

You will look carefully about and lie down in safety.

  You will lie down without fear, 

and many will seek your favor."

Job 11:16-19

A Picture is Worth a Thousand Words...

WARNING: if you are really squeamish-- you may want to skip this post! A brief photo journal of the past few days (with hopefully enough space at the beginning that you didn't get tricked into seeing something you didn't want to see!)

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Blessings,

Kate

"Blessed is the man who trusts in the LORD, whose trust is the LORD.  He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit."  The heart is deceitful above all things, and desperately corrupt;  who can understand it?  "I the LORD search the mind and try the heart, to give to every man according to his ways, according to the fruit of his doings." 

Jeremiah 17: 7-10 (Emphasis added)

Tomorrow, tomorrow...

Well, we had the consult with the surgeon last Wednesday. And despite his many questions, ("How do you think you got Lyme disease? When did the symptoms present? When did you get diagnosed?Who diagnosed you? What kind of symptoms do you have?"), he really was rather nice. And a lot younger than both Matt and I were expecting; his name led to a mental image of a dignified middle-aged man with grey hair, not someone who could guest star as "the Todd's" college roommate on Scrubs.  I know the Holy Spirit was there with me, because for once, I didn't feel offended or flustered (which is hard after being bombarded for years by doctors), and gave just the right number of passable answers mixed with enough incoherence to validate the authenticity of my case. He arranged with his nurse to schedule us in, and we were off.


 And while I am starting to feel a little lonely for the people back home (especially my Mom, since I would have seen her by now), I am settled. The house is unpacked, our nanny is better than I could've hoped for, Matt is happier as a result of less work on his plate, and I am feeling nearer than ever to God and His unwavering strength. 


Tomorrow at 3pm I will have my PICC line inserted. Tuesday I am scheduled to begin antibiotics. And finally, finally, I feel like I am nearing the end of the road. I still don't feel scared, which is a huge weight off after being afraid for so long. I know that God will carry me through the valleys standing in the way of the finish line.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be


 discouraged, for the LORD your God will be with you wherever you go.” ~ Joshua 1:9

Love and prayers for you all,

Kate