Surgery and Post-Op

Oh my goodness! Where to start? It hasn’t been long since I posted last, yet so much has filled the days, I am left without an accurate perception of time. Some days have gone on like weeks on end, leaving the next full of disbelief that, “that was only yesterday?”  So, in a sense, it has been far too long, and I will do my best to fill you all in.

We had a relatively pleasant drive down to see our doctor; dry roads; spring weather; and the beauty of Southern Alberta as our view. This time, for a variety of reasons, Jack stayed in Edmonton with his grandparents. It was hard on my heart to be away from him for so long, but worked out really well for both Matt and me; as we orchestrated trips to the hospital and doctor, in between my needing to rest and recuperate at the hotel, with greater ease.

Surgery this time hit me harder than last. I was scheduled to go in for 1 o’clock, and planned to sleep every moment I could up until we had to leave. However, around 9:30/10 a.m. we got a phone call asking us if we could be there right away, as they had a cancellation (which we later found out was due to the previously scheduled patient having a Coke for breakfast!) So, we scrambled to get ready and to the hospital for 10:30. My dear friend, who visited me last time as I waited, made plans this time to do the same. It would help keep my mind off of things, and be a good time to visit before I was down and out from surgery. Even though she could come early as well it didn’t quite work out the same this time! We basically got there, signed in, got changed; interviewed; and I just had time to take off my toe nail polish (thanks to my friend bringing me remover and supplies—I had completely forgotten!) before getting whisked away. Each nurse I encountered said, “isn’t it great you could come early so you didn’t have to wait all day?!” As I thought to myself, “Um, I was going to be sleeping, not waiting...” But, I suppose I ended up sleeping anyway!

I spoke with the main surgeon who asked where I wanted the new scar to be, and was able to ask him to try to reduce the scarring that was already there. We later found out, after him questioning, that my scar looked so bad because one of the meds that I was on contained steroids, which can cause an overgrowth of scar tissue. So, while he said he would do his best to minimize it, he left the “healing it well up to [me].” 

The anesthesiologist was one I hadn’t met before, and basically gave me two options: get local freezing and some sedation; which would keep me awake but “unaware” (yeah, it doesn’t work like that for me. I have had it done for other procedures before and I was more than “aware,” thanks); or, I could be “put under.” “Put me under” I said, knowing that I did well with it the last two times, and that I couldn’t mentally handle being awake for this surgery. Well, I’m not sure what the third option was (or fourth, or fifth, or how many others there may have been), but while this one started the same as the other two (an IV and deep breathing of a tingly gas); it ended with me waking up to a sore throat because I had been intubated! Not something that I thought was part of the plan. It paled, however, in comparison to the pain in my neck and chest.  They must have read my chart, since last time it was Morphine, Morphine, Morphine, Demerol before I got relief; and started this time instead with Demerol, Demerol, Demerol—Morphine, Morphine, Morphine—NOTHING IS HELPING! Each dose only served to make me loopier, and barely touched the pain. I was drugged sky-high and in so much pain it wasn’t funny. So they brought out another derivative of morphine (dihydromorphine?) and topped me up with that, hooking me up to an oxygen tank at the same time, as the narcotics were affecting my oxygen levels. They wheeled me back after some time, and I got to eat (I thankfully don’t get nauseated from anesthetic, which is a huge bonus since they make you fast for so long beforehand), and sent me “home” to our hotel.

Double-lumen ending

The next two days went rougher than last time; I didn’t bounce back as quickly, and as a result, had to cancel plans to visit while we were there. I slept, took pain killers, ate, zoned out in front of a bad movie, and slept some more.   We had an appointment to see our doctor and have the site assessed (most especially because they couldn’t get it to stop bleeding the day before). I asked questions such as why there was only one lumen (tube on the end) instead of the two we talked about, and wondered aloud why there was no butterfly clasp sutured to my chest to keep the catheter in place. The answers: only one lumen is necessary unless one is on dialysis, and that there was a “cuff”—a thicker piece of polyester tubing—under the skin that my body would heal to; keeping germs out, and the catheter in place. I just had to be careful with the tubing until it healed. Even after healing, it had to be handled more delicately than a gripper tubing once did—which meant no more using a spaghetti strap to wrap it around and out of the way.  Our doctor carefully changed the dressing, was satisfied with how good the site looked, and that was that! After discussing a reduction in the medication that contains steroids (which I was on to pump up my adrenals and give me more energy, something I don't lack as badly as before) we decided to slowly wean off until I felt I needed them, or I was off of them completely! The next morning we packed up; stopped for lunch date; and  headed home to the child, and the bed, that I missed so much.

First pair of glasses EVER! So handsome

Because I was starting to feel a little bit better, I came down with a head cold (Murphy's law strikes again!) It wasn’t until Friday that I made it out of bed, and out of the house, for a quick trip to the mall to get Jack’s new glasses fitted. I didn’t need to be there, but felt that this was a "mommy moment" I couldn’t miss. I faded fast, and we left the mall shortly after his glasses were ready. I knew I felt run down, but besides walking, I hadn’t done anything strenuous. When we got home, the ritual of stringent hand washing and immediately changing our clothes took effect; only, when my shirt came off, I noticed my catheter tubing was way longer than before. Upon closer inspection, I was sure I could see what they called the “cuff,” laying against my tanktop—not only outside of my body, but outside of the sterile dressing! I called Matt into the room immediately—my level headed, down-playing husband, and showed him. “Oh BOY!” was his response. I knew it was bad.

Close up of the cuff 

We are so fortunate to have our doctor’s cell phone number, because at 9:30pm on a Friday night, we were able to call her an inform her of our emergency. She paused several times, indicating the seriousness she felt towards the matter, as she asked us measured questions. How far out was it? Was it still under the dressing? If so, could we just push it back in? “Three inches, no, and definitely not!” were my answers. Every time I looked down at it, I felt sick. Even if it was still under the dressing, I couldn’t have been the one to thread it back in unless it was only on the verge of coming out. My mind was racing. How could this have happened? I carried a light purse—on the other side of my body; I made no sudden movements (it would have hurt too much). I was careful not to lift Jack, even when I was sitting down. What was going on? (And a little bit of, You’ve GOT to be kidding me! Thrown in for good measure.) I was so exhausted from going to the mall while still recovering from surgery, and nursing this head cold, that there was no way I could handle the ER that night; so I was very grateful when she told us to “cover it with a [clear] dressing and go first thing in the morning.”  Which is exactly what we did.

The next morning, we dropped off Jack at my brother and sister-in-law’s house to “play with [his] cousin,” and headed to the ER.  Still exhausted, but grateful for the sleep I did get, we began our plight into the medical system. Thankfully, we didn’t have to wait long to get a bed (around an hour or so?), and a cheery nurse came in and asked what the problem was. I showed her my line, explained I had it because of Lyme Disease, and on we went.  Routine blood was drawn; and after some time, the doctor came in.

The “usual” interview was conducted. Where did I “think” I got Lyme, how long have I had it, when did I get diagnosed, what medications am I on, etc, etc? He had already pulled a list of my medications off of NetCare (online system that all doctors can tap into and see your Albertan medical files), but when I told him I was taking heparin, he seemed surprised. “What for?” he asked. “For coagulation problems,” I answered. “From what?” he inquired, and began to list off several different diseases. “From Lyme,” I told him, going on to explain that it makes one’s blood thick. “Oh, I didn’t know...” he began, trailing off as he thought the better of expressing his lack of knowledge.  And away he went.

Back came the nurse, after a group of them had crowded around the doctor, pouring over my history on the computer. This time, she had a Lyme testing kit in her hand. “Okay, dear, I’m just going to poke you one more time...” she said, chipper and sweet. “For what?” I asked. “For Lyme” she answered. “Oh, no thank you, I already have Lyme! No need for that,” I smiled, resolved in my position. Somewhat flustered, away she went.

Enter nurse #2:  Lyme kit in hand. “Just so you understand, the doctor,” (who was no more than 10 feet away on the other side of the curtain) “wants you to have the test done, because according to your file, your test for Lyme came back negative in 2011.” Sigh. “I know,” I explained, “I was tested with the C6 ELISA test, which is only slightly more accurate than the standard ELISA test—which provides a 50% false negative—because it tests for three of the 100 North American strains of Lyme, vs. the one that the ELISA test does. However, because I got bit outside of North America, the test will not come up positive for one of the 300 strains worldwide that I have caught. So I don’t need to take the test again, because I know it will come back negative.”  And away she went.

Time passes. Enter doctor once again. He also mentions the test and why he wants it done. I reiterate what I told the nurse, and explained that was why I went to the States for treatment.  “Oh where?” he said, sarcastically, “California?”  (Apparently there has been a e-mail recently circulating to doctors across Alberta—if not Canada—stating that Lyme treatment is only necessary and worthwhile for a maximum of 2 months, and that certain California laboratory testing measures are providing false positives.) “No,” I replied, “our specialist was in Kansas; and she sent for testing all over the US and Germany.” Now that he had nothing to say to that, he moved on to scare tactics. He told me how dangerous it was to have this kind of surgery done in the first place, and that I am only 28, and too young to die! He mentioned previously in the day that he had never seen a Hickman line before, but now went on to say he watched a girl bleed out on the operating table during the insertion of one of these, and nothing could be done to save her. Sure, it was a small chance—but still not one he thought I should be taking (you know, with a negative test, and all).  

After a consult with a resident surgeon (who was afraid of me  contracting sepsis from trying to save the line); an x-ray to detect  where the catheter lay inside; a blood test to see if the line was in a vein or in an artery; and “securing” the tube with “latex-free” tape (I asked); the emerg doctor decided it was best to pull it out.  He would have “sent me back” to where I got it put in, but he was, “afraid the catheter would nick the vein on the drive there and [I] would die in transit,” so, he was willing to do me the favour.  At this point, I had been assigned the male nurse; the catheter manual was read; the LATEX tape was removed (leaving welts that lasted well into the next morning); and Matt watched as what was supposed to be “slow, even pressure” during removal turn into the doctor pulling my line out like he was starting a lawnmower. For 10 minutes after (this was NOT in the manual), he had the male nurse put all his weight behind his hands, and on top of my fresh wounds on my neck and chest—for 10, full, timed minutes (you know, so I wouldn’t die of internal bleeding). It was excruciating and completely pointless for him to be laying into my fresh port scar, as it had nothing to do with the pathway of the line, or the exit wound he was supposed to be putting pressure on an inch above it.

The ripcord: i.e. my old Hickman line

Now, before thinks I am not taking this seriously (as the emerg doctor believed), I do; and I am always grateful when one errs on the side of caution. But when our 3 hour wait “to make sure there aren’t any complications” turned into a 5 hour one simply because they didn’t want to let me leave 10 minutes early (and would be busy for the next two), my frustration mounted. Nevermind the fact that they didn't check on me or my vitals once, which is why we were there! Through the prayers of everyone out there, and my own, I managed to stay firm, and mostly pleasant throughout—at times much to my own surprise! In all of the discomfort and anxiety, God was there. 

An hour into being "monitored;" exhausted

When we finally got home at the end of a very long day, we emailed our doctor down South. She said she will have to discuss it with the head surgeon on Monday (yesterday), but it isn’t likely he will want to do another vascular surgery on me, when two have failed in such a short amount of time; so we may be looking at a PICC line after all. And while I strongly dislike PICC lines, I do like the lesser amount of pain, scarring, and recovery that come with them. Only time will tell. Until then, my veins aren’t good enough for peripheral lines anymore (to my knowledge), so I will be in dehydration pain from lack of IV fluids until we get this figured out.  So now: we pray, we wait, and we pray some more.

Remember this guy?

If you would join your prayers with mine, I would greatly appreciate it.

Blessings and love,

Kate

One day, it will be me saying this:

 But for now,

Style, Swimming, and Surgery

Once again it feels as though it has been too long since I last touched base. A lot has happened since I posted last; good and bad. In case you haven't noticed, my blog has undergone a major revamp. (I will let you decide if that is good or bad!) As for the rest of things, I will start with the good:

After weeks of leaving my port un-accessed (no gripper needle in it); going for gentle massage; and not having IV fluids pumping through it, the pain on the right side of my chest decreased slightly. Since it wasn’t accessed, I was able to partake in Matthew’s birthday festivities, at The West Edmonton Mall Waterpark! For those of you who don’t know, my husband and son go swimming together at the local pool, often  more than once a week. I had only recently been given the go-ahead to join them (my immune system and body were just too weak before). It was a family activity we could finally all do together— and I was so excited! It was so much fun, and I not only got to play with my godsons and nieces in the kiddie pool, but I even got to go on a few slides! The worst part was the number of stairs I had to climb to get to each one (and boy did I ever feel it the next day!) but words can’t express how grateful I was that I got to go. It wasn’t as carefree an experience as I imagined, with all of the pain I was in, but none of that mattered when I got to see my son put his head underwater for the first time as he "swam"! 

It came time to try to access my port again, and not only was it super painful having the needle go through (it usually isn’t very bad), having fluid flushed into it hurt as well (usually don’t even feel it). We came home to attempt using it at a lower infusion rate (pumping slower than usual), but quickly noticed the pain was back, much to our disappointment.

All of this time I have been praying, worrying, and asking for the intercession of others so that I might avoid surgery and the additional pending scar I was sure would come with it. There are lots of positive ways to look at scars, and granted, they could definitely be bigger than this, but none of that mattered to me at the time. In what sounds like good news, my prayers to keep the scarring to one side of my chest were answered.  I say, “sounds like,” because to me, it is not.

You see, my prayers not to need a new port were answered; however, a surgery is still required. Apparently, a port is not the best device for my medical needs. The amount of times I get it accessed (read: poked); combined with the fact that I have it pretty much permanently accessed (but for a few hours on the day of a dressing change); not to mention the quantity and frequency of fluids I am pumping through it; is all way more than what the device was created to handle. Did they not know how often I would need it accessed before putting not one, but TWO in?! Don’t worry, I asked. As for an answer, it wasn’t a clear one. Basically, the ideal use for a port would be, for example, chemo. It would get accessed approximately once a month, used once a day for about a week, and then removed for the remaining 3 until the next round starts again*; and it isn’t needed for months and months on end. (*Note: please forgive any ignorance of the ins-and-outs of chemotherapy on my part, and any false impressions I may have given about it.)

If a PICC line was an option again (on their side of things, not mine—I detest the things!), it was not mentioned.  I was worried that it would be brought up again, and was ready with my laundry list of why I dislike them so strongly. Little did I know that list would come in handy anyway. You see, they don’t want me to get a PICC line again: they want me to get a Hickman catheter. I thought the emotion I previously held for PICC lines was hate. The Hickman has had me redefining my feelings. A PICC line? A PICC line I despise. A Hickman? A Hickman I HATE.

The Anatomy of a Hickman Catheter 

What is a Hickman? A Hickman is similar to a PICC line, in that it is a free-flowing tube from the inside of a vein, to the outside of one’s body. Only this time, instead of my bicep, it will be in my chest. Vanity? Ha! Vanity... I thought parallel scars would be bad, but this?! The thought of this— of me looking like this—it makes me want to throw up. For some of the few that I have spoken to about this, I am sure it has been difficult to understand why I feel so strongly against it. A port isn’t exactly the epitome of beauty either—far from it. But it is concealed; what is inside stays inside, and what is outside is purely medical device. With a Hickman, there is, although small, a permanently open wound. Nothing to keep me separated from the vulgarity of what exists; nothing to keep me from feeling somewhat “normal,” at least on occasion. 

Warning: photograph of a Hickman below

The news came in the form of an e-mail. It was unexpected, and to-the-point. For the first three days after reading the change of plans, I was engulfed in depression; a fog that permeated my being, and left me unable to think of, or see, anything else. Was there no other choice? Surely this couldn’t be the only option! I slept, researched, cried, and slept some more. Finally, I was granted a phone call with my doctor. If nothing else, I could gain a better understanding; prepare myself. And so it went, that there was no alternative; and what I am sure she thought to be the (small) consolations of, “it [being] a less invasive surgery” with the following option of, “[covering] the wound with clothing” to hide all that I find distasteful (from everyone, that is, but me). All I had read about it limiting me by putting restrictions on the amount of weight I could lift, and on some of the activities I would do as I continue to gain health, were apparently false. The one truth in what I read was somewhat obvious to me: my newly acquired freedom to swim (when my gripper is removed) was being snatched back; leaving me devastated.

While having a Hickman line inserted is less invasive than having a port insertion done, I will be getting my port removed at the same time, so we aren’t quite sure what to expect in terms of recovery. The new catheter will follow the same path as each of my port catheters did, so I am not sure if that works in my favor or not (in terms of pain and healing). I am hoping that they will be able to reduce my current scar from my port(s) when they take it out for good this time. I’m no surgeon, but I have seen some fantastic plastic surgery on TV, and while my doctors aren’t trained professionals in that field, I am fairly confident that they have some type of scar reduction techniques up their sleeves.  Though to be honest, that is the least of my worries. As long as I am getting better, this scar is a battle wound; and a positive one at that.

The date is set for Monday, March 17^th. At least with my heritage, I will have a little Irish luck on my side ;) I have been trying to pack in as much as possible before the big day; and despite an extremely painful chest from a slipped rib on one side, and port issues on the other— I had a few very successful days! Of course, now I am recovering from them with a lovely ol’ Herx reaction, but each moment was worth it. I even got a little driving in— for the first time since October!

I am slowly coming to accept that this is happening (being okay with it is a whole new ball game!) So if you could all continue to keep me in your prayers, they are what keep me going. You can be assured of my prayers as well; and as always, requests are welcome!

Blessings and love,

Kate

“When we shall see Him in Heaven, then we shall understand the price of suffering and trial. Like Jesus we shall say ‘it was truly necessary for suffering to try us, and bring us to glory.”

–St. Thérèse of Lisieux

“Hear my prayer, O Lord;
    give ear to my supplications in your faithfulness;
    answer me in your righteousness...
For the enemy has pursued me,
    crushing my life to the ground,
    making me sit in darkness like those long dead.
 Therefore my spirit faints within me;
       my heart within me is appalled.

I remember the days of old,
    I think about all your deeds,
    I meditate on the works of your hands.
 I stretch out my hands to you;
    my soul thirsts for you like a parched land.”

Psalm 143: 1, 3-6