It's like a dance, this recovery thing; and for me, that doesn't mean a graceful flow of movement...
I may have gotten a little over excited about life last week - getting my licence (freedom) back & feeling well enough to start doing more things. Ask anyone who knows me well - I don't do anything by halves - it's either at 120% or not at all. So on Saturday, I went full throttle, it was a great day but I was absolutely shattered by the time I got home. The trend continued though & I decided I really needed to start doing a lot more for myself so I hung out clothes, cleaned the kitchen & bathrooms, dusted, vacuumed. Mum had a lot to say about all of that but I was sick of feeling dependent. But, I found myself extremely sore most days, some days by very early afternoon.
On Monday night, I woke up with a choking sensation - I managed to get back to sleep but woke up again in excruciating pain down my left arm, across the left side of my chest & back. We called an ambulance & away I went. Thankfully Charli, who had had temperatures all night, stayed sound asleep during the whole thing & Nelson assisted in that by not fussing over the ambulance officers. It turned out that my left lung had re-collapsed & had fluid at the bottom of it which they informed me could well have caused that amount of pain. I was thankful it was nothing to do with my heart but frustrated to hear about my lung.
The hospital trip & CT scan I had there led to some extra information which I talked about with the GP. A CT is NOT the mode of examination used to confirm the presence or absence of the defect in my heart, I will have another echocardiogram to do that BUT my CT showed no signs at all of the defect which previously could be seen. I'm trying not to get too excited about that but also feeling hopeful! The CT results also stated that the sternum fusion was incomplete... I casually mentioned that to the doctor, just checking it was okay at this point. She looked almost sorry for me as she explained the bone there wouldn't fuse back together until the 6-9 month mark. THAT news certainly made me want to slow down. I went to meet a friend for lunch & do some painting at the hobby store after that which made me feel a lot better & it was nice to be out of the house.
Friday's plans had been on the cards since last week. I told Jake I was desperate to go to the BookFest in Brisbane. So, Jake asked for a days leave & we planned to go into the convention center & nerd out, maybe have some lunch... We got there, picked our first section & split up to cover more ground. I probably should have hired a trolley because I was stuffing books in my bag - then that was full, so I just started holding them. I very quickly got faint & felt so nauseous. I called Jake, who ran across the section to my rescue. We headed for the check-out then, satisfied that we'd done enough in that particular spot. I told Jake I might just have a seat outside while he paid, I was feeling worse by the second. The good people from Lifeline had really done a great job this year with a "revive" area full of couches. I plonked down on one, breathing deep to stave off the nausea. The lightheaded feeling only increased & I ended up slithering onto the floor, much to the dismay of some of the other book buyers. Jake came from the check-outs & I asked him to find me a sick bag because I didn't feel I could make a trek to the toilet. That caused a flurry & I ended up with a beautiful security guard, Cheryl, sitting with me while Jake went to get my something sugary from the cafe. I'd simply overdone it - with a bit of pain, not enough energy in general & low-blood sugar I ended up crumpled on the floor, leaning against a couch eating mouse sized portions of a blueberry muffin. Jake had taken the day off & we had driven all the way in here for this, there was no way in hell I was just heading home. So while I slowly & quietly regained some strength, Jake hit up another section for the both of us. By the time he returned I was well enough to very slowly go through the last section with him. We hired a trolley this time & things were a lot easier that way. Another stupid thing we done was park under South Bank. In the spirit of wanting to get lunch & planning for it to be the last place we were at, it seemed logical at the time. So, Jake carried 4 bags FULL of books (56 to be exact) the two block walk back to the car. Ladies, if this isn't your man, get rid of him...
We did end up stopping off for lunch (late lunch thanks to my episode) & running a couple of errands while we were at the shopping center. We then grabbed Charli from daycare early & took her to the park. Needless to say, last night I felt like I'd been hit by a Mack Truck.
Today I took things much easier & even uncharacteristically asked Mum to come by this morning while Jake worked to help do some washing & vacuuming. Thanks Mum! I'm still feeling extra sore tonight & it's a bit of a sign to say slow down, I think. As much as I want to do things, going too hard, too fast is only going to make recovery slower & more painful.
There have been a lot of peaks & valleys this week but here's to a slower, more restful week ahead. No bookfests to be crazy at, only
light house duties & fingers crossed no hospital visits!
Every-day tales in the life of a girl finding her feet in this crazy & beautiful world...
Saturday, 22 June 2019
Friday, 14 June 2019
The Bovine Patch Chronicles Part IV: 4 Weeks Out
I'm comfortably walking 1.5km a day & although my recovery book still suggests that distance for another week, I'm feeling good enough to kick it up a notch & see how I go with 2km. My range of movement isn't 100% but I have enough back to not struggle as much with things like drying myself off after a shower or putting my seat belt on. I'm still restricted with what I lift. For the next 2 weeks I am completely restricted, not able to hang out heavy washing or take the bin out. Following the next fortnight though, I can gradually work up to lifting heavier things but all up it will still take another 8 weeks from now until I can start to get anywhere near back to normal. LONG ASS ROAD.
Today I was able to convince my GP to give me a driving clearance. I had to do an interesting jumping test. No joke, they make you jump on the spot & if you don't have pain, they allow your licence back after a minimum period (funnily enough, 4 weeks). So I held onto the girls & jumped on the spot, confident because I wanted my licence back but also waiting for my chest to cave in because, fear. Obviously I can't go road-tripping but I will be able to take Charli to daycare & get myself to the doctor & local shop if I need to. It's a massive turning point for me to have some independence & freedom back. I imagine it will be another taxing task that will add to the soreness at the end of each day but it is totally worth it.
So pre-op I joined the gym. I was advised to get my leg strength up as I wouldn't be able to use my arms to get out of bed or off the couch, I also have to get up completely to readjust myself every time I want to shift the way I am sitting... So I went & smashed my legs for weeks leading up to surgery. I'm so glad I did I have to pick anything up off the floor by squatting & I'm able to get up off the floor without needing to hold onto anything. This has been wonderful in cheating my recovery book a little. The book stated I shouldn't have a bath for at least 8-12 weeks post op as I can't start to support any of my weight until around then. Yeah, nope. The bath is my haven - any time I feel anxious the bath is one of my first go-to's, I read in there & still jump in with Charli a lot. This week I couldn't wait any longer so Jake & I tested it out while the tub was dry. It was a little sketchy & I almost didn't try it again but I caved and thanks to my crippling work outs I can twist & stand on my own from laying in the bath. Like a bad-ass. So that is one exciting step back to normal life & I've enjoyed 4 already - reading books, singing "Let it Go" with Charli & fighting Nelson away as he tried to drink my bath water. On a serious note though, it is really hard to properly hug & do things with Charli at the moment & being able to be close to her & wash her hair, which we make funny, has been a real mood-lifter.
On the subject, mentally & emotionally I am better. Certainly far from 100% & mostly struggling at night time. I find it hard to concentrate so distracting myself with a book or show is actually really frustrating & often makes me feel worse, so I cry while Jake snores beside me, already better for the fact that he still chooses to sleep on the couch next to me instead of in the comfy new bed we bought so recently.
I think my sleeping arrangement had a lot to do with how I am feeling - I can't lay flat on my back - the pain is actually excruciating & my side although not ridiculously painful is way too uncomfortable to sleep on any time soon. I'm a stomach sleeping through & through & not being able to stretch out my very tight, very sore back is frustrating beyond belief. The GP confessed today that it can often take up to 3 months before I can lay flat for a start. By night time I am tired & super sore. I don't want to be on heavy painkillers but panadol is pathetic & I am banned from having nurofen for a while yet. So I've been having half of an endone on the nights where I can't fall asleep without it. It's currently a fine line between trying to stretch & strengthen during the day but not so much that I am aching through my whole chest at night. On the bright side, I was cleared to have my neck, shoulders & upper back massaged as long as I am in a chair & not laying down (obviously!) I'll be seeing the lovely, i.e. TERRIFYING ladies at the local massage place in the next week to try & alleviate some of those issues.
I also got the shits with having my hair not properly washed (my drain sites are still a little yuck & the GP doesn't want them to be wet where possible & it was also hard to wash my hair properly at the length & thickness it was, hands above head is also still a stretch. Soooo, I cut it all off. I can't actually tie it back its so short & I'm loving the ease & lightness at the moment. Thankfully Jake liked the surprise... It was a surprise for me too - I went to the salon to get a nice proper wash & walked out missing several inches off my hair.
So really things are going pretty good. I cannot believe I hae come so far in so little time & the horror of the hospital & first week home seem like a lifetime ago. Thanks so much again everyone for all of your support & love in what has been one of the hardest things I've ever had to do. xo
Thursday, 6 June 2019
The Bovine Patch Chronicles Part III: Recovery at Home
I didn't Google anything about it because I knew I would read something I didn't want to, but I did make the mistake of joining a Facebook Group for my specific defect. WELL... It was a host of horror stories, mostly about plug closures via the artery. The amount of people who had to go back more than once for the procedure was phenomenal & I was in no way prepared to have my ticker played with multiple times to only end up having open heart anyway (quite a few people had this happen). Needless to say I ended up leaving that group within a week & although I was already mentally prepared for open heart surgery, this gave me the mindset that despite what the tests showed & what the cardiologist said there was no way I was going for anything less than what was going to fix it. I was prepared to question the plug option were it presented to me.
And so, throughout all of the tests & procedures, all of the preparations, despite all of the fear & anxiety about the whole situation, the logical side of my brain always won out. Everything was a question of what needed to be done & how to see it through. The worry could come later. After my angiogram/heart catheter, I knew it would be mere weeks until I had the actually surgery; and because I'm a planner & a stress-head, I was all over that. Leigh, a nurse from the surgical bookings team at the hospital got well acquainted with me over the next week & a half. I could hear her sigh & frustration every time I called. She was never rude but I was certainly being a squeaky wheel - I wanted to be oiled! The pushing kept me on task, not thinking about what was about to happen, just getting busy organising it. The same with the weeks lead up to surgery when I cooked & shopped & tidied to make life easier for Jake while I was away. Even the unexpected extra week I was able to make use of myself.
I knew the night before & the morning of surgery would be super hard. Even in the early days of diagnosis, deep down I was already fearful that something would go wrong & I would not wake up again - that is obvious by the fact that I went to get a Will done. Logically, the surgery was simple & routine in this day & age, there was such a minimal risk for me. Buuuut, because of all the pop-up allergies, particularly medical ones, that had only been found this year alone coupled with the fact that I've watched Final Destination too many times... there was always worry & doubt.
But that was all I had prepared for. I knew I had to hold onto my logical & sane thoughts until that moment when I was finally under, when they could go ahead & do what needed to be done & I wouldn't need to think about it anymore. I had prepared meals, babysitters, drivers, finances, sleeping arrangements, paperwork out the wazoo. I had not prepared for the hospital days which were way harder than anticipated & I had not prepared to come home & do anything other than recover. To follow instructions with medications, wounds, exercised & otherwise enjoy the down time to read, catch up on good shows, paint, play the PlayStation, maybe try to draw a little.
I was not prepared.
My first night home was a little bit of a blur. Discharge from the hospital & getting home had been exhausting. Jake was home with me for the remainder of the week which meant two full days of just us at home while Charli was at daycare & a full weekend to spend together. We went for walks as part of my exercises given by the hospital, Jake slept on the lounge next to me while I slept on the recliner. For company at night when anxieties would pop up. We went to doctors appointments, we watched some movies & each day got harder. I was off the charts with anxiety, which was hard but I can always manage. It was going way off the deep end with depression. A low I haven't felt for a very long time. I was so scared come Sunday night, the combination of everything I was feeling added to the fact that Jake was headed back to work the next day left me in a hot mess.
For anyone who hasn't felt the lowest of what depression can feel like, it's indescribable. The loss of control over your own mind & emotions is incredible. Complete hopelessness, all-consuming fear and despite any logic, despite any previous victorious battles with the condition, nothing will convince you you will feel okay again.
So, Sunday night, still uncomfortable with bowel movements, I was on the loo trying to let anything happen when I was overcome emotionally. I called for Jake & BEGGED for him to do something. Not really knowing what the hell was happening to me, Jake was at a bit of a loss so I ended up blubbering/yelling at him to either take me to the hospital or call someone to come help. To add to the chaos, Charli had woken up from her sleep inconsolable after what we think was a nightmare. So, in the end Jake ended up on the couch cuddling Charli & I ended up on the couch cuddling Mum. A relaxant & a hit of Endone made me less tense & erratic. I was too scared to be alone for a while after that & Jake had an extra day off to make sure I was okay.
None of this made any sense to me. The hardest part of this whole thing was supposed to be just before the surgery. Emotionally & mentally, being home & recovering was supposed to be the easiest part. I planned for everything else but this. Since then I've taken each hour, each day bit by bit. Thankfully the intensity & frequency have both died down but I have found myself with intense fears around death & hospital that I have never had before. At the moment Jake is still sleeping on the couch every night by my side, fighting for space with the dog because he knows Nelson helps too. My Mum still comes every day, not only to help me do all of the things I can't so myself but to make sure I am feeling okay in myself. But, as my pain has become less intense and tiring & I've been able to do more things independently (still so far from back to normal), I seem to have been able to deal with my thoughts & feelings better. I'm hopeful the trend will continue & once I'm back to normal this will be another memorable victory for me.
So it hasn't been a happy chapter, but it's all part of the journey so I'm writing it. I am so thankful for my amazing support team. I've never had a day go by without someone helping or just stopping in to keep me company while I am stuck at home. I appreciate every single message, call & visit. Love you all x
And so, throughout all of the tests & procedures, all of the preparations, despite all of the fear & anxiety about the whole situation, the logical side of my brain always won out. Everything was a question of what needed to be done & how to see it through. The worry could come later. After my angiogram/heart catheter, I knew it would be mere weeks until I had the actually surgery; and because I'm a planner & a stress-head, I was all over that. Leigh, a nurse from the surgical bookings team at the hospital got well acquainted with me over the next week & a half. I could hear her sigh & frustration every time I called. She was never rude but I was certainly being a squeaky wheel - I wanted to be oiled! The pushing kept me on task, not thinking about what was about to happen, just getting busy organising it. The same with the weeks lead up to surgery when I cooked & shopped & tidied to make life easier for Jake while I was away. Even the unexpected extra week I was able to make use of myself.
I knew the night before & the morning of surgery would be super hard. Even in the early days of diagnosis, deep down I was already fearful that something would go wrong & I would not wake up again - that is obvious by the fact that I went to get a Will done. Logically, the surgery was simple & routine in this day & age, there was such a minimal risk for me. Buuuut, because of all the pop-up allergies, particularly medical ones, that had only been found this year alone coupled with the fact that I've watched Final Destination too many times... there was always worry & doubt.
But that was all I had prepared for. I knew I had to hold onto my logical & sane thoughts until that moment when I was finally under, when they could go ahead & do what needed to be done & I wouldn't need to think about it anymore. I had prepared meals, babysitters, drivers, finances, sleeping arrangements, paperwork out the wazoo. I had not prepared for the hospital days which were way harder than anticipated & I had not prepared to come home & do anything other than recover. To follow instructions with medications, wounds, exercised & otherwise enjoy the down time to read, catch up on good shows, paint, play the PlayStation, maybe try to draw a little.
I was not prepared.
My first night home was a little bit of a blur. Discharge from the hospital & getting home had been exhausting. Jake was home with me for the remainder of the week which meant two full days of just us at home while Charli was at daycare & a full weekend to spend together. We went for walks as part of my exercises given by the hospital, Jake slept on the lounge next to me while I slept on the recliner. For company at night when anxieties would pop up. We went to doctors appointments, we watched some movies & each day got harder. I was off the charts with anxiety, which was hard but I can always manage. It was going way off the deep end with depression. A low I haven't felt for a very long time. I was so scared come Sunday night, the combination of everything I was feeling added to the fact that Jake was headed back to work the next day left me in a hot mess.
For anyone who hasn't felt the lowest of what depression can feel like, it's indescribable. The loss of control over your own mind & emotions is incredible. Complete hopelessness, all-consuming fear and despite any logic, despite any previous victorious battles with the condition, nothing will convince you you will feel okay again.
So, Sunday night, still uncomfortable with bowel movements, I was on the loo trying to let anything happen when I was overcome emotionally. I called for Jake & BEGGED for him to do something. Not really knowing what the hell was happening to me, Jake was at a bit of a loss so I ended up blubbering/yelling at him to either take me to the hospital or call someone to come help. To add to the chaos, Charli had woken up from her sleep inconsolable after what we think was a nightmare. So, in the end Jake ended up on the couch cuddling Charli & I ended up on the couch cuddling Mum. A relaxant & a hit of Endone made me less tense & erratic. I was too scared to be alone for a while after that & Jake had an extra day off to make sure I was okay.
None of this made any sense to me. The hardest part of this whole thing was supposed to be just before the surgery. Emotionally & mentally, being home & recovering was supposed to be the easiest part. I planned for everything else but this. Since then I've taken each hour, each day bit by bit. Thankfully the intensity & frequency have both died down but I have found myself with intense fears around death & hospital that I have never had before. At the moment Jake is still sleeping on the couch every night by my side, fighting for space with the dog because he knows Nelson helps too. My Mum still comes every day, not only to help me do all of the things I can't so myself but to make sure I am feeling okay in myself. But, as my pain has become less intense and tiring & I've been able to do more things independently (still so far from back to normal), I seem to have been able to deal with my thoughts & feelings better. I'm hopeful the trend will continue & once I'm back to normal this will be another memorable victory for me.
So it hasn't been a happy chapter, but it's all part of the journey so I'm writing it. I am so thankful for my amazing support team. I've never had a day go by without someone helping or just stopping in to keep me company while I am stuck at home. I appreciate every single message, call & visit. Love you all x
Sunday, 2 June 2019
The Bovine Patch Chronicles Part II: Post Op Hospital Days
I have very little recollection of the following days. I was still in ICU for the majority of Saturday. I could barely eat despite the nurses best efforts to get me something I would enjoy. The physio & nurse wanted me to get up & walk but I was too dizzy & weak to stand or walk on the first couple of tries. I eventually managed something like 6 steps before I was planted in a seat where I fell in & out of sleep. Jake was with me from late morning until they moved me to the ward late in the afternoon. I don't recall much other than the wheelchair ride from point A to B which felt more like a ride in a rally car.
To me, cannulas are horrifying on a good day & at this point I had a catheter for my bladder, a central line catheter in my neck (going into my jugular vein - YUCK), two drains in the top of my stomach, two pacing wires also going through the top of my stomach to my heart (like a temporary pace maker), a constant ECG monitor (5 wires stuck around my chest & stomach to little sticky pads), a vacuum wound dressing over my sternum which was connected to a pump & oxygen through my nose. Just gorgeous, as you can imagine.
I was lucky enough to have lots of visitors on Sunday, Jake, Mum, my brother, sister-in-law, niece & a couple of friends ventured in through the day which was lovely but I was terrible company, still dopey, dropping in & out of sleep at times & with the catheter removed early that morning, I was in & out of bed to the toilet what seemed like every 15 minutes. Boy, that was a process. I was probably the closest patient in our room of four to the toilet & it took an enormous amount of time & energy to do a wee. Getting out of bed for a start was incredibly more intense that I was prepared for. I had to support my chest by hugging myself as I was pushed up out of the bed, then, navigating all of the cords, tubes & wires & trying to wheel the shitty IV pole all of 5 paces to the toilet, get on & off, wash my hands, get 5 paces back to bed & get back into the bed (another fun adventure of sitting & leaning a specific way, so the nurse was able to help me not use my arms to bear my weight).
So far things had been okay, if I wasn't completely out of it, I was relaxed enough to just chill out in my bed or on my chair. Then Monday came & it was the worst day possible. My central line, where my Endone had been available at the push of a button had been removed. The pain probably would have been fine had the doctor prescribed a bigger dose per day, unfortunately it took the whole day of me complaining to nurses & finally seeing the doctor to say my pain wasn't being managed properly before they checked my chart & promptly apologised, upping the dose. On top of that was normal bodily functions that were not so normal - going to the toilet to do either a one or a two was the worst - I felt like I had a urinary tract infection without the pain, just a constant need to go that was never sated no mater how often I went. The other side of things was the same, feeling the need to go but nothing happening. As you can imagine that was uncomfortable. This particular day was also the worst for staffing. There simply weren't enough staff to see to the needs of so many patients. As one of the needier patients (Still unable to get myself out of bed, reach things & go to the bathroom unassisted) that constantly needed to go to the toilet, it was painful to press my nurse assist button & not be seen to for 10 minutes or so. I was super thankful when my sister & Mum arrived, not only for the company but for the help. They gave me a bird bath on the bed because I was too weak, tired & sore to have a proper shower & fed me some lunch. It was on one of the trips to the bathroom where I had a meltdown & begged Mum to stay with me for the rest of the day. I fell asleep after that when I was finally allowed more pain medication & from sheer exhaustion. I woke up to find Mum still with me which was a massive relief as the trips to the bathroom started up again. I can't remember how many times I got up to go to the bathroom but it was a lot & the last time I spent something like 10-15 minutes just trying to go. I finally gave up which was not the right call, because I ended up going as I went to sit back in my chair. In a moment of complete horror, I looked at my Mum & I'm sure my face said everything. Mum was able to grab a nearby nurse who promptly & discreetly cleaned up the seat while Mum got me into the shower. The nurse took the time to explain how common it was, with the combination of pain killers & softeners it's hard to tell when anything is actually going to happen. She offered me adult pull-ups as she further explained that it was likely to happen again. I eagerly took her up on it, preferring to have any further accidents contained. Thankfully it remained a precaution & I didn't shit myself again 😏
Tuesday was a better day in the slow upward climb to getting better. I felt more awake and able than before & even managed to have a shower after the disturbing removal of my pacing wires & vacuum dressing. Finally free of the IV pole it was much easier to get around. On the doctors rounds, they let me know they would likely be sending me home the following day which was a scary surprise. They wanted to do another chest X-ray & echo-cardiogram which turned out to be horrendous; the sonographer spent a good deal of time leaning on & therefore pulling at the stitches in my right drain wound. The nurse had to pull the stitch tight again *gag*. Mum & my other sister came to visit through the day which was lovely & since I was no longer connected to machines & able to wear normal clothes, Jake brought Charli along for his evening visit. It was the first time I had seen her since the night before the operation & the longest time I had ever spent apart from her before. It was horrible to not be able to cuddle her properly but she sat happily in the chair next to me & ready 10 Silly Wombats over & over while Jake & I reminded her to use her inside voice every few minutes. To keep Char occupied, I got her to take me for a walk around the nurses station - something I had only been able to accomplish earlier that day, very slowly. She made herself famous, waving & giggling at everyone she passed; the nurse from my room rewarded her with a chocolate.
Wednesday came & I was cleared to head home, big sis had come to pick me up but it took forever to get properly discharged, which meant waiting in the Transit Lounge for an hour & a half. I started to get pretty anxious sitting there, I'm not sure why but it was a god-send when the pharmacist finally arrived with my medication & I could leave. After such a gross few days in the hospital, it was exciting to be in the comfort of home and begin the next stage of recovery.
Friday, 31 May 2019
The Bovine Patch Chronicles Part I: Pre Op
As always, writing is like a therapy for me; but I really haven't known where to even start. I've felt the need to write out my experience over the past fortnight to get it out of me, to have lived it outside of the dark places in my mind & let it go. But I haven't been able to actually do it. Jake, my Husband, biggest supporter & editor told me to "Start at the beginning, continue with the middle & finish with the end." That makes sense, so lets do it.
Two weeks ago today I had open heart surgery. Despite sitting here with a kick-arse zipper down the middle of my chest & the inability to lift anything other than a carton of milk, I still haven't processed that. Not properly anyway.
I spent the day prior to surgery pretty much at the hospital, having been driven in by my big sister Brandi (thanks Bran!). It was a full day once we got there - blood tests, x-ray, echo-cardiogram, respiratory tests & meeting something in the vicinity of half a dozen staff - doctors, nurses, physios and an anesthetist. I didn't have much time to think which was a blessing. It wasn't until I was finally alone in my bed on the ward that things started to get a little not okay for me. Jake & Charli came up to see me which I was incredibly thankful for. They couldn't stay for long but it chewed through some time & of course they were the two people in the world I wanted to see at that point. Saying goodbye was unbelievably hard, I had to try not to be unreasonable & ask Jake to stay, especially when Charli asked why I wasn't coming home. I told her that I was feeling a bit sick & the doctors were going to make me all better; that this was my special room & I just had to stay here for a few days while the doctors gave me medicine. She thought about that for a minute before she accepted it & said farewell with her usual flare; royal wave, a hug & kiss combo to leave The Rock winded & "Goodbye, I love you, see you soon" that I'm sure everyone on the ward heard as she sauntered out of the room in her Panda Bear PJ's & Cherry shoes. Alone again, knowing no one else was coming & what lay before me, I found it hard to settle down. I still had all manner of staff streaming in, which broke up the horrible feelings & thoughts but came to an end all too swiftly. The walls began to close in fast & I just about harassed my nurse for a relaxant. I was pretty sure I was going to slip quietly from my room & disappear, never to be heard from by the hospital again, happy to live out the rest of my life physically inadequate & eventually be taken by the defect. At that point it seemed like the best option. Eventually, I was given a relaxant which sent me into a long heavy sleep quicker than I'd even hoped.
Staying in hospital for any length of time is never a nice experience. Waking up to the reality you are about to go through a major surgery which involves being cut down the chest (14.5 centimeters to be exact), sternum cracked apart, put on a lung & heart bypass machine while both lungs are collapsed & the heart removed to open for patching. Then everything gets put back together. Piece of piss.
The nurses came in & bustled me about, I went through the motions in what was a daze, I felt almost out of my body as I showered with special pre-op soap, gowned up, packed up my stuff & was lead to the theater waiting room. I will be forever grateful to two very special men that morning. A student nurse I unfortunately never got the name of, who seen me across the room - I must have looked as though I was about to burst into sobs by this point & he came to my rescue, holding my hand & chatting about anything else but my condition or the surgery. I barely remember the conversation, just being so thankful to have a small distraction, but enough of one to stop my head spinning quite so much. Then suddenly my bed was moving & a man named Steven was cheerfully telling me that he was part of the anesthetists team & would be helping me go off to sleep. At this point it's my last chance to leg it & that thought must have showed on my face because Steven had a tight grip on my arm, hand, or leg at any given moment as he chatted away, like we were new mates that just met at a bar. A few times he stopped to stroke my hair & tell me I was alright & that he would look after me. We're in the operating room by this time & I am openly crying my eyes out. Nice going Steve, mate, but you need to knock me out & you need to do it now. Before he finally did, I asked him to make sure I woke up again. He squeezed my hand & promised. Having been hooked up to multiple things during Steve's distracting, the world finally faded away & I was blissfully unaware.
Thursday, 25 April 2019
The Heart of a Cow
If you’ve
been following my heart journey you’ll know my procedure this past Tuesday was
a big one. Not only was it an unexpected hiccup between the long list of initial
tests I had to undergo to determine what would be done about my condition & surgery; it
was a little invasive for my liking.
Last
Thursday I went in to my pre-admission appointment for this particular
procedure where I was seen by multiple medical professionals. I went on profusely
about my multiple allergies, my anxiety issues & my NEED for sedation
throughout this procedure (She assured me I would be sedated for one of the
procedures). I also went as far as to tell the Doctor (who looked all of 15)
that I didn’t give a rats ass what the procedure entailed, the less I knew the
better for me mentally. Apparently that was not an option – I could not sign
the consent form without being taken through the ins & outs of the
procedure, as well as the long list of risks that came with it. No signature,
no procedure. So I allowed her to tell me all about it, about the risks
involved & about what the outcome of the testing would mean for me. I left
the hospital that day dry-retching and in tears.
Hearing
about the catheter being inserted into my groin that would go up into the heart
& then into the lungs was enough to make me blanch; and then there was the
second consent form for that procedure if there were issues going through my
groin, they would then go through my jugular… Also, a surprise second procedure
was the angiogram. Basically the same thing but the catheter would be inserted
in my wrist. I was unaware up to that moment that I would be having both done.
So while I proceeded to start sweating bullets over that, she then went over
the risks. Small percentage risks that were super unlikely but made me want to
shove those consent forms in the lovely little doctor’s pie hole. Trying to
focus on the end goal & the fact that I needed to do all of this to get to
surgery, not only to stop myself from basically dying faster than most, but
improve my quality of life overall, I asked the natural question – would I know
a surgery date long after that? I appreciate that doctors are factual &
that it’s the nurses who do the bedside manner thing but she smiled so brightly
as she said; “Depending on the results of these procedures we may have to
medicate you, do other operations or procedures or you may not be deemed safe
enough to do the surgery at all. Do you have any other questions for me today?”
I made my escape from that office as fast as I could & hyperventilated in
my car for a while before setting off home. Out of all of it, the icky procedure
details, the scary risks no matter how small; it was the “…may not be deemed
safe enough to do the surgery at all...” that echoed through my mind. Surely
they would have a plan B. They couldn’t just let me slowly die, becoming more &
more susceptible to strokes, heart failure and various other things as time
went by & the damage increased. Surely.
So the weekend
went by, slow as you like. I tried to enjoy the Easter break with Jake &
Charli. I did, of course but the thoughts of procedures, risks, outcomes were always
lurking not far from the surface of my mind.
Tuesday
came, I dropped Charli at day-care, she was stoked for a second breakfast &
said her goodbye happily, which was awesome. She has been cluing onto a lot of
this stressful medical talk over the past 4 months & it has impacted her a
fair bit on & off. My sister was due to pick me up & drop me to the
hospital but there was a couple of hours to kill, I busied myself with
housework & was surprisingly calm, although the anxiety was hovering at my
back. The car ride was much the same, even arriving at the hospital, checking
in & sitting in the waiting room only increased my nerves the slightest
bit. I’m thankful my sister stayed with me until the nurse called me in. I said a cheery goodbye. It wasn’t until
then, until I was walking down cold blank hallways to a clinic room that the anxiety
started to dig in its claws & settle in every part of me. Knowing it was time
to get prepped for the procedure, knowing exactly what that procedure was, it
was all I could think about. I tried to concentrate on one thing at a time. The
nurse, Denise handed me one of those delightful hospital gowns that do up at
the back & also a hospital robe to cover what would have been let exposed.
She told me to strip down & put them on. I said “just leave my undies on?”
She chuckled. “No undies for you today except these pretty paper ones,
sweetheart” as she whipped them out of a packet with a flourish. “Don’t put
them on just yet though.”
I was in
jeans & a few layers (I knew the hospital would be cold) so it took me a
bit to undress & fold everything into my overnight bag. Denise was obviously under the impression I
would be done & threw back the curtain in time to get a good look at every
inch of my neglected-arse Mum bod. She
didn’t seem to mind quite as much as I did & told me to lay on the bed as
soon as I was in my gowns. I did so. Then, like something out of a horror/comedy
film she whipped up an electric razor out of nowhere as she said “Well, let’s
see what’s down there” I’m not sure whether I was more mortified or amused.
After this somewhat traumatic ordeal, the anxiety increased as I put on my
delightful paper undies & sat at the table with her to “go over a few
things”
I immediately
let fly with “I know what I’m here for, why I’m having it done, I’m all good with
that, I’m just feeling pretty anxious”
“I can see
that, honey” as she flips to the medication section of my chart “they’ve
written you up Temazepam, we’ll get that for you in the next room – whoa!” She’d
reached the allergy section of that particular page… “so what DO we give you
for nausea, honey?”
“Only
Ondansetron”
“Okay, that’s
all in order, let’s get you all ready!”
Denise needed
to calm down with her enthusiasm.
Into the
next room we went. I put everything except my book & phone into a locker,
done a pee test & waited what seemed like an eternity for Denise to get me
my drugs. She instead started with my cannula, not the worst I’ve had but
certainly no picnic, especially when sweet Denise turned into murder nurse for
a moment there & brutally shoved the cannula in & out of my skin so I
was almost barfing. She had put a cannula I’d never seen before in my arm – it had
two inlets instead of one. I enquired as to why, she patted my arm & said “It’s
just standard for this department”
Well fuck
Denise, if I didn’t need my Temazepam before I certainly did now after your
jiggling about & sorrowful look. “Can I have my relaxant now?”
After taking
the relaxant & some Asprin to thin my blood for the procedure, I was still
shitting bricks. I couldn’t read, I was too worked up. I scrolled social media
aimlessly & annoyed friends on messenger with menial chatter.
Then old
mate Roger in the beds over yonder, stops breathing. The nurses flock, they are
yelling at him to “Take a big breath in for us, Roger!” & all I can hear is
horrible gurgling. Thankfully after some time, Roger came good, the nurses
resumed their other tasks. I was so glad that Roger was fine now, for Rogers’s
sake… but I did sink a little further into my recliner as the panic began to
rise. Between then & the next person I had to see, I resumed talking to friends,
who made silly crass jokes & took my away from the cold waiting area, the
itchy hospital clothes & the thoughts of what was to come. Suddenly a nurse
was there asking to have a chat. I turned my phone off then, thinking this was
it. Time to go in. Apparently not. She just wanted to clarify a heap of things.
She left & I thought it would surely be soon. Another 2 hours passed in
which I read & talked to other patients, the temazepam doing its job but
wearing off slowly. I knew it was reaching the end of its effects when I became
to restless to keep reading. Thankfully this was about the time the nurse came
out to tell me I was going in next & asked me some questions. The doctor
then came out to join us & asked pretty much the same stuff “Do you know
what we are doing today & why we are doing it?” “Yep”
“Do you have
any other questions or concerns?”
“I’m fine as
long as you sedate me, I’d prefer to be sedated for both”
He looked at
me “We aren’t sedating you for either -
it’s unnecessary. You will be fine.”
My face must
have said “Um, WHAT?” quickly followed by “NOPE” because the student nurse them
came sat with me until I was taken in – at which point I am crying and hyperventilating.
The doctor did not give two shits. “Make her comfortable” was all he said to
his staff.
Nurse 1: “Calm
down love, the procedure will go much better if you’re calm & not hyperventilating
on our table” She chuckled.
Nurse 2:
Taping my hand to the table at an odd angle “Just taping your hand here because
we need your wrist a certain way to get in there. You’re okay sweetheart, it’ll
be over before you know it.” She continues to talk my through putting dye on my
skin, explaining what the cold feeling is. The radiographer is then stroking my
head getting me to look at him. “I’m Dean & I’m going to look after you
okay, lovely?” Obviously they gave me something to calm me down but I was wide
awake as I watched the x-ray of what was happening in my body. I told myself
the more calm & still I was the better. It was hard to miss the monitor –
it was bigger than our 55” Sony at home & it was riiight next to my head.
So I watched. I felt no pain just weird little tugs here & there.
Suddenly it
was over, as quick as it had begun & I was in a recovery bed where I was
under strict instructions not to move my legs or the arm which they had used
for entry. Denise returned, explained that she would remove the tube from my
groin & would then have to keep pressure on for a while. She removed the
catheter without pain & proceeded to apply pressure to the area &
initiate awkward chit-chat. We remained this way for 15 minutes… I was wearing
a bracelet of sorts acting as pressure to the entry site on my wrist, Denise
would release some air from this every once in a while. They were adamant I
stay lying & still for 3 hours but were happy enough for me to go home that
day. I called Jake & let him know he could come get me at 7:15pm. I was
given a sandwich & sat up barely enough to eat it. I managed between naps
& inspections to my groin & wrist by Denise. There was a changeover of
nurses, the wardies said hi on their way in & out. Nurses of the other
patients also checked in. There was a large volume of traffic at the foot of my
bed so I wasn’t surprised by another face popping up. He introduced himself
& asked how I was doing – I immediately forgot his name because, well,
there were simply too many people here to remember them all. I told him I felt
fine, just looking forward to sitting up properly. He then spilled the news
that he was my surgeon & took no time diving into specifics about exactly
that. It was a blur. He talked about the fact that not having the surgery
ultimately meant dying because of the damage my heart would sustain & once
the damage was past a point there would be nothing they could do. Without
prompting & much to my horror he then explained some intricacies of the
surgery to me.
“We will
open you up, put you on a bypass machine while we patch the hole in your heart.
The patch will be made from the tissue of a cows heart. Then we will close you
back up & you will recover”
“Yep, cool”
“Can I have
a look at your chest?”
Why not
mate? Go for it. He pulls down my gown & proceeds to put pressure on the
top & bottom of my sternum. “You will be cut from here to here.”
“Yep, cool”
“Any other questions
or concerns?”
“What will
the time frame be on the surgery – when will I know the date?”
“Do you need
to discuss any more of the surgery details with me or you are happy with the
information you have to go ahead”
“I am keen
to get this done”
“Great, my
team will contact you with a date. It may be the week of or a couple of weeks
out but it will be absolutely done within the next 4 weeks”
“That sounds
good. Thank you”
“Excellent.
Keep well, I will see you soon”
He leaves. I
spent the next little while checking out my sternum & thinking about the
joy my siblings will get knowing my heart will literally have a piece of cow in
it…
I finally
got out of bed. Slowly. The “pain” in my wrist & groin was more discomfort
but it made getting dressed in a tiny change room a bit of a shit show. I
managed & headed out to sit in a recliner to await Jake’s arrival. One of
the nurses came to talk me through post-procedure care. I was feeling not flash
but that was to be expected. She started explaining what to do if any of the
sites started bleeding. I felt more crook as she went on. I told her I was
quite prone to anxiety & asked if I could take a relaxant. That was
absolutely fine. She continued on about how if the groin bled to apply pressure
for 10 minutes & seek a GP or ER if it didn’t stop. They only went through
a vein there so it would only dribble blood. It was here I told her I felt a
little more crook & asked for a sick bag, which she got.
She then
proceeded to tell me about my wrist. The wrist was an artery & would in fact
spray bursts of blood with my heart beat. I needed to cover it with pressure immediately
& call an ambulance if it didn’t stop.
It was here
that I told her I felt worse & promptly fainted. I came to with 4 nurses
sitting around my chair, a wet washer on my forehead, my feet up & on top of a
pillow, a nurse stroking my hair & another putting my on an obs machine. My
blood pressure & heart rate were through the floor but began to climb as
time went on. On nurse sprayed some peppermint oil under my nose which worked
wonders for clearing my head. Jake arrived & Charli was wide awake, her
little face a mask of horror at the scene before her. I put on my best show –
explaining that I had felt a bit sick but the nurses made me all better & I
was okay now. I smiled & laughed & tried my very hardest not to bring
up my sandwich from earlier. She was fine as soon as the nurses starting
talking to her & she had to act shy…
The nurse
that had been trying to explain post-procedure care to me took Jake away &
gave him the run down. They believed that a big day with minimal liquid intake
along with a sudden bought of anxiety was what made me faint & once my obs
were sitting steady they were happy to let me go; over an hour later than I
should have but at least I felt better.
The rest of
the night was a blur of anxiety & feeling simply icky. Jake asked if I
would like a relaxant & I said no – I was paranoid one of me sites would open
overnight & I wouldn’t notice from the drugs. I slept anyway, my body
simply exhausted. Knowing how upset & paranoid I was Jake set an alarm
& check both my groin & wrist every couple of hours. What a bloke.
It’s now
Thursday night, over 48 hours later & with a reduced waiting time for
surgery that could be sprung on me at any moment, mixed with still feeling icky
around both my groin & wrist, I’m feeling pretty shabby. The anxiety has
become less of a thing that crops up & more of a consistent, nagging,
debilitating leech that I cannot seem to shake. I’ve done nothing but sleep,
eat & take relaxants for the past 2 days & I hope these are just the
after effects of an information overload & crappy hospital experience.
Thanks so
much to everyone who chatted to me on Tuesday; I’ve had people tell me it was
only an angiogram or only a cardiac catheter but it was my first time having
tubes shoved into my heart & lungs & it wasn’t so fun to watch. I’m
hopeful it’ll be the first and last. That is, after a very keen little Indian
man busts open my chest & fiddles with my heart.
And so the
surgery countdown truly begins
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