The Bovine Patch Chronicles Part V: 3 Steps Forward, 2 Steps Back

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!

The Bovine Patch Chronicles Part IV: 4 Weeks Out

Woohoo - today I am 4 weeks post-op & feeling like it! 

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

The Bovine Patch Chronicles Part III: Recovery at Home

The first time I seen the Cardiologist back in January, he first explained the defect in detail & then went on to list the tests that would have to be done to make a decision around surgery. He then discussed surgical options with a definite sway towards open heart. That is, he said there were 2 options with ASD closure; option one was the hole being plugging via an artery, option two being open heart surgery. He then went on to talk only about open heart surgery & also promoted it as the best way to ensure a successful closure. I was never silly enough not to put stock in that & immediately planned for everything to go that way.

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

The Bovine Patch Chronicles Part II: Post Op Hospital Days

Steve kept his promise. I woke up, painfully & slowly, with wires, tubes & machines swinging off me everywhere. I know I fought them to get rid of the oxygen tube, I have extremely vague memories of weakly gesturing for them to take it out. I don't remember them actually doing it, but they finally did which was good because the next time I came to I was vomiting. Obviously I had nothing in my stomach at that point so it was just bile but oh my, it was horrendous. I was barely awake, spewing onto my chin & down my neck while the nurse grabbed a sick bag & told me to support my chest through the heaving by hugging a towel. I'm thankful I don't remember much of all this, just waking up every so often for another spew. I remember demanding to know what pain medication I was on. They told me it was Fentanyl & I immediately demanded that they change it. Fentanyl makes me vomit & I am allergic to most anti-nausea medications - not a great combination. Eventually, my medication was changed to Endone. I woke up sporadically from then on but remained mostly unaware for the rest of the day & night. Mum recapped the conversations she had with the nurse when she called the ICU to see how I was doing. Apparently my brain to mouth filter malfunctions when I am drugged up & coming out of general anesthetic; I told the nurse to leave me alone because I needed to sleep when she was trying to do an ECG at one point. Thankfully, the nurse found this amusing & not just me being super rude... Apparently I had multiple phone conversations myself with Jake & Mum.

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.