Tag Archives: endocrinology

8. Closure

I arrived up on the Respiratory Ward with my heart hammering in my chest. Don’t be pathetic, I tell myself. It’s just a needle, then a tube….bingo, fluid gone! Nothing like what I have been through in the past few weeks! But after that experience of coughing up blood the night before, I just couldn’t nudge the anxiety aside.

The lovely lady-doctor who had instilled such faith in me earlier today was waiting in my room when I got there. Through 2 double doors into a low-pressure single room (yes, this is the public system and yes, I have a private room – welcome to NZ healthcare!), my rather-large-unit of a male nurse gently sits me down and reassures me. James standing on my other side, I feel like I have my 2 bodyguards beside me once again, and I feel a twinge of heartache as I think of my Dad. The doctor is arranging everything she needs on the bed behind me as she tells me to sit exactly as I had earlier on for the ultrasound scan. Deja-vu from the night before steps in….but this time she knew exactly how I was sitting to re-create it as she had been present during this scan. The atmosphere was different in the room….no fuss and rushing around with hasty words spoken, there was quiet and calm…and most importantly, my James had settled himself into the seat facing me and had taken both of my hands in his and locked me into his eye-contact, sensing my apprehension. It happened exactly as she explained it would earlier: sedative and morphine was pumped into my IV line, then local anaesthetic gently inserted into the area of my back where the drain would be going….then I felt nothing more than a pushing and prodding sensation whilst she inserted the needle then the tube around it. I felt nothing, heard nothing but the gentle voice of the doctor talking me through the procedure and James reassuring me…..then all of a sudden I felt an intense pulling and cramping in my back that catches my breath. Where the pipe had snaked its way around my side I saw red fluid bubbling and rushing down the pipe. James found it fascinating: laughing and exclaiming “Holy Shit, that’s a lot of fluid!!”. At first I also found it amusing, James’ jolly nature once again spurring me on….until I felt a tightening painful cramping in my chest, really rather unpleasant. Apparently, when a lot of fluid is released from the lung space, it can move too fast and the change in pressure is painful. So they literally turned the tap off behind me whilst I recovered momentarily, then continued with a slower flow and monitored my pain till they had drained off about 1.5 litres of blood-stained pleural effusion. The nurse holds up the bucket and asks if I want to take a look. My back to the door where he is standing, I decide that this time….no, I don’t need to see the gory details! I feel exhausted by it all, like the very blood of my being has just been squeezed out of me…and all I want to do is sleep. James leaves, I settle into a night trying to get comfortable with a tap sticking out of my ribs.

drain

It’s very curious to be wheeled around on a bed when your legs are working perfectly fine. Throughout those days I spent at Auckland City Hospital, I wasn’t allowed to walk very far. Quite the opposite to Mercy where they were constantly trying to coax me to my feet to get me mobile and would have been simply delighted if I had had the spontaneous inclination to do so. Here, they wheeled me everywhere! Admittedly, I had an awkward little trolley attached to my pipe with a bucket of blood-stained fluid sloshing around in it…..but I’m certainly not one to be ashamed or embarrassed about these things so I would have quite happily walked.

drain bucket

But no….they pick you up for everything in the bed! I remember countless times being wheeled for an xay or a scan through the tall atrium of ACH gazing up at the photographs of hospital staff as I glide by, loaded up with my pipe and drain. I tried to memorise them each time, seeing their laughing faces and wondering what job they had – are they doctors, nurses, or perhaps a chef or cleaning staff? Each and every one of them have a vital and admirable role to play in the treatment and recovery of people like me. I feel humbled and thankful each time my bed rolls by their faces. I look up at the darkened bedroom windows in the atrium, see the silhouettes of patients in their beds….and wonder how many awful struggles people are having to contend with behind those panes…. so much suffering goes on behind closed doors. Times like this put everything in perspective, fact! Everyday trivial life struggles I would normally fill my mind with just don’t seem relevant any more.

Monday morning: I get awoken by breakfast, early of course. Then half way through hungrily munching on my toast and cereal and quietly contemplating how different this hospital experience is, (previously I would have turned green at the sight of breakfast), the door bangs open and in marches a very tall lady-doctor with her entourage of wannabe-doctors and apprentices: the Respiratory Team. Literally, there must be 6 of them in the room….and they all gather in a semi-circle around my bed as if examining their next specimen. Swallowing whatever I was currently munching on, I smile weakly at them all as she launches into her spiel. In a nutshell, my pleural effusion is too blood-stained to see WTF is causing it. And because I coughed up blood when the first sample was taken, they would need to take a look at the inside of my lungs to check for the worst case scenario, even though the blood was most likely caused but an accidental puncture the other night. I guess the doctors need to err on the side of caution after you have had a tumour removed, especially such a sizeable one just below the lungs. I was already acutely aware of the risks of spread to my lung, but the confidence my surgeon had that he had removed it all without chance of spread made me feel reassured. This was all procedure to eliminate all possibilities, that’s all. So part of this procedure would take place the following morning with a bronchoscopy. Basically, a camera down the lung to check for any nasties and the cause of my bleed. The entourage of doctors marched out as solemnly as they marched in….off to find their next specimen.

The next morning, no breakfast allowed, and I am wheeled (of course) down to the endoscopy unit for my bronchoscopy. No fluid had drained off my lung for a while now but they insisted on keeping the drain in, despite how uncomfortable I was. Lying constantly on an angle to avoid leaning on it was leaving me stiff and sore. But I was starting to feel so much better without the fluid so I could see light at the end of the tunnel! I wait…..and wait…..lying there on my bed in the endoscopy waiting area. Eventually I am wheeled in backwards and I immediately recognise the voice of the lady doctor from yesterday….it feels rather strange not to see her face but these are the joys of travelling around in a bed – you spend most of your time going backwards! I see the eyes of another doctor I recognise peeping out over the top of his face-guard, and a few of the other entourage members are lurking in dark corners waiting for the show. As soon as I’m in place, they pump my IV once again with sedative and fill my right nostril with a numbing gel using something akin to a lolly-stick. I feel like I’m at the dentist with a strange twist! Once lack of sensation is confirmed and I’m feeling a little woozy from the drugs, the camera is VERY quickly slid up my nostril and all of a sudden I feel a cold stick hit the back of my throat and continue on its merry way down to my lung. I have this uncontrollable need to cough and swallow….constantly….quite an unpleasant experience. I am amazed at how quick it all is though….no sooner are they in there, they have all the pictures and information they need to confirm that my lung is indeed healthy on the inside, just evidence of old blood in the bottom right lobe where I was likely punctured with the needle. The lady doctor confirms this from behind me that it’s all good….then I’m whisked away and back to my room in a woozy haze before I know it!

I had another visit from one of the entourage later that day and I pleaded to have the drain removed. Nothing had come out of my lung for ages now and I was losing my patience with it. I had more test results, confirming no cancerous cells as part of the fluid they released….everything was going brilliantly and I wanted to get the hell outta here ASAP now! The nurse came to take the drain out, which was really no drama at all. I thought it would be another unpleasant experience but really I hardly felt a thing as she whipped the pipe out and sealed the hole with steri-strips. I’ll be honest, pulling all the plaster holding it in place off my back was actually more painful than the drain coming out!! The bliss of being able to move freely and lie comfortably was incredible. Like I keep on saying, you learn to appreciate the small things….and let’s not forget that I haven’t been able to lie comfortably now for weeks, since the op. So all of a sudden being able to lie painlessly was just heavenly! I remember just lying there looking out of the window and appreciating that moment of painlessness, just then. A skill I would love to have the patience to carry forward into my life looking forward, just appreciating ‘the now’.

hospitla view

One more night of monitoring…..and I was good to go. On my last morning in there, I had a visit from a member of the endocrinology team. A very spritely and jolly chap; he gives James and I a complete thorough run-down of the genetic side of things, the part of the story that would hopefully conclude this sorry tale! Once again I feel like a medical celebrity-case as he joyfully tells us how unusual Pheos are, especially of this size. He popped in, in true Kiwi style, just because he had heard I was in the ward so he wanted to see how I was! He almost seems excited! Well, at least someone’s having a good time through all this! I would see this team of medical professionals next (add to my list of hospital departments: Hepato-Pancreato-Biliary (liver), Respiratory, now Endocrine) – my surgeon had already referred me to see an extremely experienced professor of Endocrinology regarding the genetic testing that I would need to wait on now.  These DNA tests should get me possible answers to my fears for the future: will it come back, is my family at risk, will I be able to have children?

I leave the hospital, this time I vow for the last time in 2014, squinting into the sunshine and chuckling at James who is grumbling at the car-park machine. Life will be back to normal now, I can feel it. All medical dramas are over. Yes, I’ve got a few tests to go through the paces of….but deep in my heart I have a strong feeling that it’s all just part of the procedure and it’s all over now. I’ve well and truly done my hospital dash. My next hospital visit will be for good reasons, with a bit of luck!

That night, in true James style and as if to remind me that life is vibrant and worth catching up with…..he nearly sets Onehunga on fire with a fantastic private firework display just for me. 🙂

fireworks

Now a few weeks on, I sit here at the island bay in our new kitchen amongst building dust, surrounded by tape measures, upholstery swatches and tile samples. I have really struggled to find the time to finish this blog with house renovations and getting slowly back to part-time work, but being someone who never leaves anything unfinished it has been bothering me. Then it got me thinking about the whole point of me sharing my story. Firstly it was to educate others who might be in the early stages of a Pheo diagnosis and who might be as clueless as I was…..but ultimately it was for my own recovery. I had the choice to go for counselling, but I chose my own method. Off-loading my struggles onto paper has been my self-help, my therapy. However, now my priorities have changed. No longer do I spend my days agonizing over physical and mental pains, now I am filling my days with making our home fabulous. I am filling my days preparing for friends and family to come and visit over Christmas to enjoy our new home and enjoy NZ, the beautiful country we live in. I am filling my days with life! I no longer feel the inclination to pick up my blog, therefore it has served its purpose.

I think back to the day the surgeon said I may wish to seek out counselling. Well, that I did. You, my readers, are my counsellors. In taking the time to read my blog, it has made writing it worthwhile…..and as a result I have been inspired to continue and offload every last thing and have mentally pulled myself through the most challenging time of my life.

Thank you, from the bottom of my heart.

PS. Today I had my genetic test results: it seems mine was sporadic. All 3 DNA tests came back negative. Therefore, no implications/worries for my family. And, with a large dose of luck, I may have a family of my own one day with no risk of passing on anything nasty other than my annoyingly impatient gene!!

The alien was sporadic, who knows what kicked it off and kept it growing (I have a VERY strong theory it was stress-related – immune low, can’t fight bad cells….then again, I’m no doctor, just a hunch!).

Who cares….adios Alien. Now back to tiles…… 🙂

Advertisements

7. Deep Breaths

Being at home for the first few weeks after surgery was a roller-coaster. Emotions, pain, confusion, clarity, relief…..nothing felt normal. I only had a few things to achieve each day: get a couple of short walks done, do my breathing exercises, write some final year reports for school…..but the motivation was lacking due to the intense building pain I was experiencing. I just couldn’t understand why things weren’t getting easier. James was back at work and now it was up to me to motivate myself to get better, which usually would never be a problem, not being the type of person who needs anyone else for motivation. However hard I tried though, the pain just held me back….and my frustration was getting the better of me. I couldn’t sit, stand, lie or walk without excruciating pain. I went back to the surgeon and he prescribed me higher doses of morphine. He already knows me enough to know I’m not keen on popping pills, would much rather let my body do its own healing and keep dirty addictive drugs out of my system. He assured me that I wouldn’t become an addict and the only way to make progress is to manage the pain with pain relief in order to manage some daily activities and gradually become more mobile.

All I could focus on was getting my life back; it became an obsession. Getting back to work at school, recovering my normal routine, being independent and most importantly, being the girl that James fell in love with once again. That was all I wanted. I had become a shadow of my former self and it filled me with deep sadness and frustration.

Then comes the phone call from my principal, who by now has received my letter signing me off for 6-12 weeks. “I’ll be fine to come back by week 6” I say, desperately. Now at the end of week 4, it’s not looking likely and my principal knows this – she has eyes and ears in the right places to know exactly how badly my ‘recovery’ is going. My right lung and back aches, my shoulder cramps up, I can’t lie down, can’t breathe deeply and can’t walk very far without losing my breath. Teaching a class of 5 year-old girls is not on the agenda and I knew deep down it would be irresponsible. She tells me firmly that I must take the full time off, look after myself and not return till next term. She told me, quite rightly, that my surgeon would never have signed me off for so long if he didn’t seriously think it would be a slow recovery and there might be problems. And at my current rate, he seemed to be right.

So I come off the phone in tears, grateful for my employer’s support in wanting me to make a full recovery and not pressuring me to return to work too soon….but bitterly disappointed that my body has failed me yet again. All I want is to get up every day, pain free and get on with life. All I want is for this nightmare to be over. As if the surgery wasn’t bad enough, the aftermath seems to be dragging the chain too. I remember reading somewhere once that our careers are a major part of our identity. Without a job, people tend to feel worthless and lost….and I was certainly feeling like this. Usually I live a fast-paced, fulfilled life motivated by my desire to achieve my best in all that I do. Now, I feel like my energy and my zest for life has been zapped….all I want to do is stay in and be still, cherishing every pain-free moment that might pass by as a massive achievement. My sole intention each day had become a sad existence of pain-avoidance…..pop another morphine, heat up the wheat bag, pile up cushions to lean on and try to find a comfy position. It was like a hideous Groundhog Day. I am supposed to be in recovery from surgery.…so why am I not getting better?? James would get home from work each day, ever-hopeful that I might have made progress…..I know he didn’t mean it in this way, but I felt like he was disappointed in me for not recovering quick enough. I know this was just my paranoia. I felt exasperated….no light at the end of this pitch black tunnel.

I tried physio….but my physiotherapist seemed convinced that the issue was deeper down; she thought I may have developed post-surgical pneumonia. Yeah, right!

I tried acupuncture…..never thought I’d ever find myself volunteering to have pins stuck in me and cups sucking at my flesh, but I was willing to try anything….and actually it was strangely therapeutic and I wouldn’t write it off in future for issues of less severe pain.

When the pain got to such levels that I could hardly sleep because of the cramping pain in my ribs and chest, I got in contact again with my surgeon. Poor guy just can’t seem to shake me off! He says something isn’t right, I should be making progress by now. So he booked me in for another ultrasound to check my abdomen. He was initially concerned that the space left by the tumour may have filled with fluid which can cause intense pain.

So I lie once again in that little darkened room with that little triangular video screen that should only be used to look at babies, in my opinion….and memories come flooding back of that first ultrasound when the tumour was discovered. At least my faithful James was there at my side this time. Thankfully, no fluid was found in the space…..but rather a lot of fluid was discovered in my lung – a pleural effusion. I went back to see my surgeon the following day for some results and he sent me off for some blood tests to check I’m not fighting an infection. Basically, reading between the lines, fluid build-up in the lung can be common after big abdominal surgery, especially when mobility has been limited because of pain. However if the fluid becomes the cause of the pain, it’s a vicious cycle and it will just get worse. You can only expel the fluid through deep breathing and exercise, neither of which were possible with my current discomfort. More importantly, there’s a risk of infection the longer the fluid stays in there. So he sent me off once again to get some bloods taken to check my immune levels – an indicator of whether my body is fighting an infection.

2 days later, whilst shuffling slowly around a furniture shop with James, trying once again to be ‘normal’….we receive a call from my surgeon. It’s Saturday, so it can’t be good. My immune levels indicate I have an infection, most likely in this fluid in my lungs. So he has booked me in at Auckland City hospital to get it sorted. There’s me thinking we would go there for a few hours, but no – he tells me to pack a bag for a few days. Great….here we go again!

My first experience of Auckland City Hospital was the Acute General Admissions Ward – now I’m not being a snob but it’s not really the relative luxury of Mercy Hospital where I had stayed privately for my surgery. This ward is rammed – it’s like Limbo: a waiting room for patients whilst the doctors run tests and decide what specialist ward to send you to. I was in a room of 6 beds, in the corner, with nothing but curtains dividing you. At first you try to be polite and keep the curtain open, not to be rude and shut these strangers out that you are forced together with under such unfortunate circumstances. But in no time at all after hearing the life stories and woes of a few loud-mouths, you pull the curtain across, claiming your small space of visual privacy, if not sound. The nurse gives me a gown and tells me to put it on. Hmm, don’t think so! Not getting in that ‘I’m sick’ clothing till I really have to. Another line is jabbed in my arm, the vampires come to take blood…..and we wait. James gets bored pretty quickly so escapes for a couple of hours to do a few ‘urgent’ chores.

Auckland City

The waiting on that ward is pretty horrible. I ended up in there a full day and night whilst they did various tests on me. I was taken off for a CT scan first to check for clots and any nasties in my lung then I was told by one of the doctors on my surgeon’s team that they would be collecting me shortly for an ultrasound scan. They would use the imaging of the scan to mark a cross on my back where the fluid level is, then they would aspirate some fluid off my lung in that spot using a needle (thoracentesis). Sounded pretty simple! I waited and waited after the ultrasound had been done….but nobody came to take this sample of fluid. At about 10pm I asked for a sleeping tablet to help me sleep, assuming it would be too late to be doing it now so I might as well try and get some sleep on this noisy ward. Before I know it, there’s the doctor in my cubicle waking me up to take me for this fluid sample. I shuffle along bleary-eyed behind him in my slippers, still half-asleep, to a procedure room. He sits me on the bed and starts fussing around the room collecting the apparatus he needs. He leans me over a hospital table with some pillows, then he disappears out of the room whilst I try to keep my eyes open. It’s 11pm but it feels like 3am after the sleeping tablet I stupidly took. Stupid!! Suddenly he returns with another doctor in tow, who swoops in and in very rushed words he explains how he will give me local anaesthetic first so I shouldn’t feel a thing. All of a sudden, I feel nervous – feel what?? Is it going to hurt? I thought it’s just a needle? No sooner than my doubts had entered my head, he is jabbing the area on my back where the ultrasound lady had marked the x. Now, you’d think that local anaesthetic might need some minutes to take effect….but clearly not in the opinion of this whirlwind-of-a-doctor. Straight away, he jabs in a large needle and a sharp pain catches my breath. This really isn’t meant to hurt like this, surely? Involuntarily my lung starts convulsing into blood-filled coughs, that notorious metallic taste filling my mouth. The nurse suddenly appears with a sick bowl as I retch and cough mouthfuls of blood into it. What is happening to me? Am I dying?? I have NEVER coughed up blood in my life….and this was not just small amounts. “Oh dear”, says the doctor….”it seems we have a lot of blood that has stained your fluid too”….and with that, he squirts a bit across the white bed-clothes, as if to prove how red it was.

My head spins and I begin to black out, and as the nausea sweeps over me and the nurse plants an anti-sickness drug under my tongue….memories of my hideous week in hospital come rushing back. I stay there for a while, just leaning over that table, waiting for some peace to return to my soul, the nurse patiently sitting by my side. The doctors are long gone – like a whirlwind in and out. Once I’ve pulled myself together, the nurse leads me back to the ward…where a lady with a rumbling appendix has just been admitted into one of the beds in my room – she’s screaming out in a lot of pain….nobody is going to sleep tonight!

I lie in bed listening to that poor lady cry out…..then start thinking, WTF just happened to me??

The next day is Sunday – I wake up early, as you always do in hospital, with a nurse pulling more blood out of my arm and checking BP etc. I am promised a bed upstairs on the respiratory ward but I have to wait. James had been out with the rugby crew the night before so I expected no response till lunch time. So I settled in for a tedious morning of reading my kindle and inadvertently eaves-dropping everybody’s life story in the ward. Mid-day rolls around and still no word from James. So I send a tentative text. An hour goes by and still no response. His phone is off. Irrational, panicky thoughts creep in. I message a couple of people he may have been out with and nobody knows. One friend tells me not to worry, he’ll no doubt be asleep – but worry is something I’m afraid you just can’t help doing whilst in hospital. Everything seems ten times worse in there and worst of all you are incapable of going anywhere to solve these problems – imprisoned by your own poor health. After a while, tears rolling down my cheeks as I think of all the worst-case scenarios of what could have happened to James….he calls me, hung over, profusely apologising. He had slept in and the phone had run out of juice and wasn’t on charge.I didn’t care any more, the relief was unbelievable….I had totally over-reacted and it made me realise how badly I just wanted to be well and back to normal, living a healthy life with James away from all this drama. He was so sorry…..felt terrible for letting me down, but to be honest, it was about bloody time he misbehaved after the stress of the past few weeks! I just wanted to know he was safe.

Later on I had a visit from the doctors who had dealt with me the night before – they both apologised profusely for the way it was handled and how much of a shock it must have been for me. However, to be fair they had warned me that it is difficult to get the needle exactly in the space between the lung and the chest wall (the pleural space) to collect the fluid sample. By leaning me over that table, they had stretched out my back too far and thus over-shot the mark made by the ultrasound and as a result punctured my lung. Strangely, I was actually relieved to hear this. Better to be coughing up blood due to a punctured lung than for any other sinister reason. Having just had a large tumour removed that was growing into the main vein leading to the lung, there was always that worry in the back of my mind that it may have spread up to the lung in the blood stream. Distressing as it is, give me a punctured lung any day!!

Another doctor comes to see me to tell me that they have decided that I will need a drain to be inserted into my pleural space to drain off the fluid. More drama! She goes through in detail how the procedure is done, sensing my anxiety after the previous night’s experience. Unfortunately, the same procedure of using ultrasound marking then a needle is needed to get into the space where the fluid is for the drain pipe to be inserted. She assures me that this time, she will sit in on the ultrasound to see exactly how I am sitting so that she can re-create it and make sure the needle is inserted accurately, unlike the previous night. She filled me with absolute faith in her ability as she calmly talked it through. And best of all, she said it would all take place in my own private room on the respiratory ward later today, I would be sedated with plenty of pain relief….and James would be able to be there for the procedure.

More tedious waiting, a visit with coffee and muffins from my dear friend Sallyanne….then finally they came to collect me to take me up to the respiratory ward. I won’t say I wasn’t crapping myself about the procedure…..crazy really that I would be that nervous about having a little pipe put in my lung after everything I had been through at Mercy hospital. Unfortunately though, a bad experience stays with you…..and I didn’t enjoy coughing up clods of blood. Clearly the blood thing was bothering the doctors too….a few came to visit me asking questions: “have you ever coughed up blood before?”…”no!”…..”what colour was the blood”……”errr, red?!”……”yes but what type of red? Dark or bright?”……”oh, I see. A bit of both. Bright red with dark red cloddy lumps”. “Hmmmm…..so you’ve never coughed up blood before?”……”(sigh) No!!!”.

Before we left, as if to remind us how lucky I would be to get out of this place….a cross-curtain fight nearly broke out between three very grumpy old men. Admittedly, the guy who sat on his mobile phone all day with a really loud voice telling everyone and their Aunty about his infected foot, yes he was pretty annoying. But the foul language and venom that came out of the cubicle opposite telling him to basically shut the F up….was pure comedy. Then the old guy in the corner pipes up to join in! If it wasn’t for their respective illnesses keeping them in their beds, there would have been fists involved, for sure. James and I are literally squeaking with laughter trying not to be heard through those thin curtains…..they might have been old but MAN they had fire in them! I certainly didn’t want to cross them!

Bye bye Acute Admissions Ward. Even with the grim prospect of my lung drain looming…..I was still delighted to get out of there!

Cuisine of the Acute Admissions Ward