Red, hot, and sweaty

I had initially started this post from a hospital bed. Some fairly illegible scribbles were made to the terrible tunes pumping from my first roommate’s radio. Honestly, she turned the radio on at 7am, the volume slowly increasing as the day progressed. At one point I was scribbling to ‘A Whole New World’, which I at least found comical, but otherwise the station played just far too much Whitney. The following day I was treated to Mike Hosking first thing in the morning. Torture, I tell you, torture! Rather than biting my already raw tongue I opted for earplugs, which raised eyebrows and questions from passing nurses. Apparently I was the odd one.

    

There has been substantial action since we last conversed, however, I shall tell you from the outset that I am still awaiting lymphoma confirmation. It is difficult to know how to write this post. Flicking through my inpatient scribbles, the legible ones that is, I am struck down by boredom. An essay on all that I have done this September is not at all interesting and so I think I will begin with the most recent experience with hope that any gaps will be filled in as they rise. Let us see how that goes.

Ah, I am already going to digress! The plan did not go well at all. Time for a new plan. As I have mentioned, I have been feeling rather poorly since mid-August. Mainly rigors, fevers and sweats, although there was a period of nausea as well. The tendency is for these symptoms to persist a few days until I confess them to the haem team and am placed on antibiotics through the haem day unit. Initially it was Augmentin for the gum infection. At the next sweaty presentation they opted for regular blood cultures but held off on the antibiotics. That was until a set grew Micrococcus luteus from both lumens of my PICC line. We know it was Micrococcus luteus now, but it takes a while to determine the species of these little beasts and thus I needed a course of vancomycin. Here are a few fun facts about vancomycin: it has poor oral uptake and therefore is given intravenously, it has a higher toxicity than other antibiotics I have taken and therefore is administrated over a two hour period, and it has a short half-life so doses are required every twelve hours. I was obliged to report to the hospital twice a day for two hour infusions, and of course no infusion ever took less than three hours. This routine continued for ten days and although the haem team were fairly certain the growth was merely a skin contaminant, my bloody symptoms subsided (for a mere four days) therefore they had to proceed as if I had line sepsis. I subsequently lost my PICC line and am requiring cannulae and needles again.

Yup, all that is still boring. I think it is in part an attempt to justify my radio silence. Over the past fortnight, possibly longer, I have spent a minimum eight hours a day in Wellington hospital and I am not even working there. Last Thursday (maybe, time frames are becoming a little fuzzy), on top of the vancomycin, I had another surgical biopsy. The surgeons opted for the right axillary nodes (under my right arm) as they had shown themselves as ‘hot’ on my NZ PET scan. I cannot even remember when the PET scan was. I remember that I was pretty unwell for it and they let me lay my arms at my sides throughout, which I appreciated. I think I fell asleep during it. Anyway, the scan is still showing hot nodes and gave the surgeons further options for excision, including the right axillary. My response to the general anaesthetic during this last surgery was far from admirable. I stated my pain level as four out of ten to the recovery nurse, then began physically squirming, perspiring and potentially groaning. “It is not really a four is it Olivia?” “er um no” cue further opiates. The old lady opposite had undergone cranial surgery yet was displaying few pain symptoms. My attempt at staunchness was a pathetic failure. Do not fear, it does get worse. The surgeons decided to keep me overnight and thus I was introduced to my nurse, a girl a few years my junior who had attended the same schools as I from primary (possibly even kindergarten) to high school; one of those individuals you have known your entire life yet you do not actually know in the slightest. She may have gained a little insight into my psyche as I hurled up bile, shivered uncontrollably, and then proceeded to flash the entire ward due to a sexy hospital gown malfunction. No, the general anaesthetic was not as fun the second time around.

At this point I had had another four day ‘rigor free’ period. I had a brief shiver attempt at the haem day ward the day following my surgery, a shiver that resulted in the loss of my PICC line. The remaining three days of vancomycin was delivered via a cannula, as was an impromptu blood transfusion (not phenotyped, by the way, but I guess this is less of an issue now). As it turns out vancomycin is a pesky drug that likes to irritate veins. Presently I cannot straighten my right arm, and although it is not at dacarbazine level, my arm is bloody sore.

Sorry, I was discussing rigors. Friday, I had a minor chill, Saturday a decent rigor, fever, sweat combo, and by Saturday night I was back to a six hour rigor routine. I had feverish dreams where I attempted to get to A&E but for various reasons could never arrive there. Sunday I did not rigor but I did feel warm all day and when I finally conceded to a temperature check Sunday evening, the thermometer revealed it was in fact 40°C. And so we packed an overnight bag and walked across the carpark to the emergency department. I always feel incredibly nervous when attending A&E. I feel as though I am never sick enough to warrant a visit. A component of my feverish A&E dreams was a fine from the ambulance drivers because I did not actually need to attend A&E and therefore I was responsible for the car crash that had occurred (in an underground car park; it made perfect sense at the time, don't question my dream logic). I had been in a daze for most of the day, I definitely felt unwell, but it turns out along with my 40°C fever I had a heart rate of 170. The A&E screening nurse tested the heart rate monitor on himself as he thought it was broken. Although standing was extremely difficult and concentrating on my personal details was nigh impossible, I did not feel as though my heart was beating quite that fast. I was placed in the acute unit in A&E, which may have been overkill. On the floor there were squares indicating the places each clinician should be standing, I guess for extreme emergency cases. In the room beside mine, which was separated by a curtain and a three quarter wall, The Wiggles played loudly on repeat to pacify an ill youngster. I must say that Hot Potato did little to ease my heart rate.

This little episode of mine lead to my admission. IV fluids and antibiotics were administered using a brand spanking new cannula in my left arm, my right being bloody painful and all. The Scottish nurse got the cannula in on her first attempt. I thanked her profusely for her efforts. During my stay I displayed my rigor, fever, sweat combo for all the clinicians to see. I began sleeping, or at least laying, on a towel at night. A red rash had developed on my right forearm. Gradually it spread and now I have the fortune of rocking a full body rash, which is oh-so-attractive and does not at all scare the general public. It turns out I have a drug allergy, but good luck trying to figure which drug it is; any that I have had in the past four weeks is the answer. I guess we’ll find out the next time the culprit is administered, in the meantime I will continue to itch and scratch until it subsides. 

Eventually they released me from the ward and from my second roommate - a roommate that did not require a radio to be utterly annoying. I am thinking how to best briefly summarise her irksome qualities. They certainly cannot go unmentioned, so here goes: shrill unrelenting voice (my earplugs did little to block her pitch), lengthy explanations, exasperated doctors, physically waking me at seven in the morning and a new found love for her religion. This is only a small selection of her many endearing attributes. Therefore, when I was offered the opportunity to return to the cancer accommodation I responded with a vigour that may have been mistaken for good health. It would not have ended well if I was to endure another night with my new friend. As was noted on my discharge summary this little episode, and those prior, are most likely due to my underlying yet unconfirmed disease.

I am aware that this entry has gone on for a while now, and possibly there are few that remain reading, but there is one final aspect to my latest inpatient installment that I feel compelled to comment on. I must confess that I am always surprised when clinicians are polite to me as a patient because my employment encounters had left me with a rather different, some may say less favourable, view. I like all the haem registrars that have treated me, both in Wellington and Brighton. Fortunately I have never worked at either hospital. My career (career being a loose term) is starting to cross over quite seriously with my treatment. Firstly, I am having a few issues surrendering my blood to unknowns in the lab. In the UK the majority of my monitoring bloods were tested in the laboratory I worked in. Even in the Brighton lab I had contacts. Now they are tested in a lab where I know no one, nor their procedures. Perhaps these are control issues that ought to be addressed in a forum that is not so public; but then that is no fun. 

Before my last blood transfusion I sent the first unit of blood back as it was not irradiated. My first day on the ward, it took the doctors seven attempts to get a vein that offered any blood. The vein happened to be in the same arm as my IV fluids and thus the sample was diluted. The lab rang the ward in a panic (I am using dramatic licence here) with a surprise low Hb of 62. I told the nurse “No, it isn’t that low. The sample was diluted and the lab should really have picked up on that”. Liv was grumpy at the prospect of more needles and therefore was disappointed in the lab for failing to detect the diluted sample. She had been testing their ability, a competency assessment if you will. Three more needle attempts later and we had a decent vein with good blood flow, enough to fill a FBC, two coags (overkill right?), a group and save and a chem sample. But alas! The label from the FBC happened to stick to the label of another tube and therefore was deemed unlabelled. I had been pricked ten times already and was facing further needles. The registrar was devastated and, perhaps, the lab rat received the brunt of her frustration. All I know is that she actively conveyed to them how difficult I was to bleed. I suggested that the lab use the spare coag sample to obtain the Hb, which was the only result they actually needed. It is a simple calculation, merely multiply the value by 10/9 and you will have a fairly accurate figure. Fairly accurate was all that was required, merely a confirmation that my Hb was above 80. 

I nearly volunteered wandering up to the lab and doing it myself, hospital gown and all. The indignant scientist refused my citrate suggestion and even went to the effort of taking my doctor’s registration number, presumably to lay a complaint. In the end the repeat sample had to come from my foot. At this point even I was angry at the lab. I wonder which was the worse outcome, an off the record haemoglobin, or cellulitis of the foot due to an infected puncture wound? I think sometimes we scientists may take our job a bit too seriously. I imagine a few wry smiles have appeared on the lips of former colleagues at my last statement. “I hate catchy choruses and I’m hypocrite; hungry, hungry hypocrite” I hmmm, tunelessly.                            

A blood and plasma transfusion; mixing both work and play

When I first started documenting my thoughts 21^st century style (i.e. online) I thought this particular subject matter would be an easy post. There have been many mental notes made, but now, as I take a break from designing New Zealand’s new flag, I am surprised and disappointed that I never committed these thoughts to paper. Or to file; whatever you call typing. Past Liv has let present Liv down as, five months or so later, shrouded in fatigue, I am attempting to recall these little gems. And gems they were, I can assure you, even if the content from here forth resembles quite the opposite.

Ok, I confess, the gem part was not exactly true. Initially I thought this entry would be rather interesting; a woman who works processing and issuing blood receives a blood transfusion – the next bestselling novel! But no. Each time I prepared myself mentally to write about it, I was struck down with vicious boredom.  Baring in mind that I am an awkward uber nerd – you should have heard my shriek of excitement when I discovered a monocyte participating in some hearty thrombophagocytosis on a blood film just the other day – yet still, writing this post was difficult and tedious. Even now I am procrastinating, two paragraphs and nothing interesting has been said. Except thrombophagocytosis. I am somewhat concerned that this will end up reading much like a reflective learning piece rather than a documentation of my thought processes, if this happens I do apologise, but be rest assured it will help me should I ever be audited by HCPC. The next paragraph, particularly, contains a bit of science. You have been warned.

We are flashing back to December 2014. My New Zealand readers are probably imagining glorious sunshine, the spring green grass beginning to turn yellow and their first sunburn of the season. Humph. I am yearning for a New Zealand summer, so I am dismissing your mental visualisations with contempt. No, this was Britain, so it was grey, bleak, cold, wind blowing from three directions, wet and the green grass was really brown sludge. Gumboots are fashion items over here. I had begun my sojourn in hospital. Upon admission my liver function enzymes were deranged, so my liver was not operating at its best. The liver produces some factors that enable coagulation. These factors allow platelets to form a plug and stop one bleeding to death. The liver dependent clotting pathway is measured by an INR test; most commonly used for monitoring patients taking Warfarin. Warfarin is a vitamin K antagonist, vitamin K is needed for hepatic cells to synthesise some clotting factors. I am trying really hard here not to launch into a full scale animated coagulation pathway lecture including an analogy where tissue factor is a fire alarm, platelets are firemen, contact activation is the water from the firemen’s hoses, and vitamin K is the dalmatian running around offering moral support. I could go on. And on. 

Warfarin patients tend to clot too readily, hence their need for warfarin. Fun fact, warfarin is also rat poison; the poor bastards bleed to death internally. It is the one flaw in Wild Tales. The therapeutic INR range for warfarin patients is 2.0 – 3.0, for non-warfarinsed patients it is 1.0. My INR was raised, 1.4 for those interested (which at this point I believe is probably no one) so I was at no risk of spontaneously haemorrhaging but if I was to undergo a procedure, say a lymph node biopsy, I had a high risk of bleeding.

Could this be New Zealand's new flag?

As I was to undergo a couple of procedures, the decision was made to give me three days of Vitamin K. This did not involve increasing my kale intake Brooklyn style, but intravenous administration. Some interesting notes, kale tastes better than intravenous vitamin K so eat your greens kids, and the vitamin K made me feel moderately unwell. Another amusing side note, I still received my tinziparin injections. After three days of vitamin K and no change to my INR, I was informed that a plasma transfusion was the only solution. 

I had recently undergone intense training in the occupation of issuing blood products for transfusions, and we all know that a little knowledge is a dangerous thing. What could go wrong with a plasma transfusion? Well, what couldn’t go wrong?!! TRALI, circulatory overload, anaphylactic reactions… not to mention CJD. I was not born in the UK now I run the risk of contracting mad cow disease? I do not even eat meat! I mumble a demand of methylene blue plasma. An attempt by the consultant to reassure does not mollify me ‘we only use Octaplas plasma so all viruses are deactivated’ ‘It’s the prions I am worried about, not viral transfer’. A scolding look from the consultant ensued. I assume my fellow transfusionists are shaking their heads at me; Octaplas treatment also damages prion ligands, so I was safe and sound and should have been well aware of that fact. But I was dying at the time (cue background violins), so please allow a little leeway. Another irrational concern of mine was they had not tested my INR since my morning dose of vitamin K. What if I became over coagulated? Skip the DVT, my brain is being exceedingly illogical here, it would be straight to pulmonary embolism and instant death. Have I mentioned it was an out-of-hours transfusion? Yip, 2am as my procedure was scheduled first thing in the morning. More first thing than 2am. I ask the night nurse to inform the lab of the midnight request. I have worked nights, I would appreciate the warning.

The plasma (FFP) transfusion itself is mildly painful. It is quite a viscous solution and, as it stored in frozen form, it is transfused at a rather coolish temperature. My already petite veins contract in protest. Being the middle of the night, I begin my obligatory uncontrollable lymphoma rigors, not perfect timing given I am thirty minutes into a product transfusion. I desperately try to reassure the nurse that this, for me, is a normal circadian response and not induced by the FFP. A sympathetic smile; this is my third evening under her care, she is quite aware of my nightly antics. Three bags of FFP transfused, no adverse side effects and a corrected INR. Oh and the procedure is cancelled. Too risky, the surgeon refuses. The large purple bruise on my right hand, a prominent feature for the week prior, heals in about twelve hours. Quite phenomenal.

By now it is Christmas Eve 2014, I have been in hospital for 10 days. The frequently promised lymph node biopsy is again scheduled. Once that is complete I will be discharged! The nodes are a little problematic, the abdominal nodes are massive but inaccessible. Small things like kidneys, bowels, aortas, they’re getting in the way. My neck nodes are more accessible but barley enlarged, and are nicely nested in a pod of blood vessels and nerves.  The biopsy has been planned and postponed three times already. Christmas Eve, however, it is a success and I profusely thank the radiologist. That biopsy was probably the best Christmas present I could have wished for. I wait eagerly in my bunker bed with Mike in anticipation of my discharge. Not since I was ten have I been this excited on Christmas Eve. The haematology team are rockin’ around the helium Christmas tree at the foot of my bed, it is 5pm. They announce they are going to ‘top me up’ as my Hb is 82. I am to receive a blood transfusion.

My helium Christmas tree

I, once again, respond irrationally to this. My heart starts racing, stomach flipping, abdominal muscles tense, if there had been any colour left it would have drained from my face. Why the prospect of a red blood cell blood transfusion provoked more anxiety than a gigantor needle protruding from my neck I cannot explain. But it did. I was unprepared for this announcement. Firstly, it was nearly closing time on Christmas Eve and I thought I was going home. And again a little knowledge…. 

At best a blood unit takes two hours to transfuse, and nobody has only one unit. I had at least four more hours of occupying my bunker. I have to admit I nearly turned the transfusion down. A haemoglobin of 82 is not that low you know, I can survive on that. I believe the only reason I did not decline it was because I was afraid they would refuse to treat me if I did not accept it. This, of course, would not have been the case, but at the time I was convinced it would be. 

When I am at work issuing blood I had never thought much about it; this was my job, you take the blood unit out of the fridge, you cross-match it with the patient’s plasma, make sure nothing nasty will happen, place it in another fridge then mentally give yourself a pat on the back for helping someone in need. But as a patient accepting their first blood transfusion, it was quite a big deal. I do not know why the red cells bothered me more than the plasma. If anything, it should have been the other way around. With the plasma I was paranoid about clinical manifestations, with the red cells it was almost entirely psychological. It is because whole blood is red, it made it more real, even though scientifically red cells are just another blood component. Scientifically, colour is irrelevant.

I did also have clinical concerns. I had intended, but never had the opportunity, to play around with my blood in the transfusion lab, for educational purposes of course. Blood typing is far more complicated than ABO D Pos/Neg. For example, there is more than one type of ‘A’ and so many variations of D that I do not wish to give a precise number as I will probably be wrong. Do not fear, I am not going to delve into the science behind transfusion medicine. If you are at all interested I encourage you to check one of my two internet crushes, blood bank guy. Sigh, blood bank guy. The other crush is Bo Burnham if you must know; yes I am well aware that he is far too young for me. Mike does know of both these crushes and funnily enough does not feel threatened.

I'm R1R1!

Anyway, although I knew I was A Pos from previous blood donations in New Zealand, I did not know my Rh phenotype nor if I had any other cool antigens. Nerdy excitement rose inside me when my first unit arrived and it showed that I was R1R1; how many times have I anxiously searched through our blood bank stock hoping to find R1R1 units! I was comforted that my blood may have possibly made some NZ medical scientist’s day back in 2010 or whenever my last successful donation was. I even WhatsApp’d a friend, who has been known to occasionally share my geeky enthusiasm, mid transfusion on Christmas Eve, an image of my unit. It is fair to say I got the desired response back. 

But suddenly, a feeling of unease overcame me. Not an impending feeling of doom, but a complete doubt of my phenotype. I have never been known for my convenience, it is highly unlikely that my genetics would offer such a thing. I cannot possibly be R1R1. It would make perfect laboratory protocol sense not to phenotype me and, as a woman of childbearing age, just issue R1R1 K neg blood. However I am currently a haematology patient and potentially facing further transfusions, although only the development of a little c antibody is clinically significant, if I do develop an antibody it will make any further blood transfusions a pain in the ass for both me and the transfusion scientist. 

Looking back, my logic was entirely flawed. Statistically, I was most likely to be R1r, so R1R1 blood would not stimulate any sort of cde antibody production. Also, I was that inconvenient patient that made some poor scientist, on Christmas Eve, search through the fridge for appropriate units! In fact, I was meant to have been that scientist, as I was listed to work Christmas Eve at the hospital ten miles down the coast. For the record I have subsequently found out that I am R1R1, and to be fair my immune system at that point was fairly incapable of amounting any sort of response, let alone developing a falsely concerning blood antibody.

The final note I make regarding my entwinement of work and leisure, is that I did not receive irradiated units. Hodgkin’s patients need irradiated units as they are at risk of GVHD (donated passenger white cells bury themselves into your marrow and start replicating as if they were your own, but they are not, so your body tries to destroy them and ends up destroying itself in the process).  At this point my official diagnosis was a mere formality, we all knew I had Hodgkin’s lymphoma, I was in the cancer ward and under the haematology team. I was obviously not at risk of GVHD, because they would not have chanced that particular side effect, so if anyone out there can tell me why I was not at risk then but am now I would be eternally grateful. I assume it has something to do with the chemo. Also, if anyone could tell me why Hodgkin’s lymphoma patients are more susceptible in the first place that would be appreciated, because I have not yet found it in scientific literature. Thanks!         

A tale that goes nowhere

Mike has requested a prompt follow up to my previous post. He is worried that you will be unjustly concerned for my wellbeing. But I know my readers would prefer an ever popular Shortland Street cliff-hanger rather than a cheesy happily ever after fairy-tale conclusion. A fairy-tale would be a lie anyhow; I am far from a princess and there is yet to be an ending to this story. Do not fear, the Shortland Street theme will be short lived; the last time I caught an episode Dr Ropata was still a regular character, I can’t keep it up for an entire post. So, this entry is to appease my husband, but I need you to know that I have no intention of deceiving you.

I have noticed, with a tinge of remorse, that I have only managed two posts this month. Granted, I still have a day to push the number to a staggering three, but I feel the number two is an accurate portrayal of exactly how I have been feeling, a proportional relationship to my energy levels, although there are only two points of reference so not really statistically significant. But psychologically significant, I can assure you of that. I have been running above my physical capabilities for the last month. My down time is almost exclusively occupied by sleeping, or at least in a horizontal position with a desperate hope of sleep. If I am lucky I can find enough energy to read, but even that pastime has suffered greatly. That makes writing, a hobby that requires a significant amount of my already limited brain capabilities, near impossible. It takes a week to write a post and a week to tidy it up, thus explaining the meagre two I have managed this month. I find this utterly frustrating. It is not as though I am incapacitated, I am walking and talking and breathing, yet internally I am aware that every tiny little task I undertake is requiring more and more conscious effort. It is as if I have lost or am in the process of losing all innate thought processes; I need to actually remind myself to lift my feet when walking up steps, elsewise I run the risk of ending up the next stairs fail YouTube sensation.

The compounding fatigue is also making work difficult. No longer am I able to lighten the day of my workmates with my charming anecdotes and whimsical smile. The task at hand is all I can concentrate on. There are no explosive starts to address urgent results, blaring telephones or bleeping analysers. Well actually I am still attempting these spurts of anaerobic BMS-ing (the most active laboratory based career I can assure you) but I cannot sustain the energy levels. The fatigue comes on too quickly. It has already risen, cast its blackened clouds around my brain – lightning, thunder, hail, clearing fog - before I am aware of what is going on. I am the three year old child, inconsolable, merely because her elder sister is standing too close to her, frustrated because she is not entirely sure what is going on in her brain, and cannot appropriately communicate that all she really requires is a nap and quite possibly some chocolate.

My thoughts end up entirely engrossed with my health and my work. Don’t worry, the irony is not lost on me. I am well aware that these preoccupations are going to negatively impact performance in both areas. But I cannot seem to break the feedback cycles. One upregulates the other, which in turn enhances the primary initiator. If only we were talking about diuretics, aquaporins and renal water absorption, then I might actually be able to contribute some knowledge on the matter. But no. I am scrambling in the darkness of a long foreign corridor, socks slipping on the polished linoleum, desperate, in search of a light switch that may offer me the correct path forward. I guess the obvious solution is the cessation of my employment. It is more than stubbornness and pride that is preventing this outcome; I do need human interaction to stay sane and, in a startlingly humble admission, work is where the majority of this interaction happens. I like my colleagues, I look forward to seeing them each day, but it is possibly the wrong reason for dragging my ass an hour each way across Sussex four days a week.  We don’t want another ‘hide under the bench’ episode now do we?

That was all a bit wanky wasn’t it? I may have pushed it a bit far with the corridor analogy. I was hoping for a Mansfield flare. Shoot for the moon, if you miss you'll land among the stars. What a ridiculous proverb. The moon is closer than the stars. If you shoot for the moon and miss, which you will because of, you know, gravity, you’re only going to end up with a face plant on the surface of Earth. This is exactly what happened with that Mansfield attempt. I am all for metaphors, but the overuse of phrases a six year old's rationale could destroy really grinds my gears. I believe it may be a Wilde quip as well, although probably a rework of an older proverb. Way back from when astronomy wasn't really practised. 

Don’t worry, I have just taken a little break to read a few of excerpts from the Australian version of Card’s Against Humanity. It will be crass from here forth. Political crass, but crass none the less. All it requires is a little perspective to make me cease my moaning. By reading those cards I was reminded of the suffering the poor Australian citizens have gone through. I had almost forgotten that Russell Crowe’s band had actually been a thing. Anybody who has seen Les Miserables will indeed sympathise. It was a tragic period in history. I could have gone anywhere with that tangent, be grateful it was as clean as it was. It is a little early in my life as a blogger to start inciting internet outrage.

I had intended to burden you with my thoughts and feelings on blood transfusions, but I shall postpone that for another day. I know, I can hear the cries of disappointment echoing around the globe. You’ll just have to wait. I have rambled on in mild self-loathing and moderate self-pity for long enough, I believe. I realise that this decision has made the post rather short, but hopefully it will make Michael happy and let you all know that I am still alive. I do feel much better after writing this, although it has taken the entire day. And I suspect the sneaky glass of Alsace Riesling may have also added sufficient lift to my mood.