So, lets recap
- Lots of anaphylaxis
- Lots of good drugs
- Nebs are life
- Strawberry Walrus FTW
- Sausage dog pants are hospital attire goals
- Social anxiety jokes are not my forte
*** Disclaimer ***
You are going to be made aware of a family nickname for me, rules of engagement is that you can under no circumstances think that it is not a brilliant nickname.
So, we've taken the plunge- I'm being moved to the respiratory ward- wooo, lets get these lungs sorted!!
So off we go to new exciting times, new roommates, new consultants who can hopefully shed some light on whats going on.
Safe to say, I am hands down the youngest person on the ward, with no exaggeration that the median age is most likely around 112 years old. So its safe to assume that conversation isn't going to be overly riveting.
I get myself comfy, have my trusty nebs whacked on and may have attempted to just do my own admission paperwork- anything to keep my brain from turning to mush.
Its a pretty bog standard first night- a few episodes of "Oh christ I really cant breathe" and a respiratory rate that makes a preterm look like they're barely breathing. As well as there being exceptional breathing work going on, we also had an all night cough off between the four of us. Throw that in with my very sexy husky voice- I was fitting in to the 112 year old lifestyle.
Around comes 11pm and my phone starts to ring- a face time from my sister Meg. I had told her that I had just had a flare, and she is someone that is fascinated by the weird wonderful thing that was happening to me. So I answer- looking the healthiest I've ever looked to find her in very familiar surroundings... Yes, my sister and dad had travelled up and were currently sat in my living room. Looking like the cat who's got the cream, she starts to have a dance around my living room chanting "I get to see you tomorrow".
Now, I cant begin to try and explain my sisters dancing style, its a mix between Stevie Nicks high on LSD and big bird from Sesame Street.... its unique, and frankly- quite epic.
Instantly, I'm being badgered about when she can come in and grill the doctors. Now, I love my sister, she is a force to be reckoned with, but she is also unrelenting. God help the doctor that comes across her!
"Carebear, I'm gonna bust you out and we can go find some hot doctors!" she has a massive grin on her face! Oh good god, what have I let myself in for.
* Yes, my nickname is Carebear.... The bear that cares! It's epic, don't deny it- you're just jealous you're not carebear!! Even my nephew knows me as Aunty Carebear *
I sit there, the neb helping my breathing to cope with her dance moves, and absolute certainty that all hospitals are like Greys Anatomy- I don't have the heart to tell her otherwise.
We say goodbye, and for the first time in a few days, I feel a bit happier. Having my sister around, as much as we can annoy the crap out of one another, she is the one person that can make me feel better no matter whats going on.
So another night of more steroids, more nebs, and a bay full of snorers later, we get to the holy grail of NHS Tea and Toast round. It is amazing how much your day revolves around routine when you're an inpatient. Your day starts when the nurses starts- regardless of whether you want it to or not. So when you've had no sleep all night and finally doze off at 7am to be woken up loudly at half 7- it can be frustrating to say the least.
We go through the motions of drugs and breakfast and more drugs, and here comes ward round! I think of all the questions my sister will want to ask them to save them from her!
We go through the
"Take a deep breathe" debacle again... seriously guys, ask something else, anything else! I beg you! I'll do anything else, but deep breathing, at this moment, I'm about as good as a chocolate tea pot at!
And we're still nowhere closer to answers.
We've got a few hypotheses
- An allergy to a virus
- All of your immunoglobulins have decided to take up camp in your lungs (said in far more medically terms)
- Eosinophilic asthma - NO THANKYOU
- A continuous reaction
- Anaphylaxis associated asthma
- Anaphylaxis associated lung damage.
- Mast Cell Activation Syndrome
Ok- so a list full of all the things I realistically don't want, and a list that really does sound like absolute guess work!
Also a list that I'm going to have to explain to the big sister- even more worrying. Especially when speaking in full sentences is the equivalent of Donald Trump being a likeable character.
So, there I am- sat looking my rock star best- Blotchy, grey, clammy, I mean words that they use to describe Gigi Hadid...
...and I can hear the click clack of heels walking down the corridor. I know its her before I can even hear her!
There she stands, my wonderful sister Meg- the most glamorous hospital visitor you have ever seen in your life...
Her Blonde hair is perfectly curled to give loose soft waves reminiscent of a runway model, her make up is ON POINT ( in my head I'm thinking what an absolute bitch, she could have at least made herself look at least a little shitter than she did!!) And there she is in bloody high heels! I mean, who wears high heels to a hospital?!? I tell you who, my big sister.
In she comes, looking bloody picture perfectly beautiful- as she always bloody does (it's really bloody annoying, she smart, beautiful, funny and makes beautiful children... basically I hate her a little)
I am inundated with bags of clothes, food, magazines, toiletries- she's literally thought of everything.
"Oh Carebear.... how are you, what have the doctors said, what is their plan, when do you see the specialist. Can I speak to the consultant..."
Right, now its time to manage the onslaught of questions. I give her the update in the hope that no poor doctor walks in to her black widow spider web of questions.
It's all from a place of worry and care- but she is a force and she will not let this go until she is feels suitably placated. To be fair, I'm the exact same when it comes to her.
We sit there catching up, going through whats already happened the past 5 days, and then we decide to be brave, she's going to bust me out so that I can finally get some fresh air! Its also the perfect time to drop off my sick note to the unit and buy my girls some sweets so they know I haven't completely abandoned them.
As only my sister can do, she disappears and comes back with a wheel chair. She grabs my epipens, inhalers and we time it so that I stock my lungs up on a neb, we dose up on antihistamines and steroids and we feel we've got at least an hour where I can be classed as relatively safe to leave the ward.
"Right, lets go kiddo..."
And we're off... she is by far the worst wheelchair driver in the world. We barely miss walls- I mean big full walls, she just doesn't seem to see them. But we're doing it.. we're busting out!
We send this picture to the family whattsapp group to show us busting out.. much to the parents disapproval. But we're out and we're off to explore the delights of the hospital, something my sister is overly excited about.
We decide to go and grab something to eat at the canteen... and my sisters mind was blown!
No, not for the extortionate hospital canteen food prices, but as she so eloquently put...
"The untapped pool of dating hotness that is the hospital canteen"- her exact words.
She even picks out the perfect "Scoping" table...
I remind her that my current look is not dating compatible... (photo above, case in point!)
My sister can often remind me of an american when they ask
'You're British, so do you know Prince Harry?'
Every person she found remotely attractive- I got
"So who are they? Are they a doctor? Do you work with them?"
We went through her insane detective/ hyper-observational skills-
- That one doesn't have a wedding ring
- He may be bald, but he has a cute face
- He's not your normal type, but then, how well has that gone really?
- Even in scrubs his bum is good.
Then came the scrutinising of why I hadn't tapped in to this resource...
Trying to explain that its very rare that we get lunch at this time, we're often far too busy on the unit. If I do come to the canteen its horse blinkered- you're in, out, with the least amount of human contact as possible, and realistically I look like a a sack of potatoes in my uniform, I'm usually hot and sweaty as the NICU has the temperature control of the sun.
"But carebear... look at them all. Its like a sweet shop of hot doctors! It's the equivalent to a hospital nightclub but during the day and full of sober people!"
Oh god, what kind of monster had I created bringing her here.
"Carebear, seriously- you need to be eating lunch here, how have you stayed single this long with this much potential around you!!"
I can't deny that for the first time in well over a week I was actually laughing and forgetting about what was going on and the uncertainty surrounding me. It was so refreshing, ridiculous in every sense- but my god, I felt like more than a pincushion drowning in drugs.
We sat there for a couple of hours- watching the world go by, and it really was good for the soul.
"Seriously, If I wasn't married, I'd be all over this carebear... "
After a couple of hours, I was starting to struggle again, the burning rash was back, and the chest was getting tight- so we left my sisters slice of north west paradise, much to her disappointment, and headed back for some more nebs and some sleep.
Over the next few days I continued bouncing back and forth between good days and bad days- days where I could reduce my neb use, the others where I could barely cope without.
Having my sister there though was HUGE.
I still managed to ensure the doctors were hidden from her, to save their poor ears.
We were still at the list of multiple unknown causes.
The doctors already admitted that they realistically aren't going to be able to tell me whats going on... the best they're going to be able to do is symptom manage until more testing can be done- and that wont be for a long while.
This whole statement hit me harder than I thought it would. I wanted to leave hospital with a proper plan, with a diagnosis, with at least a clue of how I could keep myself protected- but that was now out of reach. I wasn't getting that.
I cried, I cried a lot... I'm not sure if out of frustration for not knowing, anger that I was getting nowhere and I was at day 9 of being an inpatient with no marked improvement. The words "Not Medically fit for discharge" were the most soul destroying I had heard.
I was pretty low by this point... my life now, until these reactions stopped, until my breathing was remotely back to normal was just covered in question marks. When would I be able to go back to work? What will happen if I go in to shock again? What happens if I forget to take an epipen with me everywhere I go? What will happen if I stay on long term steroids- what will that do my adrenal glands?
This was my thought process every minute of the day that I didn't have someone with me.
It was a fairly lonely place to be, and one where I felt selfish being in. For god sake- its an allergy not something life threatening I would keep trying to rationalise to myself... But it was life threatening, it is life threatening... and I have no idea what it is.
The only time my brain wasn't thinking like this was when I had people around me, they took those thoughts away by keeping my brain occupied. My sister was there from the minute she could be until the bell was rung to let everyone know it was kicking out time.
When friends came to see me when she was visiting- the conversations were hilarious. My sister is the furthest away from being a nurse you can imagine. She runs her and her husbands business, she is savy and smart but is completely oblivious to the world that is the NHS. The conversations she had with work colleagues, including my matron were beyond wildly funny- her facial expressions- I wish I had recorded!
But even with all these people around me, taking my mind off things, she could see past the neb covered smiles. She could see when the burning rash was getting me down, because she knew how my brain works.
So she did, what only my sister can do best....
She grabbed my phone, and with an absolute gleam in her eye she downloads Tinder......
"Right carebear... time to find you some fun for when you get out of this joint!"
Good God, what have I let myself in for...
***The Megan Reeve Tinder Profile Essentials List ***
Tactical Use of emojis can be highly effective
Dwell Time- You have seconds to grab attention
Considered use of language- ambitious is great, but passionate is better
Swipe Right on guys that aren't your type. They might surprise you
Have a little Instagram stalk if possible to weed out the w*****s
This meant a whole revamp of the very basic profile we initially made- and it made for hours of swiping left and right enjoyment whilst being poked and prodded by needles and doctors. I'm sure you can imagine the multiple jokes and innuendos she came up with with every poke of a needle.
"Carebear... you being sick may be the best thing that's ever happened for your love life. Use the I'm sick and in hospital line for sympathy points.."
Safe to say, my phone disappeared in to her hands- her joy when a match showed up got all the other old ladies in the bay laughing.
She was that twinkle of joy when all of us were tired and feeling grotty- and for her, she was living vicariously through my tinder profile.... And she didn't do a bad job- although, some choices were somewhat suspect!
Her hospital dating game was strong, and I'm pretty sure it should be offered as an NHS service, I doubt she'd even charge!
The older ladies loved this spring of blonde bubblyness- that nothing was too much to ask her. So when my next door neighbour asked her for a commode- my sister happily obliged, before turning to me and asking
"What the hell is a commode".
Her face when the explanation came was priceless, but she was a good sport and went to find someone to help, before turning to me and asking me if I used one...
I may gasp for breath at the slightest exertion, but I can manage to waddle to the loo Meg!
I loved having her there, she made the endless days of tests and frustration bearable and the night she told me she had to go home, I felt like I was loosing my sense of normality, my step closer to home and physical escape.
She cried, I cried- everyone cried. We were at day 10 of being stuck with no answers and no prospect of going home. With a bank holiday weekend fast approaching, dammed if I were staying in any longer. Tomorrow was the day I am breaking free... answers or no answers... breathing or not breathing.... I am going home!!
So I did what anyone terrible patient would do... I haggled, bartered, and basically sold my spleen to convince them to let me go home.
I puffed on my inhalers every half an hour (without them knowing) to stop the overwhelming desperate need for a neb. It was the hardest thing to try and hide how hard it was to breathe without them- but it was tolerable, no matter what it did to my heart rate.
I convinced them to give me and even higher dose of steroids to give me a fighting chance of staying off the nebs. To add in an extra break through antihistamine if I needed it, to give me multiple inhalers to ensure every eventuality is covered.
I convinced them that I have 2 epipens, I live 10 minutes from A&E, that I could take an open access admission letter home with me to cover me if I come back in to hospital.
I may have left out that I refused to call an ambulance and it was only because an exceptionally good friend of mine who happens to be a paramedic over ruled my- "I'm totally fine" rubbish and sent an ambulance to my house. Even then, that was a battle- I may have said that there was no need for me to waste an ambulance trip to A&E- even when I was barely breathing!
I used the nurse card, I used every card I had available to me to not spend any more time in hospital. I did 20 peak flow tests to show it improving with the inhalers- all be it, I went from 110 to 300 in the space of 3 hours, even I wasn't convinced that would help my case much!
But my persistence over 4 hours finally made them consider it.... Oh my god, I was close... I could feel my beautiful comfy bed calling me home.
Day 11 of captivity and I've done everything I can to convince them to go home... my fate lays in the hands of the consultant.
I'm trying to think of anything and everything I can say to make him let me go home... All I want next to my name on the ward board is MFFD- medically fit for discharge.... every time I have walked to the shower or the loo, the letters NMFFD- not medically fit for discharge- have plagued me... They've taunted me, they have sat laughing at me stopping me from being home.
I sit there, tight chested, sneaking secret inhaler puffs to make my chest sound even just slightly better than it actually did.
But I managed it.. I managed to convince them after 11 long, hard torturous days, I could go home. The begrudging looks on the teams face showing that my perseverance in badgering them to let me go home had finally worn them down.
I know I wasn't ready to go home- not by any stretch of the imagination, but it wasn't a case of being ready- it was a case of needing to be back home.
I knew their tactics though.. I knew I wasn't going to be a quick discharge, and although I was told I could go home at 11am... I sat and was still waiting at 8pm to go home. This wasn't a coincidence- this was calculated, they didn't want me to go, so this was their way of keeping me in for as long as they could before eventually having to let me go.
The list of rules I had to follow was vast
- Any flares, straight back to A&E
- Peak flow less than 150- straight back to A&E
- Hard to breathe- Straight back to A&E
- Generally not feeling ok- Straight back to A&E.
Basically... anything and I'm straight back in.
I could cope with that, because realistically- unless I'm having to jab a pen in to my leg... I'm not going back in- but they didn't need to know that I thought. I will document and monitor patterns, but I can do that from the comfort of my own home.
But realistically, as much as my stubbornness makes me think that I wouldn't go back- In reality, of course I was going to. This has been the single most terrifying thing I've gone through, and the minute the symptoms aren't being controlled by the strict plan I had been given- I know I would be heading back with my head down and tail between my legs.
Anaphylaxis really isn't something to be messed with, the minute my symptoms are becoming unmanageable with the strict plans I do have in place from my consultants and my GP- I will be calling 999 without hesitation.
I was free... I had been discharge and I'm not going to lie- I cried from the relief of being in my own bed for the night.
I came home to my house being hinched within an inch of its life by my sister- she is an angel on earth (Just don't let her know I said that)
I don't think I have ever been so happy to be in my own bed before.
So there we are....
2 and a half weeks of being between resus admissions, ambulance journeys and an multiple inpatient admissions I was finally home.
Its now over 25 days since the first anaphylaxis...I am still on high dose steroids- which I haven't been successful in weaning quickly, I am still requiring multiple antihistamines on a daily basis, I am reliant on inhalers and we are all still nowhere near to finding out what is going on. I remain reacting, I remain having horrendous skin burning rashes, I wake up struggling to breathe some mornings, I can be utterly exhausted by the simplest of tasks and my epipens are my new besties.
Its scary, I worry if I get a simple burning rash that it may turn in to a full blown anaphylaxis... That if my chest is incredibly tight, that the steroids and inhalers may not cut it.
I cannot begin to explain to you how incredible our NHS is- they've saved my life, they are doing everything they can to ensure that whatever this is, I will be able to live my life as normal and without huge financial burden. I am so truly grateful for it.
But my god, the thing that scares me the most out of all of this, isn't the reaction- I have the medication to deal with that part of it.
The thing I am most scared about, is having to have another long stay in hospital.
That seems ridiculous I'm sure- hospitals don't scare me, tests don't scare me... during this episode, I even let a medical student have a go with an endoscope in my airway- everyone's got to learn and have a go at some point...
What scares me is the total loss of control, the effect it has on your thinking. The way I felt completely broken, the way I lost all sense of power and control over my emotions.
I genuinely thought I was a mentally resilient person- but this showed me that all the things I used to cope, when they were taken away, when I was left vulnerable and exposed with no control over situations- that's when I realised how broken a human can be.
This was after just 2 weeks of coping with something- in the grand scheme of things could be considered pretty minor. My admiration for people going through more than this is beyond what any words written can express.
What did get me through, the kindness.....
This has shown me how loved I truly am, how I have the most amazing friends and family who drop everything to be by my side.
But also the kindness in strangers- the people who have reached out to me, who have become more than just social media friends.. nothing will begin to explain how much that helps when you are sitting scared and alone.
I'm nowhere near the end of this journey- this is very much just the start, and one that I plan on continuing to sharing with you all if you are interested.
But my god, the past month really has been a journey... one I would happily never repeat, but one that I fear I may.
Amy xx