I've sat in this hospital bed nine days and counting now after a flare up of PoTS. Nine days of being looked at like my symptoms are all in my head. Nine days of arguing with the Doctors that I can't live my life like this. Nine days of being passed by multiple healthcare professionals as I try to walk to the toilet, but in fact I have to stop and cling on to something for dear life in the hope I don't collapse. Nine days of when I have had to stop and I'm out of breath the one time someone does stop they ask "what's the matter?!"
I have been lucky enough to be un-medicated and symptom free for nearly two years now. Two weeks ago, I started with being unable to take a full deep breath but didn't really think too much into it. I was on my last week of my first placement in my first year of my adult nursing degree. This particular morning I was trying to work through but as the day went on I was becoming more and more breathless, which resulted in me being marched to A&E. Long story short they did some tests when the Doctor said to me, "I'm not going to lie to you, we've ruled out everything life-threatening but we're a bit crap at diagnosing" (what you're thinking right now is exactly what I was thinking I can assure you!) "it's probably viral go home" (the age old "I don't know what it is so it's definitely a virus!" ;)) At this point I was so exhausted and was almost certain it was simply a flare up of my PoTS. I gladly went home to my bed.
Prior to this episode I have never been able to reach out to my GP to get any help or medication for this condition because they don't know anything about it. Can you imagine how infuriating it is that when I flare up I struggle to get from A to B and at it's worse I have been bed bound or in a wheelchair, yet I have to wait weeks to see a consultant for them to try me on one tablet at a time until we have the right combination that gets me out of the wheelchair. My current consultant however provided my GP with a letter that if I presented to them with symptoms they were to start me on fludrocortisone and make contact with her immediately. So luckily for me I was started on fludrocortisone last Monday.
A couple of days later the deterioration started, I was experiencing increased shortness of breath my heart was pounding when I was standing and I was feel faint and just generally struggling to get around. So I decided to present to the GP and see if they could give me anymore medication or expedite my appointment with my consultant. On examination her concerns were leaning towards a pneumothorax or a pulmonary embolism rather than it being a PoTS flare and advised I go to hospital. When she rung the Dr to ask for them to admit me to AMU guess what his first question was? Yep, you got it.... "Are you sure this isn't just anxiety?" (she had already asked me the question) No I'm not anxious I am so use to this I know the drill and I honestly believe that when she looked at me I didn't actually give a shit about my symptoms I just wanted it resolved!
So off I trot to the hospital (not literally obviously as much as I wanted to go against their advice seeing as I had driven myself there, I had to have a friend drive me). Upon arrival they did the usual obs, bloods and a chest x-ray for the pneumothorax. Negative. Next investigation, pulmonary embolism, although my risk factors are pretty much non existent. The d-dimer results from my blood test came back about an hour later.... positive, you have to stay in hospital tonight and you will be scanned for a blood clot.
They get my bed ready and show me to where I'm staying for the night which was a trolley bed. After a freezing cold, uncomfortable nights sleep I was eventually tested for a clot which was negative. The final time I went to the toilet before being seen by a Dr I had to slide myself down the wall in the hallway to prevent myself from collapsing, there were copious amounts of people just down the corridor and at the nurses station and I would say I sat for about a good minute clutching my chest due to the pain, experiencing severe shortness of breath before someone came looked down at me and asked "are you okay?" 😲 Yep I'm peachy I just really wanted to take a seat on a grubby hospital floor whilst I watch the world go by, how about you pass me a cocktail, really make my day? No of course I'm not OKAY!!!!!!! This was my first and by know means the last time during my stay that I despaired inside wondering if I was invisible.
So, because they had ruled out everything life threatening, (you'll hear this a lot in my blogs or you would have heard it a lot if you have this condition or other "invisible" conditions) they had a cardiologist come to review me with the view to send me home. So in comes the cardiologist and says there's nothing wrong with your heart... So I said this is a PoTS flare up isn't it? He said no it isn't PoTS your ECG was clear! ( If you're reading this and have the condition I know you probably just spat your tea out and probably water damaged your laptop now, I accept no liability for this, apologies!) So for people who no nothing about the condition which this cardiologist clearly didn't, you cannot diagnose or find PoTS with an ECG! The clue is in the name of the condition POSTURAL, my symptoms are when I stand... ECG's are performed lying or sitting and you have to remain as still as possible! Straight away when I deal with professionals like this, rightly or wrongly, it rubs me up the wrong way. You know how it makes me feel? Like they don't care, like they're not interested or that they in fact don't believe that I'm suffering in the way that I am because their tests have come back negative. I challenged him on the fact not one person had done a lying and standing blood pressure and heart in the duration of my stay. With disgusted reluctance he said he would have a nurse do it and then I could go home because "there's nothing wrong with you".
Low and behold when they did the observations my heart rate went from 61 on lying to 152 on standing, there wasn't a huge drop in my blood pressure but there was a slight drop and my respiratory rate went from 18 to 24. The Dr then ordered that I stay ONE night to be re reviewed tomorrow morning.
The following day the Doctor listened to me and agreed he was not keen on me going home the way I was and some more investigations needed to be done before piling me back on my medication when I've been medication and symptom free for nearly two years! However I never saw the DR again, and the Dr I have been seeing since... well... if I say to the first time he reviewed me when I asked when I could go home his response was... "You tell me, we've ruled out everything life threatening, so you tell me when you want to go home!" I think you can only imagine how the rest of my dealings have gone with him so far!
And that, ladies and gentlemen, are the kind of responses that I have had to deal with for the past five years of living with this condition! So he starts me on Midodrine, and I asked for a wheelchair so I could be more independent getting to the toilet, because at this point now they have moved me to the high dependency bay and making me use a commode at the side of the bed because I'm not safe to walk to the toilet on my own.... but I can go home whenever I want! 😙 In answer to my wheelchair request, the response I received was "you're not eligible for a wheelchair, you're too young" Please tell me you are now pulling the confused, did I actually just hear that right face???? (Fun fact: apparently I can't hide what I'm thinking, I think I internalise what I'm thinking but apparently it's written all over my face and of all people my father in law is in the fact the person who I think can accurately determine what I'm thinking I would say 99.9% of the time). Little bit awkward when I'm trying to make eyes at my husband if you know what I mean! 🤪
Anyway... erm... where was I?!
So I've asked for numerous things now, or should I say suggested some things that could help me on my way and get me home to my family quicker and they were all denied. I felt completely obstructed and that no one wanted to help me when I was suffering. Now, as much as anyone tries to tell you otherwise I'm quite a level headed, laid back person who isn't a fan of confrontation. But when I've been away from my two young girls and husband for a week and I'm still struggling and I'm desperately seeking help and I'm denied at nearly every angle I was about to lose my shit! And by lose my shit I mean I have never come so close to going full blown psycho! I have never had such an overwhelming feeling of wanting to get up and start screaming and shouting as loud as was physically possible!! The only thing that stopped me from doing that was the fact protocols probably would've stated they would've had to of done a psych evaluation on me, I probably would've ended up on the mental health ward because I had shown to be unstable and it would've meant longer away from my girls! So in a bid to cage my inner psycho I resorted to curling up in a ball and hysterically sobbing into my pillow, to which the nurse's response was to walk away! I mean I don't know how I would've have dealt with myself in that situation, hell, I didn't know how to deal with myself right then!!!
So, days pass by now where I struggle to get to the toilet I have to stop multiple times to prevent passing out with floods of professionals rushing past me, not making eye contact, and when the odd person does stop they say "what's the problem?" The same problem that I've been in for this whole time!! The patronising tone and, in my opinion, stupid bloody question just makes me question, do you believe any of my symptoms? Have you listened to a word I've said for the duration of my stay? Do you actually even care?! So whilst all the people passing me by and ignoring me make me feel invisible, the ones that do stop make me feel equally as invisible!
In a state of despair I then did something no Dr was ever going to appreciate! I tried again to get in touch with my consultants secretary (which in my defence I had been trying frantically prior to coming into hospital to try and avoid a hospital admission!) only this time she answered! I went on a massive rant about what was going on and that I needed my consultant involved because she knows me and my condition. My consultant rung the Dr that is currently looking after me and in response he came straight to me! AWWWKKKWWARRD!! 😙
So he rocks up, leans against the wall, folds his arms "So... I've spoken to Dr *****" I'm sorry but it took everything I had not to burst out laughing just from the pure awkwardness! He went on "and she agrees that we are doing everything right!" I said that's great but I wanted her input and to make sure an appt was being put in place ready for when I was discharged! He said "and anyway you made her think that I don't BELIEVE you have PoTS" Ok lets be having ya! I said "That is not what I led her to believe I said what I expressed was that I don't think you believe my symptoms, you don't believe that I'm struggling and that I think you think it's either all in my head or I'm making it out to be worse than what it actually is! He says " I didn't intend to make you feel that way though" I said "well when you have someone, who might I add you have to put all your trust in to help you is saying you tell me when you're going to go home we've ruled out everything life threatening, it's going to make me feel a certain type of way! Anyway he apologises and leaves and not much changes!
After nine days in hospital and nine days of feeling invisible I have at least been started on midodrine and today a beta blocker, I asked when I could home to which I had the same response! Ok I'd like to go home, but in fact I can't because they need to monitor me on this beta blocker overnight to make sure it doesn't slow my heart to dangerous levels when I'm at rest. So do not make me feel like I am making the choice to be here when in fact YOU are telling me I have to be here!
I'm exhausted, I'm exhausted of being invisible. I am exhausted of fighting my corner on my own every day for nine days. I am exhausted of being told but it's not life threatening then being looked at like I wanted it to be life threatening all a long, I am over the moon it isn't life threatening and I will live to see my girls grow and grow old with my husband but just because a condition isn't life threatening doesn't mean it isn't life restricting and I don't deserve help to get back to the level of fitness I had prior to coming into hospital pleading for help.
Am I invisible?
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