Saturday, 30 July 2016

Hit or miss

I have a hit and miss record of whether or not I get on with medical professionals. When I was 11, I was admitted into hospital, and I vaguely remember having a ward round with my consultants, several other clinic members and what seemed to be every fellow and junior doctor in the hospital (this may not be accurate, I just remember being absolutely surrounded in my little hospital bed). A female fellow was told to give me an examination and I said 'NO! Not her! I don't like her'. This was met with several surprised faces and glances (it still bothers me to this day, as coincidentally, I think she was muslim and I always worry I came off really racist!) The actual fact was, I'd seen this doctor several times in clinic, I'm pretty positive she was particularly bad at blood takes, and she always generally ignored me and spoke to my parents. This wasn't new. But I remember my dad telling me he was irked by her because they were always rang up with sputum or blood results a few days after they'd been taken, and whenever she was the doctor in clinic, no one ever rang us up. It may be a petty reason for an 11yr old to dislike someone, but, i was 11.

Yesterday I was putting a clinic letter away and decided to read some old letters instead. I found one from this fellow which said things like my hearing loss wasn't due to aminoglycides (er, yes it was) and that I could be particularly difficult in clinic (how would you know? You ignored me the entire time!) I guess my hatred for her wasn't for nothing then if she was bad mouthing me in letters to my GP.

Another time when I was a teenager (must have been 14 or so as I read this in a diary) I was sitting in a side room to get my port flushed, and the CF nurse suddenly started on me saying that I seemed miserable and grumpy. I just remember feeling really pissed off at that comment as I'd been there all of 5 minutes, barely said anything, hadn't been rude or short with her and she'd made me take my top off to get to my port - I wasn't wearing anything underneath and felt self conscious and awkward, so if she was basing my 'grumpiness' on this, that wasn't fair. You try taking your top off in front of 4 other people, I know they're nurses and parents so they'll not be bothered, but it doesn't change your personal self consciousness feeling.

One letter I found, considering there wasn't many from paediatrics, this one has pissed me off a HUGE treat. I was about 16 at this point, getting sarky and pissy with doctors who spoke about you to your parents, shoved you in the corner with a games console and discussed your life without you being allowed any input. (This would often end up with things like IVs being scheduled on the one Friday which was a pain in my arse as I wanted to go to a friends house or a party that Friday or Saturday, and once I realised the date clash, they refused to budge even one weekend) Anyhoo, so this letter was to my first consultant in adults, and was about an impending transition clinic. He outlined some basic health (I find it interesting they said I was one of the patients with severe lung disease when I'm actually still pretty decent now nearly 9 years later) and then, decided to say that he didn't think that my hearing issues were because I'm deaf. He said he thought I had a processing issue.

Now you could argue he may have meant the nerve damage - I don't seem to process noise into actual speech and sounds, it's literally just noise and I need to lipread to understand. However, he followed this up with 'because she's always been strange with everyone in clinic and would probably benefit seeing the psychologist due to this behaviour'

I read this yesterday and swore loudly. Its been sitting in my file for years and I've never read all these letters cover to cover. But I am fuming at that. This doctor gave me tobramycin which made me deaf - confirmed with rapidly decreasing hearing tests and the diagnosis of aminoglycide hearing loss and damage then confirmed by a very good ENT surgeon. But according to this moron of a doctor, he seemed to think that my hearing wasn't an issue and I had some sort of brain problem, maybe? My 'attitude' (which i was constantly told off about when I was a teenager, cos guess what? I was a fucking teenager) was pretty normal for a stroppy teen, and mostly in clinic, I'd ignore the doctors because they ignored me. I'd get pissed off with plans made about my life without me even being told about them, and they never, ever asked for any input from me, about my life. I'd then get told I'm stroppy or grumpy, but what do you expect? They were never nice, they never really smiled, or made you laugh or praised you when you kept your weight up. Clinics would be long and gruelling and I've always been the type that gets very 'hangry' - starving and very very angry. I found a lot of irony once in my mum asking the dietitian if they could hurry the clinic up because I was getting hungry, and the dietitian, who had just been telling them that I needed to gain weight, said 'oh well we're all a bit hungry aren't we'.

I don't like the paediatric team and the more I read about my past treatment, I hate them more. I apparently trialled DNASE when I was younger, but didn't feel it made any difference so they stopped it (the one fucking time they asked my opinion and it probably wasn't a very good one!) According to a fellow who summed my notes up for another doctor in a letter, my dad asked them repeatedly to let me try it again and they never did. I started it this year a couple of months ago now, and have felt massively different, my lung function went up a chunk after starting it and my chest feels clearer. I can tell this difference because I pay attention to the numbers now (i didn't when I was a kid) and my chest has gotten worse over time so i can personally tell a difference when a medication works or when I have an infection. As a kid, I don't think I really noticed a difference other than if my cough got bad. I'm now wondering if I had the idea of DNASE explained wrong which is why I didn't feel it helped. Fuck knows why they didn't put me back on it though as it seems almost mandatory that people with CF have it now.

But basically, I cannot get over that bastard cunt of a doctor saying that basically i have mental or behavioural issues and that's why I could be a little sod. Doctors and nurses who can't understand normal teenage behaviour probably shouldn't be working in paediatrics.

As far as I know, that doctor has since retired, but I wish I could see him now and show him that this girl with 'processing issues' managed to get through all of school, 2 college courses and a uni degree. I do have hearing problems, and I do need allowances for that, but that is not cause for him to write what he did. I know I shouldn't dwell on it as it doesn't matter now, but I think the basic indignity of someone knowing so little about someone they treated for a decade or longer, shouldn't have written bollocks like that.

I also wish I could say that things changed in adults, but they didn't. I no longer get along with my original doctor from adults, I don't agree with him on many things (like when he gave me muscle painkillers for constant headaches due to low sats, or 3 years ago when he spent half an hour telling me 'at this rate of decline' i would need a tx in 6 years, when all I wanted was some IVs. My lung function is now higher than it was then. Twat). There was another doctor who I saw only once, but I remember telling him that I couldn't understand him as he was mumbling. He took this as to get out from the desk chair, kneel in front of me, lean forward and speak to me like I was a severely mentally ill person. Me and my dad just stared at him in absolute disgust. I can't remember what else was said but I do remember thinking how easily it would have been to kick him in the face.

There is one nurse who speaks to me like that in clinic, but thankfully I haven't seen her for a while. She always seems to be doing paperwork in a room rather than seeing patients. There is another who also can't seem to understand I'm deaf despite being told at every appointment for years now. She seems to think I'm a bit special though as she's always asking why my dad/sister/boyfriend aren't with me if I've come alone. Aside from the fact that my dad let me start going on my own from when I was about 19, unless I asked him to go with me, and my sister stopped going with me when I moved out my parents house over 2 years ago.

There is another CF cons who I don't see, but he doesn't have many CF patients as I'm pretty sure he sees other general resp patients and is often running up to HDU for patients up there, if he's not putting a port in. I was speaking/arguing with a doctor I only saw a handful of times, and I was getting my routine IVs which I always had twice a day (unless its a specific drug which the dosage can't be increased). Anyway she was trying to give me them 3 times a day, and i'd finally gotten used to the 2x a day that clinic usually gave me. This caused her to leave the room, return with this other Cons, and have him read me the riot act on why I need IVs and why they're so important. After about 10 minutes of this, I wasn't paying attention as he was speaking too fast and has a huge moustache and beard that covers too much of his mouth to lipread well. Someone finally pointed out that I wasn't actually refusing IVs (I'd asked for them...) but I wanted them 2x a day instead of the 3x a day that the younger doctor wanted to give me. This was followed with an '...oh' and then a sudden subject change of how school was going. He then wrote 2 pages in my notes saying I was refusing IVs, being rude and argumentative, and eventually agreed to have them.


I generally get on with most people in adults now though. Up until a new dietitian swanned in late last year after my lovely dietitian retired. Thankfully there's 2, and I get on with the other, but the new one is a pain in my arse, and she should bloody well know it by now. The first time I saw her, I swear, she said the word 'poo' 5 times in the 5 minutes she saw me. That annoyed me as I felt like she was either obsessed with the word or she was talking to a 5 yr old. When I was ill, in and out of hospital with odd gaviscon side effects in Feb, she said that if I 'calmed down' my 120 resting heart rate would be fine and i was imagining the palpitations. She said there was no problem in my losing 5kg in two weeks. She walked in on me throwing up the chocolate roll I'd managed to eat, and saw no problem. She decided to 'help' by bringing me toast that I'd agreed to try. She brought it in stone cold and burnt black, and walked out smiling. I did ask if NG or NJ tube feeding was a temporary suggestion for the fact that i wasn't eating more than 2 or 3 small bites of food per meal. She said 'NO! we won't do that' and promptly walked out the room. When I asked for calogen shots, as no one had given me any supplements the entire time I'd been in, she waved my request off saying 'they're on the ward somewhere' (I'm not allowed to go rutting through cupboards!) and walked away. When the HCA found them the next day, they weren't calogen, which I'd asked for due to a specific high fat content, but something with much lower fat. And they were warm cos they'd been in the cupboard and not the fridge. I'm also really annoyed that no one (especially her, as she is the fucking dietitian!) did anything or even monitored the amount of food I (wasn't) eating. It's surely quite dangerous to leave someone only managing to eat 2, maybe 3 small bites of food per meal and not really give a shit. Especially when its combined with rapidly dropping weight.

The last time I saw this twatty excuse of a dietitian, I told her that my problems had been due to gaviscon, and she smirked at me and shrugged this off. I then got very angry at her and told her she needed to move her hand from her mouth because, as I'd told her multiple times before, I'm deaf and I lipread. I haven't seen her since - my nice dietitian wasn't in clinic on Wednesday so I told my CF nurse and my cons that I refuse to see this woman who's name I don't know and don't plan on learning. She would have happily watched me starve to death so I won't speak to her. The other dietitian is also happy with this and doesn't mind being the only one to see me, or me not seeing any dietitian if she's not available as my weights now good and the best it's been.

Maybe I just get shit health professionals as honestly, some of my so called attitude isn't exactly uncalled for!

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