So as you know i met with my team at the LCH (London Chest Hospital) yesterday, it was probably one of the longest days i have had in weeks...physically and mentally draining and tiring!!
First one of the team i saw was sajel, the psychologist, over the years i have built up a very strong relationship with sajel. I trust and rely on her very much she really is a lovely person to be able to talk to. She simply asked me how things were, i said not to good and instantly burst in to tears, i was so overcome with emotion at having to now talk about and deal with my fears with somebody, i spoke about my growing concern for my health.
Keith the pharmacist was also sitting in on our session. He works extremely closely with sajel and patients to help find ways to make treatments easier even if it is suggesting a different form of medication if you struggle with taking it. They are there to help with everything you need even if it is just that you dont like the taste of a certain medicine, they will offer an alternative where possible to help you adhere to the medication regime.
We discussed the steroid based inhalers i was on and made a few changes that he thinks will help me. After speaking with Keith and sajel for half an hour i felt like a bit of the burden had been lifted already.
Next to see me was Charlotte the physio, i expressed to her the difficulty in clearing my chest and she tried to help me with more physiotherapy options and how best to keep my energy levels high enough to be able to do a good 2-3 sessions of physio a day, however we didn't hold out much hope of my energy levels improving why this infection is lurking.
She is going to speak to a colleague who specializes in extreme fatigue to see if they have anything that may help me.
Whilst talking to Charlotte i couldn't stop looking at the lung function machine she had wheeled in with her, i was dreading doing it a part of me just didn't want to know the results but i knew it had to be done...36% Absolute crap!!!! She took a sputum sample and next up to see me was the SHO (Senior house officer)....
Well the meet with her didn't go to well at all. When she came in she first remarked on how tired and drained i looked, i simply said i was! the day had already been long, crying with sajel and coughing so hard from lung function with Charlotte i was about ready for my bed, i felt deliriously tired i couldn't think straight and find answers for what she was asking me.
She was firing so many questions at me so quickly, not giving me a chance to answer between questions then was left feeling confused when i tried to answer the 1st question why remembering the rest, she was slurping away on a can of lilt which i found so annoying, i dont know why?! i was just irritable and the sound of her slurps was doing my head in.
Trying to find answers to her questions, questions like, so how do you know when your ill? what tests do you do? do you know you have deteriorated? why are you so tired? this isn't normal, do you feel normal? spilling out of her mouth at 100x an hour was making me feel like i was on question time and there was a clock ticking and i had to answer them as quick as i could before she moved on to something else, my head felt fuzzy by this point.
She was then basically saying i needed to go in to hospital and it needed to be soon but until they had a bed then i had to do home ivs 3x a day, i tried to explain to her that i was just to exhausted to take on the extra burden of more treatments when i felt poorly. She couldn't understand why i couldn't do it and proceeded to tell me that the drop in my lung function, and the way i appeared at clinic was worrying...so how did she expect me to be drawing up and injecting up to 20 syringe fulls of medication a day?!!
I felt bullied by her, like i wasn't willing to help myself and that i was being a pain, again i tried to explain to her that i COULD NOT do this without the support from the team at home on my own but she wasn't grasping what i was saying and felt she was getting more and more annoyed with me, i cracked and started to cry and started shouting saying to her 'you are telling me how ill i look and present, you are telling me my lung function is a worry, you are telling me how exhausted i am needs help,... but you are telling me, not asking me to take on more medication that will exhaust me more, that i was in need of rest and support. She left the room in quite a huff and come back a few minutes later with my consultant and the cf nurse specialist mark. They agreed i wasn't well enough to do ivs myself but were adamant i needed them before Christmas but as it was the weekend they could not get me a bed so admission is now planned for next week.
SHO's move around from hospital to hospital, unit to unit for years until they decide what field of medicine they want to specialize and become a registrar in, so they only get a short time in one area of medicine and with the patients. I felt yesterday the SHO who saw me did not understand cf to well, maybe she didn't understand how tiring it can get and how often patients get ill and rely on their team. I truly felt bullied and belittled by her.
I'm sorry i shouted at her and got upset on the way home about it but i felt i had to get my point across to her to make her understand i wasn't being difficult i just couldn't cope!!
It can take years to build a rep-or with your team and they really do get to know you, they know how you are feeling and what you are capable of dong by just looking at you, im glad Dr Watson and mark did come in to see me as i was getting more and more frustrated.
So the plan for now i manage at home over the weekend to hopefully have a bed Monday where i will be admitted for IV (Intravenous anti-biotics) an Aminophylline infusion, which will help to dilate my airways. I will have overnight feeding and fluids to improve my weight and nutrition, a CT scan on my lungs is planned as it gives better images than a standard x-ray and a Broncoscopy ( A camera tube in to the lungs to get a better look at the damage inside the lung) may follow depending on the results of the CT.
So im hopefull things will improve... hopefully just before the new year so i can start the new year with a fresh bill of health and do the things i have planned
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