Wednesday, 6 March 2013

Two steps forward, twenty five back!!!!

I feel like everything has gone completely tits up nothing has gone right since my fall.

Heart diagnosis is not great and I believe the technical term for the state of my heart would be knackered!! It is only working at between 10 & 20% of what it should be and I have now had to start taking another two tablets as well as increasing the dose of another two. That aside the ct scan showed that the fluid has finally gone from around my heart and lungs and there is no fluid in my abdomen which is all good. Well good except for the fact that my abdomen is still distended and my weight has still not come back down.

I finally got discharged from the general on Friday night as they were happy the scans were clear and could find no medical reason for the distended abdomen and they even said it wasn't swollen despite nursing staff agreeing it was. I was adamant I would not go back to the unit as I felt like I just couldn't trust them they promised me they would not allow my weight to increase rapidly and that's exactly what has happened and when questioned they just say they don't know why.

Friday night was horrific I told the unit I was leaving but agreed to go back Monday to speak to the doctor and nursing team. Ben and I had a really bad night with lots and lots of tears and upset which continued for me across the weekend as I was certain I didn't trust the unit enough to go back and would therefore have to get my stomach and weight to go down my way. Unfortunately my way is to vomit after eating which I had started to do in the general hospital because I was so scared about the weight gain and swollen stomach and worrying I was eating too much and although I told people I was back in the cycle and am now terrified to break it again as my weight is going up enough doing it so what the hell will it do if I stop.

Despite a difficult weekend which was spent in the most at my parents due to Ben having prior commitments I did my best to keep food down as I know that vomiting won't actually make anything better it will just screw my body up more and my heart probably wouldn't stand it again. But I am too scared to eat and keep it all because of my weight and stomach.

Ben called the unit Monday morning and arranged for us and my parents to go in to see the nursing team and the dietician at 2.30pm quite frankly it was a disaster no one seemed to have any answers and the dietician said she had never experienced this kind of weight gain but also had never treated someone who had been at such a low weight as I was. Never the less hearing the dietician say she has no clue what's going on doesn't really fill you with confidence to stay. The meeting with the doctor didn't go any better and I ended up walking out of that too. I managed to leave the unit all together finally proving that no locked doors would stop me if I was determined to go and I went over to the general to get a coffee. Ben came over and said that the doctor had informed them that the ultrasound scans had shown something I had not been informed of and that was I have excess air in the bowels (no wonder I can fart for England!!)and this could explain some of the stomach distention and he would be referring me to see a gastroenterologist.

I agreed after a lengthy conversation with my named nurse that I would return to the unit at 10am yesterday and give it a couple of weeks to see what happens, see if my weight settles and if I can get back on track with eating.

I kept to my word and returned to the unit yesterday and along with my parents had a meeting with the consultant which was not all particularly helpful and he said he would not see any reason to have me referred to a gastroenterologist despite me being told this the day before, I did point this out and was told he was the consultant and the other doctor was his junior I suggested that in future in may be advisable for them to communicate with each other then rather than telling patients two conflicting things!!

I have requested fixed leave so I always get from Friday night till Sunday night at home as long as there is no change physical health wise which he didn't seem to adverse to but did say it would be a team decision which isn't true as he makes the final decision no matter what he says. I also pointed out that I felt I had been given no real help with regards to body image issues and asked for a fixed plan of action to be put in place to address this.

I also saw the junior doctor who is still adamant he is referring me to the gastroenterologist and fingers crossed he will do that today but I will wait and see what happens when I get my ward round feed back later.

So that's been the last week so quite crap and stressful for all involved, I know Ben and my parents are happier now I'm back here as they think this is the only place I stand a fighting chance of getting well to my mind though I am still unconvinced but have agreed to give it a couple of weeks to see what happens and I will keep to that promise.

1 comment:

  1. Hells bells, you just can't get a break! You poor thing... one thing this does bring through is how ill you still are and how much support you need from them - but they're just not bl**dy doing it are they?!

    I was really worried by your reference to doing it 'your way'... not going to do the emotive thing but please make sure that someone with their head screwed on medic wise understands, properly, that you are still having these thoughts and feelings as it makes it clear that you are at risk of things going shitways very fast if you do not have good enough support.

    Keep on keeping on... I agree with Ben and your folks, the unit might be a bit of a disorganised crapfest at times but (and this is the important bit)... it's still better than taking your chances on your own.