Home sweet home!!

Hi All,

Well, what can I say - its been a bit of a mad month. I cant quite get my head around how poorly I was at times during this admission and can say that a lot of the time I was very frightened which I don't often feel frightened by my asthma after having had it almost all my whole life. A few times its difficult when there are doctors that don't know you and presume that its not asthma and its just hyperventilation or some other disordered breathing etc - I thankfully don't get that very often. I seen to only get that sort of response when my chest is grumbly on and off for a while - like during this admission. It took a while to get things stabilised and then I was OK for a while, then i was poorly again and the cycle just kept repeating - this frustrates doctors as they don't feel that they are getting anywhere and then they start wanting to do other tests to find out what is happening etc etc - monitoring signs of inflammation and flow loops etc etc - but when everything points towards your asthma being a pain they still seem at a loss! What next ????

Well - whats next is that something has to be proven! I'm just glad (in a way - it sounds strange!) That things got rough again as when they did my oxygen levels on my blood gas were only 6 and my carbon dioxide levels were high! The doctors gave me magnesium and aminophyline (the magnesium is a total red herring in it all as by itself it does nothing except make my heart race and give me hot and cold flashes!!) It took a while to get a bed on the ICU about an hour and a half - once up there i was a lot better and felt like a fraud as the theophyline had started to work - next blood gas was millions of times better showing four times more oxygenation in my blood so theophyline is a really important drug for my control. After this finding it was noted that slight dips in therapeutic level of the theophyline resulted in a total lack of symptom control and another flare up- with bad arterial blood gas results!

I finally have the proof that the theophyline really does help tonnes when I'm poorly which is a great breakthrough!! though i do think that whenever i have admissions that are up and down i am gonna have a few problems with doctors thinking its asthma plus something else - the latest one was a kicker - love it - disordered breathing due to panic..... yes ok!!! Test for ya here, for those non-asthmatics out there - Go out for a jog (round the block or something just till your out of breath and your heart is racing enough for you to be able to feel it a bit in your chest- everyone is different so if your really fit this will take longer i know that so sorry if your a marathon runner lol!!!) OK once you stop running breath in normally but out through a straw to get your breath back. A thick milkshake straw (like those you get with take aways) are like more mild asthma symptoms and thin straws are more like the more severe symptoms. OK, So how long did you manage that before you gave up and got your breath back normally? Could you hack that feeling for long?? Did you panic?? if you could only get your breath back that way, how long would it take you to get to a state of panic - whether it be a little or very frightened??

I think that has illustrated my point. If you dont panic i dont think your normal lol!! It is a very natural response to panic a little bit when you cannot get your breath so i dont think some doctors help when they say that during an attack you have disordered breathing due to panic in an asthma attack - id like to see them struggle for several hours and get no sleep for a few days struggling and see how some of them fair after that - but thats just me and my feelings on some - not all but some judgemental doctors who did make things worse at some parts of this admission by stalling on giving life saving drugs - which on some occassions could have prevented an ICU admission if given quicker!!!

Sorry anyway - i went off on a total tangent there!! I am home since yesterday evening - I got home at about 8pm. My carer came this morning to help me shower dress and sort meds out etc and then left me to rest.

Today has been a quiet day of sleep and rest but i did have to get a few things sorted from my GP and chemist so did those this afternoon.

Im going to go to bed in a little while - I promise to catch up on all my blogs on my reading list and catch up on some posts on here in the next couple of days so expect a few posts in the next few days just to catch you all up on what has been happening!!

I hope your all doing ok. Take care and i hope people are all avoiding catching the curly tail and snouts!! please take care especially those of you who have other health conditions!!

Lotsa lv and speak soon Xxxxx

Hospital admission (still ongoing :-( and tribunal update (mmm - will my ex employer ever grow up???)

Hi All,

Well I was hoping to have been writing this from home by now but no such luck I'm afraid. Well, I came in to have my routine operation - the operation itself went fine. The general anaesthetic messed my chest about a little bit so I ended up on the ICU. I was on the ICU from the Wednesday through to the Friday evening where i still wasn't too great to be honest. The nurse on the ward wasn't happy with how i was from the moment she had handover and called the doctors to take a quick peek in on me.

This triggered my early warnings score to be high which increased the observations the nurses did, the more they checked them the worse my score got etc etc and then by midnight I was back under the radar of ICU again. I had a visit from a blogging buddy of mine KSD towards the beginning of the evening when things were very much not at their best and she stayed the night holding my hand and keeping me calm through the evening - even though misses wasn't well herself - Yes misses you know you weren't right (looks at KSD in a judgeful way but also very, very grateful of the company- and very sad you ended up captured post visiting me) :-(

On the Saturday one of the support workers was washing me when I got so breathless and wheezy it stopped in her tracks and she went to check my observations, they were a little low and high in all the wrong areas, so i was told to rest and given a neb! It helped a bit - then the docs were there again (the docs that visit you in PJ's - its never a good start when you see these guys as it never really boads well!!) Thankfully after yet more I'm OK really I'm oak's - they did think I was OK lol!!!

By Tuesday I was starting to wonder if i could keep people fooled much longer that i was OK, i was starting to struggle and really couldn't get why i was struggling so much, everything was pretty much the same except that i was again on oral theophylinne but it hadn't been oral that long and i didn't think It would have made much difference - yes some people had been really heavy handed with their antiperspirant sprays on this bay that am and there were also Lillis which never helps but still didn't feel there was a reason to feel quite so groggy!!!! After struggling most of the afternoon by the small hours of the morning the on call doc and ICU docs had restarted theophylinne infusion as levels were sub therapeutic run a dose of magnesium through and increased the oxygen to full 15 litres used on the wards.... I was then just waiting for a bed on the unit.

I went up to the unit for about 5 am the nurses on the ward had been great bless them and looked after me so well = the student nurse was lovely too sitting with my and holding my hand when i had ABG's (arterial blood gases) done - these are the single most horrendous blood tests ever and they hurt me so much now as i just dont have any access to vein or arteries due to them being so overused in the past. Its a nightmare!! I was on the unit they took blood and found that with the theophylinne in and now working i was able to utilise four times more oxygen - blimey - wonderdrug or what - i always said it had always worked for me and that i had always found it really helped - there was all the proof we needed!!! So after keeping a very close eye on me all of wed i was finally allowed back to my old bed space on the ward i had been on before lol- almost like I had never been away....

I settled back in well and was fine again till the theophylinne went back to an oral dose so we have been playing with dosage ever since and over the last weekend was my most recent blip where infusions and magnesium etc etc were restarted etc etc

It was all a bit soul destroying, when i was told I had a cellulitis infection from a cannula and wasn't to be given anymore venous access as i haven't been able to keep anything down for the entire admission really and have actually been sick on most days (worst being Tuesday evening and all day yesterday. I struggled all day and last night mentioned to a lovely nurse that I didn't think it was worth staying in if i wasn't doing anything that i couldn't do at home - I could still see the docs point and to be honest today i understood it a bit more (Ive got a bit more antibiotic in my system too lol!!


I tried sooo hard just to walk out of the hospital yesterday but didn't get very far at all as without the oxygen i was struggling with my breathing and with out any anti - emetic in me i was throwing up loads (not that there was even anything left to throw up!!) Gggggggrrrrrrrrrrrrrr!!

The nurse was lovely as she let me come back to the ward - hardest bit?? - Accepting that they were actually right lol!! Think part of it was the temperature to be honest as its not something I would ever, ever do - it was just quite simply that i felt i was getting more and more infection into my system and that it was making me really poorly and no one was listening!! I did though realise that even if they do burn and sting like a bug**r an intra muscular cylizine injection was required!!

Anyways saw the docs today on ward round, they looked at my last cannula site and said ouch is it sore?? (Hell yes!!!!) Its bright red and the tracking starts from there the cannula was entered in a vein on my wrist/palm of hand (yes that hurt too - i can categorically say - never ever let them do one there!!!!!!) The doc mentioned nausea (still there - only managed tiny bit of soluble pred that morning not even the hydrocortisone!! and had thrown 3 lots of antibiotics up and not managed any of the anti fungals for the systemic candida!! My usual consultant who is a real susperstar came in to see me today aswell - he knows me better than anyone and also knows what my body can and cannot take sooooo it was great to see him taking charge over my protocol for the other docs to follow!!!

I also menetioned tribunal things - i missed a deadline for the end of june as i was too poorly to contact my solicitor when i was on the ICU, I contacted them last week prior to my laptop coming into the hospital for me :-) ( no more robyou line for me - its DVD's all the way lol!!)

Last week i promised the solicitor that i would email him the specs of my case before the 17th. Again ive been upto the ICU and almost ended up there again since i spoke to him last so i am hoping that the email i have sent him today will help and that if he needs any further information tomorrrow then i will give it to him via phone or email. My employers (ex that is) feel that this further demonstrates that they are caring employers as this is what it was like for them and think that the fact i am prolonging the case by being unwell - in their veiws this shows them im being unreasonable lol - they actually stated in writing that they felt that by delaying it all made them look better as they feel they shouldnt have to accomodate my illnesses anymore hahahahahahaha!!!

Anyways guys I will be getting the laptop out tomorrow at some point to speak so my solicitor so I will write another tribunal update soon as i can and hopefully keep you all posted on how i am gettng on physiotherapy and OT wise!!!

Take care all lotsa Lv
Xxxxxxx

A quick update

Hi All,

Hope everyone is well. I had my operation in the end and the button fitting was a success - the anaesthetic however did affect my asthma and so i ended up in the icu for a few days - i then came to a normal ward where i bounced back to icu once more. Ive been a bit up and down over the last few days and im still on a lot of oxygen but things are moving in the right direction.

I promise to update properly as soon as i have my laptop at hand as at the moment im using my mobile.

Take care everyone and speak soon lotsa lv Xxxx