So as anybody who reads this blog knows I have had a few issues with side effects following my Xolair injections. During the past year I have had to attend hospital every 4 weeks for Xolair injections, the Xolair does seem to be helping my asthma but unfortunately on 2 occasions I have suffered respiratory problems within 24 hours of receiving the injections. These may just be coincidence but they maybe as a direct result of the injections as respiratory problems are a known side effect (not bad for a drug used to help control asthma). Therefore it was decided that I would be admitted for 24 to 48 hours for observation following my latest injection. Should I was to suffer any more side effects then it the likely outcome would be to stop the injections which would come as a major blow.
To compound matters I had a bad weekend with my breathing prior to the injections on Monday, my peakflow and oxygen levels both well below their usual levels and my chest was as tight as hell. In addition to this my diabetes was all over the place and I hadn’t slept well for weeks.
I was due at hospital at 1300hrs on Monday 20th March and so with my overnight bag packed with all of the essentials such as iPhone and charger, iPad and charger, Apple Watch and charger, pocket DAB radio and charger, new wireless bluetooth earphones and charger, my work phone and charger, plus a few minor things such as toiletries, change of clothes and medication etc I was ready to go. As you can probably tell I am something of techie and I love my gadgets, especially all things Apple. As I was hoping for only a 1 or 2 night stay I thought that with the above gadgets I should just gave enough to get by and so decided not to take my Kindle or MacBook on this occasion and with the addition of also taking in a fan and my own nebuliser I felt that there may be a shortage of sockets for all of my chargers and plugs.
I arrived at the diagnostics unit just before 1300 hours and it wasn’t long before Sally, one of the respiratory nurses arrived. We then went through to a small room to prepare for my injections. Before I receive the injections we have various forms to fill in which basically includes details of how I have felt over the previous month and each question is scored. I find this a bit of a waste of time as my asthma is never at a constsnt level over the 4 week period in question. Things such as on average have you taken your reliever medication, 4 or 5 times a day, 2 or 3 times a day, a few times a week or never is hard to score, I can go days without using it and then be on back to back nebs for days on end (nebs are to be treated as inhalers in this case). In my opinion the scoring for each month should be broken down into weekly segments to give a truer reflection, also my asthma begins to deteriorate as the month passes by and the benefit of the Xolair drops slightly. Other questions asked include sleep, symptoms and general asthma control. We also review my peakflows for the month. I am then weighed and my sats are checked. The good news this month was that I have lost a little bit of weight (2 kg), which considering the high dose of steroids (and steroid related munchies kicking in massively over the last couple of weeks) and labor of much real exercise I was pleasantly surprised. Saying that though I am still overweight (or too short for my weight as I prefer to call it) and need to lose a fair bit more yet.
We also discussed as to why we thought that I had started going down hill over the days leading upto the injections, we both agreed that it was probably a combination of overdoing things (I had just started a phased return to work the previous week), the fact that the weather had changed from sunny, mild and spring like the previous week to cold and windy (sudden and extreme weather / temperature often causes me a lot of problems) and as already discussed the benefits of the previous injection had worn of We believed this combination of things had led what we were hoping was just a minor blip rather than anything more serious. After all of this was complete and the Xolair had been warned up (we have found that it is less painful the warmer it is) I was given the injections, one in each arm. My sats were checked again and I was offered a nice cup of NHS coffee!
After a few minutes and following another check of my sats I was taken through to the main diagnostics area. This is basically a big open plan area filled with comfortable chairs. This area is mainly used for outpatients who cone into the hospital for various kind of infusions. I was told that I was to wait there until my pre-booked bed on the respiratory ward became available, in the meantime the nurses on the diagnostics ward would keep observing my sats and I was to report to them should I feel unwell. I was told that my Respiratory consultant who was going to see me during my admission had gone home unwell but should there be any problems her assistant was available. By now the time had reached 1400 hours and though my sats weren’t great they had not deteriorated following the injections which was the main thing.
Time passed by slowly, I watched a couple of things on my iPad, drank numerous cups of coffee and sat and waited as the diagnostics ward slowly emptied as the outpatients and some of the nursing staff left. The remaining nurses kept checking with the Respiratory ward to check when my bed would be ready but each call was net with the same reply “not yet, we are working on it”
My wife arrived at 1800 hours and came and waited with me before finally the phone rang at about 1830, great news there was a bed for me, the bad news though was that due to a bed shortage (there’s a surprise) I would have to be given a bed on AMU (accute medical unit) which is basically a posh name for the general admissions ward. It is no more than a glorified transit ward where most people are admitted from A&E before transferring to the appropriate specialist wards. This ward is a nightmare, it is very noisy, very busy, people moving beds all day and all night, it is impossible to sleep and more disappointing for me, no specialist respiratory staff. My consultant had she not gone home unwell would have hit the roof as she had done previously when I had not received a bed on Respiratory and on one occasion when due to a bed shortage moved off of the respiratory ward without her knowledge. The whole point of my admission was that I am a severe asthmatic who needed specific Respiratory knowledge to monitor my condition and to observe things following the injections. For heat use AMU would be I would’ve been better off at home, I knew that the care and support would not be in place for me on AMU but I was tired, there wasn’t really anybody to argue with and I just wanted a bed. I just had to remind myself that I would be for just 1 or 2 nights.
It was annoying though as my consultant had booked a bed for me on Respiratory but a bed manager who knows nothing about me or my condition overruled the Respiratory consultant and gave my bed to somebody else, I accept that there may well have been another patient who was in more need of a bed on Respiratory from then me but what is frustrating is that a number of patients on that ward are just taking up beds because they are old and lonely so would rather be in hospital, having some company and getting food rather sitting at home by themselves. I know that this does not apply to everybody but I have witnessed it myself, patients have told me they do it and even the staff have told me that it is happening. This is one of the main reasons why the ward is always full, one of the other reasons is that 2 of the bays are closed / kept empty on the Respiratory ward due to costs / staffing issues!
I will not even start to write and complain about costs and staffing issues!
So upto AMU it was, all I can say is Aaaaaaaarrrrggggghhhh!!!!!!
Part 2 of this story will detail my time on AMU and should be posted within the next day or so!