Part 1: Intensive care (ICU)
So you may have noticed that I haven’t written for quite a while. This is mainly due to the fact that I had pneumonia and I was hospitalised for a very long time. Well actually I spent over 2 months in a hospice for rehab but more about about that in another post
I’ve tried to work out if there were any particular warning signs but there was nothing obvious, just a few things that all put together paint a rather disturbing picture.
1. For three months the MS nurse who would see me before my tysabri infusion told me that my infection markers were up. As this is not particularly specific and the nurse would tell it to me quite matter-of-factly, I didn’t really react and they didn’t seem to be doing anything about it. After the fourth time I was told it I rang the Neuro Direct helpline. They said it should be monitored. Not particularly helpful!
2. When the nurse did my obs at the beginning of every tysabri infusion they took my temperature The first time it showed up really low – so low in fact that they thought the machine must be broken and brought in another machine to try. When the third machine also reported a temperature so low that I should be suffering from hypothermia, they decided to use clinical observation instead and decided that because I wasn’t blue then probably I was ok. This happened for 3 or 4 months on the trot. Even though my body temperature was getting lower and lower each month (34.6 was the lowest, the number should be between 36 and 37) they just decided I was weird. Again, not very helpful.
3. Then,about 3 weeks before my hospital admission. I really lost my appetite. Had I known what was coming and that that would probably be the last time I might eat for the rest of my life, I would probably have made more effort.
The final straw was when I started wheezing and got a temperature over 41 (I still didn’t want to go to hospital so I said that maybe I would be better in the morning but morning came and I was worse so I gave in and an ambulance was called, mounting pavements, blue lights flashing and siren wailing in its haste to get me to hospital).
So at the end of September I got taken to hospital. After a short stay on the Rapid Assessment unit, they moved me to intensive care where I remained for the next few weeks.
I was hooked up to millions of machines, had a thing called an Optiflow pumping large amounts of oxygen into my body but the worst things by far were the tubes that they shoved up each nostril. They very quickly decided that I should be Nil By Mouth and so a feeding tube was prescribed. The feeding tube I guess wasn’t too bad. It doesn’t hurt when it is inserted and it was only uncomfortable briefly when I had to swallow to make it go down to my stomach. To be declared Nil By Mouth, I was assessed by somebody from the Speech and Language team (SALT) who assesed my swallow and decided that I was in the ‘Moderately Thick’ category, which meant that even though for the time being I remained Nil By Mouth. when I was allowed to take food orally again it was only deemed safe for me to have things that were of a thicker consistency.
To make this clear to everybody, She wrote Moderately Thick on the board above my head where my name appeared so the board now read: Susan Twydell Moderately Thick. Charming!
Despite it being overall a frightening situation, my husband found this board hilarious. I just had to be glad that I hadn’t been put in the category up – Extremely Thick!
The other thing that was put up my other nostril is one of those things that you think surely there must be a better way of doing this. But they just haven’t found it yet. Called the nasopharyngeal tube, it is literally shoved up your nostril and part of the way down your throat. The noises made inside my head when it was being inserted were of metal scraping against bone or some other ghastly noise. Fortunately it didn’t take long but out of everything that I had to go through, I think that was the worst. I can still hear the echo of that horrible scraping sound today.
The point of that tube and the reason that it was so unpleasant is that it is hollow in the middle and so it allows another tube to be quickly inserted down to your lungs which is then used to clear the secretions (polite hospital speak for phlegm). This took place three or 4 times every day and one of the machines that I was hooked up to measured my oxygen saturation levels. Ideally they should be over 95 but every now and then I had a scary episode of desaturating when my levels would fall to around 60 and everyone would run around panicking to grab tubes to stick up my nose and clear my secretions. I could tell when this was going to happen not because I could feel it in any way, but because anybody around my bed would go quiet and start staring anxiously at the screen.
Various friends and family came to visit me while I was in intensive care. but by far the most comical was my mum. The first time my parents came my husband explained to them what all the machines did. He told them that one monitored my oxygen saturation levels and if it went below 90 then we should let someone know. From then on and through every following visi, my mum would stare rigidly at the screen as if she could keep me alive by watching the numbers and making sure they didn’t fall below 90 without letting someone know!
I think the most difficult thing was when we first found out I had pneumonia. Nobody actually told us directly, just one of the doctors had a conversation with my husband and during the course of that conversation he mentioned that it was pneumonia. That was a huge shock.. My husband came back to my bedside and when I asked what the doctor had said he told me that it was serious, really serious. I had only ever known pneumonia as something that old people got when their bodies were so weak they couldn’t cope with anything and in my experience that would be the last straw and meant that they were probably going to pass away quite soo.
So did that mean I was at death’s door? Definitely one of those first nights, even though I am not a particularly superstitious person at all, I felt like I saw the spectre of the Grim Reaper looming over my bedside.
Anyway, slowly but surely I started to get better. I got to know most of the staff in the ICU. and one by one the various tubes and machine hookups were removed.
After a couple of weeks I was deemed well enough to move to Respiratory Ward. where my recuperation could continue…