25.10.15

The neutrophil saga continues...

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Continued...

Good day my lovely lot. So following on from yesterdays blogpost we left it at me finding out that my neutrophils were very low. Since then I had to have another blood test in the vein hope that they may have gone up unfortunately they had not at all and are still very, very low. The thing with neutrophils is when you've had a transplant you need to keep them at a relatively low level so that you don't start attacking your new organs but too low and you could get sick very easily and very quickly so it's essentially another one of those balancing acts that we have to keep an eye on. It's a very normal and common problem among transplant patients though. 

So on Thursday evening I got a call off of Papworth who told me that they still hadn't gone up at all, this meant that I had to stop another one of my medications called Valganciclovir and they wanted to start me on a injection called Filgrastim which is injected through the stomach and should help raise the white blood cells quite quickly. The only problem with that was it was the evening and my GP was shut the local haematology department wouldn't do it and so I was told to go to A&E. I don't mind A&E I really don't but honestly that night was just a massive palaver from start to finish. I'm not one of those people that expects special treatment or to be whizzed on through in those types of situations but the problem is when you have very low neutrophil levels the common practise is to be put in isolation away from people... I was not in isolation. 

I try not to complain about hospitals when I've been in them because I do understand that they are doing the very best they can but Thursday they had, had a letter explaining exactly what I needed from Papworth which was an injection which would take about 2 minutes and the arrangements for the following two days but they just seemed to get distracted by the fact I had, had a Heart and double lung transplant and wanted to do unnecessary tests. After 4 hours in A&E they moved me to a ward where I was actually put in a isolated room. Now I'm really not proud of what happened whilst I was up on this ward because I did throw something of a fit while I was there. 

Now in my defence I haven't felt anxious since transplant which for me is something of a achievement but while I was there I just felt anxious, agitated and I just didn't feel safe at all. People (nurses) kept on asking me why I was there and didn't seem to have any clue what was wrong with me or what they were supposed to be doing to fix it and I think I had just worked myself up so much thinking I was putting myself in bad situation where I was just going to end up getting ill and I was surrounded by people who seemed to have lost the ability to read a few notes. Add to that I had been in this hospital for 6 hours at this point and had yet to see any kind of doctor and finally a really grumpy, quite patronising nurse came in and that was the straw that broke my camels back. I started crying and shaking quite horrifically and I marched myself down to the doctors office where I decided it was appropriate to yell at all of them and the nurses who were trying to tell me to calm down and then 'doctor obvious' decided to make the genius observation of "We think she's a bit anxious." If I hadn't have been a hysterical mess I would have gladly said "No shit?!" After this they finally seemed to be worried about the fact that I had low neutrophils and needed to be kept away from people and they finally decided it was time to get me my injection but they still seemed to want to perform other tests but at this point I had lost the will to argue because at least they were doing something now rather than me just unnecessarily sitting in a hospital with nothing happening but still being surrounded by ill people. 

So Friday I didn't have another injection because it was 2am by the time I had, had the first one so I got to sleep for most of the day which was wonderful because 1. I didn't get home till 4am and 2. One of the side affects of the injection seems to be extreme tiredness and spasms which all seem to be wiping me out. So I've had another one today (Saturday) where I got to wear a 'super' fetching mask, so attractive lol, but they gave me an injection for me to do at home myself for Sunday so at least I'm not spending any unnecessary time in the hospital around ill people. 

The whole situation has definitely put me on edge and I'm being overly cautious I'm checking my lung function about twice/three times a day and my temperature every few hours but I think it's just I really don't want to do anything that will put me at risk so I'm just trying to be careful. I kind of forget that I'm still very new to all this and I'm still in a vulnerable stage of the transplant process but hopefully these injections will do the trick and I can relax a bit again. I'm going away for a few days on Wednesday so I really hope they've gone up by then or I"m going to have to wear a mask which quite honestly does not fill me with joy. 

As always, thank-you for reading and chat soon. 
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