Wednesday, 13 June 2018
What is happening III
So now it is Wednesday, I have had my steroids increased, a bag of platelets and the one dose of IVIG... bloods were taken first thing this morning which is the first thing I haven't had to ask about! A good start to the day eh? Well then the doctor came and said about a bit of a plan; more IVIG today and that the platelets were now up to 51! Woohoo up!! I was expecting it to be that by Monday if things had went to plan, not 2 days later, anyway, I said to him about the rash and as soon as he had a look at it he said it was shingles and that I'd be put on antibiotics and possibly moved to my own room. Not surprised in the slightest we were right and the two doctors didn't have a clue what they were looking at.
So after a while they were getting the new room all organised for me, initially they had said about going to 6 North but they thought it would be a better idea if I was just to be moved to one of the side rooms in the ward I was in 2A, me possibly thinking they might be able to show themselves in a better light. I was moved about 1ish and had some visitors and later when I was getting some antibiotics I asked about the IVIG.... they went to check...
On their return I was given the piriton and the cannula flushed to make sure it was working as it should and shortly after a doctor arrived, I thought initially he was just double checking things but turns out he was ordering it.... ordering the drug after 5pm on the day I'm supposed to be getting it. I am lost for words on the incompetence of the staff here, astounded, never experienced anything like this in all the years I've been coming to hospital.
The doctor returned put on a gown and gloves since I'm now contagious and sat down and apologized for what had happened and that it was completely his fault, the drugs wouldn't arrive until at least 9 that evening and they were not willing to give it to me with not having as many doctors or nurses around. I said that I was confident enough that I would be able to take it with no real issues and that it's just whether the nurses have enough experience to be able to administer it, but from what I've seen they don't and from what he was saying neither did he and so I said it's up to him to decide if he is thinks they are competent enough to do so. He continued to say about just getting it tomorrow first thing in the morning and that it is completely his fault that I did get it today.
Basically another day wasted sitting here waiting for a bus that never came, it's been incredibly frustrating and I was hoping after my first moan that they might have put a bit more effort in to making sure things were done, but it certainly doesn't seem as if that is the case.
Minus all the screw ups I am mostly feeling ok I felt fine with the low platelet count and just with the itchiness and pain of the rash things have got a bit worse but nothing I can't handle, struggling to not scratch my head and poke at it but doing surprisingly well.
Tomorrow is a new day and I hope that I get the IVIG and counts done asap and maybe get the doctors and nurses communicating with each other so we all know whats going on and are on the same page rather than me having to chase everything!!!
Please make tomorrow a better day.
Although on a positive I now have my own room my own big TV and my laptop to do stuff on rather than just my phone, which does most of what I really need anyway but nicer to have the bigger screens and keyboard.
So here to tomorrow....
Wednesday, 13 June 2018
What is happening II
Hello,
So now Tuesday morning I was woken up around 5 to get my blood pressure taken, they normally do this before they go round and take the bloods at about 6, I dosed off and then woke up at 8.30... no bloods taken... no... bloods... taken.. they could have got the sample of the blood that was steaming out my ears.. I called the nurse said about getting them taken, about an hour and a half later they were taken.
A bit later another consultant came round to see me and asked if I got the IVIG yesterday at which point I said that all I have got was a bag of platelets and increased steroids, no IVIG yesterday and little sign of getting it today and mentioning that I also had to ask to get my bloods taken again today. Didn't seem to feel any urgency in what was being said to me despite me saying that I was getting quite frustrated with the lack of anything happening and nothing happening if I didn't ask for it to be done.
Later that day they came with the IVIG and were setting it all up and then stopped... it was the wrong brand and the nurses didn't want to give me it without speaking to a doctor first, so finally an hour later they started the drip, all went very smoothly with no issues and the normal problem of there being bubbles in the line was avoided. That evening I was expecting to get more platelets as the doctor had mentioned that, but of course it didn't happen because I didn't say anything to the nurses.
All was grand that evening and the rash on my head was getting a bit sore and itchy, we knew as soon as we seen it that it was shingles and we told the nurse about it who had to get the doctor to have a look at it. Of course... the doctor has never seen shingles before so how he is supposed to know what the early stages of shingles look like I have no idea.
I complained later again about the pain and itchiness. At this point the nurse thought it would be good to get another doctor with a bit more experience to have a look at it to get her judgement... I'm quite sure she took a picture of it to send to someone who might actually have an idea what shingles look like, but basically she said she was unsure if it was or not.
Just took some paracetamol and made sure I avoided laying on that side of my head. Not as easy as it sounds, but slept fairly well just something similar to the previous night were it was a bit broken.
Wednesday, 13 June 2018
What is happening I
So hospital got a call on the emergency line I have for them and they said that I should come up to get my bloods checked, I went home and packed a small bag and went off to hospital into the cancer center.
Everything was pretty prompt, nurse was right there and took me down into a bay and I got my bloods taken and spoke with a doctor about what had been occurring and why I was there. I was expecting the bloods to take a while longer than the normal visit on a Friday morning at the hospital but it was nearly 3 hours before the nurse came back and started taking details for staying in, she wasn't giving me a number on what the platelets were but I knew they were not good.
Shortly after, a doctor arrived and he was able to tell me that they were only 6. The norm of what happens when I arrive they order in some immunoglobulin which can take a while to arrive and get that into me ASAP as it seems to work pretty fast compared to other drugs. Because I have reacted to them in the past they were very reluctant to give me it during the night in case I was to take a reaction and with the small number of staff it would cause them problems. Instead they gave me a blast of 60mgs of steroids to help try and push them up somewhat and I was taken round to the bay I would be staying in.
The nights sleep was not awful at about 2am the steroids had kicked in and I felt like I was never going to sleep but I was able to get a few winks in, that morning I was expecting things to get rolling, get the IVIG and maybe some platelets too but... about 1120 the consultant came round and asked a few questions as to what had happened and wanted to see the bruises and rash at which point he said about waiting for the blood results from today at which point I told him they had not been taken and that all that had been done was the extra dose of steroids. I thought when he left he might have got that organised to get taken and move forward.
A few hours later with still no sign of anything and asking the nurses two or three times about getting the bloods taken I finally got speaking to one that was able to take bloods... hematology and not able to take bloods... but they were finally taken.
So me being me assumed that the previous night since they were reluctant to give me the IVIG they still would have ordered it for me to get... how foolish, another doctor came around to speak to me about 1600 at this point I have now been here for roughly 21 hrs and all they have done it increase my tablets. It was very clear I was unhappy, the platelets from the check were now down to 2 and the doctor said that they were expecting them to be down further and said about getting a platelet infusion, which is grand and when asked about the IVIG she said she'd have to order it in, I asked why it wasn't ordered at the very start when they first refused to give me it so it would be ready since they knew the counts would be lower rather than having to wait longer to get things resolved, and why the bloods were not taken in the morning as basically everything relies on the results. She had no reason and even agreed that it was a shambles. I was very unhappy, irritated and felt as if I was just thrown in a corner to be forgotten.
Soon she came back, very apologetic but she got her finger out and got things organised, had the IVIG ordered and ordered platelets, platelets would definitely be there in the evening but the IVIG may not be there till tomorrow at the earliest and maybe even the day after, but at least I knew now that something was happening and she mentioned that my bloods WILL be taken in the morning.
That evening I got my bag of platelets no issues and all went in ok.
The nights sleep wasn't great but not awful the combination of piriton and steroids equaled each other out and I was able to get a few hours or so, its hard to tell as it was quite broken....
Wednesday, 13 June 2018
It was good, it was really good
Hi all,
It's been quite a while since my last post, just short of three years and near four years of everything going incredibly well and smoothly, the odd hick-up of a cold, flu and chest infection but nothing of any real catastrophic proportions.
As the title reads, "It was good it was really good", I have had the most incredible time, being able to explore the country around me and be able to think of more than what will happen on the next hospital appointment, whether I can make a plan to go out that day or will there be a chance that I could end up in hospital if I was to try anything and not even anything stupid.
I've really enjoyed it and now I know what I like and what places I love to visit and what my limits are.
Being "normal" for a while or at least as close to normal as I'll possibly ever be was an experience and I enjoyed it.
But as the title also states, it "was" good, over the last few weeks things have been cropping up, I got a bruise on my thigh which turned out a lot worse than the bang on it should have gave me but at least I knew what caused it and then I got a nasty bruise on my arm with no idea where it came from and then gradually smaller bruises appearing all over with no real reasoning behind them and a lot of them. Then I got a slight ding on my shin and I knew this would be a good judge on how the platelets where... It turned into a large lump of a purple bruise and then I checked for some petechiae rash and there were some dots about, at that stage I knew I had to go and visit hospital and get the bloods checked and get them fixed if there was something wrong.
I had also noticed some lumps appearing on the back of my head believing it was just a bit of a heat rash with the warm weather lately or maybe some midgy bites, but more on that later, first things first lets call the hospital!!!