Friday 27th May 2022
Holiday!
Hi everyone, hope you’re all doing well. I’ll say I’ll keep this short but we’ll see how it goes, I’ve not done anything really so not too much to say. I went onto antibiotics the last hospital visit and the new tablets for the heart. Haven’t noticed any real changes with the heart tablets but with the antibiotics I felt a bit better a couple of days later, the cough had improved as much as it had been for quite a while and not as many temperature spikes. Only downside was there was the antibiotic taste in my mouth.
I was on a 10-day course of them and they seemed to do a good job, I think I finished them on the Friday, but on the Sunday I woke up and I had the infection cough taste in my mouth again and felt a bit rough most of the day. They had said the last time at the hospital that if the antibiotics didn’t work that I would have to go in to get IV antibiotics. And so, I had prepared myself to go to hospital for a while which would normally be about 10 days for the full course of antibiotics.
I was looking at it as a bit of a holiday, a change of scenery and different faces and in a way looking forward to It a bit too.
The Monday morning I packed all my stuff and went and got a few things that I would have needed but didn’t bother phoning them as I wasn’t feeling too bad, but in the evening I got another temperature spike. Tuesday morning, I phoned and they got back to me and said to come in and to bring an overnight bag. I think I got there at about 11, got taken into a side room, some details taken, bloods taken, and then an x-ray, I had a CT scan last week so they had something recent to compare to.
The porter was taking another guy down in a chair and to save time I just walked down with them as it wasn’t too far and the same on the way back although I had to wait for the other guy to get his x-ray and by the time the porter came too, it took a lot longer than it would have if I just walked down and back myself. They’re always quite sticky about that for some reason.
My blood results came back and was a bit dehydrated again, the x-ray showed that the chest had cleared up a bit compared to the week before. They did say about going home with more specific antibiotics rather than the general ones so I wouldn’t need to go in to hospital. Probably that I was able to do most things at home ok and I’d also need a room on my own.
After a bag of fluids and then another blood test they got my new antibiotics and allowed me to go and was leaving at about 5. The traffic wasn’t too bad, I was expecting it to be a lot worse, but was shattered after the day I had despite doing nothing, I needed to lie down for a while to sleep and get comfortable but they didn’t have a pillow on the bed so I had to slum it out on a chair. Later that evening I seemed to take a bit of a turn, not sure if I was over tired or hungry or what but just didn’t feel right and so I lay down and fell asleep.
Obviously falling asleep early wasn’t the best of ideas but I did feel better when I woke up so I read for a while and then went off to bed. The following morning the cough was bad again and my throat was sore and I was completely bunged up. I had a couple of things to do, like get in some food as I’d been expecting to be on holiday and let the supplies diminish. Got everything all sorted and had another quiet day, again I felt uneasy both in the morning and in the evening, I think it’s the new antibiotic as it can make you feel nauseous. This was the same on Thursday, I took my tablets and went to get a chippy and just wasn’t feeling it at all and I fell asleep getting about 4 hours and waking up again at 12, I read again for a while and then went to bed to try and get some sleep. Think I got another 4 hours or so in total it wasn’t a bad night’s sleep.
I’ve just taken my tablets again now but I have to go drop a letter to the GP and pick up some tablets so hopefully I won’t be feeling too bad and maybe doing stuff might take my mind off it as well.
Pity the holiday didn’t go to plan but at the same time I’m glad I didn’t have it, it’s much easier at home than sitting in the hospital and always takes a bit of a recovery coming out of there. That’s not to say I won’t end up in there still as these antibiotics I don’t feel are working as well as the others but we’ll see how it goes and I might end up with my holiday next week instead, at least I have everything all ready for it.Thursday 12th May 2022
Le Sigh
Hi everyone, hope you’re all doing reasonably well. It’s been about three weeks since my last post and I have done nothing, or at least next to. The motivation and ability just aren’t there, the cough being one of the major factors, aches and pains certainly aren’t helping.
I’ve been continually reacting to chemicals and smells, making me cough, sneeze and have a runny nose. It seems to trigger a really aggravating tingle at the back of nose. The aches and pains are certainly not as severe as they had been but as the focus isn’t on the severe parts it now seems to be more widespread or more individual things around different places, like the new scar on my chest, my lower lungs, stomach, knees, neck and head. I think they have always been sore but as the back has been so bad it’s been masking the other aches.
Over the last three weeks or so my daily fever has been feeling a bit worse and lingering longer than what it has been before and one of my glands has started to swell a little when it comes on with the temp going up. Last week I was keeping a good eye on my temp and on the Monday it went up the 37.4 but I thought I would leave it and see what would happen, an hour later it was back down to 36.6, half an hour after that it was back up to 37.7 and so went ahead and just took paracetamol which I need to generally take to take the edge off pretty much everything, be it the fever and roughness to the milder aches and pains. The whole week the temperature rarely went below 37 but never high enough to phone the hospital, cough was fairly irritating and the nose too.
I had a form I needed to get signed from the hospital and kept planning on going, each time I was going to go I just wasn’t feeling up for it even after taking a covid test and ready to leave, just deciding nope and sitting back down. Eventually on Tuesday I had an appointment which I’ll get onto shortly.
On Sunday for my dad’s birthday, we went to Exploris which was great, being out properly for a while, I took my tablets later so that it would have an effect when I was out rather than wearing off early and feeling rough, but then they did wear off and I felt rough, later than normal and closer to the time of my next tablets which I got home for. It was a nice day, we took our time going around and thankfully it was fairly quiet so didn’t feel rushed to get around and just let others go on ahead.
That night I had to go to bed early, I was shattered and continued to be the next day too. It didn’t help that at about 5ish I woke up soaked in sweat and needed to get up, showered and changed, and didn’t want to go back to bed so I got up and stuck on a couple of films. I was pretty shattered all day.
Tuesday was hospital day, I got my bloods done and told them I’d be out in the car waiting rather than in the waiting room, I was getting too warm in there, the back of my nose was starting to bung up and in case I had anything it’s not really an ideal place to be sitting. When I got the call to come back in and get the IVIG I told them that I’d prefer to see the doctor first. A few minutes later the phone went to come and see them. In with the doc he was just going over the usual and said about the white counts being generally high but they’re a bit higher than normal today and some of the other counts where off a bit too. He asked how things were and so I told him all the above. He had a feel at the glands in my neck and was happy it was just with the fever it was swelling and nothing much more.
Needed to get my temp checked to make sure I was able to get the IVIG. If it was up at the time I wouldn’t be able to, it was ok and I’d be able to go ahead with it.
I got a few test results back as well, there was something that was down in relation to the BMT but I can’t remember what it was, iron count was back to normal and platelets and all the usuals were all ok.
Next thing was about the lung function test, I had one back in January but they never got the results and so they repeated the test. They did get the results of that one and the functioning was down from normal, they need to do another test to get more details. They told me all about what it could be; something about the brachiola tightening up or something and blah-de-blah and having to go to the lung-something-or-other, I was listening but I wasn’t absorbing it all in, it’s probable but not certain and there’s enough things I need to remember. CT is next week but there’s a four week wait for the results as they’re low on the specialists to review them.
The next topic with the doctor was about the heart. The cardiologist had sent them an email about starting a new drug, the reason for this is my left ventricle is functioning at about 45% rather than the normal 60%, nothing to be overly concerned about and fairly common with all the carry on.
Doctor also wanted me to go on antibiotics for how I’ve been feeling and if I get any more temp spikes I’ll have to go into hospital to get an IV antibiotic, which I wouldn’t mind but I would much prefer not to, I’ll make sure I keep on top of the temp with paracetamol etc.
I went into the room to get the IVIG, before it started the doc came back and said I needed to get a bag of fluids first as I was dehydrated and the kidney functions were a bit off, probably caused by yesterday’s mad sweat and running to the loo. So that would drag out today a bit longer, and considering I need to drop forms in, get tablets and get home for an appointment phone call later it could be a bit of a rush. The getting home for the call appointment isn’t essential but it would be much better there than when I’m driving and sitting at the side of the road so I can make notes and concentrate.
The IVIG and fluids all went smoothly with no issues, they did struggle getting the canula in my arms and needed to use my hand. Rather than being back in four weeks, I’m back next week to keep an eye on things. To make sure it’s not a cliff face and four weeks would be too long.
While I was in, another guy came in to get a RBC booster. He had a BMT about 6 months after mine and we were talking a little, all very similar issues. The one thing that hit me most was, that was exactly what I was like six months ago and it was good to see the progress that I’ve made in that time and I hope for him that he will see that progress isn’t that far ahead despite everything that’s been written down here today.
I got the forms in picked up tablets and home. I was shattered and needed a sleep but I couldn’t with the phone call. When I finally got it, it was quite interesting, the doc was going over in more details about the heart and it’s just a mild case of whatever it’s called, I don’t think I’ve ever been told the name of it. He was saying there is a new drug but it’s mostly still in a trial phase and only really been for people when it’s severe.
They are just putting me onto a tablet that I was on before, or at least I think I was, and it will be increased in about four weeks. I’ll also have to go on betablockers while on them too and will have to have the kidneys monitored… they already do this in hospital for me so nothing extra. After he asked if I had any questions but I was very happy with everything that he told me and went in to good detail but not too much about everything. I told him that if he needed any more trials that I’d be quite happy to help out and then he told me about another possible monitoring trial and put my name down potentially for that.
The following day I had planned to have a lie in, I woke up at about 7am as usual, got up and it wasn’t till later I realised I hadn’t had that lie in. I obviously didn’t need it that much but I did fall asleep later watching the football and a relatively early night, to today when I’ve wrote this.
Well, there we go all caught up again, until next time.