Thursday, 10 October 2019
Coffee to sit in please
I got home for an hour or so to get some things and then got a lift back to hospital and I was put in a side room straight away. I was told that anyone else coming in will have all the protective gear on and not to panic, they also said if I need to leave the room I have to wear a mask.
They started taking a lot of blood cultures. Later in the day they found me a bed in a side ward, their initial thinking was that it could be tb and I would need to have 3 days in a row of a negative result before they could downgrade it, and they started me on iv antibiotics tazacine(?). I remember leaving the room once with the mask on to go to xray to get my chest done, the results showed the nodes and a bit of fuzz.
Over the days more sputum samples and blood samples were taken. The initial results show no viral or bacterial infections and a bucket load of other infections that I'd never heard of, legionnaires was one I remember them saying about. The infection was downgraded and people were allowed to wear the paper masks again rather than the biohazard ones they had to while I was still tb query and downgraded again were I was OK to leave the room with no mask etc. Had an echo scan to make sure my heart was OK but everything looked well with that.
One result came back with a positive and that was a fungal spore, they weren't able to culture anything from this but it did make them start me on ambisome an antifungal infusion, although I was getting side effects from this sharp tingle down the spine each time I had it, but we had agreed to continue with this nonetheless the night doctor had her own script and changed it to another drug, starts with v, sounds like vericonisol. This though I also felt I had side effects from, I had a sensitivity to brightness the first time during the day and the 2nd at night it got brighter, seriously bright when I closed my eyes. I also thought I was dreaming and opening my eyes to check things weren't there that I thought I was dreaming, but it wasn't until the docs spoke to me about that I realised that I was hallucinating and these are symptoms of the new drug I'm on, but it only seems to have happened the first couple of times, I've fell asleep after any since or not noticed it.
At the end of the first full week I had a broncoscopy to see if they could get a sample or see anything but they went down as far as they were willing to and weren't able to get much, they done a few washes to get samples too, all I remember about it is coughing. That day and the next I felt pretty crap and the infection markers in my blood spiked up to 300 compared to the 100 odd prior.
But Saturday and Sunday came and I felt pretty good, still getting fevers but wasn't coughing half as much and not bringing up much or anything. I've also been waking up at night choking and coughing and bringing up pure blood. I seem to cough at night and rupture something which then bleeds causing me to cough more, thankfully with the platelets being so high it has clotted quickly and settles within 10 mins. More thankfully this seems to have settled and hasn't happened for a few nights now. So long may that continue.
Cough has continued this week and they took me off the Taz as I'd been on it for 2 weeks and it will have done what it should have by now, they also think it may be triggering the fevers, but they have continued since, they've also started blood cultures to chech the Taz wasn't hiding anything.
I was speaking with the respiratory doctor yesterday and told him about when I went to Glenarif a few months back when it was a humid, warm day, I already had a bad cough and I'd forgot how hilly it was so I was coughing loads and deeply, as a possible cause to a fungal infection, he didnt say no but he said it's everywhere you breathe in thousands of these a day, it's even probably on that table in the house and once you open the door. I always knew I immunosuppressed but I certainly didn't think that breathing anywhere would cause something quite like this.
But anyway they have booked me in for a biopsy of one of the nodes in my lungs which will hopefully give us an answer but will at least guide us the right way. They are also planning on doing another echo scan but this time with the pipe down the throat as it should give better results, checking for infections.
Currently as things are we have no idea what this is, the biopsy will let us know if it is fungal or deformed cells or something else.
They feel the infection may have originated somewhere else the heart, stomach etc hence the heart test for now. I can't fault them, the amount of effort they have went to with all the tests and promptly too, to the little things that the nurses do for me they've been exceptional.
Thursday, 10 October 2019
Some coffee to go please
My last post I believe was just under a year ago when I had the clot in my leg, since then things have been good on paper, counts were good(too good for my liking), steroids being reduced until I got to 4mg and started to get withdrawal symptoms. I was very pleased to get to this level as the lowest we were able to get to before was 11mg a day so it was a big step and a lot of time. Since I was getting the withdrawal symptoms they stuck them at 4/5 alternate days which seemed to help. But that's the good news on the other side of the coin I can't remember the last time I didn't have a chest infection or feel physically able to push myself like I used to, even a simple walk in the evening felt too much.
And so this brings me to the recent history, at the start of September I started coughing a bit worse than normal followed by a very runny nose and things were just getting worse and worse I think it was the next Monday I went to the gp after spending most of the weekend in bed and she gave me antibiotics and got a blood sample taken. Things didn't improve much, just in time for my annual leave, I think doing nothing the whole time is an exaggeration of what I'd done. I was in no state to go back to work as I'd been up most of the night (and the last week) with more sweats and had started coughing up blood. My gp phoned me to see how I was and she urged me to phone the hospital basically playing my hand for me by phoning them first. So they told me to come up and they booked me in to have a ct scan that day to see if there are any clots in my lungs. It was a long day in hospital but I was able to get the scan and preliminary results, they didn't find any clots but they did find swollen nodes.
I have this strangest type of luck that when getting checked for something they discover something else.
Well they booked me in for another ct soon after to see if it had spread elsewhere, on the Wednesday going to hospital I had a feeling I was going to be kept in and prepared the house for me not being there although I still had that hope that I wouldn't and didn't bring a bag.
It all started off very positively no signs of any other swollen nodes and the swollen nodes could be cavities or lesions. Then they asked how I was which was all pretty shit, at this point they wanted to keep me in. I dunno if it was what I had said or they had planned this before, but the mood very quickly changed after what I had said. They let me go home to quickly grab some things and straight back and put me in isolation.