Well, the last two and a half weeks have been a bit eventful. I think I jinxed myself well and truly by saying in my last blog that I was likely to be very bored...Mind you, I was being hopeful that this cycle of Flag-IDA would be as simple as the last - how wrong was I?!
So, the night of 6th July (after my last blog) I spiked a temperature, which I was expecting as last time I had an infection exactly the same day post chemo, etc. I was pretty quickly moved to a side room; however, I wasn't expecting to still be spiking temperatures a week later. The antibiotics I was on were obviously not helping and my antifungal got changed too, in case that was the cause of the infection. I had two bacteria present in my blood and a UTI to boot, and following many chest xrays, a chest CT, and crackles present over my chest it was obvious the infection had got into my lungs. I also had to have a head CT as I had visual disturbances and headaches, but this was put down to the change in antifungal, and have been fine since. To help treat the pneumonia I had regular physio with a machine called 'the bird' that helps force oxygen into the bottom of your lungs to help open up the lobes that are affected by the pneumonia and get up some nice amounts of phlegm. Because of the anticoagulants I've been on for the blood clots, and because my platelets were low, I was also coughing up blood, which probably contributed to the introduction of the bacteria into my lungs. After being put on oxygen, it simply wasn't enough to keep the oxygen saturation in my blood high enough, so I had to be put on another machine that forced oxygen into my lungs, again to open up the affected lobes. It also helps by humidifying the oxygen to aid transport of the oxygen into my blood in the lungs. My PICC line had to be removed as well, as they thought it was harbouring the infection, so I was back on cannulas, which are simply impossible to put in me now - I managed to have one decent one for 9 days that bled back(!), but that eventually gave up the ghost and I needed another one.
By this point I was feeling pretty weak, and there was talk of me possibly having to move to the 'step up' unit in the Marsden, where you receive one-to-one nursing care (similar to a critical care unit). This was last Wednesday, and when Dad came to visit, he could see how much I was struggling. Mum came up to stay with me (thank you so much to Alicia for giving her a lift up!) and helped me through a really rough few days. If the whole pneumonia thing wasn't bad enough, the new antibiotics (that were finally working!) were making me feel sick the entire time as I needed them three times a day, and the antisickness I was on were simply not working. I felt rough enough from not being able to breathe properly but considering I couldn't eat properly either, I was hardly able to move without exhausting myself. Finally, by the Monday I had turned a corner and was no longer feeling sick thanks to a pump that constantly administers a strong antisickness (that does make me feel out of it all the time) but means I could finally eat properly again. They tried to put a central line in my neck on the Tuesday afternoon as they couldn't get bloods out of my new cannulas and they would inevitably give up at some point; however, naturally with me, it didn't go to plan and they weren't able to place it. I now have a thrombus inbetween the carotid artery and jugular on the right side of my neck in the sheath that surrounds them both. This is causing referred pain down into my chest and my shoulder. It has improved over the last few days; however. The following day they were going to retry putting a neck line in but in the other side, but due to the traumatic experience of the previous day, the anaesthetic team decided another PICC would be better. I would have had one earlier, but there was literally no one on the 'official books' available in the hospital to do one as they were all on annual leave. One of the lovely nurses in Minor Procedures is trained to do them; however, so she said she would do it first thing. The procedure still took 2hours and 4 attempts with the anaesthetist eventually having to place the cannula and guide wire, but the main thing was the PICC line was finally in! The same day, I had to head up to the Royal Brompton Hospital for a echocardiogram (ultrasound of my heart), as one of the bacteria present in my blood can sit on the heart valves and cause them to be leaky (endocarditis). I am still waiting on the report from this, as this will determine whether or not I can come off the antibiotics and therefore, antisickness. If I can, then hopefully I will start feeling back to normal again soon, and hopefully be home soonish, and as I'm now off oxygen, that's all that is holding me back at the moment.
My neutrophil count is 0.6 today, so normally that would mean I could go home, but due to everything that is going on I'll be staying in a few days yet. I just need to have an ultrasound today to check my arm (as it's quite swollen from the PICC attempts) and my neck (from the neck line attempt) for clots. But the main thing over the last few days has been trying to catch up on sleep. I'm absolutely exhausted from two weeks of very disrupted sleep and long, stressful days of procedures. But once I'm back home I'm sure I'll recover quickly.
I need to take all the time I can to rest and recover when I'm out as I'm probably going to be back in on 21st August, as I have a stem cell donor!!! Apparently they're a 10/10 match and we're currently looking at cell day being 28th August, so I'll be needing to be in a week beforehand for the high dose chemotherapy and radiotherapy. I'll be finding out more about the process next week at a couple of appointments, so intend to do a blog about it all then to answer everyone's questions!
Anyway, hope you are all well, and that the final years had an amazing grad ball and graduation ceremony! Was able to watch the graduation on the live stream - very proud of you all!
Much love xxx
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