The last month has been very hard indeed. A radically different state of affairs to my left arm, first side.
One thing that I think that definitely contributed to this was that my pain was not well managed from the get-go and immediately post-operatively. I reluctantly wrote to PALS about this situation, particuarly as it was so radically different to my first surgery and post-operative care.
I was home for a total of 4 nights and on the morning of the 5th day at home, 12 days post-op, which happened to be my birthday (2nd December), my spirometer function declined significantly. A GP gave me a puffer, but when that didn't help I spoke to NHS11 and ended up in my local London hospital again. I spent all night in A&E and was transferred to a reclining chair at about 3am. My D-Dimer levels were extremely high - much higher than in the summer (see earlier posts on this topic back in July). On Tuesday morning I was taken to ambulatory care where they did all they could to persuade me to go home, but I just said that I felt too strangulated and unable to breathe and it wasn't safe for me to be like that on my own, plus the pain wasn't well managed.
At around 5pm I was finally taken to one of the medical admission wards and was in a 4 bed bay. I finally managed to have shower and get changed, having been in the same clothes for 18 hours or more. I had supper and was extremely tired.
In the morning I was moved to a side ward - they said this was because they needed to watch another patient more carefully, but I now think it was due to infection control because I had only been in another hospital a few days prior to this admission. I wasn't in this room long. My carer came and bought in more pyjamas and washed my hair and then later in the day I was moved to the heart and coronory care unit and again, had my own room, but unfortunately this was not ensuite and I had to use another bay for the toilet which one patient was extremely upleasant about. Fortunately she was discharged the day after.
On the Thursday Mum came to visit me and kindly bought some fruit and more soap (I am the queen of soap) and my birthday/Christmas present. A volunteer had kindly wheelchaired me down to the shop as I was unable to walk due to lack of breath, and then I saw mum in the atrium on the 4th floor, but she wasn't allowed to come in and see me as she was a bit early for visiting, unfortunately. When she did come we only had just over an hour as it was already getting dark and she had had a long journey here and then had to go through it again. It was really nice to see her.
By Friday I had seen specialist chest physiotherapist and she gave me a new spirometer to use to mine which kind of made it easier as I was feeling depressed watching mylack of progress at the same time to my first surgery.
https://www.youtube.com/watch?v=3T4xR_rKLVo&t=8s
I stayed over the weekend at the hospital and was a bit more relaxed as the doctors weren't pressurising me all the time. On Monday I saw my doctor again and said that I felt I needed another 2 nights in hospital as I still didn't feel well enough. This was received just about OK,but the next day she came back and said they were simply desperate for my bed and what would it take to get me home? I explained my carer could help on Wednesday in terms of hairwashing and shopping, but that on Tuesday I could manage food-wise if they could send me a snack box home, which they kindly did. I also ate my lunch in hospital, so had a main meal. I took a taxi and went home, still feeling very rough, in a lot of pain and not breathing well, but better than when I had gone into hospital.
The hospital had arranged 'Virtual Ward' services for me, so a nurse came to visit me at home and he was with me about 40 minutes and then I got a call about 2 hours later saying I needed to come back into hospital to see one of the ambulatory care consultants. I asked if I should bring in an overnight bag, and they said to, "just in case", as I had nobody else who could do this.
In the end I didn't see a consultant, although my doctor conferred with the consultant and they increased my orarmorph to 15mg every 2 hours and send home. I was quite concerned by this and spoke to my pain consultant who said that this was the absolute maximum of medication I could have at home and that they needed to investigate the cause of my pain, which I relayed to the hospital, but didn't hear anymore until the early part of the following week. This is what I say at the 3 week post-op mark for my second surgery: https://www.youtube.com/watch?v=5h9pcaHfQsU Note how much of my upper chest muscles I am using in my efforts to talk.
The weekend passed uneventfully, but I was very tired. I had a shock when it was realised by the pharmacy that I was overdosing my oramorph taking 15m1 which is 30mg of Oramorph- double what I should have been on. I was lucky that this was picked up quickly and remedied.
On the Monday I had an appointment with my GP. I was rather upset having had an argument with my mother, but my GP prescribed Lidocaine patches which I wear 12 hours per day. These have been a real help with the burning sensation in my chest, but not in the feeling of pressure. He also prescribed more Naproxen and some Capsicum cream, although this is unfortunately no longer available. We had a very quick chat about my back, but my GP said that I could be in pain for weeks and how painful a broken rib is. He was very nice, and I am seeing him in a week for a review. I mentioned to him about the Ormorph blip, but he was happy for me to continue on the correct dose.
Later in the day I was still waiting for the ambulatory care doctor to have spoken to my pain consultant. Finally I caught up with her, and she said it was up to my consultant surgeon to arrange any necessary investigations and tests. As it happens my surgeon called me from New York, and said that I could have some element of chest infection because my CT Scan mentioned 'atelectatic' changes to the lungs and to keep an eye out for infection - e.g. reduced sats, temperature, not being able to talk in full sentences. He said he wanted to see me next month. The ambulatory care doctor was glad I had spoken to my consultant and echoed the advice I was given.
For information about Atelectasis https://www.msdmanuals.com/en-gb/professional/pulmonary-disorders/bronchiectasis-and-atelectasis/atelectasis
I had one extremely good night's sleep, sleeping 11 hours - more I think from emotional exhaustion. At 4 weeks post-op I saw my physio.
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