Tuesday, 14 February 2012

More drugs, More Increase and Home Again.

Wednesday saw the next increase, followed by all the usual horrendous side effects I was experiencing. On Thursday the consultant decided I couldn't tolerate any more and they decided to try the Sildenafil, which had been planned anyway. This was to be done after dinner so I could try and eat some food or at least have a drink during that day. The Epoprostenol  increase was over now for this visit and it was disappointing I couldn't quite get to the planned dosage, I felt I had really given it a good try, but I was worried that I might not be safe and stable again. Sildenafil was given to me on Thursday evening. I was feeling pretty nauseous, but had an event free night so it was continued on the Friday morning. At this stage the consultant and ward doctors were happy and felt that if I continued without sickness, I could go home later that day. The usual round of visitors came to see me in readiness for home, followed by a physiotherapist who asked me to take part in some follow up research, which I agreed to.

The palliative care nurse came to see me, this was becoming a regular thing and although I didn't take up the offers of formal counselling, she was extremely helpful, reassuring to talk to and this gave me a lot of support. I always felt that should I want to take up the offer of counselling any time, I had a really good relationship with her now and it may be something I need if my journey with PH continued at the pace it had. I was grateful and still am for her visits.  During this hour of visitors, the sickness reared itself again with a vengeance and intravenous anti sickness drugs had to be given to me again. I still hadn't eaten or drunk anything much and this time I felt dizzy and extremely unwell. I was having bad diarrhoea too and I could barely lay there. A drip was given to me again and I really thought the sickness would finish me: my husband had to abandon changing my pyjamas after I'd been sick all over them, I could only lay there, burying the side of my face where my head hurt the most.

Definitely not home time for me and probably the lowest of the lows so far.

The specialist nurse, whom I am very fond off, came and offered me her support and I was grateful for that, although there wasn't much she could do. Eventually the main consultant came to see me and decided the Sildenafil should be stopped for now and attempted again on Saturday. I was disappointed in myself that they had had to abandon all their plans. I truly wanted to get myself back in a safe place with my PH.
Saturday came and after a bad night I pleaded with the weekend ward doctor to abandon the plan for more Sildenafil that day, as I didn't feel my body had adjusted to the Epoprostenol increase yet. I know they wanted to get things done quickly, but I thought it made common sense to let me get used to what was causing my body a lot of upset first before even more drugs were foisted on me. She seemed to agree with this and after speaking to the on call consultant I got another days respite.

I had a marginally better day and night, although my tummy was still upset, so I asked for another day's grace and was granted my wish. I dreaded Monday as it would all start again once all the usual routines and staff were back, but the ward doctor thought I could do with another day's respite and after speaking to the consultant we agreed to start the Sildenafil again on Monday evening. On Monday's there are often quite a few new patients on the ward, having tests and I remember thinking that will be fun for them listening to me throwing up all night on their first evening in hospital! I actually had a better evening and my stomach was more settled, so another dose was given on Tuesday morning. I had been told I could go home on Tuesday if I could manage the drug. I decided it was time to do this whether or not, as I really could not take any more of the sickness, it was beginning to feel a bit like torturing myself.

I got myself dressed and luckily I wasn't sick, although the nausea was beginning to build up inside me. As usual, I have this knack of actually looking quite well when I spruce myself up a bit, I tell myself I scrub up well! Nurses and doctors said I looked much better and all was on for my quick exit. The consultant was pleased I hadn't been sick and I was given my discharge letter during lunchtime. At lunchtime I had ordered something the day before that really didn't take my fancy now I was nauseous again, at this time I was so nauseous I didn't manage to eat it, but we left for home as I thought I may be able to manage something I fancied more once I was home.

Once home, I did manage a little something to eat and drink, then I felt so exhausted I collapsed into bed. Hospital really takes it out of you and I had had a lot to cope with, both mentally and physically yet again.

It was March now and a stark difference to when I came home at Christmas, Spring was in the air, the sunshine was out and the birds were singing. It was wonderful to be home again.            

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