5 Out

After ten days I was moved out of the CCU and onto a normal ward. This was an emotional point for me, the low of moving from the security of the CCU and the high of the decision not to operate.
I lost my private room, but I also lost my drips. This meant I could now use a bathroom, and I took a much-needed shower. My back still hurt a great deal, and I found I was most comfortable sitting in a chair and leaning forward to rest on a table. My medication made me groggy, but as I slept more than usual I didnít mind. I was still working hard at getting better.
Now the aim was to maintain stability, and keep my systolic BP below 130. I was still on the ward-round list, and there were still tests to be carried out, but the atmosphere lightened up a little.
My BP stayed fairly close to the target, and it looked like I would soon be home.

One of the doctors told me that a month after my discharge I would have another scan to see how things were developing. Another doctor took my wife and me aside and gave us a question and answer session prior to discharge. We didnít know all the right questions to ask, but his advice was clear enough.

I must buy a BP monitor and check and record my BP. This was vital to my survival.
A reading of 180 systolic should be reported immediately to my GP.
I should report any unusual or worrying developments to my GP immediately.
I should be able to start returning to normal life in four to five months.

So with a lot of hope and a little trepidation, I prepared for return to the big world


When I returned home, I began the long task of resting and recovering. It wasnít as easy as it sounds. My back hurt, my kidneys hurt, the top of my legs hurt and walking was impossible over any distance, or up hill. Walking upstairs was very painful and exhausting.
To be helpful, one of the first things I did was to put all the BP readings from hospital into a graph. I would then be able to chart any changes or trends, and add my own readings. For these I was continuing the hospital regimen of three times a day as I had been told.
A couple of days later we reported to the GP. I had to take a taxi the Ĺ mile. My back hurt, my legs hurt, I was very light-headed. My legs also ran out of steam on any gradient. I had even updated my BP readings. Pretty good, huh?
Unfortunately my GP didnít think so, and I was the subject of some ridicule. This was not a good start. I tried to explain that this was what I had been told to do.

Apparently I had been misinformed. With particular reference to the instructions from the hospital, what I should have been told was:

Taking BP once a week or so is plenty enough monitoring.
The important reading is diastolic - systolic isnít that important.
A reading of 180+ is only important if sustained over 3 or more days.
If I have a problem, go straight to hospital. Consulting the GP would just waste time.
I will continue living on a knife-edge.
Bearing in mind that just two weeks ago I had been a hairís breadth from death, and that we had no idea what my chances of survival were, what was normal and what wasnít, and what to expect, you will understand that we were completely confused and alone. And of course the doctors in the hospital have moved on to the next emergency, and arenít available to us.

Meanwhile my back was causing serious hurt, and the medication was leaving me feeling awful. In addition my kidneys were causing great discomfort at night and I was finding it difficult to breath. My BP was yo-yoing around, but of course we had been told that it didnít matter unless it was very high for days.
So we took it all day by day and wondered what was going on.

Early one morning I felt so ill I struggled down to the GP. He immediately called an ambulance, and once again I arrived at A&E. I was found a bed, and was attended by a ward doctor. Tests were done, and I waited for the consultant. As the day wore on I slowly began to improve. By the time he arrived late afternoon, I felt much better. There was a brief discussion amongst the medical team, the gist of which was that I was a bit of a worrier, viz my BP records, nothing wrong, go home. I think they thought I had called the ambulance.

I went home that evening wondering if I should have refused the ambulance called by the GP. I shall certainly consider any future suggestions very carefully.


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