And back to the Story: Fun with Doctors and Nurses

I was now waiting for a phone call or a letter from the Transplant Team to let me know when I was going to be admitted for my assessment. Waiting becomes the norm when you are ill: waiting for appointment letters; waiting for doctors appointments; waiting for hospital appointments; waiting for blood test appointments; waiting for consultant and doctors reports; waiting for prescriptions; waiting for test results; waiting, waiting, waiting in waiting rooms. Your patience is tested to the limits and back again. I ponder often is that why we are called 'patients', is it derived from the word patience?

Over the last six months I would often get chest pain and sometimes it would be painful enough to wake me at night and sometimes it would be quite worrying. I had had some strong chest pains over the weekend, they had been continuous, sometimes a dull ache and sometimes sharp and stabbing pain. It seemed to radiate out around my heart and left area of my chest and I had some tingling down my arm. I did not feel so happy about these chest pains any more and was getting quite concerned, although I had mentioned them on several occasions, both in hospital and at outpatients clinic and the doctors had not seemed too bothered or interested.

It was a strange coincidence that day that the PH nurse rang up to see how I was getting on. I explained to her that I wasn't too good at the moment and it was chest pain that was worrying me. She immediately told me I must go to the GP and get an ECG done. That was easier said than done at my doctors surgery, where appointments with the nurse are usually booked for a week or two, but I gave it a try, explaining the situation and was lucky to be given an appointment at the other surgery they have for that afternoon. Rob needed to come home from work early so he could drive me there. I wasn't well enough to be going on my own.

When my turn came to see the nurse, she was a little put out by the fact that there was no paper work to support my having this ECG, but I explained the situation and she seemed satisfied to go on with the procedure.  At this point she told me I should get completely undressed to the waist down. Having had more ECGs than hot dinners at this point, I knew that this was totally unnecessary and I had also worn loose, buttoned clothing to accommodate this test. However, she seemed in no mood to be questioned, so I did get on and get undressed. There were two windows in this room and they were fully exposed, so I was not impressed at this stage, but kept quiet because I still felt coming here was probably the better option than turning up at the A & E at the local hospital, considering my bad experience back in  December. She had drawn a curtain to my amusement round the bed I needed to lie on, I suppose this was so that no one would be able to see me, a bit of a joke stood there topless on the outside of it. I didn't know whether to laugh or cry, but I have learned that laughing to myself at how pathetic or bizarre a situation is usually the better option.

I knew as I clambered round the bed and found my way through the curtain that I would have the upper hand next, and I purposefully and gracefully got onto the bed and laid down with my Hickman Line displayed very nicely, sprouting out of  the wound in my chest. Ten - nil to me! Her face was a picture and I have never seen an attitude changed so quickly. Suddenly she could not do enough for me. And that is how it should be when you are walking round with a life threatening disease every day, knowing that one day your illness may get the better of you. Many days are spent coping without any extra support and getting on with things; when you really need the help, because you know something is not quite right and possibly this may be the day all the treatment fails, you need people to be at least respectful of you and at best, sympathetic and helpful. Mission achieved, I was told the heart rhythm looked fine and she copied it for me in case I needed it for the doctor.

The next stop was to get an appointment with a doctor, the pain was twinging a little, but was more intermittent and calm. Again, doctors appointments are always booked days in advance, but an emergency appointment can be booked if you visit the surgery at eight thirty in the morning - too late for today, but next plan would be to get to the doctors by eight thirty in the morning. I felt I still needed a chat and check with the doctor and had been advised by my PH nurse to do so.

I got my appointment easily enough and Rob decided to go in to work later and come with me to the doctors. In fact he walked round with me in his suit and brought his briefcase with him so he could carry on round to the train station after. I usually take my spare pump with me everywhere plus a full set of spare medication just in case of an emergency, as I had been told to do when I first started the Epoprostenol. The doctors is only across the road so I didn't feel it was necessary to do so today.

We were lucky, we saw the doctor who I had been to see about my condition when I was first put on Epopostrenol, so she knew my history. I explained what had been going on and about the ECG, the doctor was not happy about what I had been experiencing and before I knew it a blue light ambulance was rung for     and I was put on oxygen. Blooming typical, I was being rushed to hospital and I hadn't got my spare pump or medication with me, the only time ever I have not taken it with me. That will teach me. Rob was not supposed to leave me alone, the doctor had left him sitting with me while she carried on her surgery until the ambulance arrived. He ran back home and got it before the ambulance arrived and the doctor didn't know he'd disappeared for a while.

So instead of leaving the surgery and tootling off to the train station for another day's work, Rob was now with me in the back of an ambulance, whizzing with a blue light, off to the local hospital. I remember him saying, 'never a dull moment with you!'