Hospital in December 2010 Part 2

The morning I had the catheter fitted into my chest, I can remember well. I had made friends with most of the patients on the ward on this visit, as we had all been there for a few weeks together by this time and also the friend from my last visit was here again. Those of us who had PH, thought that childbirth had been the trigger. There were three of us with Idiopathic Pulmonary Hypertension who thought that, plus one girl who had got as far as lung transplantation to cure her PH, who felt the same. Unusually for the ward there were two of us being eased on to Epoprostenol, the other patient being a lovely young girl in her twenties, she had a gorgeous young baby. This meant we both went through all the trials and triumphs of Epoprostenol together and helped each other along the way, as we really understood what each other was going through. I was to have my catheter fitted first, then my friend was to go down next for hers fitting after me. The actual procedure wasn't too bad as I was given a local anaesthetic, a nurse accompanied me and I had already had an angiogram procedure in summer and a right heart catheter procedure in October, which were similar. I was able to see my friend when I came out and reassure her that it wasn't too bad.

While I was resting after this procedure, the ward was very quiet and as it was near Christmas a group of primary school children came round singing and giving out presents. I hadn't cried in front of anyone except Rob at this point and it took all my strength not to break down. Not only was the singing very moving, but it suddenly hit me that my life had changed forever. I'd lost my career, my purpose in life and a few months ago I would never have dreamed to have been in this position. It would have been me five months ago, taking children out and about to sing; it would have been me five months ago, getting the children to entertain the sick or needy and all of a sudden, the tables had been turned. Everyone said how lovely they were and although I agreed, I wanted them to leave before I broke down. It felt very stark how much my life had changed and for a short while I felt desolate and this was not helped by the return of my side effects that day, which were pretty bad. I am usually very positive and endeavour to keep this way.

After that day, my strength began to return and the side effects of the drug eased, but then the real work started and my friend and I had to learn how to administer the drug ourselves, which was no mean feat, a complicated affair, a hard process to get your head around, especially when you have been so ill. Christmas was looming and we would not be allowed home until the staff thought we were fully competent. During this time also, I had to look at my teacher's pension, I had been advised by the consultant that it would be a sensible step to give up working. My case was not a straightforward one on the pension front, because I'd left my full time position at Easter and taken a supply contract for summer term. Why is life so complicated at times? I was in a position where forms needed to be completed by myself, my previous head teacher and my consultant by the end of the month, to be in time to apply for an enhanced ill health pension, which would make quite a difference to our income now that I couldn't work. Rob and I managed to pull out the stops on the paperwork and get this sent off in time by the skin of our teeth. We were doing this at my bedside, while trying to learn how to make up Epoprostrenol.

Rob was also being hindered by the weather, it was a freezing December with lots of ice and snow. On top of all the stress he and the girls were having to endure with my illness, they were struggling to come and visit. He had been given some time off work at this point too, as I had been so poorly, it was impossible for him to be in two places and he wanted to be near me. The other patients used to look forward to him coming too, as many had no visitors as they lived quite a distance away.

We were getting near to Christmas and Rob and I still hadn't mastered the 'making of the drug' routine, pressure was on, we both had to be observed and pass an assessment before I could go home. Stress, stress and more stress we could do without. I remember thinking it was just my bad luck I had an illness where I had to be observed! Observations were part of my job as a teacher and any teacher will tell you that its one of the most stressful parts! My liver function was also showing as deranged, another scan, but soon sorted, it was the clexane injections I needed to have following my Hickman Line insertion procedure. One thing too many on top of all the other medication. Then another patient on the ward was diagnosed with swine flu, another problem, would I ever get out for Christmas?

Christmas Eve and we were in a 'can I, can I not go home' situation, Rob was on the verge of just getting me out whether or not, as he passed his assessment the day before, I have still to do mine. We have both really had enough and I am desperate to get home. After what I have been through since summer, enough is enough and I think Christmas day in hospital will make me crack. Maybe another Christmas, another time, but not this one. Great delight when I pass the assessment. Going home for Christmas at last! Most of my buddies were discharged for Christmas too and we said our goodbyes, exchange mobiles etc, we were given our truck load of drugs to take with us. We were hugged by the staff, I had been in there three weeks and came in extremely sick, they said my heart was packing up, I was leaving mended for now at least. We were all delighted with the outcome. Happy Christmas!