The Next Chapter: Hospital in December 2010

Following my discharge from the local Hospital on Sunday evening, Rob phoned up Papworth on Monday morning: when he spoke to the specialist nurse, she informed him that they were just discussing what they should do about me. She phoned back to say the consultant wanted to admit me back into hospital and they would send an ambulance. Rob offered to drive, but they were adamant an ambulance was needed, a far cry already from yesterday' s fiasco at the local hospital. I thought it a bit over the top as I felt a bit better and was up and about.

When I got there all the usual checks were undertaken and it was discussed with me about transferring to intravenous drugs as the Iloprost via the inhaler wasn't appearing to be helping me. They asked me to think about it for the evening and then if I was happy to try it, they would start the treatment in the morning. That evening I blacked out again: I had just been reading my book on the bed and got up to make my next round of Iloprost, by the time I walked to the end of  the bed I was dizzy. I managed to get myself to the chair before I fainted. At this point I understood why the hospital had sent the ambulance and felt even more irritated by the treatment I had received the day before, I felt quite traumatised by it!

Coniston

I was getting very worried about how severe my PH was and this was exacerbated by the fact that earlier in the week I had a phone call from one of the patients I had met on my previous visit to inform me that another lady we had both got friendly with had died. She had only been in her late thirties and although we knew she was poorly, neither of us had expected this outcome. It really brought home to me how one minute with PH you can appear quite well and the next minute it can be a quick downward spiral. It was quite a shock to hear the news.  All this preyed on my mind and I knew I would really have no option than to agree to the intravenous medication quickly.  

The morning after they were really worried about the fainting I had been having and said that there was no option but to go on the intravenous drugs. This would be Eepopostrenol administered by a Hickman Line and Crono pump. They explained to me all the side effects that might happen and this information I took in, but I didn't really assimilate that it was more than likely going to happen to me, rather than not happen. I was offered anti-sickness drugs and paracetamol, but couldn't really see why at the moment, as I didn't know whether I would get the side effects or not yet. By the time Rob came back to visit me that morning the line had been put in my arm and the drugs started. Within ten minutes or so they decided they would rather have me on a ward than in a room on my own (I had been isolated as having been to another hospital I needed to MRSA clear)  then they could monitor me more carefully, I was wired up to a heart monitor and blood pressure machine that they were watching, but they wanted to be able to see me too. Again, so far, so good, but really I should have got the hint that things were about to get worse!

By the time they started moving me in my bed, I felt extremely nauseous and a few minutes after arriving on the ward I was being terribly sick. A bit humiliating at first in front of everyone and their visitors, but something that I was about to get used to! Naive old me again! After the sickness continued, a sister came and gave me some anti sickness drugs intravenously.

Silecroft

Welcome to my world of epopostrenol: I was now wired up to a heart monitor and blood pressure machine, had a Hickman Line in my arm supplying me with Epoprostenol, a cannula in my other arm for the anti sickness drugs. I was unable to eat or drink anything, was constantly being sick or having diarrhoea, had severe headache and such horrendous jaw pain that I thought my head would burst and I was flushed bright red as the drug did its work and opened up my blood vessels. Days came and went until I needed yet another drip as I was dehydrated and what had I said on my last visit to this ward about not needing or wanting a commode??!!

Every time I felt a tiny bit better, every time they increased the drug strength, then every time the circle of side effects came back with a vengeance. I had to really brace myself every time they increased it and the nurses were beginning to feel uncomfortable as they knew how difficult it was for me. It really did feel like I was being tortured and I had to mentally prepare for the next round.

Ten or eleven days on, the increase was done and the correct dosage arrived at, I started to eat, drink and be able to move about again and was well enough for a few visitors.

Next to come was an operation done by x ray to fit a catheter in my chest, so the drug could be administered straight to my heart and lungs first. After this some side effects came back as the drug was going directly into my heart now and not via my arm so had a stronger impact, especially on my stomach as the drug goes there after the heart and lungs, but they did subside eventually.