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!
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.
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.