The Joys of Iloprost

Up to this year, I hadn't ever been on medication, the odd course of antibiotics being the most and only three or four times at that, as far as I can remember. Sometimes I would succumb to the odd paracetamol, so to suddenly find myself on a cocktail diuretics and digoxin for heart failure and warfarin to prevent blood clotting (a PH side effect) was a bit of a shock at first. Managing all these drugs, when to take them, repeating prescriptions and going for blood tests felt a bit of a task in the first few months, on top of feeling ill. Eventually, I managed to get them on a repeat prescription from the pharmacy and bought a NHS prescription prepayment certificate, all made life a little easier.

Instead of going to the local hospital for my blood tests and having a three hour wait, I eventually came under the care of my Doctor's Surgery and could have my blood tests done for my INR checks by a nurse there. I was lucky the Warfarin Nurse is a real gem and took a great deal of interest in my condition as I was one of her few patients who had to be on warfarin indefinitely. She used to tell me I was her most interesting case! Because I was on warfarin, I was given a yellow card to carry with me at all times: warfarin is a blood thinning drug and too much can cause internal bleeding and too little would mean I would be susceptible to blood clots in my pulmonary vessels. If anything was to happen to me outside of the house, hopefully someone would find the card. I still have the same nurse each week and sometimes she will bend over backwards to give me a warfarin check: if I have been in hospital or something and can't get to her clinic at my doctor's surgery, she will let me come up to her surgery where she works for the rest of the week and squeeze me in somehow, she is wonderful and I wish she was at our own dotcor's surgery all the time!

Going to the Doctor's Surgery for these checks was an enormous help, parking was horrendous at the local hospital, with building works going on at the time, the parking was a long way from the hospital and I had to walk up an incline to get to the hospital entrance, a real struggle for me in my state, then it used to be so busy, I once waited nearly four hours to get a blood test and then it was the hike back to the car again. It really entailed a whole day out for me, lucky me! All this and I had to pay for the privilege of such a fun day out with the car parking fees, which were always expensive as I had been there that long!  

Fortunately, I had just become accustomed to all the drug regime, when I was prescribed the Iloprost or Ventavis as it is sometimes known. It took three days in hospital to learn and get confident enough to take this drug without the nurses' help. The procedure, once you got quick at it, took about half an hour, which doesn't sound bad if you didn't have to do it every three hours, seven times a day. The drug had to be prepared in sterile conditions, using syringes and vials and then poured carefully into a special nebuliser called an I-Neb, once this was done I needed to sit quietly and inhale it, once finished all had to be cleaned and rinsed in filtered water. It was a gruelling process starting at six in the morning and finishing at midnight. As I took it and the weeks went on, I began to get completely exhausted, I felt I was clock watching all the time in readiness for the next dose and it was difficult to go out for too long as I needed to start the next procedure two and a half hours after I had just done one to allow for it to be ready within the three hour time limit. Sometimes I made it up in the car on a tray to enable me stay out longer. It used to make me go bright red in the face, once I had inhaled it and sometimes made me feel a little nauseous. It could have really got me down, but I stayed positive and felt determined to give this a good try, after all it should be really helping me, keeping my symptoms at bay and halting progress of this dreadful PH and I would do anything and put up with anything to slow its progress down.

Unfortunately, my symptoms seemed to be getting worse and worse, fainting carried on, as usual it was random and out of the blue and a lot of the time I looked really well. It all came to a head again, after we had had friends round one evening for dinner. On going to bed afterwards, Rob and I had commented on how we had felt nearly back to normal for once after a relaxed evening: life had felt nothing near what it used to be since my diagnosis: we both wake up with pulmonary hypertension; we both go to sleep with pulmonary hypertension. Rob had a bad cough at this time and in the night had gone downstairs so he wouldn't disturb me. I got up to go to the loo and when I returned and got back in bed, I really didn't feel right, I blacked out,  when I came round, it didn't seem to be the same as usual, my arms and legs were waving around and although I had regained conciousness, I felt as though I was still struggling. I screamed out for help somehow and Rob came running upstairs in a panic and helped me come back round again. He immediately rang the PH centre, who contacted the consultant straight away although it was the middle of the night. They advised me that although I seemed fine again once I had come round to go to A&E for a check.


I don't like to say, having experienced the best of the NHS and now depending on the NHS for my life, but this was not a particularly pleasant visit to hospital and it eventually led me to being admitted back onto Duchess Ward at Papworth once again.