That evening, surprise, surprise, my lovely friend had been admitted as an emergency too, she hadn't been feeling so good either and had rung up too. We were both well enough to sit and chatter and have a catch up and wander about. I remember thinking it was nice we were not on our own and her increase in drugs was planned for Monday, we would be going through it together again and could support each other on.
We both laughed as we showed each other the pouches we had bought for our crono pumps and catheters, we had picked some of the same colours. I had sourced these from a website called Joey Pouch - you will find that this is the only one, as this particular form of drug, pump and catheter is hardly commonplace and there are hardly any people in the country who have them, Idiopathic Pulmonary Arterial Hypertension being very rare. Only one person in a million have it and not all of these are treated in this way, this is often a last stage treatment before lung tranplantation. The website Joey Pouch, had been set up by a young patient, who had been diagnosed with Idiopathic Pulmonary Arterial Hypertension at the age of nineteen, he had turned his life around and had set up a business making medical pouches so that patients could wear their medical equipment with dignity and still look fashionable. He had been on the same medication as I was for years and was twenty nine now. He was a real inspiration in how you can pull your life together after being diagnosed with this dreadful disease and I was inspired by him that I would get through this. My increase started on Saturday and I was wired up and the nurse asked me if I was ready, she had helped me a lot back in December and knew this may not be pleasant. I was all cheerful and ready and knew it must be done - I just wanted to stay well and be there for my family and I would do anything for that. I reasoned the drug had been in my body now for a few months and it was used to it and it would not be as shocked as it was when they first started the Epoprostrenol. While I was wired up I noticed my friend, who was right across from me had been too, although she was not supposed to be starting her increases until Monday. We were both there with our sick bowls at the ready and we waved and smiled at each other, old times! I did think maybe they had started her increase same as me. Rob arrived to visit me early afternoon and all seemed to be well, he had a chat with my friend as he was pleased to see her again, and then sat with me chatting for a few hours.
When he left in the late afternoon, I noticed the ward nurse was sat with my friend for a long time, so I didn't get chance for another chat before tea time. An x ray machine was brought on the ward and there seemed to be a lot a attention around my friend, but it just looked as though they were doing their usual tests. Tea time came and went and I noticed by this time that there were two other nurses with my friend, who were in a different uniform and I began to suspect that something was not quite right. They took her off the ward with lots of support, two nurses and the doctor giving her lots of reassurance. I was really worried for her; however, I had heard the doctor gently reassure that everything would be all right and they would get her sorted and I knew she was in the best hands.
Sunday and the next increase, by this time I was not feeling so good, hadn't done so in the night and as soon as they gave me the next increase, the sickness, headache, jaw pain and flushing came back with a vengeance. How naive I had been again, when I told the nurse I thought I might have been all right this time, she shook her head and said no, this is a very strong and potent drug. I suppose that is why it works so well. Epoprostrenol (or Flolan as it can be called) has to be increased slowly and in stages until the correct dosage is attained, the patient has to be wired up to a heart monitor and watched very closely for any adverse side effects. Sometimes it is increased by increasing the actual amount of Epoprostrenol and sometimes it can be increased by adjusting the flow rate of Epoprostenol on the pump. The flow was being increased on the pump in my case and the aim was to do two increases per day. Not everybody suffers from the extreme side effects that I was experiencing and indeed I had met three people on the drug up to now and none of them were going through what I was having to, they were lucky - well in that way anyway! I was being very sick, so only one increase was given that day. I was still worried about my friend, who had not turned up back on the ward yet, people usually do after they have had a procedure, but I gathered as it seemed an emergency, she may still be in intensive care, I had seen this happen before and then the patient come back a day or two later. I thought the special nurses that had been with her were probably intensive care nurses. It was intravenous anti - sickness drug time for me again as well as Domperidone, a tablet anti sickness drug. When I was first offered Domperidone, I thought it sounded like a fine champagne and I always wanted to have a little giggle to myself that I had special champagne! I wasn't taking any risks, give me as much anti sickness as possible this time I thought!
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