Sunday, 21 May 2017

Ferrinject study-part 3- the final visit

Hi folks hope you are all well.
So following on from the blog "Research all the way!!!" I was back at the Royal Hallamshire hospital on 17th May. This was my final visit for the ferrinject trial. Again all my tests had to be re-done- ECG, bloods, MRI scan, 6 minute walk test, exercise endurance test on a bike!!! This time I didn't have an infusion as I only get 2!!! I was told that only people who are severely anaemic get the ferrinject-iron, but it's not be proven to work!!! Some people may have had it and it may well work. This is why the research team are doing the trial to see if myself and other PH patients who are deficient/low in iron benefit from the ferrinject infusion. If it works I may be offered this as part of my treatment. The results won't be ready till maybe for another 12/18months. I really hope it works as i'm fed up of feeling tired all the time.

Anyway after my last visit to Sheffield back in February where I had the second infusion-(still don't know which one I had!!), I felt better in myself e.g. I felt less breathless, felt less fatigued/tired, and my exercise levels seemed to increase!!!! Is this just a coincidence that I want the ferrinject to work or did it really have an effect on me?? We will have to wait and see what the results show. Anyway, this time I did my walk test and didn't need to stop or sit down in the middle of the test. Mercy, the research nurse said that my walk test had gone up each time I had attended the clinic- it had gone from 93 the first time to 450 metres on Wednesday, I was very impressed with myself. Even on the endurance test which is where you are hooked up to an ECG monitor, a breathing mask to measure my breathing and a blood pressure monitor, I impressed myself as I managed to do the whole test without stopping till the end!!! I was moderately out of breath this time, whereas last time on the exercise test I had to stop as I was severely out of breath. I do try and push myself to my limits on things like this as I know I'm in the right place if anything happens to me.
Whilst I was in the research clinic I saw one of my PH doctors Charlie, he said I was doing well and that after this visit they would like to see me back in normal PH clinic in 3/4 months. I have to stay well as my sister gets married in September and i'm being chief bridesmaid!!!
That's all for now folks, hope you enjoy reading.