Thursday 3 November 2016

Research all the way

Hello folks, hope you are all well.
The last couple of days have been quite hectic for me.
I'm on half-term holiday and spent two days at the Royal Hallamshire hospital in Sheffield undergoing lots of tests, apparently after my last clinic visit I am deficient in iron, and there is a new treatment that the research team are trialling called Ferinject for iron deficiency in PH patients. This trial is over 24 weeks and for two of those visits I have to have number of tests done which I will explain as I go on in my blog. I have to stay overnight at a hotel so that the research team can do all the tests in 2 days.
I arrived on 2nd November and met Mercy who is "in charge" of this particular research trial. Mercy said she would put me up in a hotel for the night and also arranged for me to be picked up and taken back home via taxi so that I didn't have to drive all the way to Sheffield. I had all the usual clinic tests e.g. Bloods, ECG, urine test, 6 minute walk test. I saw one of the PH doctors (Charlie) and he went through all the information with me as well as doing a check-up on me to make sure I was medically fit to do all the necessary tests. He also told me that I wouldn't need to attend my usual PH clinic appointments as they will combine that with the research visits.
Unfortunately I couldn't do the bike test as the machine broke down just as I was about to start the test. So I was sent back to the hotel for the evening and me and my mum went over to Meadowhall shopping centre to get some tea and also do a bit of retail therapy.
The next day 3rd November I was told to be at the hospital for 8am as they needed to do a fasting blood test. I couldn't have any breakfast so I was absolutely starving!! I then went and had an MRI scan and came back to the research facility only to be told that I wouldn't be able to have the infusion as the bike test hadn't been done as it was still not fixed!!
So now I have to go back to Sheffield in two weeks time and hopefully I will be able to do the bike test as it should be fixed by then. And hopefully they will give me one of two infusions. I will either get the iron or it may be saline. Whichever one I get this time I won't get on my next visit which will be in February 2017. I'm hoping this trial will work, and make a difference to all the PH patients who are deficient in iron. The results won't be out for at least another year as it takes the trial 6 months to do. Hopefully if it works it could become a treatment for PH patients like me who are deficient in iron in the future.
 Hopefully I will meet some of the Sheffield patients next weekend 12th November at the Sheffield patient day.
Thanks for reading my blog.

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