Ferinject
This is a study to see how patients with low iron can be helped by infusions. We do not retain iron as a "normal person" so we are often low in our reserves. Quite why this happens with us is still open to studying . We cannot just take iron tablets as our bodies do not absorb it, hence often the need for us to have ferritin infusions. This is a study watching and testing how we react in our exercise capabilities when we have the said infusions. It is to see if our breathing improves as low iron hinders our breathing capabilities and to see if our hearts work better when given the extra help with the iron. There will be much more into it than that but hey, I am not an expert, I am not a scientist I am just somebody living with this disease who has decided to do all I can in the search for a cure for us.
Transplant was out of the question for me, my age and a problem with my neck means that it is not an option. This means that like it or not I am stuck with this disease. There is no way back so we have to move forward and I want to get involved in the search for a cure. I want to know that when the cure comes my being a guinea pig has helped to bring this disease to a halt, to stop it in its track, to in effect tell it to sod off, we have won the battle. I know this day will come, I know that every day we move a step closer, I know that there are research labs world wide with some of my blood in their freezers, that it is being worked on, looked at, analysed and tested.
I seem to have stepped away from my ferinject study but I will come back to it. When talking to my trial co-ordinator we were discussing various things. Sheffield have decided to make us that trial or do studies a sort of a log book. This is a great idea because we do so many of these things it is hard to keep track of them., The log book will say which trial or study we are on or have been on, date begun and finished or still ongoing. Some of these studies last for years and can easily be forgotten as they just necessitate giving blood, lots and lots of it at certain hospital visits. This blood then is sent worldwide in the search for a cure for pulmonary hypertension. Because we are a rare group our blood and our acceptance to do these studies, to give this blood is so very important. If we had a "normal disease" there would be blood a plenty for studying but hey we are not, we are sooooo rare that we must give what we can so the researchers can do their work.
This particular study I am now talking about is one called The Pulmonary Hypertension Blood Biobank. It is a world leading research programme aimed at bringing about new treatments for the disease, The collection, held at University of Sheffield Medical School has collected samples from 400 patients taken at a diagnostic right heart catheter when PH is suspected. The biobank gathers extensive deep phenotype data to match each blood sample. This Biobank is run at the Pulmonary Vascular Disease Unit at the Royal Hallamshire - the UK's largest PH centre. The research is shared nationally and internationally in the drive to develop treatments that can reverse PH rather than solely fighting symptoms.
Because PH is such a rare and diverse disease we need to keep adding to the Biobank, by the patients taking part in this study at Sheffield they are helping people worldwide in the search for a cure, you should all be proud of yourselves.
Cohort Study Now many of us are on this and many more can take part in this very important study. Again all it takes is for you to give blood and fill in a questionnaire, how hard can it be. They are still looking for recruits in this very important study. This study is with the Royal Brompton and Harefield Hospital. Their aim is to recruit ALL patients in the UK with the rare form of Pulmonary Arterial Hypertension. The aim of the project is to discover new mutations for the disease and to determine what environments or genetic factors lead to poor outcome, and to understand the trigger that lead to disease in patients with mutations. For patients taking part in this study there are additional urine and blood samples as well as epidemiology questionnaires when attending for their routine appointment. Follow up is planned for up to 5 years or death.
I do these studies and really it is no effort on my part but the research material gathered is enormous and to know that it is seen worldwide means such a lot, it means that we are all taking part in the search for a cure. It means that we are going into battle against this so cruel disease. We need more in our army to fight this disease so please, if you are not on any of these studies try if you can to play your part, we need as many soldiers as we can get to beat this vicious opponent in this battle to win this particular war.
I have done other trials as I have blogged about on here before so I won't go into them, they are gone but the above are still ongoing so if you are not already participating please if you can give it a go.
Right - back to Ferinject
Well a very tiring study. To anyone still with me with this blog, and I don't blame anyone for leaving without reading it all if you do not have ph as this can be boring to you, it was really pretty good too.
I had been booked into the Rutland, a hotel just four minutes from the hospital. Having read the reviews, some amazing and some not so good I was not sure what to expect but in fact it is great. The beds were so comfy, the wet rooms enormous and the staff were so kind and caring. food very good. Cant fault this hotel and all they did for me.
I was dropped off at 9.30 at this hotel and breakfast was just finishing. However they were very obliging and made me a beautiful plate of food with smoked haddock and poached eggs, the eggs were not cooked with vinegar which many hotels do so they were great. I had left my bag with reception and then I went to the hospital. My first test was at 11 o clock but I wanted to visit with Laura Parker, Pat Nelson and Judith Holden.
Laura Parker, sadly this visit was not to be. Laura is very very poorly and she along with her family and hospital staff had made the decision for her to leave the hospital to be with her family. I know her son is only 7 and she needed to be with him and her husband. It was with a heavy heart I heard this news and I am sure that you all wish her a peaceful and loving time with her family and friends. Laura is so lovely and so young to be in this position, this disease is so unfair and it doesn't take into account what a good person you are, how old you are, how many people need you, it strikes indiscrimenately. I hope for Laura the peace that she deserves with all the people she loves and that love her surrounding her at this time.
I spent lots of time between tests with Pat Nelson and Judith Holden. It is always lovely to catch up with fellow ph patients we have "talked to" over time and to meet new ones for the first time too. Pat and I had already met so she was quick to bring me up to speed with the happenings on M2. Judith I had never met in person but it was lovely to meet with her and chat about the hickman line she is to have fitted in April. Having been there and done that I could explain some of the things to expect.
This started with all the normal tests we ph patients expect at every visit, bloods, e.c.g. blood pressure etc. All well so I was then allowed back to M2 for a short while and then onto MRI at the University MRI centre. I always go there, don't know why I don't go to the one for the NHS but I am pleased I go where I do. I know the people taking the MRI and I love that the machine and room is so lovely and tidy and newish. They had to put me a catheter in as this was an MRI done with contrast. 45 minutes later I emerged from the tunnel and was taken back up to O ward, the research ward. Onto the six minute walk test, some of us hate this test. If you do not have ph you will not understand but for those with ph it can seem like a huge battle. However it was a good day for me and this I managed very well. Off then for my sandwich, salad, no butter, no seasoning and to follow it a green banana! Oh well, no worries. Then I was told I must go back to my hotel and rest up for one to two hours to be ready for the bike test.
After a quick pit stop on M2 with Pat and Judith, a cuddle from Proff Ian Sabro (anyone can have a hug with Ian, he is such an unassuming guy yet so academically up there with the big boys}it was back to my hotel room which I saw for the first time. I was impressed with it and quickly got my feet raised on the bed and rested for a while.
Back to the hospital, a natter with Pat and Judith and of course the lovely nurses and it was time to go for my bike test. This one I was dreading. In I went to the lions den and Ian was waiting for me. First of all breathing tests were done and then the machine set up attached to the bike. The measures were taken from my walk test as to how hard the bike needed to be to ride. All the pads were once more put on my body and I was attached to many electrodes before I began. The horrible mask is put over your face and any oxygen in the mask was taken out for just a second to get the mask to fit tight, a weird sensation. Then on with the test. It took in all around 17 minutes and it started very easy and then began the climb up the hills, horrible, I tried as hard as I could to maintain my pressure on the pedals, I was biking at 64, no I am not sure what it all means either but was told to maintain this. Once I had reached my peak and the level on the front of the bike showed I was done, the levels were dropping down to 58 the bike test ended. Off came all the electrodes, my mask, which left deep marks on my face so tight did it have to fit I and was free to leave.
Back to the hotel for an early dinner as I had to rest, I was so shattered. My next test was a fasting blood to be taken at 7.00 in the morning.
Arrived at 7.00 and blood test done it was time to go back to the hotel for breakfast. I was informed that I must eat it at all costs before could ride the bike again. This time all was the same except that instead of a nice steady climb up the hill it jumped after three minutes immediately up to the peak of where I had ended it the day before. Gosh the shock of that sudden climb! Anyway all done, away for a natter with Pat and Judith and back to the hotel to collect my bag.
Up again on ward O and another catheter was placed in my arm, by this time it was hard to find anywhere that was not bruised as I had had so many bloods done and the catheter for the MRI, All done and then the wait for the ferinject to come up from pharmacy. Now here is the thing ...........
We must not know if we are having the real thing or the placebo but if I didn't get the real thing this time then next time I would, still not knowing which I was on. As I was sitting in the waiting room I saw a bag arrive from pharmacy in bubble wrap, to me it looked like blood, or iron, this was taken away by my nurse so I assume this was for me so in all honesty I believe I was given the real thing this time. I didn't let on what I had seen, after all it may not have been for me but it did go into the room I was to go in a few minutes later!
Onto the bed I went, blood pressures taken, vital signs etc and then I was to have my infusion. To do this I was blindfolded, yes blindfolded for a short while and the infusion was set up, my arm was bandaged around the lines and the curtain was closed so I could not see when the blindfold came off what was infusing! Twenty minutes later and it was done, blindfold back on whilst the lines were taken out of me, vital signs taken and hey ho away we go!.
One thing though, I have had ferritin before and the day following infusion when I pulled m eyelids down they were a bright red, not this tine though so maybe, maybe not.
This study will have just 60 participants worldwide. I think it is amazing that all studies and research are shared throughout the world.
Just before I left Mercy my trial co-ordinator gave me a big hug and said she had been concerned as there were so many tests and she worried it might prove too much. Now they may not sound a lot to a layman but trust me, with ph these tests do take it out of you! She then asked me if I would be included in a video and a paper that was being done to aid research. It looks at research and studies from the patients perspective, why do we do it, how are we treated etc. Of course my answer was a big yes so I do not know when it will be done but I will be a part of it.
Following a quick goodbye to Pat and Judith, who I feel will by now be firm friends it was time for my taxi home, oh the bliss of walking into my own home!
Next appointment to do it all again is 14th and 15th June.
So there you have it, another study underway, not too onerous but tiring nonetheless. Now I will try to get another hour of sleep in before Izzy arrives as school is closed but my daughter is working.
Take care all, sorry if it seems boring but people need to know these things!
Love to all
Carole xxxx
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