HOW MANY TIMES WILL WE SADLY NEED TO SHOW THIS CANDLE AS WE LOSE YET ANOTHER TO PH.
PH FRIENDS. Let us play our part in the fight to be diagnosed.
Recently we attended our mini conference in Sheffield. Since Covid we have not had a get together like this so how wonderful it was to see old friends and new.
Our talks were varied and I found them very interesting indeed. I certainly felt I could push myself more in the respect of exercise whilst not even leaving my home. It’s not difficult and worth the small amount of effort it takes. We had a lovely lady who had flown over from Ireland to talk to us and to show us graphs of the benefits that just a small amount of effort made so definitely on my list of to do things each and every day.
For me there were two stand out main talks - one of those being that we discussed how long we were all waiting for diagnosis, the longer of which makes for poorer outcomes for us and everyone that was talked to agreed the frustration of waiting whilst attending doctor appointments after doctor appointments and being told the same thing.. It’s in our heads, nothing wrong with us or you have asthma ( even though the sprays NEVER MADE A BIT OF DIFFERENCE). You are lazy, get out and do more. The list is endless as my ph family all know, Oh the sheer frustration of banging our heads against a wall trying to get someone to LISTEN - JUST LISTEN to us when nothing you give to us works and our hearts get even more damaged and our lungs continue to struggle to take in the air we need to live. So how do we get it across to those very people we trust to help us to get a diagnosis and the medicines we desperately need quickly, before more damage is done and before more people die without even getting the diagnosis that could have extended their life. I have often wondered just how many people were dismissed in this way and died and I wonder what the postmortem results showed.
Like lots of you I have made friends with my ph family only to lose them to this illness. The sense of pain seeing them suffer is overwhelming when now we KNOW that most of us could have better outcomes if the doctors that we saw at our GP surgeries had taken us seriously and asked for more testing than they themselves were not capable of carrying out.
Our lovely media team have worked hard in respect of this, working with specialists and doctors they have made videos of patients talking about their own personal journeys. As a ph patient it was hard to watch, these are real people and I know personally the heartbreak of the journey to getting diagnosed. These are the very people, myself included talking to doctors begging for help. In fact when we constantly get dismissed we end up almost screaming for help with none coming , making us feel we must be going mad if the very people we trust with our health just dismisses us like this. I have had the privilege of seeing these videos and I must confess both me and Colin cried. It took us back to the horrors of the years before diagnosis, knowing something was happening yet being told it was asthma,
My belief is that these videos of US ( meaning ALL my ph family worldwide as we speak for all ) will be the voices that carries this message to doctors and specialists and is to be shown to physicians and researchers at a conference in London shortly and then at a round table event where it is to be shown to industry and healthcare professionals - being specifically held to show and discuss the issues we all have had and those still to be diagnosed by late diagnosis next month. Eventually it will be on YouTube and one can only hope the message spreads to all those in the medical world so more doctors can see we have real and very dangerous medical issues and move us along to professionals we need in order to get a better outcome,
I myself was blessed to be diagnosed whilst abroad by a specialist in lung conditions who had never seen a patient with this very rare condition but had read about it. He quickly diagnosed me and before I knew it I was on a ward in my home town whilst they liaised with Sheffield who quickly admitted me and then I found my second home, Hallamshire is where I am treated and where I KNOW I am listened to because this is their speciality. I can only hope and pray others that were like me frustrated with how they felt but never being listened to find the answers and the treatment they so desperately need . Let us spread the word far and wide PULMONARY HYPERTENSION IS REAL AND LIFE SHORTENING SO PLEASE LISTEN.
These videos will be shown on November 3rd where we all do our best to raise awareness about this rare disease, When you watch them I hope you too see how hard our teams work to raise awareness and let’s hope that our voices are heard far and wide.
Research Video on the importance of trialling
My health seems to be doing ok right regarding my ph now so I will take that. I still put it down to the denervation I had as a trial and am so blessed to have been offered the chance to have it done. Research plays such a huge part in my life and I am always grateful to be given an opportunity to take part in any trial and study. Even as I write this I am part of three studies which means that I have monitors working 24/7 and any issues can be dealt with quickly and efficiently.
Each and every time I take any medication I give a silent thank you to the people that trialled the meds I am taking helping to extend my life and live to see family and friends that I love. Some of the ones that trialled drugs for our condition are long gone from this earth but still I am getting the benefits of those agreeing to take part in the trials and studies, My heart gets overwhelmed at the love I have for them and though I never met them they put themselves out for us all and trialled I trial and whilst I know all trials do not come to fruition maybe in the future others will be feeling exactly as I do whilst taking the meds that keep them alive - giving thanks to those that trialled their medicines,
At our conference we had a talk about research from a lovely doctor from Cambridge and the importance of trialling and that we needed more patients willing to trial, Now it is not mandatory to trial but there are many benefits to yourself as well as to the future of people with ph. To this end one of the videos made to be shown to the health professionals etc. is about trialling. May I ask that when you see this video you take a moment or two to consider if you could trial or take part in studies, I can promise you that first and foremost your health will always come first whilst doing research and who knows - you may become the first person to be cured of this disease by trialling the drug that not only extends our life but cures us - imagine that !!! Somebody has to be the one, could it be you.
If you feel you can trial then please do, all it takes is a word to your specialist doctor and he/she will see if there is one suitable for you. Not everyone will be suitable to take part in trials but very very many of you will. Please think about playing your part in research the next time you take your medication, think about what went into getting that one to you, the part you can play in research and hopefully getting more meds and yes THE CURE FOR PH, It can’t be done without real people suffering from ph. The circle needed to reach that stage would have a vital piece missing and these are the ones that trial meds for ph so the circle could not close and the cure or the meds needed to slow this down not be reached. IT IS VITAL WE DO ALL WE CAN TO FIND A CURE OR SLOW DOWN THIS DISEASE. Please please we need more people involved in these trials. Can you play a part in this, I do hope so.
Laughter after the tears.
Our families know we are not having funerals ( preferring the ones where our bodies just get taken away and burnt without the cars and churches and the eulogies etc ) but whilst all sharing a meal on Saturday night all the daft things I have done throughout my life made for good joking and laughter around the table. I said to my daughter “ see all these things you have thought I was mad to do or silly etc will be all the things you will remember me by at my Celebration of Life party. It was funny to remember where I was and what I was doing at the time to create such funny memories for my family. Not for a while yet though hopefully.
My daughter and her husband tried a drop of my home grown plum gin. They declared it gorgeous but very strong. I did warn them so I think they will be taking something with it rather than neat but nice to know our own plums created such a flavour.
An accolade at last
Yes I have an accolade. Whilst this won’t mean anything to you, for me it is the best as Izzy looking round the dinner table pointed out to each and everyone their place in cooking. I was declared the very best chef which made me smile and made my heart warm. She isn’t too friendly with me right now, we have had a few weeks of tiffs. I believe I am correct and she believes she is. However she thawed just to say I was the best chef. Tonight I cooked for her and her friend before they went to football practice. Whilst she was happy to take the food and said thank you she thinks I am weird for wanting her home straight from school. Sorry Izzy if I care too much but these days a young 13 year old is not safe to be trolling the streets. Wait until you have children of your own. Anyway your mom says it too so it’s not only me. Colin of course is more laid back so he is good grandad and I am weird grandma. I will take that if it keeps you a bit safer for a while longer. One of my friends granddaughters was trafficked at Izzy’s age and became part of the group of girls being used by those in Rotherham. Thankfully she came through it but not every story has an happy ending. Life was so much easier when she was younger. She was so compliant but she has done what we all hope children get a chance to do, grow up. We can’t keep them young more is the pity.
So quite an emotional ride for me these last few weeks, Still I am here to tell the tale and so give thanks once more to my A Team at the Royal Hallamshire, Ward M2. You all know I love you. I will end this now and try to get it out today before November 3rd which is our PH Awareness Day.
In the meantime I send warm love to each of you and thank you for reading this.
Carole,xxxx
No comments:
Post a Comment