When I was first diagnosed in Spain with pah over six years ago to be honest I didn't really believe the diagnosis. Yes I I knew I couldn't breathe, couldn't walk, couldn't dress or shower myself and my heart hurt so bad but human nature being what it is I still didn't quite take it in that I was dying, even despite the fact I could not even be promised six weeks to live. I was sure that once I was admitted to the Royal Hallamshire in Sheffield and they carried out their tests it would prove to be something different, something that could be cured with an operation on my heart. As this condition is so rare how could I truly believe that I was one of this breed.
If I am honest it was because of this belief that whilst in my local hospital waiting to be transferred to Sheffield that I could laugh and joke with my family and friends. I just KNEW that I would surprise them, that my diagnosis wouldn't stand firm, it would be proved to be wrong. Maybe it would be an undiagnosed hole in my heart, or a blocked artery, something that could be rectified. Alas it wasn't to be as test after test proved the first diagnosis, pulmary arterial hypertension at stage 4, the very worst it could possible be. So it was that I was to face the biggest battle of my life, to live, even whilst this disease continued on its progressive way.
I have always been a fighter, proving this as at the age of 4 being badly burned with third degree burns on a large part of my body. My parents were told it was unlikely I would survive but 17 skin grafts later and a huge fight to live and I made it, It was with this same wish to live, this same stubbornness that I faced pah. I am still facing this fight today. Despite my levels rising, my breathing becoming harder and harder I will not give in. Nobody but Colin and my ph brothers and sisters and medical staff know how hard our days can be. As our condition deteriorates we learn to adjust. It isn't easy but we fight to survive to live, to trial new drugs, to be around for the one that cures.
With all of the above going on in many of our lives and in view of the fact we have just had the Olympics I think that we should all consider ourselves gold medallists. We certainly know what it is to work our bodies to the very limit under duress. Without even a day off for us we struggle against such huge odds so to all my ph family yes, you certainly deserve a medal. I salute each and every one of you fighting this disease. I award you the GOLD.
Denise is a blogger too and wrote the piece below, I just found it and I love it. Please open and read it. It is entitled I won't apologise for having fun while chronically ill.
How heartbreaking it is to continue to read the news and see more and more of the horror that has fallen on Italy. With the earthquake taking so many lives and destroying this small village forever we see how fragile life is, how easily taken. We read of heroic actions of children who died by throwing themselves on top of their younger siblings, saving the lives of the young whist the quake took their own lives. We read of the refugees helping to pull people from the rubble. There are stories of heroism among all of this but the fact remains, so many deaths. Nature can be cruel. We need to live as well as we can whilst we can. Stories such as this one surely bring this message to the fore.
My heart goes out to all of Italy as this small village and the horrors will have an impact on the country as a whole. Such a terribly sad time.
Stacie continues to fight the rejection of her new heart and lungs The heart is doing well but the lungs sadly are not. In a quirky twist of fate she received a letter from the donors husband last week . She rightly does not reveal all that he said but she does say that this woman sounded to be a brilliant lady and her husband was pleased that she helped Stacie to live. Now Stacie feels she has let down her donor and her donors family as her body is rejecting the donated lungs. Of course this is madness, but she feels such guilt. If anyone on here reading this knows Stacie please please can you all try to reassure her not to worry in the least about this, she must not stress over it. When she gets some new donated lungs she will still retain the heart of THIS donor.
Sadly rejection of new vital organs is too common which is why there are so many tests to go through before this can happen, so many physiological talks to be done too. It must be a hard road as indeed even when the transplant is given there are no guarantees how long the donated organs will last. I look forward to the day when medical science has come so far on that for all diseases stem cells, made in a lab, is the answer and once they are given our bodies regenerate the bad things. This is already here for some illnesses and moving ever nearer for others.
Do you remember when you were young, well some of you will still be too young to remember but the comics that showed moving stairways etc. We never believed it would happen but so much of what I read about is now in place. So yes, this too will come, diseases will be eradicated. Oh brave new world indeed!
A day in Whitby
On Tuesday my son is driving me to Whitby to visit my godmother. This will be the first time EVER he has driven me further than to and from the supermarket. Both he and his girl then intend to climb the steps to the Abbey, of which there are many and I just know whilst they are doing this they will be looking for the pokeman creatures. I wonder if the ones they will find in the graveyard will be Dracula ones!
I love Whitby, a place we have visited many many times over the years. An unspoilt fishing town with its uneven streets with the original sets of stones and the tiny little shops, many of then selling and making the jewellery from the jet found here. I look forward to this time spent with my family. I will not be climbing any steps though!. I shall spend my time of the sofa of my godmother Enid and playing catch up with her news.
The day is dawning, I can see the sun coming up over the hills and the birds are crying out with the early morning chorus. I think all this is telling me it is time to go. I shall take my medicines now and let you all get on with your day. I hope it is a good one for each and every one of you.
Next week I shall share some exciting news (well for us anyway!) Just waiting for final papers to come through. I will tell you though that it involves a lot of digging!
Once again thank you all so much for any comments, shares or for clicking like.
Warm love to you all.