I have long considered myself to be a strong independent person. My life has not always been easy and I can’t say it has always been happy but i did consider myself to be in a good place right now a happily married woman with kids and grandchildren. Like everyone there have been pitfalls to climb out of, some of my own making and some through others but I have always seemed to cope with what was thrown at me. One of my sayings was “down but not out” when going through bad stages in life. Something happened tonight that knocked the stuffing clean out of me, kicked my legs from under me and left me a pure shrivelling wreck - a person with no voice to answer back or energy to deal with my life threatening predicament.
I am in hospital right now due to catching a cold which quickly turned into a cough. Yes to somebody immunosuppressed or pulmonary arterial hypertension that is all it took a simple cold for me to face up to the brutal reality that I am not invincible after all. That I am in fact nothing more than a piece of blotting paper laying on the ground in the rain. All it takes is for the blotting paper to become too wet before it becomes nothing more than a piece of mush, unable to be used at all. Try and pick up the paper and it reduces it even further to just a squelchy mess and here is where I found myself in the early hours of this morning.
I was admitted to my local hospital due to low oxygen levels which had hit me like a sledge hammer. Only two days before I had been to my specialist centre and had almost the full works, bloods, 6 minute walk test, ecg, echo and the list goes on. We were all so pleased to see how well I was doing. These were my check ups for a trial am for my illness so were very thorough For those without any knowledge of pulmonary hypertension please read up on it not forgetting the PULMONARY hypertension which turns it into another ball game than the hypertension many people may have. I have pulmonary ARTERIAL hypertension . So feeling secure for a while in the knowledge that this heart and lungs so badly damaged when first diagnosed it was deemed ready for the knackers yard had - due to the wonders of science, researchers, doctors, nurses and yes you name it the list goes on of people the who have kept me safe - led me to a safe haven for yet another length of time.
Moving on then to my admission to my local hospital reluctantly as I did not want to use up the precious time of our overworked NHS staff and resources I had to admit defeat. Being plugged into an oxygen machine for the first time as an absolute must became something very scary indeed. I fly with oxygen always but never needed it throughout my daily life. I have been checked out for this but fortunately was deemed too well for it. My experience now of being unable to move from the bed unplugged without canisters and nose plugs or face masks has given me yet a greater understanding of how it is to live for those burdened in this way. There is a way for those who do not have this condition to see how it is to live with the narrowing of lungs in daily life. Put a straw in your mouth and a peg on your nose and then try to go about your business. Yes the air you breathe will be sucked into your lungs through the straw, let me tell you it is tough, very tough but that is everyday life for lots with this condition. Please let’s see this condition for what it is, life limiting, life threatening and even though thanks to research and new meds our status can often now be termed life shortening instead of terminal ( though indeed it can be terminal too) we do lead a more limiting life than most. Yes there are a lot of words with limiting in that sentence but that is the fact, limiting life,
Now I am rambling. So here I am in my hospital bed and liaising with my family at home and my wonderful PHA UK association team as my hubby of 24 years and our ph media is putting together a press release and a JUST GIVING page for PH research You will read more about Colin’s story on Facebook and media so this is not about his challenge but to ask you though to please if you can and do donate do not leave it there. Equally as important as donations which go directly to our society I am asking you to share if you will any media about this condition to raise vital awareness about this very rare unknown condition, It just may save the life of yourself or a loved one someday. It can be just one of the articles read and almost forgotten that sits at the back of your mind that may resurface and jog a memory and move things on to a quicker diagnosis and better outcome for others.
Now back to my story, Despite lots of meds and oxygen plus changes in antibiotics I am still plugged in 24/7 to this life saving oxygen. Just to go to the loo only feet from my bed means I have to unplug from the wall, plug into a canister which goes with me to the loo and back, unplug said canister, plug back into the wall and stuff mask on face and lay down to recover. My heart goes out each and every time to those of my friends who do this 24 hours a day whether through ph or transplant, Life is so tough.
My experience this morning was one I never wish to repeat. I had thought maybe life was getting better. Despite one doctor feeling I may have a blood clot myself and another doctor thought not which has proven to be true, my predicament has proven to be NOT a clot but the after affects of a cold I caught which quickly turned into a chest infection limiting even more the power I had in my lungs. So I was feeling on the up, yes still poorly for sure but more upbeat about it, less scared. A good friend had visited and helped me to shower in a calm and peaceful manner ( first shower in a week as too poorly to cope before ) and rubbed moisturiser on my poor cracked and broken skin due to the systemic scleroderma. Life had to be getting better didn’t it, I had a couple of nose bleeds so oxygen pressures were taken down a notch and I was still managing as long as I was plugged in so surely things were on the up.
Fast forward then to 5 am this morning. I woke with my whole body screaming out for breath but none would come, Never do I recall fearing death was so close. Not only was it snapping at my heels but it’s teeth were snarling into my face as it tried to take me out from this world and into its dark and dismal own. I was on the road to hell. I could feel nothing but terror when I realised I had lost my oxygen, I was no longer attached to this life saving pump which had been keeping me alive. I was on my own and it showed me how absolutely necessary this pump was to me at this time. My body was screaming out for air but I had no strength to shout out for help, no strength to scramble to find my call button, no strength to do anything. My desperate gargles because that is all they were and feeble gasps bought two nurses running. Fortunately my bed is the closest it could be to their station and they quickly took charge. One found the oxygen and attached me again whilst the other pumped up the flow to get my pressures under control. The enormity of what could have happened and the realisation of how fragile this life is hit me once again so giving me the heading for this blog about blotting paper. I am not so tough as I believed I was and like blotting paper which has its uses that can be gone in an instant if faced with a deluge of water so too could I have been without the oxygen and the quick thinking actions of the wonderful nurses who tore into action and saved the day.
After recovering from being a blubbering, shaking quivering wreck I felt the need to write this blog and hope that there are some who will when they find the Just Giving page please donate. ALL MONIES go directly to the cause, Colin has funded this whole journey himself and was happy to do so in the hopes of raising of course money but also awareness of this shocking disease. The link to the page is below and you will be helping such a wonderful charity. By the way if you are a taxpayer there is a button to click which gives even more to the cause through the government. You will be able to see each day Colin’s journey on Le Jog ( Lands End to John o Groats ) unaided, no support, all under his own steam, a one man band indeed. For those on twitter etc if you would be so kind as to share as and when this story to whoever you have my heartfelt thanks, we need to share it far and wide. It could be your loved one one day dealing with such things. Let’s work as a whole and do all we can to spread awareness for diseases that are so rare they are little understood, All it takes is a click of the share button but it would mean so much to the cause of awareness of pulmonary hypertension.
So another day looms for me attached to my pumps, right now I am also attached to my transfusion of antibiotics The doctors and nurses are calmly going about their business taking care of us all in such a wonderful way and thanks to their quick action I am able to write this blog. Yes the blotting paper is drying out thanks to them and though I will never ever forget this experience and hope it is one I never endure again it has given me a greater understanding of lots of my ph friends worldwide.
So as you go about your day I wish you a peaceful one my friends, I wish for you calm and good health.
The link to the page is below and I leave it to you if you feel you can donate but if you do not then at least by reading this a tiny seed has been planted that may help you to one day bring about the much needed awareness of such a worthy cause.
Warm love to each and every one of you from this partially dried out blotting paper.
The link - https://bit.ly/LeJogForPHAUK
Carole
