After going for a walk with my husband I noticed that my feet did not want to climb the steps, they kept hitting the edges, it was just too hard to pull them up all the way to the top. I began to find it difficult to walk up the incline to our house. I felt dizzy and sick and my legs were heavy.
One day after walking through the woods it just got too hard walk the the incline back to my house. Time for specialist advice. I was fortunate enough to meet with a doctor who had heard of, though not seen, PH. He advised my husband to take me home, back to the UK, we were living in Spain at that time. He said I had maybe six weeks to live!!!!
The despair hit me like a brick wall, and, of course, we Googled PH. Not a good plan at all. On the journey back home I cried because I could not dress myself!, looking back I can't believe the despair and hopelessness that hit me.
I was fortunate enough to be met at the Royal Hallamshire by my A Team, my angels. I was told not to get out of bed, they feared a heart attack as the right side of my heart was five times the norm. I was told I had many tests to get through but would be pushed to them all. I must not walk! I was immediately given a cannula in my hand and attached to a drip pumping iloprost into my body at two minute intervals. Then the tears began, too many to mention but I remember the professor sitting at the side of my bed and telling me I would need a Hickman line inserted into my body that would enable me to get out of bed and carry on with life as best I could.
Line inserted I went home after five weeks to begin a new phase of my life. It was hard, the things I could do before I could not now do. My husband took over the roll of housekeeper, he also took over the roll of nurse. He changed my Hickman pump daily and made sure it was kept clean. My fingers didn't seem to want to work any more and my brain had turned to mush! I remember one day thinking I would vac the house before my husband came back from the shops and the despair I felt when I realized I could not even push the vac around. Then came a year of adjustment and yes, I will admit of self pity. Why me, what life did I now have! It was hard, so hard but after a year I was given more tests after one of my six weekly visits to my hospital and how can I ever forget the jubilation that I was to see that day.
My bed was crowded around with all my PH team. Beams were to be seen by all. My specialist doctor was all but jumping with excitement when I was told that the iloprost had worked! My heart was how the size of a normal persons and my right heart catheter showed it was now 38! Now a new journey began, one without the Hickman line and one with oral medicines, ambrisenten and sildenifil.
It took three months for the change over to be completed and for my new life to begin. Slowly my body adjusted to the new medication and slowly I began to climb out of the pit of despair I had been in. Small steps, baby steps at first. I was scared but began a regime of walking further each day, always with someone at my side as the fear of dizziness of collapsing was with me but I persevered, gradually I began to feel stronger, was able to do more, was able to help in the house, able to shop on my own, able to be my own person again.
Recently I walked my personal best on my six minute walk test of 720 metres. Some days I can walk eight miles, though in fairness five is the norm, some days I can't do much, hence the roller coaster ride we are on. At last I had joined the people who were responding, who were living with ph and not letting it beat them.
I remember at the beginning of this PH journey looking out of the window and seeing people walking, just walking and giving it no thought. How envious I was of them and thought it would never again be me, now though it is. I am not saying I don't get bad days, we all do but the good far outweigh the bad. My mobility scooter has not been used very much in the last two years, it sits in the garage and sometimes, though rarely now it gets used. Most times my legs do the walking!
My advice would be to push yourself a little more each day. Don't set out to do a marathon, take small steps and find what makes you comfortable. Listen to your body, if it says slow down then do it, if it says " I can do a little more" then do a little more.
Remember PH medications are changing all the time, research is going strong. There will be a cure for this and I believe it will be in my lifetime. I trial anything I am asked to trial. I want to be part of the team that finds this cure and beats it!
Stay strong in heart and spirit. When the bad days hit remember it's a roller coaster, the good days will follow. Remember we are a PH family and we have friends here who can relate to everything we are going through, my journey began in a wheelchair but I have fought to use my body again. Fight, fight , fight and keep a good spirit within you, believe in yourself. Most of all remember you are not alone, there are people here who KNOW exactly how you are feeling.
You walk with friends. Xxxxxx
Thank you for your story.
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