Natalie Cole
How very sad to read of the death of this beautiful and accomplished lady, We are now told that she died of the condition I suffer from, idiopathic pulmonary arterial hypertension, One question I would ask though is why ipah, Idiopathic means just that, it means they can see no reason for it. Sadly Natalie had issues with drug abuse and this led to kidney failure for which I believe she received a donated one, This in turn led her to have ph. Whilst yes she went on to have heart failure as one can do with ph it surely it can't be called ipah. We haven't taken drugs which have caused our bodies to suffer this terrible condition. There are five different forms of ph, ipah being the first one, I don't see how Natalie could have ipah. I believe she had another form of ph.
Other forms of ph are due to many reasons. Sometimes blood clots in the lungs, sometimes copd from smoking, sometimes from scleroderma, so many reasons. For some it may be due to taking diet medications. All so sad when the result is ph but ipah means no reason so I wish they got the story right. (Of course this precludes the kidney damage due to being caused by undiagnosed ipah? Our bodies do get damaged due to lack of oxygen. Just trying to cover all bases here as you can see.
It is also a pity that she didn't become a spokesperson for the ph society, Somebody with such a high profile could have done much awareness of ph and so raised people's understanding of it. I can understand her though not speaking up, we do not want to be defined by our illness but be defined who we really are, though masked by ph. There are many of us not famous trying so hard to raise this awareness in people, she could have done it so easily. Maybe a simple change of lipstick to blue for a day and telling the to crew just why she was doing this would have shown to many what ph means. Anyway she had her own reasons for not raising awareness and we will never know why. So sad to lose this incredibly talented woman, her dad would have been so proud of all she achieved in her life.
Gosh Davie Bowie!
How awful this news was this morning, The music industry has lost a great guy who made music to the end. I grew up in the era of David Bowie being right out front there in the world of music. How many of us didn't sing along to his songs. Such a shame and way too early to leave this world. My condolences go to his family and his friends and indeed anyone who liked and admired this guy for his music. I loved how he kept re-inventing himself, he was certainly never boring.
Wow, such power and such destruction.
Please watch the above video Link. This is the valley where I live, all my family live here too. So much destruction by water. Bridges that have stood for four hundred years are gone, houses ruined, barges thrown so far they are now in the woods. So much horror and yet as you can see so much beauty in these valleys. I am so proud to see the spirit of the communities all pulling together and working hard to try to get some semblance of normality back in all their lives. There is much work to be done. Houses need to be repaired and decorated. The bridges need to be put back exactly as they were as they are listed. All this work will take over a year. In the meantime everyone has to go a longer way around to get from A to B. I haven't heard any complaints as people go about helping each other, just a great sense of companionship. I am so proud of my Yorkshire brothers and sisters showing their true grit. There is strength in numbers and we have surely shown this over the last few weeks,
Where am I headed next
Most of us with ph need to change medications as our bodies get used to them and so stop working efficiently. I do wonder where I will go from here. I began this journey on the Hickman line for twelve months, I then went onto the oral medication I take now, 300mgs sildenifil, or Viagra whichever name you call it. Along with this I take 10mgs ambrisenten plus the water tablets and warfarin etc.
For three months on top of these meds I also took inhaled iloprost 9 times a day. This treatment took about twenty minutes each time as we had to wash the filter each and every time it was used. Doing this nine times a day certainly takes it out of you, there was never a let up whilst on this regime. I remember having to take it whilst on airplanes too, something that had the people round and about ogling at this going on.
I took this medicine as a third drug and we are only allowed three drugs if we are waiting for, or hoping to get on the transplant list, I was rejected on the transplant list but truly believe I don't need one yet anyway, Due to the laws that govern our drug regime I was only allowed this drug for three months, For me I am not sure it did me much good anyway!
I have never complained about any drug regime I have been on, always thankful that my A Team are working so hard to keep me stable. Now though it appears one of my meds is not working hence the rise in my pressures. I am so looking forward to seeing which medication I shall take next, once the trial drug is completely out of my system of course. It will be very interesting to see and it makes me thankful we have come so far that there are now options available to us.
Talking through the long nights
I am always awake in the night and this is where I generally catch up on admin etc. It was so lovely then that last night I was fortunate enough to have long conversations with two ph friends. Lucinda Duxbury-Smith lives in Kent and was awake so we private messaged a few times, so lovely to speak to her. I also spoke to Jane Campbell who lives in America for quite a while. When we had finished our conversations I wondered what my ancestors would have thought if they could see me now, talking to people all over the world by just a click of a few buttons. So grateful that we can do this.
Being LIVID
Our table and chairs which we purchased ten weeks ago now were due to be delivered. Due to a hospital appointment I asked for next delivery date which was Monday 18th, this was agreed. On ringing to pay balance we were told they have given our table to somebody else now as we didn't want the Thursday delivery slot and they have NO IDEA when the new one will arrive, though we are informed we can have the six chairs. Initially we could have the table but no chairs. When we asked them to speak to their suppliers to see when the table would be ready they told us they have no phone number, just an e mail address! Rubbish. My husband was in business for many years and knew his suppliers numbers very well. I just cant believe that a company so well known have no access to their suppliers phone number. They offered us £130 good will gesture but I said we don't want money, we need a table and chairs NOW as promised, If no joy in the next few hours we shall cancel, though this means we go back to waiting weeks at another company. If this needs to happen we shall purchase something cheap to make do and then donate it to charity, I am soooo cross I can't put it into words.
Snow or no snow Whitby visit
We are heading off over the North Yorkshire moors to Whitby next Sunday for a couple of days. My god parents have lived here most of their lives but sadly my godfather died a few months ago. I want to go and visit my godmother and we have booked to stay in a hotel for a couple of nights. If you have never been to Whitby I can highly recommend it. It is an unspoilt seaside town, none of the brash coin operated amusements here except one. Well known as a fishing port it is so nice to be able to walk onto the harbour early morning and see all the fish caught. Locals buy their fish nice and fresh daily. Whitby kippers are well known throughout England, a super treat.
Bram Stoker the author of Dracula lived here as well as our very own Captain James Cook who lived here whilst not at sea. The town is famous for its 199 steps at the East Cliff leading to the ruined abbey, it's most prominent landmark.
I love to see the swing bridge open to allow the boats to go either go out to sea or return. The whalebone at the top of the cliffs is another sight to see. I love the museums of Whitby. I always find something different to see each time I go.
We are so looking forward to this though unfortunately I cannot take my mobility scooter, the hills are very steep and if we have snow then there will be no point. so this does mean the car will come into play for most of the time, Also if it snows it is not the easiest place to get to. The moors we need to cross get really bad with ice and snow and I do not wish to be caught up in this weather sitting in the car whilst waiting for the snow ploughs. I know the weather is supposed to change from rain to snow but please let it hold off for a while yet.
Shall get this blog off now. I will let you know how my next visit on Wednesday goes re trial meds.
Everyone have a great day and so lovely to be able to reach out to my family and friends worldwide.
Much love to you all and thanks for reading and for sharing. Carole xxx
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