Stacie :- Could fill pages talking about "our" Stacie and yes I can say "our" because she endeared herself to thousands of people with her journey. First through her blog "Life is worth the Phight" and it continued after her transplant. Stacie was a lively bubbly girl so full of life and she was determined to live every minute.
She was born with a heart problem that later developed into deadly Pulmonary Hypertension. The only cure was a transplant and she was determined not give up the fight. Throughout my time of knowing her, which was eight years she never failed to inspire me or bring a smile to my face. Everyone that knew her could not fail to love her. She had a passion for pyjamas and all things Disney and magical. Though much of her life she was poorly she did not let that stop her "LIVING" life to the full..
We were all astounded to see just how well she did post transplant. She walked the stairs in record time and was jubilant on reaching the top without oxygen. All of us smiled and laughed with her. Television interviews held no worries for Stacie and she sailed through them telling everyone the importance of organ donation and bringing awareness of our hidden disease Pulmonary Hypertension. Everyone took her to their hearts and she was honoured to be given seats at a venue she had long wished to visit - WIMBLEDON! So one of her ambitions crossed off her list.
In time she met the love of her life Mark Watson. These two were meant to be together. He totally understood her trials as he himself was a member of the donation society. He had had a heart transplant many years previously. Stacie moved in with Mark and they bought their little fur baby as Stacie liked to say. - Marzuki. Because of their determination Stacie and Mark enjoyed holidays abroad. Another ambition of Stacie was fulfilled. They raised money to buy a specially adapted wheelchair that could cope with the rugged hills and enjoy the wind on her face and see the wonderful countryside surrounding her. They were so successful in their fund raising that they actually raised enough to buy another two that can be borrowed and used. by people in real need. Mark is a gem of a man. Their love shone through in the good times and the bad.
Together they searched and found the perfect house, Stacie was so excited to be moving in. Sadly it was not to be and she never got to live in it due to her illness but she had the hope, the thought of it and it kept her going. The moving in day was just before she lost her fight to live. Even through all of this, her body finally beginning to give in she still kept sending us messages of hope and encouragement.
Stacie had the most loving family. Her parents were supportive in all she did and she had her sisters too to encourage her all the way Her nephews and niece also played a huge part in her life and we often were shown pictures of them all and told what they were up to. In the latter few weeks it was more gentle things such as colouring, Stacie loved her colouring books and would often colour with her nephews too.
Stacie inspired many of us who suffer from the disease. She taught us to laugh through the hard times - that generally better ones would be coming. She showed us all how to live, laugh and love and not get bogged down with the negative, even with all the medicines we need to take just to keep us alive. She helped to give us strength and purpose with our new bodies that do not work as well as they did now we have ph. She was huge in bringing awareness of ph and just what we suffer from with this illness that does not show itself on our outer bodies, it is wrapped under our skin.
So Stacie who fought so hard has left us now and it will be a sorrier place here on facebook. Her zest for life shone and she showed so much joy and warmth in all that she did. Stacie had a fear of dying alone but that was never going to happen with her amazing family and her love Mark. She was wrapped firmly in their loving arms as she took her final breath and left us all.
Stacie thank you for the friendship, for the words of wisdom on my journey at the beginning when I was lost. For the laughter and the memories. You will live in my heart forever and I am sure in the hearts of the thousands of followers you have.
My thoughts go out to those closest to Stacie, to Mark, her amazing human as Stacie would say it. To her mom and dad who did a wonderful job of raising such an inspirational young lady and to her sisters and nephews and niece. You have so many wonderful memories of Stacie you will never walk alone. Warm love to all Fly high our darling ph sister and thank you for the memories. xxxxx
And onto inconsequential things after losing such a person
I have said of my desire to donate my body to medical science after my death. My hope was that they can learn something as how often do the medics get to really see inside the body of a ph person. We know all our internal organs suffer a great deal due to lack of oxygen and also the very toxic meds we take. Also as I had denervation, one of the very few worldwide I hoped this would teach them something. I have not had a chance to talk to my specialist yet as I see him next week but Gail, a ph sister asked the same question years ago to her medics.
She was told that they cannot say where the body goes after donation which I think is sad as our illness is so rare a teaching hospital would be the ideal place in my view. Also the distressing fact that up to two years later your family are then told the remains are yours to hold a funeral or do what you wish is a bit of a bummer. The pain of the death of a loved one would hit hard again after getting a chance to get over it in two years. However not spoken to my guy yet so will see his reaction. This does not mean I would NOT donate - any body is great for anyone to learn - happy to be used as a learning tool but if it is that it cannot go to a hospital dealing with ph then it is still a bit of a downer. Will update in a few days time.
Footsteps in the snow
A couple of weeks ago we woke to snow, as indeed did most of the country. Imagine our horror then on opening our curtains a couple of days later to see footsteps in the snow going down into our garden. The footsteps were very clear. Somebody had walked down our steps and into the garden and back again. We had not had a ring on the doorbell and our security camera had not picked up anything in the night. We did note that we had one blacked out vision on the motion detector so were very concerned. How had somebody managed to get to our cameras without being seen, let alone cover them up. We have covert cameras so we were quite worried.
We looked back on all the motions that had been going on in the night and other than this black one all was well. Were we being checked out for robbery or worse. It wasn't until we came to the afternoon ones that we saw what had happened. Our builder had come back to do a small job and needed to go down the steps. Clearly he did not bother to ring bell which would have alerted us and just walked blithely down, carried out his task and walked back up again. He will never know the consternation we had but we were so relieved to see what really happened.
Bedroom drama!
For some time now Colin had woken up to find blood on his side of the sheets. He had a scratch down his leg and we had not got a clue where it was from but assumed that was all it was. Imagine our horror this morning when he pushed his hand down the sheet to discover something hard and sharp sticking out of the mattress. Now we change our bed every week, in fact last week due to my leg injury we changed it quite a few times without seeing anything amiss. As you can see from the picture this piece of metal was sticking up and out of the bedding. So here was the culprit. My horror was more for Izzy as she often sleeps in with me kicking her granddad out of the bed. She plays games in bed such as hide and seek. Imagine if that had gone into her eye. I rang Barker and Stonehouse who said it was clearly an issue ( well of course it is! ) and she would give me the number to ring to complain. I did just that but was told that nothing could be done until next week sometime when hopefully they would send somebody out to inspect the mattress. In the meantime could we tape it up or something! fortunately we have another bed but woe betide those that do not. Who wants to sleep on a mattress such as this.
Never in all my years of buying mattresses have I seen this. Many years ago as a single mom our mattresses were not of the quality of this one and I never saw such an issue. My hope is that this is not a manufacturing error that is in lots of their mattresses and somebody does not end up with more than a scratched and bloody leg.
My leg
After all the issues with my leg you can see how it is doing. Never again will I blithely close the car door without checking my poor leg is out of the way Fortunately I was wearing trousers which stopped all the dirt from the bottom of the car door from entering the wound. Colin was a great nurse, always ensuring his hands were washed and hand gel applied before touching it. The steri wipes I had left over from when I had my hickman line were very valuable to keep the wound clean and he was always changing the dressings as it kept bleeding. Anyway it is on the mend now and thank you for all your well wishes. My biggest concern as I said was sepsis due to our low immune system but I was very fortunately spared that.
Izzy
As she has progressed so well with swimming she now needs to use the longer lanes one the other side of the pool. I believe this is so that she can really practice her strokes, which are very good now and move forward with speed etc. Sadly the day will be changing and we are just not just sure if we can fit her schedule in around other things. One option is for a Saturday morning but that is family time and we do not feel we can commit weekly to that. Another day is Thursday evening but as she has an outside school activity already on this day again we are not sure of this. Colin really wanted her to be taught to swim so that we felt safe for her and that she can do that really well. However it does seem a shame that at this stage, when she clearly shows a lot of promise that she now leaves her lesson behind.
Izzy herself is sad if they do no continue as she loves her time in the pool beforehand with grandad and as she said herself " I am better than all in the class now just when I have to leave". It is a true statement and she clearly is better than the rest. So we are in limbo trying to hopefully see her swimming teacher this week and see if a solution can be sorted out for her. We shall see.
Holiday
Yes we certainly need one and are planning to go away at some stage soon. It depends when Lucy can move in here with her husband and this time two friends who want to visit with them. All will be sorted soon so we can pack up our motor home and away we go. Friends are hopefully joining us for three days of this holiday as they want a mini break. We are going to go to my beloved Whitby amongst other places and it will be sad not to be able to visit with my godmother who recently died.
The walking is lovely to Sandsend Bay and there is a great pub that serves superb food at the end of the walk which makes us more determined than ever to complete it. After our friends leave we will move around to various places along that coastline, maybe visiting haunts we have not seen for many years, reliving my childhood as it is here and the Lake District where all our holidays were spent, memories, ahhh. So Whitby, Bridlington, Filey and York here we come.
Kathryn Jenkins
Now this singer has my husband enthralled, he just loves her singing and goes into raptures when he hears her. She is currently touring and we have been fortunate to get seats to watch her in May. I am looking forward to having a night away, a really lovely dinner and sitting and listening to wonderful music and afterwards going back to a nice cosy hotel for the night. Do any of you like her voice?
I am determined that this year now the house is completed we shall get on and do enjoyable things. After saying that the garden is underway with Colin spending lots of time and energy digging. I want him to build me a raised bed so I can grow our own veg and also we will have some fruit trees and bushes. I intend to begin tomorrow planting seed potatoes in buckets as my dad did. I love how easy it is and how great it felt to be able to ferret about and get enough potatoes for tea and leave the rest to continue growing. I hope I have the success my dad did.
So I come to the end of this very sad blog. With warmest love .
Carole xxx
