Opening my Facebook page this morning I saw the blog below shared by our Lyz Clements It is written by Rob Scott, no I never heard of him either but boy, what an inspirational post. A post that might, just might for those of you not on the donor list move you to getting yourself on it.
Rob is speaking from the heart after a liver transplant. I guess that what he has written is how most people would feel post transplant and would like to express their eternal gratitude for the gift of life to the family of the one who so unselfishly signed the donation register and the family that let it go ahead.. All Rob knows is the age of the young man that died and helped others to live, he was just 21.
As most of you on the ph website know Lyz herself was a recipient of lungs and is doing so well thanks to her gift. When she posted this story her heart must have been full with the knowledge that she was given such a chance at life. So please read it, think on it and if you have not yet gone that extra mile and signed the donor register then please do so. This might have been a blog written by a member of your family. See how heartfelt Rob is about his donor. This blog by Rob needs to be shared so I am doing my bit to spread the word.
Let us play pretend now and let us be totally honest with ourselves. Set the scene. You have been given two weeks to live, you do NOT feel poorly in any way so can be free to move around at will. Money is not an issue, you have more than enough to do what you want to do so the question is - what will you do with your time?
A new day is not promised to any of us. There is no certainly of a future, but of course we have the hope. One can be fit and healthy and in a second that is gone, as is shown by the above written by Rob. I suppose what I am trying to say is we must live life to the full always, never put off until tomorrow and all that stuff.
I think I would hire a cruise liner and staff etc and pack it with all the people I love first and foremost, then follow that up with anyone I have liked in my life and entertainers galore to keep everyone amused. With no thoughts for anyone about housework, or jobs etc all concentration would be on enjoying life to the full for all of us. We could sail the seas within limits to places we have never been to before and enjoy all the new sights and sounds and smells of the different lands and the diverse cultures. I wonder what you would do. It would be lovely to get some comments back on this one.
I see lots of newly diagnosed people with ph feeling terrified of what the future holds. How well do I know the feeling, been there done that! I remember every missed heartbeat and the feeling that this had to be the end. Every time my legs gave in then there was the sense that I would never walk again. The pulling into my lungs the precious air I needed to survive. Of course you are scared but......
Remember many of us here have been diagnosed for quite a few years. The medicines are helping us and more are being developed. We are moving on so fast in the world of ph. OK granted it may not be as quick as you would hope but believe me in terms of new meds we are doing so well now. Give them a chance, do not give in and above all else fight. Our illness is rare and misunderstood by many doctors. Our specialist ph doctors are the ones with the answers so if you are in doubt about any treatment given by your local GP then check with your ph team. There are many support groups out there now for people living with ph, join the ones appropriate to your form of ph and ask questions. Somebody is always listening and will be happy to talk to you, you do not walk alone.
My trusty robot vacuum is not performing very well, poor Robert but he is 13 years old. He does a bit of a job when I turn him on but he quickly tires and cannot find his way back to his base to recharge. I know I can buy another battery for him but there are more updated versions out now and I decided to go for it. I found the one I wanted, paid my money and waited for delivery. Delivery day was Saturday, oh bummer, but non the less I waited in most of the day until around 3.00 I received a message saying he would be delivered now on Monday. Obviously the courier had more orders than he could cope with. I did not worry and responded to the message asking that I be informed within an hour of its arrival this time in order I did not waste yet another day.
At the allotted time I waited and sure enough the ring came on my intercom saying the carrier was here with my parcel. All was not as I thought it would be however as he had a parcel for me that was not the one I had been tracking. When I told him this he said he had another one for me on the van, oh good my new iRobot. He quickly disappeared and I waited and waited and waited. After 20 minutes I realised he was not returning, he had done a runner! I rang his depot and discovered he had left my parcel on the floor when he unloaded it to put in more parcels. Now anyone can make a mistake, I can accept that but to be so cowardly as to run leaving me on my own doorstep for 20 minutes is not acceptable in my book. Of course I rang both the company I ordered Robert from and the carrier company. All will be sorted but what really riled me was that later in the day I received yet another message from the carrier company to say that at 11.45 they tried to deliver my parcel but I was not in!!!! Things like this are not good for my stress levels. If only he had told me the truth, I am a reasonable person, I have made many mistakes in my life. I would not have done anything else but wait until the following day for delivery. Instead by his actions he has heaped on his own head a telling off by the carrier company. I think he deserves it for running away instead of explaining the circumstances. So today I will collect my new iRobot from a shop that accepts deliveries, I will collect it at my own convenience. I hope to never set eyes on the driver Malcolm again, if I do he will get a piece of my mind.
Don't worry about Robert, he will get a second chance of life, I will replace his battery and pass him on to a friend that struggles to push a vacuum cleaner around so he will not end up on a rubbish dump, it is the least he deserves after all the hard work he has done for me over the years.
It is certainly moving on. The electrician has been working putting in the wiring upstairs and the guys are quickly following it up with lagging. Well the first lot of lagging as there is more to come in an eco house. I have walked the upstairs room three times now and just love the design. Yesterday we talked to a joiner about the roof as the difficulty in an eco house is getting lights into the roof spaces, not easy but we are working round all the issues. Some windows are in, some are not as they are not quite ready for them.
It is lovely now that things are coming together. We received a call from our tile retailer updating us on where our tiles are now, on the seas coming to us fortunately. Our bathroom is safe and is in storage, still not got around to picking things out for the upstairs one yet but all is in hand. We know where the loo etc is to be placed so all piping is ready for when things should be fitted.
It is all still very messy and still no plaster board up yet which will transform the place but my sense of excitement grows whenever I enter it, my imagination can now take over and in my minds eye I am turning a house into a home. I spend time looking at colour schemes, internal doors, lighting etc. It still seems far off until we move in but the reality is now the roof is on things are moving at breakneck speed.
Izzy won an award at school again last Friday. Though we warned her it was unlikely we could attend the church to see her presented with her certificate hope always looms large in her mind. I decided that no matter what I really needed to go and Colin decided that he would go, though he would be late and would stand at the back of the church. I saw her walk in and her eyes scanned the adults sitting in the rows and her face lit up when she saw me. She actually had a seat right in front of me so when I looked behind and saw Colin had arrived I was able to give her a nudge. Well talk about then the sunshine came out. How her face shone, she gave him the biggest beam she reserves for him and once again all was well in her world.
Her weekend was very busy as parents and grandad and the two children went to see Dancing On Ice. Most agreed it was not as good as previous years but I think they still enjoyed it. Sunday was to be a day at Alton Towers with friends. I know how she would love that as it is one of her favourite places.
I have been getting her goody bag ready for when she goes away with her grandad next week. She always gets two new videos so that they can both curl up at night after busy days and watch half one night and half the next. I do not buy expensive ones, often I get them from a charity shop of get the ones that are two for £6. I bought her a new card game, a couple of very tiny bags of sweeties, and I mean tiny. I put in a drink for the journey and a couple of pieces of fruit. When she comes here she can see the bag hanging on the door of the cloakroom but she cannot reach it. She touches the bottom of it with her outstretched hand and wonders what it holds. She loves me passing it to her when she is in the motor home and strapped in ready for off. Then the much longed for bag is handed over and her exploration of it begins. Then I return to our place, a friend comes to stay with me and peace reigns again in our home!
Well now you are up to date with the goings on here, much work to be done as busy times ahead. I hope this blog leaves you all well and I send much love to you all.
Please please take the time to comment or like the blog if you do. It makes it worth while writing to you all, it helps me to feel a connection no matter where you are in the world.