This has been said time and time again but needs saying again. Please please do not let your organs die with you. Sadly we lost Jemma Savage on 6th October due to ph. The only "cure" for ph in most instances is a transplant and we see time and time again our fellow sufferers dying through lack of organs. Jemma was just 27 - a bright courageous girl who had lived her life to the full before sadly and suddenly suffering a heart attack and death. The devastation left behind one can only imagine. I dread opening my face book pages in a morning just in case we have suffered another blow such as Jemma. It is just too sad.
We are coming up to the PH awareness time where we do our best to inform and teach people about this little known, rare disease. Just because it is rare it does to mean it might not hit a family member or friend I had never heard of it before diagnosis as indeed most people have not but believe me once you have been dealt the deadly blow one quickly learns all there is to know about it. There are different forms of ph and one of them is due to blood clots in the lungs. We have quite a few people on here who have suffered and still suffer with this. It is called PTE and the only way to remove these clots is to essentially "kill" the patient before trying to remove these clots. This is a highly specialised operation requiring great skill and I must say too it requires a good deal of courage from the patient.
I watched a documentary about this operation being performed in Papworth. Not many specialists and surgeons can carry out this operation and it was fascinating to watch. The patient was put on a by pass machine to drain their body of all blood ( of course one cannot work on the lungs if blood is being pumped through ) and then they are chilled down to an impossible degree before the op can take place Only 20 mins is the allotted time for the surgeon to remove as many clots as possible ( sadly some are too distal in some patients so they cannot be cured but may feel a lot better for getting rid of some of them) After dealing with one lung the body must be pumped full of blood again so the patient does not suffer brain damage and death. Then comes the other lung and so it starts all over again! My own friend Phil had the op but his was not a huge success as too distal. George Gaskin had his done as did Sharon Emma and my heart was in my mouth thinking of what they went through as I watched this operation. In some instances the patient is cured fully as was the case with Rita Miller but in some the cure is only a half cure as is the case with my ph friends. Our fight for life is amazing and the people who had this op knew that they would effectively been killed before the op took place, it must have been a huge decision to make but trusting in the medics they went ahead and signed the papers. I bet they all watched with interest the documentary showing a patient going through this op knowing that they too had been in that same position in the past. Trust is all they had, trust for the doctors and surgeons and all the medical staff to take care of all their needs and to bring them out of the operation safely and hopefully with a better quality of life.Where would we be without the NHS and our amazing medical teams. We owe them such a lot.
I had a telephone chat to one of my specialists yesterday. He asked how I was and I said not too bad at all but oh how I hate the new med they have put me on. It is called something like spyrolactose and gets rid of excess salt in our bodies and also does not deplete us of pottasium as many of these water tablets can do. Oh my oh my the side effects are terrible. I have come out with pin prick spots all over my torso, very itchy too and muscle ache like I cannot believe. He immediately came back with "I will sort it" so I am looking forward to another tablet that will do the same job but hopefully with not the same side effects - though of course I am not stupid and most meds give us terrible side effects. If I could just get rid of the muscle aches it would be a bonus. We shall see.
We have had an exhausting few weeks. My son owns an apartment in central Leeds and though he had a buyer for it sadly this could not happen. Due to Greenfell disaster the councils have put so many things in place before a property can be sold in certain instances. The fact too is there are not enough surveyors to carry out the inspections so sales are being lost all over the county. This is the case with my sons flat so we decided to rent it out. The market is healthy for student doctors to rent and the rates they pay for properties on this particular row is very good so it just makes sense. Rather than keep paying out rates etc get somebody in to do that for you and take a goods payment for allowing them to live in your apartment.
We decided work needed to be done. Decorating was good, very good but the bathroom needed more than a lick and a promise. The hot water tank needed checking out with all safety in mind and it was condemned! this was due to its age and the fact that it was part of a apartment complex and the damage that could occur if it burst. So a very expensive thing to replace as well as needing a thermostat on the shower and checking all electrical and plumbing works so that it could pass its safety checks and be rented out with a clear conscience. This has required us spending a lot of time in Leeds and prepping the apartment for the rental market. Our agent says he has people waiting for it so we have moved as quickly as possible. Today my son and daughter and Izzy are over "dressing" the place ready for the pictures to be taken to market it. This is a job she loves to do and she was so excited and full of ideas. I was more than happy to step back as interior design is not my forte, though in fairness once we have done a room up we do get nice compliments. I would not think as my daughter does to get such as a mirrored round tray and fill it with champagne glasses and a bottle of bubbly. I might have done a fruit bowl! So over the three of them went with a car full of things to dress the apartment and a steamer to clean the entrance hall carpet where the tradesmen did not wipe their feet!! This must look good as first impressions count. Cant wait to see the pictures but we have said we are done with it and don't want to go over again. We are so jaded with it and we now need to take time out.
On opening a message the other day I was so happy to read that we have an invite over to our cousins house in Spain for anything up to two months. Their villa will not be used and they are always happy to let us use it. Now I have never wanted to go away for too long cos we do take care of Izzy but I am also bearing in mid my illness and deterioration and that we must live our life too. At some stage we will consider this more fully. I would not fly, that is out of the question but we have done the trip by car up down many times when we had our own villa and there are many superb places to stay, generally Paradors on the way down so I think this is where we would be looking to go. This is not written in stone. With this illness there are many things to consider but oh we have such lovely friends in Javea and we do miss them and the area so very much. It is certainly something to bear in mind and maybe, just maybe we could have an anti covid jab to ease our concerns!
Once again our grandaughter Phoebe has been sent home from school due to COVID. Thus is the second time and I believe there are 30 teachers off with it in their area so another two weeks of quarantine for her. One week will take place over the school holiday too. Phoebe does go to a rather large school so I suppose there are more chances to contract it. Izzy goes to a very small village school and I pray they do not get it there as I do think schooling is important, particularly with their peer group. As they live in different area to us we are not allowed now to see them, not even in their garden. We had planned a meal out for the six of us but we do abide by all rules though sometimes it is so hard. We did take a drive a couple of weeks ago and stopped by their place and left gifts for both Ben and Phoebe in their summer house. They were all out at school or working so once again did not get to see them at all. We miss them dearly and it just brings it hone to us how it will be when they move to Australia as they will after COVID. It is hard not to be able to se each other and cath up but for their sakes we do hope that next year their dream will come true and their move will take place. They would be packing up to move by now had COVID not taken place. Well my step son will be missing my cottage pie this year! We always have the over sometime during the Christmas holiday period and always Chris puts in his order for cottage pie and rice pudding baked in the oven with a good cheese board and lots of chutney too. This will not be happening unless there is a big shift in COVID and somehow I doubt that very much.
Hedgehog House
Colin & Izzy built a Hedgehog House in the garden, we have not seen any residents yet but the food we put out every night is disappearing, the entrance is to small (we think) for a cat or a dog so we are keeping our fingers crossed it is a Hedge Hog.
Colin is busy adding something to Alexa so that just by asking her we will get hot water instantly at all the taps in the house, just as and when we need it rather than wasting lots of water waiting for it to run hot.. He has just asked my to say the magic words "Alexa Hot Water On" and yes it works! One happy chappie now I think.
OK enough, I want to go down and get a drink of my homemade lemonade, nice and tart! So will bid you all a good day, thank you for reading my ramblings and I trust this blog finds you well and happy.
Warm love to all and thank you in advance for any comments, they are always appreciated.
Carole xxx
