Apparently I MIGHT get another year to live!!!!!
No this is not a doctors advice to me at all, no statement as to the longevity of my life. This was a statement told to me by my granddaughter Izzy. I have had a lot of nosebleeds, 7 in one particular day and they were not tiny ones, well at least five of them were not. She takes all this in her stride as she has lived all her life with me having ph and all it entails. However I had to smile at her latest remark to me. I was in bed with the sick bowl and blood dripping merrily into it through all the tissues I had stuck up my nose, I had run out of tampons that I plug my nose with generally as as I had had such a run on nosebleeds. She came into the bedroom and calmly told me to rest. She said "rest now grandma and you might get another year of me, then with a shrug of her shoulders she followed that up with "but you might not" and blithely ran out of the room to see grandad!!!
We have always been honest with her with regard to my illness and she takes it all in her stride. I hope she is wrong and that I have many years to live, that the cure is found for EACH AND EVERYONE OF US, we certainly all deserve it.
Thank you Jayne Venables for this.
Opening my computer this morning I saw this old post from Jayne. I have no idea who wrote it in the first place but for any ph fighter it is a very profound piece of work. I wanted to share it with you, it deserves to be seen by as many as possible.
"What It's Really Like to be Chronically Ill
Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.
I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.
Being sick isn’t as glamorous as they make it out to be in the movies. And unlike cancer perks, there are no “chronic illness perks.” Except maybe those really good lollipops at the doctor’s office. Those are definitely a perk.
The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?
The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?
Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.
There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal.
I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.
You learn to love every good second, every good minute, of any of those few good days you might have. You don’t fear death because you’ve already stared it straight in the face quite a few times. You know it’s not important to dwell on the little things. You have more important things to worry about.
So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular teenager.
Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end."
As many of you know I was the 8th person out of 15 worldwide to have a procedure called Denervation. . This is with the hope that it lowers the pressures in my lungs If it proves to be a success it may become another procedure to help us all to live longer whilst fighting ph. At the last testing it had lowered slightly by 6. Now my appointment has arrived for the final MRI and Right Heart Cath.
The denervation watch has arrived, (I need to wear it two weeks before my tests so it will be interesting to see how the results are. This watch monitors so much of what is happening in my body. I cannot see any of this. After two weeks the results are downloaded and sent off to Israel, It was Israel who came up with the idea and it is them that pay for all costs relating to this procedure. To be honest I have not been the best these past few weeks so I am not expecting amazing result. This is sad as I so wanted it to be another option for lowering the levels in our lungs. Anyway I should not jump the gun and we will see what we will see.
Alex ( the Doctor who carried out the procedure) is currently in America but will fly home in time to do the right heart cath. There has been a great deal of difficulty getting theatre time and MRI time so I believe my right heart cath is at 7.00 a.m. on Monday the 22nd January. This means an overnight stay at a hotel on the Sunday and Monday. Sunday we will do all the usual things, bloods, walk test etc so I am ready on the Monday for the cath. Tuesday I am having my MRI and then after talking with Alex it is home and the end of any more testing for denervation, though I believe they will follow up for two years with phone calls.
I am looking ahead to my next rial. Not sure which one et though I have been in touch with one of our specialists who has always hoped to trial one this year. I have asked him how far off he thinks his is, can I get another one in before his goes to fruition, we shall see.
Update on that. Nick who is hoping to trial a new drug said it will be another 1 to 2 years before it is ready to trial so said I have time to get another trial in! Hey ho here we go hopefully.
Count your blessings
How easy it would be to go into another year with our hearts downcast at the life we now lead with ph. However I feel sure each and everyone of us have some things in our lives to count as blessings. I know I have many and when I am feeling downcast because of the things I can no longer do I sit and count my blessings for the life I do have. I could have lost the last seven years of my life without my amazing A Team who have taken such good care of me, without the research always going on etc. So I have much to be thankful for, seeing Izzy growing up, my daughter getting engaged to a guy I really love and my son so happy with his gorgeous girl. All of these came since I was diagnosed.
We did not do anything much to mark 2018 but we were invited down to our friend's house and cabin There were six of us in total and we had cheese and biscuits, mince pies etc and of course champagne to mark the beginning of the new year. It does not take much to make me happy at all, just small delights now, just enough for me to cope with. Nights at the theatre are long gone as they are too late for me and certainly I can no longer travel too far to enjoy the lovely musicals I enjoy so much. So just the small things make me happy to be alive. I count my blessings every day for sure.
This is getting scary really. It has now been seen in almost every part of the UK, though strangely enough not in London. We are being advised not to shake hands, operations have been cancelled and doctors are working flat out to try to manage the demand after being told to keep patients out of hospital if they possibly can. After suffering flu once when I was healthy I cannot bear to think of the consequences if I was to come down with this now. I lost a good fried, a previously healthy 34 year old man to flue around 30 years ago.
I have given Izzy her own little pot of hand sanitiser which is supposed to kill all germs of up to two hours, I also told her to rub a little under her nose. No idea if it can help to stop bacteria going up her nose but I will try anything. Our mouths are a different thing entirely. Yes I always knew it would be scary when we were first told about it but now seeing the facts laid out before us of even the young, fit and healthy succumbing to this dreadful disease I am even more aware than ever of trying to stay away from bunches of people than ever.
At my church yesterday I told them would not be attending for the next two weeks. If I get something like this then the testing of the denervation will be off and so many people are involved I would hate the careful planning to go to waste. I pray you all keep safe from this, take all precautions necessary and dodge a bullet.
Trump and Kim
I am not getting involved with any of this except to say GROW UP. To read and see the headlines on the television where they are trying to outdo each other with the size of their nuclear weapons is so awful.. "Mine is bigger than yours" is a line Trump has used. I think it is so scary to have two power hungry people in charge of a button that can kill so many. We are way off living in a world of peace and harmony I know but I sill think it is so sad that we cannot get on together, that the world is filled with wars, starvation, despair and all the rest.
Over the last two weeks we have seen this candle a few times. It depicts the death of another ph brother or sister. Lost to an illness that hits us and gives no mercy, young and old alike, the fit and the healthy, struck down in an instant with a deadly disease that slowly builds its way up to a crescendo with the end result being the candle we all recognise. My heart goes out to each and every family that has lost a loved one to this disease, all keep phighting and maybe we can find a cure in 2018.
No work has been done over the Christmas and New Year period but it begins again today. We are on our way down to see the site and to take delivery of our one and only appliance for the kitchen our new dishwasher! I will keep you updated when we get a bit further.
Now I have to get off this computer, Colin has so much work to do with regards to the new house he is being hampered by me!!
I bid you all goodbye and I wish you warm love. Please please if you like what you read then click the look button or comment. it really maters so much.
Thank you so much