I was very pleased to see a message from one of our PH patients asking questions about the hickman line. We ended up chatting for many minutes and it was so good to talk in this instance! When I began this blog it was to let family and friends catch up with what we were up to since my diagnosis. However over time it has changed as I have been able to reach out to people to spread awareness and also pinch or borrow from other peoples posts videos showing progress regarding help or a possible cure for ph. This is what it is all about. We need to be able to reach out and we need to be able to help newly diagnosed understand and talk to them in laymen terms. I think these forums are a very valuable tool for reaching out to people diagnosed, or caring for somebody with ph.
So it was that I was able to tell a certain member all about the hickman line. I was able to tell him with all honesty about the procedure right the way through to the handling of the line and possible side effects. It made me feel very pleased that he had found me and that he felt he could ask the questions that needed answers to. Of course his specialist team has spoken to him about it but they have never experienced one for real, nor the side effects and not also the jubilation felt when the line manages to push our pressures back to an acceptable level so we can begin to take oral medication. I pray that he goes well with his line and that we keep in touch.
Does he know ANYTHING at all? Idiot .
I read with horror a post yesterday from somebody who had been told categorically by her doctor that ph does not cause shortage of breathe and that exercise capacity is not impaired by ph!!!!! Where the heck he was coming from and which page of the hymn book he was singing from we will never know. One thing that is for sure is that this particular member needs to change her doctor very quickly. Whilst we know there are very few doctors who know about ph once they do learn that ph exists one of the most fundamental things that is taught is that this is exactly what happens to us. Our breathing is massively impaired and our exercise capacity is very much diminished. Slopes and stairs are such a no no for us. Lifting anything heavier than ten pounds is out too.
I pray she has changed her doctor and is now with one that understands, or at least researches ph once he has her on his books. Also that her pulmonary centre sends her enough paperwork so that she can show he GP exactly what ph does to us. Maybe this doctor could even use Dr Google to find out some facts instead of dismissing it the way he has. Whilst I do not advocate Dr Google for lots of things as it is so out of date in this case it can give some insight into this disease. Does her Doctor even own a computer! I also know that Doctors can delve further into medical matters on a computer than we do as they have a special number they log into and it opens up more up to date facts, why can't he do this. Were he my doctor I would run run run for your life.
I pray she has changed her doctor and is now with one that understands, or at least researches ph once he has her on his books. Also that her pulmonary centre sends her enough paperwork so that she can show he GP exactly what ph does to us. Maybe this doctor could even use Dr Google to find out some facts instead of dismissing it the way he has. Whilst I do not advocate Dr Google for lots of things as it is so out of date in this case it can give some insight into this disease. Does her Doctor even own a computer! I also know that Doctors can delve further into medical matters on a computer than we do as they have a special number they log into and it opens up more up to date facts, why can't he do this. Were he my doctor I would run run run for your life.
Predicted a snowy Easter
Well the site is booked and one little girl is very excited as she will be spending three nights with her grandad in our motor home in York over the Easter period. The weather is supposedly going to be very snowy and icy so to that end I managed to procure a new pair of fur lined frozen boots from Sainsbury's' in the sale at a knock down price of £4.80 reduced from £16, result I think. Sleeping bags have been washed in preparation and the motor home is being serviced ready for the off. It will be interesting to hear the news each evening of how the day went. One attraction Izzy was keen to visit again was the Jorvik Centre, she so loved this, in particular the guy having a poo behind a shelter of privet edges. We have told her this is no longer available to go around due to the floods, extensive damage has been done. It will take a lot of money, lots of donations and lots of hard work to have it back up and running. It is so sad that this was hit so badly as it showed an amazing story of life in York so many hundreds of years ago.
Kath Graham
The book is here!!! It has been published and it can be bought through Amazon. Just look for Kathryn Graham and the book is entitled Life Is For The Living. Already Kath has raised over £1600 for the transplant team that carried out her operation and the ph society as a whole. This money was raised just by a private launch she had and does not take into account sales that are going on via Amazon. How amazing is this and I wish her well with continued sales of this book. Kath has worked hard to produce it, in particular as she herself is the recipient of a heart and lungs and the going is not always easy. It is an amazing read and very inspiring. For anyone with ph, or a carer or indeed alone on a transplant list of any kind this book will give hope and encouragement.
Which is it to be, Study, Trial or play the waiting game?
At my last hospital visit and on being told there was nothing else for me except the hickman line, which I will accept gladly when we believe the time is right I told you all that I was then rung by my hospital to see if I wanted to participate in a study. The study was to infuse me with iron, or placebo to see if it helped get me some strength back and better breathing. Well I have STILL not received any paperwork with regard to this. I know that the trial I was told I can go on will be available to us in April. Now my thoughts are these..... should I leave the study alone and wait for the trial drug, only a few weeks away or wait patiently to hear about the study, take that and then hope that selexipag becomes available here in the UK as it is in America? It can't be far off can it and I know that it takes a form of the medicine called iloprost which worked well for me. only taken orally instead of infused, decisions decisions. If I don't receive my paperwork for the study drug soon it may make my decision easier. I hate playing the waiting game.
Whilst on the subject of waiting games I am getting desperate about my delivery of Viagara. Health Care at Home delivered weeks ago an amount, though it was short by around half. They gave me a slip that said they "owed me" the rest. Two weeks later I got another call to say they STILL don't have enough for me. I am now using up my reserve stock, I have three boxes left. I take the original Viagara and not Dr Reddys, {can't take these as they made me very poorly and didn't work right in my body} I take full strength 100 mgs three times daily. I need these tablets. We are told time and time again that we must not miss one, our hearts could go into heart failure. So where are mine, what happens if they can't get them, what is the problem?
I know NHS are short of cash, I know my tablets cost an awful lot of money. I sometimes wonder if they are struggling to get me the funding now as I can't take the cheaper option. It seems strange that they STILL can't get me these tablets, there must be something more going on here surely. I shall ring them today and see if I can get any answers.
Does anyone else on here in the UK have a problem with getting this drug, would love to hear from you.
Update on this saga. Rang H @ H and asked the question, where are my tablets. I am told that there is a shortage but they will ring my hospital to see if I can be given any other ones as "there are many different forms". This terrifies me as I have tried and failed miserably with Dr Reddys and this ended up with my levels rising quickly as the tablets were not working and I felt so poorly in the process.
I would love to know the answer to the question as to why there is a shortage, been waiting a month now so what is the problem. More than likely never get the definitive answer to this.
Well I shall try to get to sleep again. It is very early hours here in the UK. Colin will hopefully get this blog out for me when he wakes up, he is fast asleep, how very fortunate for him.
Go well everyone, thank you for reading this blog and liking or sharing.
Carole xxx
Which is it to be, Study, Trial or play the waiting game?
At my last hospital visit and on being told there was nothing else for me except the hickman line, which I will accept gladly when we believe the time is right I told you all that I was then rung by my hospital to see if I wanted to participate in a study. The study was to infuse me with iron, or placebo to see if it helped get me some strength back and better breathing. Well I have STILL not received any paperwork with regard to this. I know that the trial I was told I can go on will be available to us in April. Now my thoughts are these..... should I leave the study alone and wait for the trial drug, only a few weeks away or wait patiently to hear about the study, take that and then hope that selexipag becomes available here in the UK as it is in America? It can't be far off can it and I know that it takes a form of the medicine called iloprost which worked well for me. only taken orally instead of infused, decisions decisions. If I don't receive my paperwork for the study drug soon it may make my decision easier. I hate playing the waiting game.
Whilst on the subject of waiting games I am getting desperate about my delivery of Viagara. Health Care at Home delivered weeks ago an amount, though it was short by around half. They gave me a slip that said they "owed me" the rest. Two weeks later I got another call to say they STILL don't have enough for me. I am now using up my reserve stock, I have three boxes left. I take the original Viagara and not Dr Reddys, {can't take these as they made me very poorly and didn't work right in my body} I take full strength 100 mgs three times daily. I need these tablets. We are told time and time again that we must not miss one, our hearts could go into heart failure. So where are mine, what happens if they can't get them, what is the problem?
I know NHS are short of cash, I know my tablets cost an awful lot of money. I sometimes wonder if they are struggling to get me the funding now as I can't take the cheaper option. It seems strange that they STILL can't get me these tablets, there must be something more going on here surely. I shall ring them today and see if I can get any answers.
Does anyone else on here in the UK have a problem with getting this drug, would love to hear from you.
Update on this saga. Rang H @ H and asked the question, where are my tablets. I am told that there is a shortage but they will ring my hospital to see if I can be given any other ones as "there are many different forms". This terrifies me as I have tried and failed miserably with Dr Reddys and this ended up with my levels rising quickly as the tablets were not working and I felt so poorly in the process.
I would love to know the answer to the question as to why there is a shortage, been waiting a month now so what is the problem. More than likely never get the definitive answer to this.
Well I shall try to get to sleep again. It is very early hours here in the UK. Colin will hopefully get this blog out for me when he wakes up, he is fast asleep, how very fortunate for him.
Go well everyone, thank you for reading this blog and liking or sharing.
Carole xxx
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