Thank you so much for all your kind comments and good wishes, it is very much appreciated.
For Beachballs, this is my ninth year since diagnosis so you have a long way to go yet, look after yourself.
I had the Oxford vaccine, had no side effects maybe because I take paracetamol frequently and I was on steroids and not forgetting the morphine😆😏
Margot💕
Pete had the Oxford vaccine too and was fine. I had Pfizer.
Best wishes to you Margot. Take care xxx💜
Oh Margot , so lovely to hear you have managed 9 years , it fills me with hope , it also makes me realise that I need to do things while I still can , before the next stage kicks in , I have just started to use Oxygen for my walk , which means I don’t have to keep stopping now , am considering a holiday for when we are allowed, but have to work out the logistics of the oxygen. The professor back in August did mention opiates to me , but I did not feel I needed them yet. You are an inspiration , so thanks again for sharing, here’s to more good days than not. Warmest wishes 💕
Margot , hope today is a good day for you. I have a quick question , you mentioned Nintedanib in one of your posts , I am also on that drug , although was late getting it due to a misdiagnoses. Are you still on it ? ,if not What stage were you at when you came off it ? I am also under the care of the Brompton, but have a feeling that my time with them is coming to an end , at what stage were you at when you were transferred to a local consultant.Sorry for all the questions ,I know we are all different, but just needed a bit of clarity with all this , so hope you don’t mind . Take care , warmest wishes. 💐
funny as I am writing this post , the Pharmacy just rang to confirm my Nintedanib delivery next week!
I'm not doing very well today with my reply it disappeared so will start again. I didn't get Nintedanib under normal circumstances, I was doing a clinical trial taken Nintedanib and perfenidon together as the company wanted to know the interaction between the two drugs, that wasn't easy. Because I wasn't entitled to the drug at that stage the company awarded me Nintedanib free of charge to the NHS. Then when my stats dropped to 80% and the lung function test started to drop the NHS picked up the tab, this was about three years ago.For a year I didn't have any side effects and I felt good and then the stomach pain and the diarrhoea started, when it got too bad I was told to stop the drug for a month and then started again and so it went on until last year when the condition started to deteriorate, in November I called Charlotte at the Brompton and asked to stop the delivery as I couldn't cope with the side effects on top with everything else, I knew the drug was not helping me anymore.
About two and a half years ago I was doing another clinical trial I don't remember what it was for, Peter Saunders was looking after me then and said he would like to refer me to my local hospital in case of an emergency and wrote to my gp for the referral and also for palliative care to the local hospice. I'm still under the Brompton but they don't really want to know, they are aware that it's nothing they can do anymore. I had a really nice consultant in my local hospital, but he retired lat month.
But as you said everyone is different and you could go even longer than me, a bit of advise though, good exercise good diet and positive thinking will help you a lot. If you have any other questions don't hesitate to ask.
Take good care of yourself and enjoy life. 💝💞
Oh Margot , thank you for replying to me.
Your experience is a little different to mine. I am on Nintedanib and have been since November 2019 and apart from slight Nausea, I am ok on it. I had a telephone appointment with the Brompton on Tuesday , he asked a couple of questions and that was it ! I did ask him what stage of the illness I am in and he hesitated, but confirmed based on my last lung function test I was severe and have been since last July. This was a bit of a shock , as I feel well and was tickling along quite nicely.
My worry now is that they may stop the Nintedanib as I read somewhere that once you are at this stage , they usually stop this drug and I am not ready for that yet.
I have to see him again in 6 months so it may well be that it is discussed then.
The problem is I feel well and seem to have this disconnect between what is on paper (results) and how I feel. They also speak to you in that kindly voice with empathy , so I just feel a little nervous at what they are not telling me.
Thanks for the advice, I completely agree and remain positive .
Hope you are ok and thanks for replying. 🌷🌷
Oh Beachballs, don't listen to that garbage, most of the doctors at the Brompton haven't got the experience of the disease, I had an experience like that and he reduced me to 😢 likely I was still under Peter Saunders care and he apologised on behalf of Dr Chua and talked to me at length (unfortunately Peter left) so every time I had an appointment at the hospital I refused to talk to him. You will not be taken off the drug until senior doctors find that the drug is not longer useful to you. Talk to Charlotte Hogben she is the main ILD clinical nurse, C.hogben@rbhst.nhs.uk, 0789158314 she is good.About stages of this condition, I spoke to my consultant about this and he said there is no stages with IPF because the disease is unpredictable and it affects people in different ways.
I'm not very well, severe cough and breathlessness, only steroids, paracetamol, oxynorm and oxygen is keeping me going.
It's good to speak to other people about your appointment and don't be afraid to tackle the doctor if you are not happy with their response.
If there is anything else just ask.
I wish we could have a hug. I wish you feel a bit better now. 😘👍
Thanks Margot , I do know Dr Chua and of course Charlotte , Dr Chua was the one that said to me , that the only thing that could help me was a transplant...............We did explore this and I was referred but they said I would not survive the operation, so that’s off the table now.
Thanks for the reassurance.
I feel for you with that dreadful cough , you just can’t hold a conversation and it wears you out. As I said before you are an inspiration and have been very helpful to me and others on this forum .
Have a lovely Mother’s Day and thanks again. X🌷🌷
Brother in hospital with pulmonary fibrosis 
1st hospital respirtitatry appointment cancelled 
Released from Hospital
