Hi everyone, I'm going to the 'IPF Meet the Experts' meeting in Taunton on Friday with my daughter, anyone else going?
I guess the more we know about living with IPF the better. There's no point in burying your head in the sand and anyway it should be fun when I next see my consultant and I know more than he does!
Enjoy it. Post details when you can and let us know how it went. Nice photo.
Thanks Suzy6, I'm looking forward to it and finding out more about IPF, transplants, benefits and oxygen etc. The picture is my daughter wearing her BLF 'T' shirt just before she completed the Birmingham Triathlon.
I have just had a summary of the results of the latest IPF research at B E Nottingham meeting today
After Friday we'll have to compare results eh' King. I'm looking forward to hear what the experts have to say. I'm taking my daughter because she has a memory that works.
Hope you enjoy it Tony and do pass on anything you think may be useful to us all. I am going to the Action for Pulmonary Fibrosis patient event at Wythenshawe ihospital in a couple of weeks so I will let you know if anything new is mentioned there. Lovely photo of your daughter. She looks just as cheery as you!
Hi mapal, stand by your computer for a post following the IPF meeting. Hopefully we'll have some positive news to tell.
It would be interesting to know if the new IPF Guidelines (issued in June)are being implemented anywhere - no sign of an improvement in our neck of the woods! I can't see how to attach them to a PM, but am happy to email them to anyone. Basically on diagnosis everyone should bre assessed staright away for oxygen and pirfenidone, and offered specailist rehab for IPF; also a named specialist nurse should be appointed who will give written and verbal information and be available to you - sounds wonderful, all too late for my husband sadly. One small triumph - after losing the heart fialure nurses because he has the wrong kind of heart failure (right side, due to fibrosis) we saw a different GP who wrote to the consultant in charge of these nurses and I heard on tuesday from his secretary that he has referred Keith to them, so we are awaiting action (not, I hesitate to add, with bated breath - that would just be silly !) Hope you have an interesting day - I am sure you will keep us all informed. Gill
I've booked for the Gatwick one, but am not sure if I will be able to make it. Looks like I need more than 3 hours oxygen. Can use emergency cylinders in car, portable concentrator proved useless for my needs and found I was driving with sats of 74!. Do you think they'll have a dewar there? Hope you enjoy it love Dozy x
Hi DD, It should be an interesting day tomorrow and hopefully I'll return full of hope and optimism. Well miracles do happen as we well know so its fingers crossed. I'm taking my oxy cylinders and Liquid oxygen too. It would be great if they had a dewar and a bar so we could all sit and chat while at the filling station, surrounded in a fog of dry ice. Perhaps you could turn up with your larger emergency cylinder from home on a sack truck. That should last the day eh'
On a good day I can manage without oxygen for quite long periods now but when walking and exercising I tend to have it on full throttle to maintain a somewhere near acceptable sats reading.
I think your doing amazingly well to get out and about like you are seeing as your still in the early stages of recovery. I've just had my 3 year anniversary since leaving hospital and in the last 8 months I have seen a big improvement whilst also dropping my prednisolone from 20mg to 8mg so hang in there, keep up the exercising and healthy eating, it really does work.
Hi Dallo, Yes the more that can be found out the better, lovely pic of your daughter,X
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