Holiday Update.

[Joneswm]

What a stressful 10 days I’ve had. Ok, passed flight assessment, do not need oxygen to fly. I now have an NHS Inogen One Concentrator which I am not allowed to take out of the country, so have had to hire one for 1 week from Pure O2, at a big cost of £300 ! Holiday insure £300 +. Need wheelchair assist at the airports, authorisation to take concentrator on plane, and this only to Greece. America in 5 weeks, but I’ll leave that one until my return from this one.

I’m off to Stoke tomorrow to see a Professor, who can hopefully prescribe a drug Prenifadone, I think this how it is spelt. Apparently it can slow down the progression of Pulmonary Fibrosis, I hope so. Not quite sure how I’m feeling at the moment. Trying to stay positive, but not always possible. 😟😒

[sassy59]

A bit up and down there Joneswm but so long as you have a great holiday, all will be well. I must say the concentrator hire is costly.

Fingers crossed for tomorrow. Xxxx

[Joneswm in reply to sassy59]

Thanks Sassy.

Wendy xx

[Caspiana]

Hello Wendy.

Goodness it really is stressful getting all the necessities together when we travel. But try and think of the holiday and how worth it, it will all be in the end. You will have a fabulous time. xx 😊👍

[Joneswm in reply to Caspiana]

Thank you Caspiana. We are going with my brother, sister and their spouses, so yes I must enjoy and be grateful that I can go at all.

[Caspiana in reply to Joneswm]

So very happy for you. Make wonderful memories and have a magical time. xx 🌹

[Joy123]

Hi, you say you have a NHS INOGEN ONE CONCENTRATOR, I'm battling with the hospital at present to get one of these. Was it freely handed to you by NHS or did you have to battle too? I really hope you have a great holiday.

[Joneswm in reply to Joy123]

No battle at all. They suggested to me. I have this and oxygen cylinders. Can’t fault service in any way. Wendy.

[Joy123 in reply to Joneswm]

Ahh! Thank you Wendy I need 4lpm so maybe that's what's causing the problem. Joy.

[Ergendl]

Good luck with your appointment for today Joneswm. Do tell us how you get on.

[Joneswm in reply to Ergendl]

Hi there Ergendl. T

Today has been full on but glad to say I’ve been accepted for treatment, subject to a blood results. My lung capacity is now to 60%. I’ve come away with so much information and supplies, my head is fried. The Professor and myself have decided to start treatment when I return from my holiday.

Thank you Wendy.

[Maureenpearl]

Hi Joneswm,

Don't forget you will need a spare battery, you could always take the battery from the NHS concentrator if it's the same make.

Please let me know the exact name of the drug and whether you will be prescribed it. I also have Pulmonary Fibrosis.

I do hope you have a wonderful holiday.

God bless.

[Joneswm]

Hi Maureen. I’ve thought to take the NHS as a spare, the hired one is a 16 cell, so should last longer. The drug prescribed is Esbriet/ Pirfenidone. We will see how things go. Main side effect is Photosensitivity. Sunblock to be used at all times. Wide brim hat to worn. I’m hoping this treatment for IPF will give a bit of relief, although I know it doesn’t cure the breathlessness. Just to have more energy would be good.

Take care of yourself.

Wendy