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Ipf

T1ggles profile image
15 Replies

Just want to introduce myself as a new member my husband has ipf and is currently on the transplant list we are under Papworth Hospital

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T1ggles profile image
T1ggles
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15 Replies
baseman profile image
baseman

Good Morning, Tiggles, I thought it was only silly b*****s like me up at this time! Sorry to hear about your husband. Welcome to the site, anyway. Hope he gets sorted soon.

This place is a great resource for, not only patients suffering from Lung problems, but also spouses and carers, who in their own way are suffering.

I hope you will continue to use the site and ask about anything you like..there will always be somebody who has encountered or even be going through whatever problems you face. Not sure what ipf is, but I hope he soon gets it sorted with a transplant.

Kind regards-Dave in Blackpool, Lancs. p.s Why have you taken the picture of yourself lying down?! haha. Take Care both of you.

Ergendl profile image
Ergendl

Hello, Tiggles, and welcome to the site. I hope you get as much information and support as I have. Hopefully someone will be along soon with experience of IPF to start the ball rolling

T1ggles profile image
T1ggles in reply to Ergendl

Thanks hopefully

Sheilab123 profile image
Sheilab123

Hi Tiggles, just wanted to say welcome, I don't know much about IPF but there will be lots of members around who do, no doubt you will hear from them later. Any questions just fire away! Take care xx

mmzetor profile image
mmzetor

hi welcome to the site hope you fined any help and advice you need here

freefaller profile image
freefaller

Hello, nice to meet you. Good Luck with the wait for transplant and hope it is not too long.

Sooki profile image
Sooki

Hi and welcome,I attend Papworth for IPF,I was refused a transplant because of a patulous oesphagus,that means baggy so they were worried about reflux,referred to Newcastle,so they asked Papworth to do more tests,am waiting for appointment,very good hospital,I travel from Birmingham,you look young so I assume your husband is,it's a shitty disease at any age and people seem to be getting younger to get this illnes,it's normally picked up in your 60's.Please join Pulmonary Fibrosis UK on Facebook there are 2000 of us with IPF on there,it's a wonderful group we help each other,it's a closed group so you can keep your posts private,you can message me anytime it can be an awful illness to live with,not many people know about it,.Regards Sooki.If you Pulmonary Fibrosis group let me know I do not use Sooki on there,we usually use our proper given names.

T1ggles profile image
T1ggles in reply to Sooki

Thankyou so much ye my husband is just in his 50s and has had this illness for the last 2 years he is so positive and nothing will dampen his spirits i think sometimes is the ones closest that worry i am still coming to terms with every thing but just felt like it was time for me to open up and talk a bit i will join the group thankyou so much for that advice

Toci profile image
Toci

I have COPD, not IPF but just wanted to say hello and welcome to the site. :)

T1ggles profile image
T1ggles in reply to Toci

Thankyou

Lynda1952 profile image
Lynda1952

Welcome to the site. I do not have IPF so cannot help but there are several on this site who will be able to help you. All the best to both of you xx

T1ggles profile image
T1ggles in reply to Lynda1952

Thankyou

Titchykath profile image
Titchykath

Hello this group has mountains of info , so friendly and funny also , l lol quite a lot, but then cough but it's worth it . I am 53 and was diagnosed in August with ILD 😕

bulpit profile image
bulpit

Good morning Tiggles, so very sorry to hear your darling husband has IPF,do trust he will be able to get a transplant. My husband was diagnosed in early 2008, given a diagnosis of one to five years of life expectancy, he was then 76. He actually went into his sixth year,was only very poorly in the last 3 months of his life. I understand from reading this wonderful site there are people who survive much longer. Also now, even since 2008 there are more drugs available that treat the condition. Good luck to you both, very best wishes, Bulpit

T1ggles profile image
T1ggles

Thankyou so much for the reply he has been on perifidone for about 6 months now and tollerating it really well

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