Hello - my 'Mum' has Idiopathic pulmonary fibrosis

[Daisywendy]

Hi. My auntie who I have had a close mother-daughter type relationship for all my life (I'm 50, she's 80) started showing strong symptoms in late 2021 and was diagnosed last year with Idiopathic pulmonary fibrosis. She is now housebound on 24hr oxygen therapy with carers coming in and lots of visits from friends.

We are each other's only real family other than my 10yo son who we both adore.

I ve joined here as I'm starting to look for support for myself and my son while also of course supporting my aunt who lives about 1.5 hours away from my son and I.

I look forward to reading through your posts.

[sassy59]

Welcome to the forum Daisywendy. Sorry to hear of your dear mother’s diagnosis. She seems to be well supported but it must be difficult for you to see her as she now is.

I’m sure you’ll hear from others too as this is a very kind, caring and supportive place to be. Xxx

[Patk1]

Hello and welcome to the forum x

[Cloudancer]

Welcome to the forum- there are lots of friendly folk who are a wealth of information , support and tips.

[BreatheasyBe]

Hi Daisywendy Welcome to this wonderful group. I’ve found great relief from their support and guidance hope you do.

Sorry about your aunt.

[GintyFerguson]

Welcome, I'm sure you will get sound advice and support here.

[Alberta56]

Welcome to the forum Daisywendy. Sorry to hear about your auntie, but it sounds as if she is getting very good care. If you have any queries, I'm sure there will be people with IPF on the forum who will be able to help you. xxx

[Izb1]

Hi Daisywendy and welcome to the site x

[Caspiana]

Hello Daisy. I'm sorry to hear about your mum. How awful and terribly worrying. This group is fantastic for general support and advice and I think it is so good you joined. I will however make a suggestion that you find and join idiopathic pulmonary fibrosis groups on Facebook. Members there would be experts since they are "living" the disease and doubtless there would also be carers there. I just had a look and there are quite a few groups. I am sure you could find U.K. based forums there too. You really need a group that specializes in IPF.

Very best wishes to you both.

Cas xx 🌿

[GD53]

Hello 👋 and welcome 😊 to our informative and friendly forum. Cas is absolutely spot on with her advice to join a group/forum for IPF.Sure you will find this helpful and reassuring. Hope you and your son stay safe and well. Best wishes to auntie. xx

[Suzie42 in reply to GD53]

For those who don't want to join Facebook groups, there are many members here with IPF. I have IPF and been on this forum since i was diagnosed in 2020 I was referred here to this forum from my gp. So plenty of info here x

[GD53 in reply to Suzie42]

Hello Suzie42. Well we stand corrected. 🤔 I do hope Daisy finds the help and support through this forum. Best wishes. Dawn.xx

[Suzie42 in reply to GD53]

😊👍yes Dawn I hope they get the help needed. I've got so much help here. Take care. Jill xx

[Caspiana in reply to Suzie42]

Hello Suzie. I hope I didn't offend you and I should have probably worded my comment better. We do have many good informative posts here you are right. I only mention Facebook forums because the are many singularly for IPF with hundreds of posts for just IPF from people all over the world which definitely gives so much information in addition to our group of course. Courses of treatment currently emerging globally are also very interesting to read. Have a good day. xx 👋🙂

[Suzie42 in reply to Caspiana]

No Cas , no offense taken. As one of the few not on Facebook I know I must miss out on info on that site. I just wanted to let her know that HU has a few IPF members here if she needed us. Although I know its hit or miss with HU IPF members as sometimes we post and nobody with IPF answers. I picked someone out who posted in Dec who was new to the site and no one answered except for me. I then private messaged her for a while. Last week another new member posted and got a big response, so I PM the other member and told her of the post and then noticed she got involved.So you are right in what you are saying because it is hit or miss for us with IPF.

Take care. Jill xx

[Caspiana in reply to Suzie42]

🙂👋