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[Boobooteddylegs]

Hi all. I have ideopathic lung disease and am interested in talking to others with this condition .i would love to hear from you

anne

[Katinka46]

Hello Boobooteddylegs

An intriguing name?

Can you be a bit more specific about your disease? Is it idiopathic pulmonary fibrosis?

There are members here with that.

And will be happy to offer you advice and support.

All the best

Kate

[Boobooteddylegs in reply to Katinka46]

Hi Kate... I'm kind of all over the place with this. At first diagnosed 4 years ago, was thought to be induced by Nitrofurantoin and expected slow progress. Was on oxygen from start but coped well.

Last summer my symptoms worsted and was trialled on Nintenadib. Absolutely no way I could tolerate it.

Then in March I was in hospital with pneumonia and deteriorated more and due to covid, have been unable to see my consultant. I did have a telephone consultation, where he mentioned asking a colleague who deals in transplants to see me. No news as yet. I now require 6 litres of oxygen at rest and 10 on movement which is limited.

Sorry for going on and thank you for messaging me

Anne

[Katinka46 in reply to Boobooteddylegs]

Thanks for that, I can tell from your medication that it is IPF. I’m sorry and you have had a lot to put up with.

I do hope you have success with the lung transplant specialist.

All the best

Kate x

[HungryHufflepuff]

Hello and welcome 😊 What a great name 🐻

[Boobooteddylegs in reply to HungryHufflepuff]

Thanks

may i ask what is your specific lung disease

anne

[Caspiana]

Hello Anne, 👋😁

I'm sorry to hear about your diagnosis. I can see you have IPF and are on a lot of oxygen. I was on oxygen too but had a lung transplant a year ago.I would definitely chase up your consultant about the transplant. It is a long journey that could stretch on for years and as we know time is not always a friend. If you need anything or want to know more about transplants in general I would be very pleased to point you in the right direction and help you myself.

Warm wishes to you,

Cas xx 🍀

[Boobooteddylegs in reply to Caspiana]

Hi Cas.

Yes i believe the cut off age for transplant is 65 and will be 60 next January.

Has your trnsplant been a great success and how long was rhe process?

it would seem you understand how my life is affected, what should i expect from myself phyasically though i undestand every person is differant? i wonder if i am a bit hard on myself at times!

Anne xx

[Caspiana in reply to Boobooteddylegs]

Hi Anne. I think weighing the pros and cons, getting all the information you need, speaking to others who have been through it (support groups) and importantly understanding exactly what a transplant entails is very important. I am doing well, but the medication post transplant can be extremely rough on some. The problem with transplants are none of them are exactly identical. Everyone will experience something different. And there is no way to know what they outcome will be. Many people do extremely well. Others have to return to hospital many times afterwards. Ninety percent of patients will experience some form of rejection within the first year. However many a time this is treatable. If you click on my picture it should bring you to my page. You can read more about my transplant journey there. If you'd like, I can introduce you to a transplant forum. It is mainly American but it is very useful to gather information. Just message me if you need to know anything.

Best wishes,

Cas xx 🙋🐕

[AngieB72]

I have pulmonary fibrosis diagnosed about 12 years ago. Mine isn’t idiopathic but if you want to chat......

[Ergendl]

I don't have IPF but want to welcome you to our group and wish you all the best in your quest for a transplant.