NEW MEMBER WITH IPF IN NEW ZEALAND

[Rangitoto]

There seems to be little or no support groups here. I live in Auckland the largest city in NZ. I regularly visit London where my son and family live and became aware of the support groups there. Interested to here from anybody with IPF.

[Hidden]

Hi and welcome Rangitoto I haven't got IPF just copd bronchiectasis and asbestos but I'm sure there will be someone along soon that can help once again welcome. Ger

[Caspiana]

Hello Rangitoto .

I don't have IPF but wanted to say hello and welcome. It's lovely to meet you. xx 😊

[AngieB72]

Hi

I have PF rather than IPF. If I can be of any help/support .......

[2greys]

Hi Rangitoto, Welcome to the group, probably the most active, single, lung forum around.

We do have a number of IPF sufferers here who will no doubt be along soon, bearing in mind the different time zones.

I am an ex-pat Kiwi, born and raised in Avondale, Canterbury, Christchurch. I left there at 12 years old to travel the world with my family, father being a consultant engineer. Although I don't have IPF, along with everyone here, do understand the battle to breathe.

[Piperava]

Hi and welcome to the group. My husband has IPF. He was originally diagnosed with COPD but after numerous chest infections he was sent for a CT scan which showed it was actually IPF. Hope we can help with any questions you have and likewise you can help us. Take care.

[lKeith]

Rangitoto

Hi, welcome to the forum, there are a number of overseas members, one of which I regularly converse with in USA. Unfortunately the state run health topics usually do not replied to by the nurses at BLF as each country seems to have different methods, so you may not get a great deal of support from the thro' no fault of their own. The members tho' usually have a bit of advice so do keep in touch.

IKeith

[Hidden]

Hi Rangitoto and welcome

I do not have IPF but there are many members here with IPF and its always good to hook up with those who understanding.

Are you also aware of the on-line support group in NZ : pulmonaryfibrosis.org.nz/

Best wishes

[Rangitoto in reply to Hidden]

Thank you so much for the NZ link which I will follow up.

[Shaurene]

G'day Rangi

I am on holiday to visit my Son and grand kids in Howick. Lived here for 29yrs I am 77 and lived most of the last 10 yrs in Thailand. I came from Merseyside in England. I suffered with Broncitis a lot when younge. I have COPD and Emphasima. Had a scan early on this year and showed a module, scaring it could be what you have but not confirmed. I am waiting for appointment for Broncopsy. I was a smoker since I was 14 have fully stopped for 7 days now and feeling much better, great breathing. Going back to Thailand 13th Sept for around 9 months.

[Rangitoto]

Nice to hear from you. My Father had emphasaema so I understand the disease. I did not have a lung biopsy as I feel it is too invasive and can damage the already problematic lung. My I P F was diagnosed with lung function tests and CV scans. I lung wash was suggested as a diagnostic tool but once again just too invasive and stressful for little outcome.

I have never smoked so the lung scarring is put down to autoimmune disease. Enjoy Howick and family and travel well.

[Piperava]

Hi Rangitoto, can I ask if you ever had severe acid reflux as I have read that it is 'possibly' a cause of IPF. My husband had a hiatus hernia operation over 30yrs ago he suffered horrendous acid reflux, he now has IPF and have asked if this could be the cause but they won't or can't commit themselves. It is awful when you don't know what is causing this horrible disease. Take care and keep well. Anne

[Rangitoto in reply to Piperava]

In my case no cause has been identified and been put down as autoimmune. I have never smoked but did have a severe lung infection some years ago. It would seem unlikely acid reflux many years ago would cause IPF.

My diagnosis was reached by breathing tests and CT scans. I have just had my fourth set over two years. My first symptom was shortness of breath. When I see my lung specialist at the hospital for the most recent results I should get an idea of how fast my lungs are deteriorating. I am very hesitant to go on any medication which have serious side effects unless I have some guarantee that it will slow down the deterioration of my lungs. At present, although four years since diagnosis I am managing quite well and am not on any oxygen. I should add that I have just turned eighty.

Thank you for your interest as I am keen to hear from others going forward.

Margaret

[goat-lady]

Great to hear that u are doing ok- long may it continue.. I have LF and manage on minimum meds as I have responded v badly to the regular ones - one dose away from liver failure on one occasion n still have hepatitis. Definitely a situation where you know your body best. Good luck.