Early Onset Pulmonary Fibrosis

[Walk2424]

I still wish to travel abroad but I have a feeling that putting the above on which is a Terminal Illness as we all know, is the main high cost, that my two present Insurance Costs reflect. Anyone got any ideas and if you initially go with a Company for a year is it easier to stay with them until you can no longer travel if you get the drift? Thanks for any help you great fabulous hardy people. I have seen much on here to keep driving me forward. I hope you all are trying to keep as well and as safe as possible. Thank you all.

[Karenanne61]

I don't have pulmonary fibrosis but very severe copd etc . That and regular visits to Harefield really push my holiday insurance up. I don't know of any particular company that offers a good deal, we just trawl google. As we are doing now for our holiday in Ibiza this summer. 🏖 It would be interesting to see if any one else has recommendations.

[Karenanne61]

I don't have pulmonary fibrosis but very severe copd etc . That and regular visits to Harefield really push my holiday insurance up. I don't know of any particular company that offers a good deal, we just trawl google. As we are doing now for our holiday in Ibiza this summer. 🏖 It would be interesting to see if any one else has recommendations.

[Bevvy]

I have multiple health issues but used Staysure last time I went on holiday abroad. It wasn’t cheap but I was pleased they would insure me.

I spoke with them to take out insurance because I wanted to be certain I had mentioned every health issue I have.

[MMaud]

hi there, I was unexpectedly delivered a diagnosis of IPF around 18 months ago. It was quite the bolt from the view, as it was picked up as a result of a chest CT when I was taking part in some medical research into heart health.

Personally, I don’t look upon my diagnosis as terminal. Far from: it. I view my condition as POTENTIALLY life-limiting, and I’m doing all I can to stay in good shape, and for me that includes travel.

I am fortunate to be extremely well, and am 2 months into a 3 month trip to SE Asia. I’m walking every day, averaging 10km, and living my best life, enjoying the heat.

My insurance for the trip costed at a Costa coffee short of £1000. I am a 66 year old woman, with no other major conditions.

Each year when you insure, even if not asked, you will be expected to declare any new conditions, and each time an application is made, you will answer largely the same questions.

The PF targeted question I had to respond to were, from memory, if I used oxygen (I don’t). How many hospital admissions in the past year (none). How many courses of antibiotics (none) and how many chest infections (none).

I’d urge you to crack on living your best life. None of us are guaranteed a future, but sure as heck, I have ZERO intention counting my own down, because of what statistics say.

My consultant is happy, if envious, of my travels, and encourages me to go, although she did give me a course of antibiotics to bring away, just in case I was caught out, and not close to medical care.

We get one life. I’m planning on confounding the stats and living a long, long time.

Good luck whatever you decide to do Walk2424 , but I say, go for it.

[Carkaisabellacolin in reply to MMaud]

Amazing I love your attitude. We only have one life and I am like you . I love travelling and even though I can get such very quickly I really don't stop. Whenever I can I travel with my family and always include somewhere we can take a long walk . I always say to myself even if it takes me all day I will do it .I don't want my illnesses to define me. Good luck on the travels 😍

[Karenanne61 in reply to MMaud]

I love your positive, can - do attitude! Happy travelling!

[1carus]

hiya

I also have ild and insurance this year was v high

I found getting an annual one was best but if you can leave America off the list it does reduce it a lot

[MMaud in reply to 1carus]

The annual policy only works if your trips are under 30 days. Anything longer than 30 days can be done on an annual policy, but the costs reflect the proportion of the year you are reliant upon it for your healthcare. In my case, that would be a minimum of 25% of the year.

That said, it is always worth checking out.

[Italia]

My Dad has IPF as we live in the U.K. he requires oxygen and oxygen when he’s out and about and this, coupled with the IPF has meant overseas travel for him is no longer possible owing to travel costs.

If you’re on O2 you can contact airlines and they’ll provide concentrators etc. He was also told that he’d need to go for a lung pressure fit to fly test to see if the cabin pressure would affect him or not.

Over the last year we’ve been doing U.K. tours as there’s a lot of our own country that he hasn’t seen. I know it doesn’t seem the same to him but we have great times and make great memories.

Keep active and keep travelling! There’s lots still to see!

here’s some guidance from a lung organisation:

asthmaandlung.org.uk/living...

[Clovergrass]

We are struggling with this ourselves right now. My husband is already covered for his RA with Staysure but when I rang last year to add newly diagnosed ILD to his policy they wanted a fit to fly letter from GP or consultant, neither of whom seem willing to write one, each saying the other is the best one to write it. My husband is not on oxygen and we walk every day up to 3 miles. Maybe I should just try calling again and might get a different agent. But I'm sure one of the questions I was asked was is he fit to fly? Do I just say yes??

[Karenanne61 in reply to Clovergrass]

If they are insisting on a letter could you contact your gp surgery and see if they have a respiratory nurse? Or your consultants's secretary should be able to give you details of your local respiratory team and they may help. After lockdown I just asked my consultant if it was ok for me to fly and her response was to go for itand have fun, with a reminder to stick to hygeine protocols.

[Clovergrass in reply to Karenanne61]

Thank you for your reply. Our respiratory department doesn't have respiratory nurses you can contact with questions, unlike the RA department. I did ask the consultant about that. Nor was it suggested there was a secretary one could contact. So after your consultant said you were ok to fly, did your travel insurance company just take your word for that when advised about your condition with no letter required?

[Karenanne61 in reply to Clovergrass]

The insurance took my word for it. You can usually email the consultant and/or their secretary. Sometimes it takes a bit of research via google to find email addresses or ring the hospital.

[Clovergrass in reply to Karenanne61]

Thank you. I will try to do that. My husband's 70th birthday is in July and I would love to get him to Spain where we've spent his birthdays since 2017.

[m1sty]

Hi Walk2424. I've heard 'Allclear Travel Insurance' are good and they have come recommended by friends. It may be worth checking out their Web site. I also have Pulmomary Fibrosis on my list of ailments. I have to admit, its not totally clear to me what this means as I understand it falls into 2 groups; idiopathic and non idiopathic. I believe the former means it has no known cause and the latter if the cause is known. Mine was caused by Covid pneumonitis, however I don't know what that means to me in terms of longevity. Keep well and I hope the insurance details are of use.

[MMaud in reply to m1sty]

The thing is, nobody knows how long any person might last with PF. PF may not even be the cause of the end of that person’s life.

According to my consultant they have patients with PF in clinic who have been static, in terms of progression, for years, others whose progression is slow, and those less lucky who have a very difficult time.

Bad things happen to us all, but I’d rather focus on the positive, and cram in adventures, rather than be at home waiting for the next bad thing to come calling.

I am not in the least naive about this condition. It claimed my father and a cousin, so I’ve seen it all up close and personal, but whilst my fathers outcome was not good, he lived his best life for every day he had, even if in the latter days his days weren’t that great to be honest.

We don't often get to define our demises.

[Injecter1]

I also have IPF but sadly mine has now progressed to 24/7 oxygen and I am unable to walk very far so need a wheelchair for trips out. Unfortunately covid, lockdown and having to isolate stole 18/12 but I’m so grateful I got to do my travelling before I got to this stage as it’s impossible for me now. While we all know the outcome of IPF, (I’m a retired nurse) I certainly never really saw myself at this point…. So please book as many holidays as you can afford!

[Mavary]

I’m sorry that you have this disease but if you are able then live your life as well as you can. My Husband had Pulmonary Fibrosis. Once we knew we had one holiday after the other. Not all abroad as his insurance went through the roof. But we went to all the places in England that we wanted to do but always had time later on. The trouble is that time never comes. We travelled from the West Country right across the bottom of England stopping at Brighton then travelling along past Margate up round by the Thames and over the other side to Southend. Another time we went to The Isle of Wight because I always wanted to go there. We also went up to Snowdonia which was beutiful. We went up the top in the train. We did go abroad. We went on a Cruise to the Canary Islands. It was on that cruise that the ships Dr I think found the IPF although he never told us. He wrote a letter to our GP. We had gone to see him because my Husband had a bad back that we found out after coming home and having an X Ray. I told him about the awful cough he had and he examined his chest. We went on another cruise to Italy and the Amalfi coast. After he was diagnosed we had some wonderful holidays so please go and enjoy yourself while you can.

[Seaberg]

Dear Walk2424

Dear Walk2424 I have PF and agree with the friends in this group that the best one can do is to do what one can, keep as active as possible and enjoy whatever activities you can manage.

After restrictions of lockdown my husband and I decided a return visit to Santa Fe and Chicago. The insurance cost was horrendous but an annual Worldwide policy from AllClear proved the most economical if one wanted to do other trips. I did a fitness to fly test passed but didn't get a letter and nobody asked to see one (perhaps an oversight but I could prove I had done if necessary). I am nearly 83 and hope to do another long trip this year, if the insurance isn't prohibitive. I don't need oxygen and found a rehabilitation course at St Thomas's helped my breathing and confidence. Unfortunately PF has occurred in my family over three generations and I have seen the effects it can have but MMaud 's attitude is wonderful. PF is potentially life limiting but it isn't necessarily terminal - something else may come along first.

I do hope you find a way of travelling with confidence and enjoy what is on offer. All very best wishes and kindest thoughts.

[Xrossstich]

my husband has pulmonary fibrosis terminal, diagnosed over a year ago, we did a 32 night Med cruise last November 22, we got insurance with Allclear no problem, he got pneumonia on the cruise and Allclear paid the medical bill (£900) no trouble. Go while you can, enjoy life. Good luck, Crossstitch.

[Ern007]

Hi, I have scarred lungs also. along with angina and other assorted goodies. I was with All Clear and kept them UNTIL my doctor said "My advice - stay on the mainland" - That was when cancer added to my other problems. I don't quite understand what your are asking, Fibrosis is terminal, so are most lung and heart conditions - Can you not just put "Pulmonary Fibrosis" as a condition as your would say "Emphysema " ? I can't advise you I am not a Fr or expert, but have you tried getting insurance declaring "Pulmonary Fibrosis" ? or am I missing something? Good luck anyway.

[Jaybird19]

i have found in the past that Saga cruises while expensive do have a health insurance that covers more than most travel insurances. surprising they havent used saga insurance but another company . his is included in cost of holiday while giving a discount if other insurance is already in force . i got problems with lung infection and got whatever i asked for.

they did cover some cases that other companies had refused but not been for a few years now so might have changed .