Coping with Pulmonary Fibrosis

[Bournemouth-belle]

I’m having problems dealing with my PF been diagnosed for 2 years. The last year has been difficult with limited mobility and on oxygen therapy.

Can anyone suggest techniques that have worked for them.

Anna

[Carnival567]

I too have PF, diagnosed 4 years ago and caused by the drug I was taking for my atrial fibrillation, which was then stopped, but the damage was done. I also have other health problems with my heart and lungs. I’m not sure quite what techniques you mean though. When I was first diagnosed I carried on as before, that is doing what I could. This last year has been worse, my health has declined, I have been in hospital several times. I am on oxygen all the time but got organised with the respiratory nurse so that as well as the home concentrator and oxygen cylinders I also have a portable concentrator which I use when we go out in the car to save lugging lots of cylinders so that we can go out for the day. I no longer drive but that is more to with my eyesight. You will find that you will develop your own ways of doing things, and it is worth discussing your needs with your respiratory nurse. I am on hospice care now and have found it to be so helpful and encouraging. I am 77, but mostly enjoy life. My husband does most of the household chores except the cleaning, bless him. One thing I have forgotten is that I use a mobility scooter which enables me to have some independence and I am looking forward to getting out on it again. Do what you can, and try not to get too depressed about the things you can’t. All the best xx

[Bournemouth-belle in reply to Carnival567]

Thank you for your response, it’s good conversing with someone who has the condition.I don’t know anyone who has the condition which makes it harder to relate to.

My PF is due to Rheumatoid Arthritis, the RA is being actively treated but constantly getting pneumonia requiring hospital admissions. Like you I’ve other medical conditions. I’ve been referred to palative care unit, just waiting for date for visit to put things in place. I’m 67 divorced, with 2 girls who live nearby. With COVID it’s been difficult seeing them as they have young children. Looking forward to being able to have real hugs soon.

You sound really positive, how does your husband cope?

Do you have any hobbies? I make memory books, however they are taking longer to make ;

[Carnival567 in reply to Bournemouth-belle]

My husband is mostly brilliant. Having never cooked he is getting pretty good, although a little boring. He does the washing and ironing, although the amount ironed has reduced over the years. He has had his own health problems since we moved here, prostate cancer and bowel cancer, both thankfully in remission. However, he does have a stoma, which he is very pragmatic about. We have been married more than fifty five years, so we know each other pretty well and are happy and mostly peaceful together. It all helps. I gave him a dog for a golden wedding present which he absolutely loves. We have always had dogs and it undoubtedly helps him keep going. Life is what you make of it really isn’t it? No real point in complaining, nothing is going to change. We moved to be near my younger son’s family and now we have had our vaccinations we spent the morning with them. Their two small boys were delighted. We had lots of hugs. They have all had Covid anyway at Christmas. It must be lovely for you to be near your daughters and grandchildren, you will soon be able to get to hug them. Thinking of you, many blessings xx

[HighGables in reply to Carnival567]

I’m the same as you Carnival. IPF, oxygen 24/7, mobility scooter. Could have been me writing it.A very BIG thank you as I didn’t realise they do portable concentrators. I have one up and one downstairs but going out is always tricky because of the cylinders. I bought a portable oxygen which uses batteries and the car cigarette lighter, but it only goes up to 4L which is no good now. I’ll contact my supplier and see if they do them. Many thanks Jax. x

[Carnival567 in reply to HighGables]

My portable only goes up to 4, which is not 4 litres but only about 2.6 which is adequate at present, though I suspect it won’t be enough soon. It’s very misleading when they give these measurements, but I belong to an American site called Inspire, living with PF and there is a very helpful person who has worked out the mathematics of it all! Each number is about 0.6 of a litre, and of course, a pulse. Nevertheless it makes all the difference just sitting in the car, where it can be plugged in. Mine is an Inogen 3.

[HighGables in reply to Carnival567]

Mine is an Inogen too, and back in the day it was a life saver. My biggest wish is either a silent concentrator or one with a remote control for the number of litres being used.

They can put a man on the moon and a buggy on Mars, it’s not too much to ask, is it ! 😂 lol

Jax. x🐶x

[Carnival567 in reply to HighGables]

I’d love to have one with remote control, especially as I have been having SOB when I get up for the toilet in the night. My doctor suggested I turn the oxygen up, until I pointed out that the concentrator was further away than the bathroom!

[Bournemouth-belle in reply to Carnival567]

Me too, life would be a little easier, but having to use cylinders when I move which is frustrating...... [my portable concentrator isn’t as affective as it used to be... ]

[HighGables in reply to Carnival567]

With you there. If you could sleep with the noise of a concentrator beside your bed then your a superstar. Mine is in the spare bedroom an extra walk during the night I could do without ! Jax. x🐶x

[Carnival567 in reply to HighGables]

It’s in the sitting room behind a closed door! However, it went wrong yesterday and I now have a new one which is almost silent.

[dotw1 in reply to Carnival567]

Hi . Can you tell me what drug you were taking for atrial fibrilation that caused you to develop PF? I wasn't aware of a link between the 2 conditions before seeing your post. Thank you

[Carnival567 in reply to dotw1]

My cardiologist in Lincoln reluctantly prescribed amiodarone , which is known to cause lung problems in some people, for af because he was struggling to control it, I had already had 10 cardioversions and an ablation, none of which lasted. He then sent me to Leicester, the regional centre, where it was changed to dronedarone which is supposed to be safer. I should say that I already had bronchiectasis. When we moved here to Gloucestershire the new respiratory consultant wasn’t happy with it and got the cardiologist to stop it. By this time I had developed probable obliterative bronchiolitis which has caused the PF. I also have pulmonary hypertension. All these heart problems are because I have congenital heart disease. The bronchiectasis probably developed from having whooping cough and bronchitis when I was a toddler, pre antibiotics

[dotw1 in reply to Carnival567]

Thanks for the information. A family member had atrial fib. I will ask his wife what meds he took. He recently developed pneumonia and when the hospital scanned his lungs it turned out that they were very badly scarred and he could not recover. Until the pneumonia, he didn't even know his lungs were badly damaged . I am just trying to understand what may have caused it. Ironically his wife also has bronchiectasis from having a collapsed lung as a baby. Best wishes and thank you again for sharing your story.

[Mrbojangles]

Anna, join the club!A few hopefully helpful tips which have certainly made my life a tad easier.

Showers... play havoc with my oxy levels so i keep them as short as possible.

Spray deodorants a complete no go.

Smaller meals ( but loads of chocolate).

Windows open at night.

Walking at a slower pace but further .

Oxy bottle at number 3 but obviously check with your doc.

Vitamin D supplements.

Regular exercise several times a day especially the stand up and sit ones i learned at pulmonary rehab.

Copious amounts of Merlot.

Stay safe... xx

[Bournemouth-belle in reply to Mrbojangles]

Thank you for your response.Exercise that would be heaven, unfortunately due to other health issues have to restrict my levels of activity.

Great ideas especially the chocolate 😉 never thought about shower causing problems, for me it’s usually a quick hose down use a towelling robe to dry myself as I cannot hold a towel.

Anna

[Amberfrankie]

Hi ,I also have r.a. induced p.f. diagnosed just over a year ago ,I am under brompton ,I am 66 , on oxygen 24/7 and m.m.f and steroids ,I am pretty stable , it does restrict your independence , thank god for my daughter , getting on exercise bike every day now !! Hate it but otherwise I don't get any exercise ,and as everyone knows those steroids make you put on weight ,we just have to stay as positive as we can ,I try to do what I can ,every day is different ,

[Bournemouth-belle in reply to Amberfrankie]

Thank you for responding, I’m sorry to hear your a fellow suffer due to RA, what is m.m.f. ? how do you manage? Do you have a good medical support team? I’m under a joint respiratory and RA team at Southampton hospital. [plus consultants at my local hospital] I’m on biologics, morphine and high dose of steroids, my weight is stable at moment [not putting any on but still need to loose a lot]

The teams all have ideas but don’t talk to each other, any changes take ages to put in place.

Really miss social side of life, being able to people watch with a coffee.

Where are you located?

Anna

[Amberfrankie in reply to Bournemouth-belle]

I am in northolt ,just a short drive from heathrow , I am under brompton ,I have found them brilliant,had a bad flare up last year , they gave me 3 days of intravenous steroids and put me on mycephenolate mofeil with suppresses my immune system and stops it attacking my lungs and a maintenance dose of steroids ,and of course oxygen ,so far so good ,although probably like you pretty much tired all the time ,27 per cent lung function , we just have to be the best we can , you look after yourself and hopefully they will find the best course of treatment for you,

[AngieB72]

Hi another PF warrior here, caused by Mixed Connective Tissue Disease. I’m 48 and was diagnosed nearly 13 years ago. I’m married with a cat, no children which to me is a blessing as I wouldn’t have been much use to them and I wouldn’t have wanted them to be my carers. I don’t do a lot as my gas transfer is only 20%. I take things very slowly and potter about. We normally have a cleaner but not for the past year - I’ll be glad to have her back. My husband helps out a lot but he works from home so is busy doing his own stuff. We made the choice to both shield for the whole of this as my lungs are so bad and I have other conditions that make me extremely vulnerable. We have only been out for scheduled medical appointments since last March 13th!!! I think I’m quite used to doing very little now 😊

[HighGables]

Hi Anna, I’m a good 5 years with my IPF. On oxygen 24/7 and very limited mobility.It is very frustrating especially as I was a real whirling dervish and didn’t sit still. However, this is now, and I have to take each day as it comes. I’m grateful for the small achievements I do make. I have accepted what is happening to my body, and then I just keep on trying

to make each day work.

We all have blue days, and that is just one of the things this forum is great for.

I hope you can think if something nice that happened yesterday and I wish something nice for you today too.

Take care 🐶💕. Jax. x

[Bournemouth-belle in reply to HighGables]

Jax thank you for responding Yes have lovely memories of yesterday Mothering Sunday being spoilt by my family. Today the sun is shining and looking forward to getting out in the garden.

Like you usually take each day as it comes, just odd times I cannot get myself motivated to be proactive. Like you had been very active before onset, now I feel like a sloath 😜

[Aingeful]

I was diagnosed with IPF three years ago. My oxygen sats are usually around 92 but I'm not on oxygen.Walking anywhere makes me breathless so I just take it slower and tend to go out when my daughters are able to take me.I live alone and do as much as I can with the help of carers who do three hours a week and do the heavy work, mopping,vacuuming..etc.My lung damage was caused by my autoimmune system due to Anca Vasculitis. It also attacked my kidneys. I am on Rituximab,prednisolone,evacal,iron injections and folic acid and some sort of stomach protector. Up to last spring I had never taken any medication for anything!I get very down at times but as my daughter says(annoyingly!) "it is what it is "!!

[Bournemouth-belle in reply to Aingeful]

Thank you for responding, All these messages help me know I’m not the only one dealing with PF. Just wish there was a local group to offer tips and just somewhere to exchange how you feel with a like minded people.

[Suzie42 in reply to Bournemouth-belle]

I so agree with you, but fibrosis isn't very common, when I talk to anyone about having IPF they have never heard of it. The best way where there are a few people with this disease is here on the forum.

[HighGables in reply to Bournemouth-belle]

Hi Ann,I belong to a group called West Kent PF Group.

There are many of them around, mine is quite small but everyone has PF.

I found out about this through Action for Pulmonary Fibrosis.

You can call them on

01733 475642 or email

[e-mail]

They can give you the contacts for a group near your area. We met, before Covid, every two months.

My daughter used to drop me and my oxygen off, but most people bring a husband/wife or carer with them.

I hope this helps and you managed to get out in the garden. It’s been raining here, but the birds are keeping me amused.

Take care, Jax. x🐶x

[jmsutt73 in reply to Bournemouth-belle]

I haven’t been on here in a while and I am so glad to read these comments. I have IPF. Diagnosed in 2018, I began having symptoms in late 2016.. it was suspected then but not certain until 2nd HRCT was done in 2018. Began taking Ofev a year ago, when HRCT showed beginning of progression. It stopped the progression. Feel fortunate for that. I can’t walk the Malls far without having SOB. My portable is pulse and weighs just less than 5lbs.. I think it sometimes hurts me more than it helps. That 5lbs gets heavy real fast. When sitting, my oxygen stays above 95, and I am just now beginning to look for a mobility scooter. Any suggestions are appreciated. J

[Aingeful]

After lockdown ask your GP if there are any Pulmonary Rehab courses you can go on.They are for all lung conditions but I found them very helpful.

blf.org.uk/support-for-you/...