Choices

[Currygirl]

Hi again I have a dilemma going on in my head I'm not far off going to have knee replacement surgery and because I now have pulmonary fibrosis I'm thinking is it worth it because there's no cure for it and its just getting me down x

[Oshgosh]

hi, I understand how you feel now,but you could possibly think again.

Perhaps if you get your knee surgery,it will enable you to exercise,which will benefit your lungs ?

I have interstitial lung disease and rheumatoid athritis.

I have managed to cope for the last few years.try to work out to keep myself a bit healthy.

I go to the gym,do only light stuff,nothing ambitious- I’m the one with the oxygen concentrator,I carry it in my Walker,which relieves my back pain.

I was worried about what people would think at first,now I don’t care.

I try to go for a walk daily if the weather is ok.complete with Walker and oxygen.

Sometimes I don’t want to go,but Try to push myself

I still struggle with my health and get discouraged , but try to keep going ,as it’s good for my joints and for my lungs. I’m 71 and my retirement isn’t going as I anticipated,but I try to keep going.

Whatever you decide,good luck

[Currygirl in reply to Oshgosh]

Thanks for Your encouraging response I also have an oxegyn concentrater but never been out to use it I'm also just 72 and worried about using the oxegyn thing people will stare x

[Oshgosh in reply to Currygirl]

I appreciate what you mean about people stare when I’ve got the oxygen on,but like I said I just stare back,it doesn’t really matter what they think.

Along with the Walker I must look a right crock,but it means I can get out and about.

Big problem is I’ve got shouldersthat can’t carry much and I find the concentrator too heavy. So the Walker is a godsend.

I don’t know how much longer I’ve got,but I want to be as well as I can to enjoy it.

Saying that My life is different now.I enjoy myself in different ways ,I’m much quieter than I used to be .we don’t mix like we used to since Covid.take care

[Tykelady in reply to Currygirl]

Like Oshgosh I have an oxygen tank and walker when I go out. It can have it's disadvantages in cafes etc but without it I would be housebound and most people are pretty good about moving out of the way. Only you can make the decision about the operation but do compare it to the pain filled time you are facing without it.

[Alberta56 in reply to Currygirl]

Let them stare. They need to learn that there are people who rely on oxygen to be able to live a reasonably normal life. They've had to get used to scooters and electric wheelchairs on their streets and guide or assistance dogs.

[Currygirl in reply to Oshgosh]

Trouble is I keep thinking is it worth having the surgery if my life is short

[B0xermad in reply to Currygirl]

Life is for living for your own self worth, it is a dilemma about a knee op which is difficult enough without lung conditions, you owe it to yourself to live as best you can wit a quality you would like ❤️

[Alberta56 in reply to Oshgosh]

You are a wonderfully positive and encouraging lady. Thank you. xxx

[Millyboo710]

I had a total knee replacement coming up to 10 years ago. Best thing ever! No more pain.

For the past 18 months, I have been on oxygen 24/7 and have a portable concentrator for going out. At first I was very self conscious but now I don’t even think about it. I get the occasional stare, but I give the person a big smile and they usually smile back.

Go for both the op and taking your concentrator out! It will do you the world of good! Good luck!

[katieoxo60]

Hi there I agree with others a successful knee replacement will make you more mobile after rehab from op and lung conditions do need exercise on a low level. . I have multi joint arthritis and other health issues but still run my own home , with all health and disability you need to adapt to continue a reasonable active live and these kind of illness do have flare ups ,bad and good days ect. The word push is what counts , do little and often and you can often rebuild your strength after an op but don't expect overnight miracles and you have to be flexible, examples I have a recline chair , an electric bed , heat pads for pain warmed in the micro, special knives, walk in shower, flip taps. Stairlifts are a godsend to many, I find crutches are more comfortable and have been walking at a slower pace for about 20 years. My main obstacle is steps , so I have to be extra cautious have a bar on the outside for step s to my home and in and out of doors. Another tip is wearing incontinence pants when going out just incase you can't get to toilet quick enough. They make all day ones now. Main thought should be adjust to fit your health needs even around the house, here in the midlands we have a bus called Bus on demand it is similar to a taxis service and allows people to be picked up at their home but is much cheaper. you need to ask questions about how to manage your own health but given time you will learn what makes it easiest for you and what to avoid that is beyond yopur possibility. Best Wishes.

[Izb1]

Ask yourself Currygirl, If I live for another 5 years can I live with this pain daily, if the answer is no then go for it, you have everything to gain and only the pain to lose. More than anything dont give up x

[Alberta56]

Good luck, Currygirl. You may have more time left than you think. Will the knee op help you make the most of it?

[tomc]

WHATTTT!! Not worth it? of course it's worth it, 72 IS TOO YOUNG TO THROW IN THE TOWEL.

You have a lot of living to do yet and eben PF won't stop you.

Go for it and look forward to a more moving life Both for your knees and PF.

[Mavary]

is it Pulmonary Fibrosis or IPF. There is a difference. I know a lady who’s still here after at least eleven years. She is still reasonably fit. So just Pulmonary Fibrosis is not a death sentence.

IPF is a different matter. If they’ve advised it and are happy to carry out the op I would give it a try.

Always ask advice though. Don’t sit there worrying.

[Currygirl in reply to Mavary]

Hi I'm not sure which one i thought I heard the word pneumonia or similar x

[MMaud in reply to Mavary]

Mavary, I have an IPF diagnosis. When discussing this with my consultant, she advised me not to read too much on the internet because it would all be doom and gloom. However, she was keen to remind me that a percentage of anything happening is mirrored by another percentage of it not happening, and that risk is risk, not certainty.

Apparently, there are folks in her unit who are long living IPF bods -well over 10 years in a couple of instances.

I am currently overseas for 3 months. We’ve been here a month now. I am extremely well and having a great time.

I have zero intent of sitting around waiting for bad things to happen or my health to crumble. I want to continue to live a full life, doing the things I enjoy for as long as I possibly can

[Mavary in reply to MMaud]

I don’t blame you either. My Husband had IPF and we had cruises and when he couldn’t go on any more we had wonderful holidays in this Country. Unfortunately he only had four years. When he was around there wasn’t any such thing as ten years. It’s fantastic how things have changed. However I understand that PF is a longer thing. He’s been gone now nine years on the 28th of this month.

[Karenanne61 in reply to Mavary]

❤️⚘️

[MMaud in reply to Mavary]

Mavary, I have no notion of 10 years. I want more than that. (Of course, what I want and what I get can differ enormously.)

My father had IPF in the 80s. He was predicted to last a couple of months, and did over 2years. His positivity and determination stood him in great stead.

When he was diagnosed there were no treatments. He was on some evil concoctions for his RA, which nowadays might have been formally linked with his PF, but those were different times, with different knowledge.

There’s no doubt it is a vile condition.

[Mavary in reply to MMaud]

nope no treatment for Mike either. It’s a cruel disease. It’s good news to hear that some have survived for ten years though. X

[Currygirl in reply to MMaud]

Hi there MMaud I admire your positiveness where are you abroad, what about the health care there I want to travel x

[Currygirl in reply to Currygirl]

Just seen previous posts and realised you are in Indonesia can you take oxegyn with you x

[MMaud in reply to Currygirl]

I am in Thailand. Healthcare here, if required, is good.

Thus far, I am not on oxygen, and my life is not impacted by IPF - save for the mental burden of diagnosis, and lots of monitoring.

I am very much a believer in a positive mental attitude.

One day, things may change for me, or I may go under a bus, but I’ll always try to make the best of my hand of cards.

[Currygirl in reply to MMaud]

Wow so beautifully powerfully xx

[Karenanne61]

I haven't had joint replacement surgery but my daughter has had a replacement hip and my mom a replacement knee. Both say it was worth it. My poor daughter had hers in lockdown so was very alone. My husband said dropping her off at the hospital and watching her walk in alone was worse than the day we left her at university.😪 Sorry, I digress, I wanted to stress the importance of physio. My mom in law had a new knee but wouldn't engage in physio so was still in a lot of pain. Good luck with your decision.

[MMaud]

One thing I meant to say up front it, is that for folks with co-morbidities, going for surgery, the decisions aren’t taken in isolation by the orthopaedic doctor, there will have been discussions, taking into account your PF and anything else you live with.

If the medics reckon it’s a good thing to do, in this instance I’d be grabbing the opportunity with both hands. You may find your pain and immobility is impacting your wider life more than you realise

[Currygirl]

Thanks but the only way each one knows is by what I say no one communicates and I only just about know x