My typical day with IPF

[simbanine]

Hi folks

The sun is shining on the south coast at last; lifts the spirits to be away from the constant greyness for a few days.

Anyhow, I thought i'd write these few lines to invite feedback from others with IPF to see if their daily symptoms are like mine, and indeed to see if anyone can offer tips for making life easier. Don't get me wrong as I live in a beautiful small Dorset coastal town and I look out over the rolling downs all the way to the top of the cliffs. I also have a lovely garden full of birds to watch which I have cultivated these last 40 years although I am not sure how I will manage this year. The only downside is getting to and from the nearest hospital for appointments.

So, down to basics. I was first diagnosed 4 years ago at the age then of 72 but the consultant reckoned I'd had it for about 4 years so was a slow burner. 2 years ago my lung function tests showed I was ready to try the "slowdown" drugs but he could not prescribe them so it meant an even longer journey to Southampton. Cutting a long story short I had bad reactions to both so a year ago I was kicked off them and transferred back again, having been told my lung function tests hadn't changed which I found hard to believe. After a number of postponements I got to see the consultant 2 months ago and was in and out within 10 minutes without any tests or real consultation. I subsequently had another lung function test but all they had to compare with were their own of 2 years ago. I then got a copy of the letter to my GP saying I was clinically stable and the tests showed a slight deterioration but I might benefit from ambulatory oxygen. Funny, I had been on it since August as approved by the same consultant and had the flask with me when I saw him as I had questions reference it. I have since seen a copy of the function graph which looks a bit like the shares in so many high street stores of late.

Since then things have moved on and I now have 9 litres per second piped around the house with support flasks as I struggle to move around without it. This has all been organised by the support tear at the hospital who are absolutely marvellous as are the oxygen suppliers.

So down to the typical day. I am on a low flow of oxygen all night and must admit I don't get up as early as I used to do. Everything is OK until I do get up and the I hit the first mini crisis of the day as soon as I go to the bathroom. If I don't turn the oxygen up to 9 my levels will drop from about 96 to the low 70's and the pulse will go up to the high 120's. Even on full flow they still struggle to stay stable so my morning ablutions and dressing are a slow affair! Also I get regular nosebleeds (not bad ones) from the use of oxygen. Gone are the days of being able to soak in the bath due to changes in humidity levels and even showers are not that easy.

Once the levels return to near normal I jump (sic) on the stair lift and go down for breakfast, I find it easy to sit bolt upright when eating and drinking and to keep a flow of about 2 litres so as to avoid choking. Afterwards I can cut out the oxygen for a few hours as long as I am sedentary (no problem at present as it is too cold to go out and there is generally cricket on from Australia).

I am lucky that I am still involved in the family business and most days can do 2 or 3 hours work from home which keeps the mind active, although later in the day I invariably find myself nodding off. It will be nice when the weather warms up enough to get out on my scooter and to doze by the garden fishpond in the shade. Also to get taken to the seafront and watch the world go by; that's what I miss most at present, although my sons assure me it is still there waiting for me!

The long evenings are a drag as there is very little to watch on TV and for some reason I find I am needing the oxygen back on low. Also that is the time that the incessant cough seems to kick in.And so to bed which is the second mini crisis of the day. Down goes the oxygen level and up goes the pulse rate and evening ablutions and getting ready for bed is an effort but I eventually get there with the help of full flows and a good fan in the bedroom eventually I can get off to sleep.

Thankyou for reading my ramblings and any comments will be eagerly awaited. Best wishes to you all.

[Ergendl]

Sorry, I don't have IPF but I really appreciated reading about how you cope. All the best.

[Jomo46]

This was so helpful. I have sarcoid pulmonary fibrosis (ages 73) and on my first consultant diagnosis,2 years ago she said we can’t cure the damage, but can keep you going for years.( I was very fit until a virus of November 16

2 years on I have deteriated quite a lot. I’m on ambulatory oxygen. I walk at quarter speed to 2 years ago. Life has slowed down enormously. I want to discuss the likely progression . Our house is to be converted with a granny flat for my husband and me, then my daughter, and family will move in ( 5of them) I need to sort out all our extra possessions and pare down. I want to write a do not rescucitate and some treatments. I want to sort out the grandchildren’s inheritance from my father, where I am trustee until they are 18. My daughter will became a carer and work part time

I’m not at all sure how my next stages will be. More oxygen., wheelchairs,confined to bed etc and how long does it take on average. Do we convert the extra rooms for wheelchair friendly, hoists etc. Not even sure where to get advice from.

Another minor query, with glasses, cannula, and heating aids round my ears, I often lose a hearing aid. It flies off as I take the cannula off. Any suggestions?

I also find washing and dressing debilitating, but find a hot bath ( a big pleasure for me) loosens the mucus and it can run for a half hour or so- but easier to cough up. I also get a bad cough fit about 8pm after watching 2 hours of tv. I find I have less mucus problems if I don’t sit for too long.

What a barrel of laughs. Sorry. It’s so good to hear how others are managingo

So thanks for your letter. It’s appreciated.

Best wishes joanna. I’m

[simbanine in reply to Jomo46]

Hi Joanna and thanks for the reply. Firstly out of pure nosiness, why Jomo46 - any connection with Kenya? We lived there for 4 years at the end of the 60's (in Riverside Drive where those horrible shootings were this week). It used to be a beautiful floral road but looking at Google it looks so built up now.

Can't come up with any magical solution to the flying hearing aids - I imagine the worse bit is bending down to pick them up when you find them. We had to change our car as I had difficulties bending down to get in it!

The annex sounds a good idea. If it is not just ground floor put in a stair lift it has made a huge difference to me; also get a mobility scooter, anything to help with mobility.

I was initially self-conscious about using oxygen in public partly because it is only a small town and so many people know us but I have got over that now. I had a letter today from the consultant encouraging the use of it to ease strain on other organs.

The local hospital have arranged for me to have visits from the occupational therapist to see if there is anything else that they can help with which you might want to consider asking for. They are also going to send in the palliative nurse to discuss future treatments and home care as I only want to be kept comfy and pain free when the time comes and like you want a DNR on my records. The only other thing you might want to consider which I have done is to have a power of attorney in place with a trusted relative, but if so do get good advice first. In his letter the consultant explained the morning problems are down to "a change in lung physiology when changing position so is to be expected". That may also account for our coughing fits in the evening, or that could simply be just getting tired at the end of the day - I don't know.

Anyhow take care, and roll on the Spring. Regards, Mike

[Jomo46 in reply to simbanine]

Hi mike- no connection to Kenya. We lived in Cyprus 57- 60 and came back to live near bramhall in Cheshire. Funnily enough, our new neighbours had lived in Kenya, for the past 5 years. I also looked at our old house in Nicosia which used to stand alone - no real neighbours. As you found the road totally built up and all around.

I’ve had quite a good day today so am pleased. I like all your other replies from people- informative.

Best wishes jo

[Whitechinchilla]

Apologies that I cannot offer anything to help you. However I found tour post very interesting and I am amazed at what you manage to do despite everything. Keep fighting. And very good wishes for better health.

[Izb1]

Hi there simbanine. I dont have ipf but bronchiectasis and rheumatoid arthritis. After reading your post I will stop moaning and realise how lucky I am to not be on oxygen and have the daily problems that you face. Although you have such a positive outlook that I admire and hope that I can adopt if I find myself in that situation. I have a small garden and live in the city of Manchester with very few birds visiting nowadays, they used to line the rooftops when I was younger. Like you I love the seaside but sometimes its a hassle getting there and back on the train and dont visit in this dreary weather, so roll on spring. Keep your ramblings coming, its good to share . Irene x

[goat-lady]

Thanks for your post- glad u have family and things to focus the mind. I to have an interstitial disease - nothing in comparison to you. The morning difficulties are v familiar and the evening dip. Off to GP today to c if can modify my meds to help with these dips. Best wishes. M

[Margot13]

Hi Simbanine,

I have IPF too, was diagnosed six and a half years ago, I was 65. it was very distressing upsetting and we cried a lot as we were told I would have a maximum of five years to live. Over the years I participated in three clinical trials but the only thing I got out of it was the award of Nintedanib by the company I was trying Perfinedone and Nintedanib to see the reaction of the two drugs, it nearly kill me.

My health has deteriorated a lot, now because my lft was below 80% then the NHS taken over the tab and now the medication is delivered to my house instead of the hospital.

Now the effects of the drug is not pleasant, stomach pains and the runs, I have to be careful when I go out, I must be close to toilets because when it comes it's difficult to hold it, if you know what I mean.

I am on oxygen can't walk too far without it. Also I was prescribed Morphine but had problems with it as the two drugs didn't like each other and I was permanently with a belly acke, so I stopped the morfine.

The other problem I have is a terrible cough, when I have an attack I can't breath my insides hurt I get slight teeth and nose bleed and leaves me with a head acke. I get very breathless all the time, it's easier when I spent time seating down.

Apart from that I try to carry on as normal as possible, although it is difficult. I tried all the advice given to ease the cough but so far no good.

Well that's roughly what is going on with me and IPF.

I tend to keep how I feel to myself although my husband see how I am, I try to keep things away from him because he gets very upset about all of it. Sometimes I get very scared thinking how bad my end is going to be.

Thanks for your letter, it have me the courage to open up and get rid of some of my stress, and thanks for listening.

Kind regards

Margot

[simbanine in reply to Margot13]

Hi Margot and thanks for the reply. Our progression sounds so similar but I find this forum to be great comfort. You mention the stress and that is something that really does my head in. I have tried so many "remedies" but nothing seems to work other than, to a minor degree, meditation, so I just carry on with the relatively high dose of lorazepam. I got worried about the amount I was taking so spoke to my GP who said he would not normally sanction such high levels but in my case calmness was very important so to carry on (within reason). Roll on Spring - sunshine is the best remedy for so much. Regards, Mike

[Comino2]

I do not have IPF but I can identify personally with the morning and evening ablutions ordeal and also mourn the loss of the long soak in the bath and now have sadly enough bubble bath to open a shop thanks to well meaning gifts from friends at xmas !! pretty chilly I imagine on the seafront this time of year,it is down here on the south coast, Be kind to yourself,sending best wishes xx