IPF

Hi all. Wondered if anyone can give me some advice. My Husband is really struggling to get around and is not eating very well. He is also feeling the cold. his hands go white if we go out. He seems to be really going downhill this last couple of weeks. We went out today as he wanted to but have decided to stay in tomorrow as it is too much for him. He doesn't have an infection so I can't say it is that. I am getting worried. X

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  • I would be speaking to the doctor or the visiting community matron if you have one visiting you at home Mavary.

    Just explain the symptoms experienced that you have mentioned here and hopefully you will get some extra care for your husband, perhaps the nurse should be visiting more regularly.

    Today was sunshining, tomorrow's forecast not very good so perhaps a good day to stay in the warm.

    Take good care and hope your husband is feeling better soon. Plenty of hot drinks.

    Best wishes BC

  • Hi Blakey. My Husbands Palliative care nurse is ringing on Monday so I will have a word with her. This is just more than usual though. A month ago he could walk through our corridor out to the car. Now he has to go in a wheelchair. He gets so out of breath with just going to the bedroom at night or the bathroom. He has been put up to 5litres of oxygen ambulatory and two when doing nothing. If he doesn't have it on his oxygen can drop to 70. When he went on steroids both times he has had it he has began to eat properly or as he used to. A couple of weeks after taking them he is refusing food. I am giving him food which he would normally love but he doesn't want it. I know this is progressive but I wish it would slow down. X

  • Ask the Palliative care nurse to come and check your husband or arrange for an out of hours doctor to visit. Ask for nutritional food supplement drinks, like fortisip, maybe he prefers liquids than solids, complan, smoothies, if his breathing is difficult and that is why he is not eating he needs to eat little and often instead of normal size meals. Please speak about all these things with the medical professionals, just repeat what you have said here. Also phone the BLF helpline for further guidance on this situation (helpline is open normal working week days, between 10 am and 5pm, click red balloon top right of this page for contact details)

  • get off steroids(prednisone especially) destroyed my wife,s health.go to loww dose antibiotics250 mg daily. good luck , dacour

  • Good thinking Dacour. I am on low dose antibiotics because I have a kidney stone and it causes water infections. It could work for my Husband to stop him having infections. I will put it to the Palliative care nurse tomorrow. Thanks! X

  • Try not to worry which I know is hard but worry won't help anyone, let alone yourself. BC's advice is good. The not eating thing will definitely have an impact on hubby's health and well being, and that would be my first thing to try and improve. I know from my own experience that when my appetite is poor, my lungs are correspondingly poor. A little of his favourite food to tempt him back to eating! Take care. xx

  • Hi Scrobbity. This is what I am doing all the time but its not working. I know what he likes and I do him that but he doesn't want it. If we have lunch for dinner time. By tea time he will say he doesn't want anything. So I try to have dinner at dinner time. His breathing is getting worse as well despite being put on higher oxygen. We have the Palliative care nurse ringing on Monday so I will put it to her. X

  • The eating thing is such a difficult issue and I know it only too well sadly. The steroids whilst being wonderful and giving you an appetite are dreadful when you stop because that appetite just vanishes. All the things you might wolf down with relish do start to taste like cardboard. I go with an orange flavoured jelly which more often than not gets the juices flowing plus its easy and quick! I seem to crave for something with a bit of taste after steroids. Chin up lovely. :) xx

  • Thanks Scrobbity. I have got an orange jelly. I will try that. X

  • We all need to rest up sometimes Mavis and that way we come back stronger. I've noticed my fingers are going numb and white out in the cold which is new to me. Try not to worry although its difficult not to in these situations.

    Have a rest day and then get back out there as keeping moving is so important to all of us with this disease.

    Tony x

  • Hi Tony. It's about time you got put on that transplant list. You don't want to get as bad as Mike. He is getting worse. I know everyone is trying to make me feel better but it is a fact. His hands look as though there is no blood in them sometimes. I've noticed it before in the last couple of weeks. I've tried tempting him with food but it doesn't work. He can't move very far. Just going to the bathroom and he can come back in gasping. I have to do everything for him including showering him and dressing him. If he hasn't got his oxygen on it can drop to 70. All in all it's not looking good. X

  • Hi Mavis,can I hop in here? Why arent the nurses coming to shower him etc? You should not be left to do it on your own.Over here we have the blue nurses,or Anglicare & a few others,whom will visit daily,& do these things,especially if having palliative care,there is no charge if you are on a pension.Please do take advantage of these,as you need to keep strong yourself.

    I do feel for you both,& without being dramatic,the grieving does start earlier, when you are aware of the outcome.

    Take care, lovely lady,thinking of you,Love Wendells xxxx

  • Quite right Wendells, these services are available in UK, its accessing them.

    Mavis you need to speak of everything to the medical professionals about your husbands needs and symptoms, I agree with Wendells you cannot manage all these things yourself. Ask your doctor or the palliative nurse to arrange for someone to come and speak with you personally and to assess the situation.

    Start making a list from what you have said here and then you can go through that list with the medical professionals, just ask when you say the things on the list:

    " - What help can I access to help this situation?

    - Will you (whoever you are speaking with) arrange this for me?

    - Will you give me a contact number I can ring should I not hear from any one

    concerning these matters? "

    I am sorry the system seems to be falling down for you at this time, but I hope after speaking with those professionals who can help you will soon be finding things much easier for both you and your husband.

    Take good care BC

  • Hi Wendells. Thanks for that. I don't think he would like someone showering him. It may be that it will have to come but at the moment am ok. I have been offered help but I have said I can manage at the moment. I must admit we had one of my sons this morning with his wife and two small children. I had to go to the shops for food. Then I cooked a lovely roast lamb dinner and finally I had another son come in with his wife and my Granddaughter. By the time they went I had all the dinner things to wash up plus all the cups from drinks. I was ready to drop after. It is lovely to see them though. You're right about the grieving starts as soon as you know about the disease and really kicks in when they say how long can be expected. Are you ok! I hope you haven't had any more breathing attacks. Love to you too. Xxx

  • Hi Mavis,breathing attacks only @ night now,every 2 hours,might go for a sleep study,will ask the Doc.next time.

    Can understand your hubby not being comfortable with someone else,you can request a male nurse,if he'd feel better with that.

    Had to smile at your cooking the roast for family,something I do,BUT they do wash up for me in return! Bought that rule in,a little while back,when not feeling so good.

    Glad help is available for when you need it.Dont run yourself down,then you're no good for him or yourself.

    Take care love Wendells xxxxx

  • Hi Wendells. That's not good if you are having those breathing attacks every two hours at night. When I said I did a roast it was just for Mike and I. I had to wash it up myself. The boys came to see us between our meals and I had lots of cups to wash up as well. I have had a really busy day today. I will be glad of a rest tomorrow. I am going to do a bit of retail therapy. Mike is going to the Hospice so I will look at the shops till he comes out. I hope they sort you out soon. Mike had a bit of a breathing attack this morning but it wasn't as bad as he has had before. He went for a sleep study and that is how they found out he had sleep apnoea. I knew before he went as he used to rattle the house with his snoring and he would stop breathing for about thirty seconds. How's your weather now? Is it still hot. It's too cold for Mike to go far now. I can't wait for it to warm up. Well I must go. Let me know how you get on. Mavis. X

  • Try to avoid going out when the temperature drops below 6 degrees. He should breathe through a non-fluffy scarf whenever he can. Nourishing soups and milky puddings are good when appetite is poor. Hope things improve quickly. x

  • Hi Toci. The only thing he does seem to like is fruit and ice cream. I did some burgers from Sainsbury's tonight with chips and peas. It would have been a real favourite a couple of months ago. He didn't eat hardly any of it tonight. He said the burger was dry and he only wanted five chips. I had the same and it was lovely. I gave him apple strudel and custard after but he didn't eat much of that. He won't eat soup. He has rice pudding occasionally but as he is now I can't see him eating much of that. I just don't know what I can give him. I just have to keep on trying. Thanks for posting. X

  • Hello Marvary you must be beside yourself with all this worry,and why wouldn't you be.perhaps at the moment re his food little and often might be easier for him to manage what about some milkshake with fruit and ice cream do you have a wizzer or liquidiser ? A small cup every now and again,there's always the buildup drinks that have all the necessaries in don't know what they are like mind?maybe make up a bowl of fruit salad if this is what he is preferring at the mo little milk shake and if when your doing for you he might only want a child's portion at the moment,sometimes when your struggling to eat and a full plate of food is put in front of you ,can be a bit overwhelming to the point of not wanting any of it.So difficult Marvary for you,just know you are doing all the right things you are able.His mouth might be feeling really yukkie at the mo which might be why he is enjoying fruit.Takecare roll on Monday when you can have a chat with your nurse eh!(((Marvary and hubby))) Janexx

  • Thanks Jane I am getting some lovely ideas. I will try anything to get him eating. He has always been a big eater and I have had to control what he had. He was 17stone at one time. He is now 13 and a half. I never thought I would be encouraging him to eat. X

  • Hi

    Your husband's situation sounds exactly the same as my father has been throughout December. On Dec 5th Dr thought he had a chest infection and increased his steroids and put him on 2 weeks of antibiotics. Dad had no real signs of an infection other than going off his food (eating only 2 mini sausage rolls on boxing day and that was after persuasion from us) and feeling worse and struggling more. After the course of tablets there was only slight improvement and within the week his appetite had got even worse and he started to have difficulty to walk at all. On 27th December we had the Dr out again. Dad was admitted to hospital where they said he had low potassium and an infection. Dad had not been coughing up any nasty mucus or have a high temperature. Apparently the blood test they do in hospital shows a marker for infection which should be below 10 and Dad's was 73! Having been in hospital now for over 2 weeks his marker was at 3 on Tuesday when the antibiotics finished. Within 3 days of the antibiotics finishing he doesn't seem so well again,although he is back on his feet, has a better appetite and can just manage to get to the washroom with difficulty and exhaustion. They are now slowly reducing his steroids. So we are waiting to see what difference that will make. The Dr has told me that this is as good as it is going to get for Dad. We now have to get Dad's care increased so he can go home.

    I'm sorry this this is not a good picture to paint but I know that any information is usually welcome and helps us to understand things and maybe be prepared for what is to come. We have had no information about how this lung fibrosis progresses and what to expect. I only signed up to this site last week when I was in the same situation as you are in now.

    It is good to know we are not alone as caring for someone who is ill can make you feel very lonely.

    I hope you have some plans to look forward to in 2014 to keep your spirits up.

    Don't forget to take care of yourself.

    SAL

  • Hi Sal. That's what I'm afraid of. I think it was only the steroids making him eat. I need to know everything I can so I'm prepared. I understand where you are coming from. You do feel lonely looking after a loved one. Even though I have children( grown up ones obviously ) it is still lonely. I am his sole carer. It isn't a good picture and I know what is ahead of us. I have read and read different things and it still comes to the same outcome. I would do anything to change it. . X

  • I can't add any help to what the others have said Mavary except my heart aches for you and you are both in my thoughts and prayers.

  • Hi Suzy6. Thanks. I appreciate all your messages. We have been together what will be 52 years this June. X

  • Oh bless. Us 53 years this March. Never thought it would last after stormy first 5 years.

  • Hi Suzy. We are a couple of old crocs now although I was only eighteen when we got married. There were several times I could have walked out. When we came back from our honeymoon we had an argument and I started to pack my case. Of course he wouldn't let me go. It's too easy nowadays. One argument and they are off. It's worth getting over it. We have had a lot of very happy years together. X

  • So so true. We have had many happy years, shared memories and achievements but I must say a fair few unhappy hate each other ones too.

  • Hi Suzy. I think it's natural to disagree in a marriage. If you agreed about everything life would be boring. Even now I say things to my Husband and him to me that make each other cross. At the end of the day we can't do enough for each other. It proves we were right for each other or we wouldn't have stayed the course. X

  • When I was in hospital with a really bad infection I went right off food, all I could face was ice cream. They tempted me back onto food with high energy milkshake type drinks, after a couple of days I felt I could face real food in small doses.

  • Hi Moneal. I have got ice cream in and I do give him it. When I was really ill I fancied tinned tomatoes on toast. I gradually added cheese. I still have it from time to time. I did some nice roast lamb with all the trimmings for dinner. I had a lot of moans that I put too much but he ate about two thirds of a normal plateful. I did cold custard with peaches after and he ate all that. I bet he won't want any tea though. X

  • Hi Mavary, I know just how your husband feels as I am struggling at the moment too and find going to the toilet a real chore. It is a real effort to get out but when my husband takes me in the wheelchair I feel better afterwards.I find that soup goes down well and usually just have that for lunch. I am afraid that if my husband didn't cook I wouldn't be bothering. Jelly sounds good. We have it with mandarin oranges in it which go down a treat. It is an awful disease which there doesn't seem any help for.I was worried about how it would end as struggling to breathe is awful so asked the consultant and he said you are given something to put in your cheek to relax you. I have seen on this site that someone mentioned it so perhaps you could ask about it. I try not to contemplate it but sometimes no matter how much you avoid the thought it still comes back. Tell him that people are thinking about him. Keep fighting and hope for the best. The last lines of a poem I like say " To hope 'till hope creates, out of its own wreck the thing it contemplates" Called The Phoenix I think. God bless. Popplewell

  • Hi Popplewell. I have something nice you may like to try. Make an orange jelly with the juice of a can of mandarins. Top up with water to make a pint. Put the mandarins in a dish then cover with the jelly. Cool then set in the fridge. When set make up a chocolate blancmange, pour over the set jelly then cool. Put in the fridge to set. When ready put a few chocolate drops on the top. It is then ready to eat. I will be making my husband this tonight. He won't resist it I hope. I think I was the one who mentioned Lorazepam which goes in you cheek. My Husband has them for when he has an attack of not being able to breathe. It's a bit like a panic attack. Very scary at the time. The thoughts are with us all the time. It never goes away. Every time something is different I'm thinking oh! Oh! I will definitely be fighting for him. He can moan at me as much as he likes about food but I will never give up trying to tempt him. Thanks for the poem. I will look it up. Take care love to you both. Xxxx

  • Hi Mavary, We do the jelly with the mandarines and juice but not tried the other. How is your husband today? It is sunny here (but cold) but the sun does cheer you. My husband is taking me to a garden center for lunch and a look round. Feel a bit better actually but appreciate having the wheelchair, and my husband! Luckily for me I am five years older than him but hate the thought of leaving him alone. What can you do?? He has brought me some daffodils. I know they are forced but lovely all the same. Regards to you both. Popplewell

  • Hi Popplewell. We haven't been anywhere today. I just think it's too cold for him. We use the Garden Centres quite a bit. You can drive straight there and usually have a good meal or maybe a coffee and a cake. My Husband hasn't been too bad today. He had a bit of a breathing attack this morning but not as bad as sometimes. He's still not eating much. If he eats at lunchtime he doesn't want anything by tea time. We had a tin of chicken soup between us at lunchtime, a yogurt and a small piece of Christmas cake. We had a late dinner tonight as I have been a bit tied up today. I did some sausage mash and peas with onion gravy. It was really nice. He hardly touched it. I did pineapple chunks with ice cream after and he ate that. I will have a day off tomorrow as he is going to the Hospice for the day. I spend the day shopping till he comes out. I don't like him going really as it is a day without him. X

  • Hi Mavary, Don't feel bad about a day off. I worry about my husband having to do almost everything although we do have a cleaner now. I enjoyed the morning out yesterday but didn't look at plants as it was so cold. Feeling tired today, I do seem to have a day up and then a day down. When I think that five years ago I was running about helping everybody, packed up house and moved to Shropshire, then unpacked again. This thing just seems to come out of nowhere and pick on you. We just have to keep on keeping on don't we? How does your husband fill his time? I do jigsaws a lot and read a bit although I can't read any old rubbish. I am sure he is really thankful you are there as I am with my husband. Keep smiling. Popplewell

  • Hi Popplewell. My Husbands hobby is very strenuous. He sits in the chair and watches TV all day. Ha! Ha! I love puzzles and have collected about thirty something of Thomas Kinkade ones. I love reading as well not that I have time now. I like either funny ones like Sophie Kinsella's Shopaholic or romantic ones or then again Christmas stories. Five years ago we were out and about or off on holidays all the time. We don't go too far now. I've had an awful day today. I took Mike to the Hospice for the day. One of the nurses took me to one side and was asking me about Mike. I told her he is not too good and is not eating. She said she would check his obs. She then asked if we had thought about a will and pointed out that they had seen a difference in him since Christmas. I felt really depressed when I left. I went shopping in the town. I went in a shop and bought a present for my two Granddaughters. For their Birthdays. I walked down the town further and went in another shop. I bought a couple of things. I went to pay and horrors! I couldn't find my wallet with my cards. I searched my handbag I imagine six times. I went back to the first shop and they didn't have it so by now I was panicking. I went to my husbands bank and cancelled our joint card then I went to mine and cancelled them. I had no dinner or drink and it was time to pick my Husband up. We were on our way home and I checked my handbag yet again this was after we had driven to the police station. I put my hand in what I call a secret pocket which I had forgot about and there it was. You can imagine the relief. The only thing is I have to wait for my new cards. When I picked my Husband up I asked him how he was. I could see he didn't look well. He said he wasn't good and when I asked if he had eaten any dinner he said just a couple of mouthfuls. When we got home I tempted him with some pineapples and ice cream. I then cooked myself some bacon egg chips and baked beans. It was something quick and I was starving. I told him I had too much bacon and would he like a bacon sandwich. So he said he would have one piece of bread and he ate it. I think he has an infection somewhere although he doesn't have a temperature. He said he has a bit of a cough today. I have started him on his antibiotics and given him some paracetamols. He was feeling a bit better after a while. I think I will call the Dr tomorrow. Hope I haven't gone on too long. I have been really wound up today. X

  • Hi Mavary, Of course you haven't gone on too long. God it is awful losing your cards isn't it? You have to wait so long for new ones and then have to remember a new pin number. Sorry Mike is so bad. I worry about the future , wonder how long I have and how I will cope. I do jigsaws all the time as it takes my mind off myself a bit and I forget to cough!! I pick them up at a market where they only charge 40p and a lot of them are really good. I do buy new ones too and I am afraid I have a loft full. I read too but these days only read detective novels and then only specific authors. I do hope Mike improves a bit. Every day is a struggle isn't it? Keep going. Regards Popplewell

  • Hi Popplewell. You're a lady after my own heart with all your jigsaws. I've got a few in Car Boots. They usually charge one to two pounds. Thomas Kinkade ones are really special. They are beautiful pictures. The ones I like best are the snow scenes. It's good that you have found something to take your mind off things. My Husband loses himself in TV. That's his escape. He worries the same as I do. Every time he goes down with an infection I worry if it will be the last. I phoned the surgery this morning. The practice nurse rang me back. I told her my Husband is not eating much and is generally not too good. His temperature was slightly up this morning so I told her that. She thinks I've done the right thing by starting him on his antibiotics and said if he's no better by Friday, give them another ring. Hopefully he will be better by tomorrow. Take care. Mavis. X

  • dear Mavis you sound as if you are coping really well but you should have a carers assessment from your local authorities social care you have needs too. Keep your chin up we are all thinking about both of you. by the way I have just started buying gibson puzzles struggling with one at the moment.

  • Hi Hopetorun. We are coping at the moment. If it gets any more difficult I would think about it. I do get days when I'm run off my feet but that's not every day. I have a son that would drop his hat to come and help. I see you like puzzles as well. Gibbons would be my second choice. They have some very good ones of places we have been. I did the Padstow one and another Cornish one but I don't remember which. I did After The Rain which I believe is another one. I haven't done any this year as everything has changed. I find it so relaxing though. I draw and paint and read. I also find that relaxing. X

  • Hi Mavary, I am afraid that I sit and do jigsaws a lot and it is my husband who is kept busy. I like Ravensburger jigsaws. They are really well made and when you have finished you can pick them up like a picture and they stay together. I am not as keen on Thomas Kinkade, I have done a few but they are a bit wishy washy for me. I love scenes of places like Whitby, St Ives, Staithes etc. Makes you remember places you have been. I feel good today, better than yesterday, it is strange how each day is different. Cleaning lady has been too and beavered away for two hours so all is good. Regards to your husband. Popplewell

  • Hi Popplewell. I started to write to you but got waylaid. I can't find what I wrote so here goes again. I'm glad you are having a good day. It's all ups and downs isn't it? Mike has started to eat a little so I think the antibiotics have kicked in. I think it must be Ravensburg puzzles I have done. I remember St Ives Padstow and there are bound to be more. Are you having the awful weather we are having in Somerset. I have got the lights on and it is torrential rain outside at the moment? It's quite mild though. Take care. Mavis. X

  • Hi Mavis, Just taking a few minutes before Silent Witness comes on. Been a reasonable day although not done anything much. A bit of a 'nothing' day here weather wise although we have had some really bright days recently. Love Somerset, we are in Shropshire but only for the last few years as we are from Lancashire really. We took my daughter from Australia to Somerset a few years ago to look at gardens. I have a relative lives in Crewkern too. Small world. More tomorrow, Popplewell (Lois)

  • Hi Popplewell. How are you? We have had quite a busy day today. Everyone decided to come at once. The Palliative care nurse came in today and suggested my Husband goes on steroids again as he is not right yet. He had a fainting attack on Saturday and another today so we have put his night time oxygen up. That meant I had to take a trip up to the Drs. Is your Daughter still in Australia. You must miss her if she is. I have my sons living within twenty miles of us. I have one whom I see most days. I am going to miss him after today. He is off to feurtureventurer for a week. I don't know if I spelt that right.the others I usually see once a week. Have you done another puzzle yet. I must start. Mavis. X

  • hi Marvis my mum was from Martock and I stayed there every summer. I have always wanted to take water colour painting classes but with trying to keep fit and working I dont have much time to take classes.

    Hope things are continuing to improve Best Wishes Irene

  • Hi Irene. We live about 10 miles from Martock. I love the old houses there. I went to a drawing and painting class a few years ago. I've got all the things to take it up again but not the time. Before my Husband was ill we were always off somewhere. Even in the winter we would go somewhere so I never had time then and now I am too busy. I have kept saying one day. There is so many things I would like to be doing but one day. Sometimes I think my Husband is improving but then he will go to the bathroom and is fighting for breath. I worry about his pulse as it is so high. Have you had a good day today. We had a houseful all at once lunchtime. The oxygen man came in then my son turned up with my Granddaughter, then the phone went and it was the Practice nurse and lastly an old friend of my Husbands turned up. My son had brought us fish and chips so we just put them in the oven till it was all quiet. Well I hope tomorrow is good for you. Mavis. X

  • hi Mavis

    I do feel a little lonely at the moment as My husband has gone away for four weeks to Tunisia for a holiday. He is older than me and wants to make the most of his life he is 67 and I am 54. so I have to keep working. I have never lived on my own and I am the sort of person who likes to have people around. I am keeping busy doing house work and some things that need doing around the house. I think with me being ill and off work for nearly three months he has Probably had enough of me. (he has become a bit of a monster ) so I am glad he has gone away. He rings twice a day. He worries about my chest problem but I have had it since a child and my mum was the same so I am used to it. He keeps woryring that I am Going to die but I am not that easy to get rid of. One of the reasons I dont get too bad is that I dont panic about my condition just get on with things at my own pace.

    On a more cheerful note the weather In Bournemouth today is beautiful. It is so uplifting to see some sunshine I hope its shining on you and your Husband Too Best wishes Irene

  • Hi Irene. It's awful to feel lonely. I know there is a lot of people to talk to on here but it's not the same as someone close to you in person. This holiday your husband is having could do him the world of good. It already sounds as if he is worrying about you. Maybe he felt trapped and was reaching for his freedom. The trouble with that is he is now probably as lonely as you are. You may find a different man when he comes home. What a lovely place to live. We stayed in a hotel down in Poole where the ferry goes past. It was last year. We stayed in a flat at the top of the hotel. We travelled all around and found places we had never been before.i have a cousins Daughter who has moved to Bournemouth in the last two years. She is always posting lovely pictures of the beach. If you want to chat anytime I am here. Take care. X

  • Many thanks Mavis.

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