Just thought I would let you all know how my Husband is. I went down this afternoon thinking they were going to give him some treatment or change the number on his oxygen. It wasn't to be. They are now saying he is maybe passing out because not enough oxygen is going to his brain because the IPF maybe is escalating. He had a scan nine months ago and again three months ago. There was not much change in them apart from a couple of little new patches. I wouldn't have thought it would get so bad so quickly. I wonder if they are missing something.if it is that they are going to send him home with a management plan. I am having a fit because if he is on his feet when it happens he could fall and break anything. When he goes he falls like a stone. It is so scary. He could also die in one if his breathing stops.
Hospital. : Just thought I would let... - Lung Conditions C...
Hospital.
Hi Mav, have been following your posts about your husbands condition and his brave battle with this ghastly illness although I know little about I p f my heart goes out to you for the stoical way you are dealing with it.Much love and admiration.Bengunn.xxxx.
Hi Begun. I sound better in my writing than I really am. I am coping because I have to. Inside I am screaming and crying but I can't let it show. I have four Sons and I also have to be brave for them. They are hurting as well. Thanks for giving me the confidence of knowing it doesn't show what I feel. X
Thanks Bev. I hope tomorrow they will find something they can treat. X
Big hugs to you,you have so much to cope with,& your hubby too.Do hope the hospital comes good,& has a decent plan for you,do make sure you tell them of your fears of when he is even standing,& things happen.
Will be waiting to hear how things pan out,fingers & toes crossed for you,brave lady, xxxx
Hi Wendells. I will let you know. Thanks. X
Do speak with the medical team looking after your husband in hospital about your fears Mavary. Hopefully you will be assured and advised concerning precautions and help in relation to your husbands situation (( before )) the hospital release him. Also establish home care visits from the community matron or visiting health care nurse to help monitor your husband once he is released, I would ask about that at his time of release from hospital.
Keeping everything crossed for you and your husband.
Best wishes BC
Thanks Blakey. Already have. They are sending him home with a management plan. If it's a blood clot it will be Warfarin.
A terrible time for you I hope the doctors can find the solution soon, my best wishes and prayers are with you and your family.
Love Bethan.
Thanks Silversufer. X
hi mave having ipf myself & 6 months to live I understand what your husband going through I would have thought the hospital would be more helpful sadly we know with ipf attacks can happen very quickly hope your husband gets better .
Hi Teaky. This disease makes you feel so helpless. It looks like when you have IPF they hold back on things. Like they gave him an X-Ray. I asked the Dr if the X- Ray would show up a blood clot. He said " No " so why do it. We already know the state of his lungs. They did call in the Respiratory team and it was them who said they wanted a scan. I contacted the Respiratory nurse myself and she came down and said she will fight our corner. I think being in The Medical Assessment unit they are not specialised enough in what is wrong. He would be better on the lung ward.
Hi, I had an awful time in hospital on a general assessment ward - the doctors and nurses are just not knowledgeable enough about respiratory medicine. After I got to the point of signing myself out (for self preservation) they offered to move me to the respiratory ward. Don't be too nice! Ask why he is not on the resp ward and argue to get him moved. Get your sons involved too as, in my experience, doctors listen better to men (it's a power thing). .
mav the xray was maybe to see if there was enlargement of the right side of his heart as that is one of the problems that happens with ipf as the heart has to pump harder so it comes under the strain the heart may not be able to pump enough oxygen to the rest of the body especialy the brain which may be what is happening ask your consultant if this is what may be happening.all my meds exept salbutamol has been stopped as it is not working I am like you I am quite worried like yourself as I have had heart disease for 16 years,it is only meds for my heart that is keeping me alive but with ipf . lik you I was told about 15 months ago that there were a lot of things they could do but now they are not offering any treatment except oxygen & palliative care its a lot of pressure for us to have this on our minds. I urge you to find out if whats happening to do with his heart as there are excellent heart drugs that can help his condition good luck and hope your hubby gets this sorted out
Hello, Yes you do sound calm and in control. I admire the way you are dealing with it all. Take Blackey's good advise. Can someone go with you? I find it helps. Two heads better than one. Hugs XX
Thanks Suzy6. I like to go on my own as I can have a word with the Drs. By being on here I have learnt a lot and can argue my Husbands case. I have found some more information that I will put to the Drs tomorrow. They have probably already eliminated it anyway but it doesn't hurt to ask and it shows I am on the ball. Thanks for the hugs. I could do with lots of those. X
Hi Mavary, I'm so sorry to hear about your husband and the strain that's been put on you me and Fran are thinking of you both, we admire you trying to keep this to yourself but dont, Be very vocal to your GP and the hospital tell them you need help, Good Luck.Matt/Fran
Hi Mattcass. The thing is at home he is I won't say fine as he can't do anything but we are managing quite well. It's only the worry that he is going to have a funny turn and hurt himself. I don't know how they can help that. I can push him in the wheelchair everywhere but he's still got to get out to dress, undress go to bed etc. I can't see what they can do.
You are having a dreadful time - you are showing such great courage and dignity. I am not sure where you are getting your strength from - my admiration for you. All I can offer you is my sympathy and support. Possibly talk to the helpline they maybe able to help. You are incredible - your husband and sons are very lucky to have you. Please if you can - take care of yourself. With love TAD xxx
Hi Tad. Thanks for your message. I very much appreciate your kind thoughts.
Hi Stitch. That's a lovely thought. Thank you. X
I like all the others on here are so very very sorry to hear this news from you Mavary, you are indeed a brave lady , but I think you do need some help. Could you not discuss with someone the possibility of someone coming in each day to help you with your husband...Perhaps to get him dressed and washed and then to help you get him to bed. The social Services should be able to do that for you, ?
Hi Mavary, trying to be strong for your husband and also trying to be brave for your sons must be almost too much to handle. Not everyone has a wife/mother like you. Like Stitch, we would like to physically be there for you but we are in every other way. Hope you are grabbing all the help you can possibly get. xxx
Thanks Butterfly. I have had some more bad news from my Husband. It is the IPF that is starving the oxygen in his brain. Instead of a year well who knows. This has been three months since they said about a year. It's a very scary disease. They are going to give him large doses of Steroids to see if it will dampen it down. That is for three days. Then they will send him home on Saturday. It is only by talking to all of you that I can hold it together. I am trying even now to keep the tears back. I don't want to go to the Hospital with red eyes. That won't do him any good. X
Thinking of you and your husband this afternoon. Hopefully the steroids will help soon.
Hi Mavary.Dont hold the tears back once you stop crying everything looks a bit different, i know I have done enough crying myself just not the pain but thinking of what's ahead and wondering how i will cope or how will Fran will manage, she is like yourself a very strong woman me and your husband are two lucky guys.Matt
Hi Matt. Mike is worried how I will cope. I am the sort of person that just does. Your wife sounds very much like me. I feel a little better tonight. They are putting him on IV Steroids for three days to see if that will improve him. He is getting about quite well really. It's just this oxygen thing. He may be home on Saturday.
You poor girl. My heart goes out to you. How awful to get news like that. It's one thing on top of the other. You need rest to gather your strength and yes, like Mattcass says, to cry. Don't worry about red eyes. No one is more entitled to them! Sounds like the hospital are pulling out all the stops. Maybe the steroids will give your husband some respite.Take care Mavary xxx
Thanks Butterfly. You are very kind. You have all helped me so much. X
Hi Mavis, So glad to see your post as I was starting to worry about you. This IPF is such a trial and there isn't much information about it. You are being so strong and I am sure your sons appreciate that. I know you will want to have him home but at the same time it is scary thinking about the night times. Try to keep strong. God Bless Lois
Hi Lois. Thanks. It is scary but we have each other. That's all we need. If I do need help I have my sons and the Palliative care nurse will be only too happy to get someone for me. At the moment we are ok. Thanks again. Mavis. X
Very frightening for you and your poor husband Mavary and I truly hope you will get all the help you need. Good luck and wishing you and hubby well. xxxxx
Really feeling for you both, You have such a lot on your plate, all I can offer is friendship, and a listening ear, My love to you both. Heather.X
Well Mavary from your post, things don't sound too good, but although I cannot help I feel you need a carers needs assessment before you burst. Some practical help from the services would also bring you a chat each day and you would know some one was available in the event of a bad fall other than calling an ambulance. You need support in order to support your husband and family through this difficult time. Sorry this sounds very proper but my thoughts are with you I do understand what you are going through and the fears you have. You can only do what you are doing face each dilemma as it occurs and make changes as necessary, I feel you are doing great just like everyone else xx
Hi Katieoxo. Our Palliative care nurse has said I can have help if I need it. The only help I need is either someone to do the shopping or for me to go with someone looking after my Husband. My son is back from a weeks holiday on Saturday and is here practically every day. We only have a one bedroom apartment so it's not too much to do. If I'm really struggling I will ask for that help. I always know it's there. I think they are going to send him out with some kind of a management plan. I imagine rather than the Palliative care nurse calling us once a week she may come and see us more often. Thanks for your kind thoughts anyway. X
Hope all works out well for you when hubby comes home xx
So sorry you and your husband are going through such a bad time. I agree with all the advice already given but particularly that from katieoxo60. As someone who has IPF, I may well go through what your husband is currently going through but I would want to know that my husband would be getting as much help as he possibly could. I'm sure your husband wouldn't want you to be coping with all this on your own. Please get as much help as you can from whoever you can and take great care of yourself. I'm sure that will help to put his mind at rest too. XXX
Hi Mapal. I hope all this is not distressing you. It's different for everyone. I hope yours stays stable for a very long time. My Husband has had it for four years maybe five or six. Take care and thanks for your concern. X
Aw bless you for being concerned about me too! We all learn from situations like yours and from the replies that are given. We also get good information like that below from maggie44. That's something that may be helpful for me too. Take great care - you're doing a wonderful job! 
X
Very sorry to hear what you and your husband are going through. I have pulmonary fibrosis but also have pulmonary hypertension. This second disease can make you more breathless and contribute to less oxygen being transferred. It is not uncommon for these two diseases to be found together. Pulmonary hypertension can often cause people to become dizzy and pass out. The treatment is different and while there is no cure, it is possible to improve the symptoms. Has this disease ever been looked for in your husband's case? It would mean carrying out an echocardiogram in the first instance. There are specialist centres which carry out the detailed examination and treatment for PH, but my local hospital had been on the ball and carried out echocardiograms a couple of times.
I do hope you both get some help soon. Do keep asking questions, I know it may take energy you don't feel you have but many people's experience on this site suggests that you do need to sometimes be insistent with medical staff, while remaining pleasant and polite!
Good luck
Maggie
Thanks Maggie44. That was very interesting and informative. I have asked for a comparison of the scan from the last one. It was only three months ago so it sounds a bit quick for it to have got so bad so quick. It could be another thing for them to look at. I will bear that in mind when I go tomorrow.
Hi Maggie. I have spoken to the Dr and he said they have taken Pulmonary Hypertensin into consideration. He will probably go back to the Consultant and who knows. They are now keeping him in till at least Monday. It was worth asking. Thanks. Mavis. X
Hi Mavary,
I am seriously hoping that I can offer some advice that helps. I worked for several years as a Social Worker in a Hospital Discharge Team, before being bullied out of my job. Why? Because I blew the whistle on bad practice, a poor working environment, and staff that did not truly care about patients' needs. I saw MANY patients inappropriately sent home, with inadequate support in place. THIS certainly should NOT be happening to you and your husband.
Here are the things that I recommend you could try - I am only offering MY view of things, so you are not obliged to act on anything I say. I only hope that something I suggest here may be of use...
1. I take it that YOU have an awareness of the people that are involved in your husband's care. You need to be clear as to who you feel you have a good relationship with, and who may assist you in securing the best possible treatment and support. Make a clear note of who you feel comfortable approaching for help, and who you feel you can communicate openly and honestly with.
2. If there is a Respiratory Nurse involved, as you say, in your husband's care please do attempt to get this person to assist. If you are present at appointments, ensure that the Nurse is too, and that the Nurse can help fight your corner, or explain things to you.
3. If there is a Hospital Discharge Team available at the hospital where your husband is, insist upon having a referral made to them. Teams like this, if operating correctly, are there to ensure that patients are safely discharged from hospital, and that they are in receipt of all the services and support they require to ensure that their care remains both continuous, and safe, at home.
4. If there is no Hospital Discharge Team, then ask for referral of your husband to Adult Social Services. Put simply, your husband has complex, and multiple needs, and therefore should be entitled to a full assessment of these needs prior to discharge from hospital. Besides, he needs to be under the care of somebody (i.e. and agency) that can co-ordinate his care (generally the remit of Social Services). Social Services can become responsible not only for coordinating and ongoing care that your husband is made subject to by the hospital; they can also look at assessing, and providing for any other needs he may have once back home (e.g. if you need assistance to help wash/dress him, and suchlike). You can find a number for your Social Services in the telephone directory, or ask at the hospital.
5. If you are feeling overlooked at appointments, and feel that you are not being heard by your husband's medical team, you might benefit from advocacy and assistance (to help get your point across, and communicate your concerns). PALS (Patient Advice And Liaison Services) are available in many hospitals to assist patients and their families. They provide a range of services, from leaflets about various medical conditions and treatments; to sitting with anxious patients and families; to advocacy (somebody to assist you ate meetings). Look up your local PALS organization, and see if you can secure some help from them.
6. Request that YOU receive a CARER'S ASSESSMENT. Not only should your husband have his care needs assessed by Social Services, but YOU should also be assessed if you are expected to be contributing to his care. Many people are not aware of this right, and therefore they do not get the assistance to which they are entitled. A Carer's Assessment opens many doors! It may reveal entitlement to Welfare Benefits (e.g. Attendance Allowance). It may ensure that you are entitled to Respite Care (basically, if you need a break from caring for your husband, respite care of a variety of sorts can be used to facilitate this). Besides, once you have made it clear that YOU are aware of your rights as a carer, the hospital dealing with your husband may begin to treat you differently, and listen to you more (it pays to be "clued up").
7. INSIST that your husband has been given a CARE PLAN upon discharge, and INSIST that you have to be given a copy of it. The care plan should detail all the care your husband needs, and the care he is to receive. It should list the people and organisations involved in provoding his care, as well as contact details for them. If he is to get specific packages of care, or particular services, it should also detail the times when such services will be visiting your home to provide care (i.e. listing visits from Home Care Workers, listing visits from Respiratory or Community Nurses, with days and times). Finally, the plan should name the Social Worker responsible for coordinating your husband's care, with contact details.
8. Make sure your husband's care is regularly REVIEWED. Keep in touch regularly with all the people involved in his care. Attend, if possible, all Case Conferences, Care Planning Meetings and Reviews. Stay as much as you can focussed on getting to know all you can about your husband's care, and about who is involved in it. Ask for copies of records, and details of meetings. Take notes. If you are uncertain about processes and procedures, or get nervous in meetings, ask to take a friend, family member or professional advocate.
I really DO hope that you have the matter sorted out, and that your husband returns safely home with the best possible care. I also wish you both all the very best. Times such as these can be taxing and stressful, so also make certain you take "time out" to focus on yourself occasionally. When looking after a poorly relative, people often omit to make time for themselves - you need sometimes to "recharge your batteries". Your husband will only thank you for looking after yourself! Try not to get stressed and "down" easier said than done, I can imagine!)... just remind yourself that you and your husband are going through a tough time at present, and it is therefore perfectly natural to feel concerned, worried, anxious, upset... Remind yourself that you ARE COPING, no matter how hectic things may seem. Sometimes, when events are unpredictable and overwhelming, we fear "loss of control" and start blaming ourselves. Try not to blame yourself. If you try to remain focussed and organized, you will get through it. Gather supportive people to you - you need an empathic "listening ear" at a time like this. NEVER be afraid to speak your mind, or ask for help.
Remember, above all, that you and your husband have remained strong, and together, despite what life has thrown at you. YOU COPE... YOU ARE LOVED... therefor YOU WILL GET THROUGH THIS.
Best wishes,
Elaine Ellis.
P.S. A few organisations/contacts that may be useful...
1. patientslikeme.com (A website and forum for patients with IPF and their families/friends/carers. Gives advice, lists treatments, and allows people to discuss their circumstances with fellow IPF sufferers, to get advice and feedback).
2. pals.nhs.uk/ (The Patient Advice and Liaison Services website. Lists local branches, etc.).
3. carersuk.org/ (A website that gives advice and online support to people who care for poorly family members. Also gives advice about rights, assessments, and Welfare Benefits).
4. nhs.uk/carersdirect/ (Information on this website is about what to expect from Social Services, and how they can assist in providing care).
I truly hope I can be of some assistance, and that there is something here of use to you. All the very best. I hope things come good for you both.
Hi Scooteeder. Thanks for the information. There's certainly a lot to think about. My Husband seems so much better now since being on the steroids. I know that's what is doing it. He is eating well which he didn't before hospital. I'm just hoping the effects will last for a long time. We went to Burnham on sea today and sat in the Cafe on the sea front. We had some dinner there. We parked right outside so he didn't have to walk far. After we came back home. That's the first time we have been out together apart from taking him to the Hospice for the day Tuesday. Since before he went into hospital. I think I made my point when my Husband was in hospital. They kept telling him he could go home tomorrow so he got a bit cross when they said tomorrow yet again. I think it must have upset me because I said to the Dr that I wasn't very happy with how we were told about the disease and the fact that a lot of people have been offered things that may help when my Husband wasn't. He was going every six months until the last year and then told twelve months. The Specialist told us the disease was four point five years so why coming up to four did he go a year. It doesn't make sense. He had no offer of Perfenidone either although I believe he would have been too old for it. Our Palliative team is very good. I can ring any time day or night if I need help. Our Dr is very good now as well. I will certainly take on board some of your points. Thanks once again. X
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