Supporting my husband, ILD - So afraid

My husband was diagnosed ILD in Feb 2014 and since that date to this he has rapidly declined. He is 47 and we had 2 children 12 & 9

Today he is in ICU and they are considering Ventilating him i am pettrified as they have said it would be hard to bring him back from it,

At the minute he does not fit Transplant Criteria and to be honest i dont have much faith this will ever happen,

Hes had 3 infusions of "c" cant remember the name and on Sat they infused him with Ritolomab no positive signs yet x

Just looking for some ideas thoughts support, i am realisitic but so afraid :((

91 Replies

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  • Hi Warriors. I'm afraid I have no ideas, but wanted to send my love and support. I can understand how scared you must be, and having to be strong for the children when you are afraid yourself is so hard. This is the place to come for us to help look after you.

    I am sure someone with experience in this will be along soon, but my thoughts are with you. X

  • Thank you for your response x

  • Oh Warriors try and stay strong for the children. Have you got a relative or a friend nearby to help you. I don't have ILD so can't help much except to say I will keep you in my thoughts and prayers. Stay with this forum others I'm sure will be able to offer support and help xx

  • Thank you, I have lots of support but think I need to see this one out alone, the condition is so unknown and friends look at me strange as they to have no understanding, I am strong but unfortunately realistic - why isn't there more support from the NHS like there is for cancer patients, after all the condition is worse x thanks for listening x

  • I am so sorry that your husband is suffering, can you ring the BLF helpline today...they are open from 10am during the working week...they can advise you better than I can. Thinking of you and your family

  • Thank you x I did call BLF yesterday, and I was called back, unfortunately I did not find the advise useful - not sure what I expected everyone just seems to sit on the fence x thanks xx

  • Hi Warrior. My Husband had Idiopathic Pulmonary fibrosis. I have seen him go into hospital and have wondered if he would come out. It's marvelous how they can recover and it can be quick. Here's hoping this will happen for your husband. I know how worrying it can be. My thoughts are with you. X

  • Thanks Mavary x you said Had what happened if you don't mind me asking ? X I understand if you don't want to talk

  • Hi Warriors. I have just read the other responses. My Husband had IPF and not ILD. The treatments are very different for this. My Husband went into hospital very ill. They gave him high doses of steroids. When he came home he was so much better. Unfortunately his condition was critical and I lost him twelve weeks ago this Friday. Please don't compare the two illnesses as they are different. X

  • I am so sorry to hear of your loss, thank you so much for taking the time it really does mean so much xxx

  • Oh gosh how dreadful for you all. I am sorry I cant give you any help but perhaps the BLF helpline can help you (click on the red balloon) the nurses maybe able to help you with your fears. Take good care of yourself, my thoughts, love and prayers are with you. TAD xx

  • Thank you x I did call BLF yesterday, and I was called back, unfortunately I did not find the advice useful - not sure what I expected everyone just seems to sit on the fence x thanks xx

  • Hello warrior

    I have ILD. I had 6 of the infusions you described which seems to have slowed down the fibrosis. I know that rituximab is the next drug used to treat ILD. It is a problem that not many professionals understand or know of the disease, never mind the general public. If it is any comfort I have been in hospital a couple of times with pneumonia and been unable to walk for a few weeks, but have got back to being mobile in a limited way with oxygen. When I was in the Brompton a nurse from the Palliative care team came to see me.Her role was not just to deal with end of life cases, but to help patients access help to make life easier. She was v helpful. I wonder if your hospital has a similar service? I am so sorry you are having to go through this, it can feel v lonely and scary as my husband would agree.

    You will both be in my thoughts.

    Maggie

  • Thank Maggie and im so pleased that you are better and managing at home xx Yes thats the drug he had Rituximab was infused Sat we have to wait 15 days for next lot x they have sediated him today hust praying that hes not ventilised as they where not hopeful - xx Thanks for love and concern xx keep fighting xx

  • Oh dear Warrior,you're realy having to live up to that name.

    Big hugs to you,what a horrible time for you.How are your children copeing? As they are old enough to pick up what's happening.If they do ventilate your husband,they will need to see him,before that happens.I do feel for you,& unfortunately I realy can't advise you.

    As your friends don't understand about ILD,is there any pamphlets etc. you could give them to read.You will probably need your friends in the coming days,so don't push them away love.Take care,we will be thinking of you,love Wendells xxx

  • Thank you wendells so much for your concern and comments xxx im doing ok and the kids been amazing xxxx much love xx

  • Hi Warrior, I am so very sorry that you are going through this. There is not much that I can say because I don't know anything about this condition. I wish I could help you in some way. I hope that you have someone with you at the hospital to support you, and , I agree with Wendells that if your husband is ventilated that your children should see him before this. Poor souls, to have to go through this at their age, its hard enough for adults. I just want you to know that my thoughts and prayers are with you and your family, and to say that plenty of people have come back from situations where doctors and family have prepared for the worst. My father had a severe and near fatal heart attack and I was told there was no hope. Thank God, he lived for many years after that. I know the situations are completely different. I guess I am just saying, try and keep hope alive for as long as possible. Take care of yourself, and I am truly sorry for your situation and that I cannot help you. Best wishes, hugs xxx

  • Thank you hugs so much for your concern and comments xx much love xx

  • Hi Warriors, I hope I can give you some positive vibes. I was sedated and ventilated for 1 month in Worcs Royal and I pulled through. I was in ICU for a total of 2 1/2 months and on the wards for a further 1 1/2 months but that was 4 years ago now and I'm ticking over ok. I was 51 at the time and this disease came from nowhere, stay positive and let the experts do their thing.

    Remember stay positive, its possible to beat this ILD thing.

    Tony.

  • Tony omg thank you for such a positive response xx I do hope your ok xx do you need a transplant ?? They transplant clinic have said they wont touch him until he can walk in !!!!! Unreal !

    Thank you xxx

  • Hi Warrior, Yes I've been on the transplant list for 12 months now at the QE Birmingham. You have to be ill enough but also fit enough to survive the operation which is a little weird.

    After 3 1/2 months of being stuck in a bed I had to learn to walk all over again and it took another 4 months before I could walk 100 meters without stopping.

    I can walk miles now at a very steady pace but I do need portable oxygen too.

    There is light at the end of this but its all done in small steps.

    If I can help in anyway don't hesitate to ask.

    Tony xx

  • Thanks so much Tony i would like to stay in touch if you dont mind, i understand if you dont want to, I will be sure to tell my husband your amazing story, xx

  • Tell your husband not to fear sedation and ventilation as I had the most amazing dreams and in a crazy way I was having fun while all around me were going through hell. The hard work started when they brought me round and the physios appeared at the bottom of my bed. :)

    Ask me anything you like and I'll do my best to help

    Tony xx

  • I thought I could add that while I was in ICU after I was brought round from sedation my oxygen levels struggled to hold above 90% on high flow air/oxygen, and my heart rate was a constant 120 for months. Its now 70-80 and pretty much normal.

    From experience your husband will need to hear positive story's from others who have been through what he is enduring right now.

    Tony xx

  • You poor thing , how awful for you but you are being strong and you have come to the right place for support .

    Please take care i will be thinking of you Dorothy xx

  • Thank you Dorothy xx

  • Hi Warrior

    My heart goes out to you. I was in the same position as your husband and Tony just 18 months ago. I negotiated with the doctors to try everything else before being ventilated. The first was if my sats reached 55 and I could no longer talk in full sentences. The second was if the bipap machine was no longer helping and the third was if I refused tea. So for 12 hours I smiled and chatted to the nurse and drank tea. In total I was in hospital for 3 months but walked out and went home and have not had to go back as an inpatient yet. Take heart and big hugs xxx Dozy

  • Dozy thank you for your care support and amazing positive outcome, i am trying so hard to feed from this, just so hard to watch him today, with Oxygen at 90% heart rate at 102 and BP at 50/50 im no expert but having spent the last 3 months in and out of hospital even i no thats not good xx

    I am so pleased you have beaten this so far and I will read him your post xxxxx

    Thank you xx ill stay in touch xx

  • I hope things turn out ok Warriors. I wish I could offer more help.

  • You took time to write somthing xx it means alot xxx thank you xxx

  • I cannot immagine what yoou are going through trying to be strong.for your husband , your children your various family members ,all i can do is to send you.my love ,my thoughts and a prayer for you all .God bless. XX Sue

  • Hi Warriors just read your post. What a terrible thing to go through for all of you. I can't offer any advice just want to say sorry and you are all in my thoughts and prayers. xx

  • Wishing you all the best for a good outcome. I am sure that Tony , Maggie and Dozy Dormouse will try to give you lots of good advice and support .They have written inspirational posts in the past and always seem to remain positive .

  • I was on a ventilator for 30 days and in that time I was put on an oscillator for 10 days back in 2008. I did have some weird dreams but it was the right thing to do for me.

    I wish you and your family the best and stay strong.

  • Well Warriors you have had some amazing advice and support on here so far and I just know it will keep on coming. Your husband may well pull through knowing that there is so much support for him, for you and your wonderful children. Try and stay strong and as positive as you can possibly be. Lots of love and kind thoughts for you all. Take care. xxxx

  • Warriors2014,

    This is what many people do not understand about certain types of lung disease it can take your life very rapidly. At age 44 I was diagnosed via open lung biopsy I have UIP sometime's called IPF. I was told that day, one illness could very well take my life, that there is no treatment, avoid becoming sick that the common cold could take my life, while smoking is bad for you don't bother quiting it won't make a difference and could cause further stress on my lungs, avoid using inhalers, antibiotics, steroids, when I do get sick unless proven by x-ray and blood work I have an infection, avoid using oxygen until absolutely necessary, and once I go on a ventilator it would be hard to get off. I will pray for your husband that he be given strength to get over this hurdle. This is the very reason I have been so hard on my doctors. The doctor that diagnosed me I've known for over 20 years he took care of both my parents and told me all that information with tears streaming down his face and he told me most pulmonary doctors would not be as forth coming with the information. The doctor that I see for general health is amazed I am doing as well as I am at this point based on CT scans and lung x-rays and pulmonary function tests, but I thank God every day for the gift of breath life. Best of luck to you and yours.

  • My amazing Warrior lost his fight on Thursday 22nd May at 4:55, they transfered to a life support at 11am but unfortunatley he died in my arms, he could not fight no more, and even the machines could not keep him xxxx

    He was 47 a father to our amazing 2 children Megan and Thomas we are truly devastated, in just 3 months hes gone I am just lost for words the crulist diesease ive ever know in my life xxx

    RIP Dave Hart xxxxx Breath Angel xxxx

  • I am deeply saddened at this news, I was very hopeful that your warrior would get through this. It seems that this disease is unstoppable sometimes no matter how strong you may be.

    Tony xx RIP Dave Hart

  • How sad to hear this news. It is even more tragic when he was such a young man whose family needed him. I am sure though that it was a comfort to your husband Dave, that you were with him and he knew how much he was loved and will be missed.

    My heart goes out to you and your children. You will all be in my thoughts.

    Take care

    Maggie

  • Thanks Maggie x

  • So so sad to read your post. I can only imagine how you must be feeling. My deepest condolences to you and your family with much love TAD xxxx

  • Thanks x

  • I am so sorry and saddened to hear of your own special Warriors passing. Life is so unfair at times. I am positive your husband knew how much he was loved by you, your children and all your family and friends. There is no greater thing to love and be loved, and you and he had that. You must be numb and completely overwhelmed at the moment, but you will find strength you never knew you had. He is still around you and your children because of all the memories and good times you shared together, all his little ways and habits and the things he did. I wish I could help you and take away some of your pain. Thank God, that you have

    his children and he will live on in them and they will give you strength as well. I am praying for you and your family for the courage and strength to get through this time. Please stay in touch and let us know how you are all doing. As you know the site is open 24 hours a day so you will always find someone to talk to if that is what you want. I wish peace for you and your children. God Bless you all. hugs xxxxx

    ps I hope in time, you will find some comfort from all the support you have received on here, so please stay in touch when you want to and the time is right. xxx

  • Thank you huggs xx

  • We are all terribly saddened by your news, condolences to your family and yourself xx RIP Dave Hart xx

  • Thank you xx

  • I am so so very sorry you have lost David my condolences ,find comfort in your children ,lots of love Dorothy xx

  • Thank you x

  • So terribly sorry to hear of your very sad loss. Please accept my deepest sympathies to you and your amazing children. God bless you all. xx

  • Thank you xx

  • Oh! you poor woman. I am so sorry to hear your very sad news. I will say a pray for you to have the strength to bear this for the sake of your 2 beautiful children. PT xxx

  • Thank you xx

  • I am so very sorry to hear of your very very sad loss. Please accept my deepest sympathies. I wish you and your family strength at this very difficult time. xxx

  • Thank you xx

  • My deepest condolences to you,dear girl,& your wonderful children Megan & Thomas.

    I was so sad to hear of your tragic loss.I do hope you have people near to offer support to you all.

    Gentle hugs to you all,I hope you can all draw strength from each other.Love Wendells xxxx. RIP Dave.

  • Thank you xx

  • Hugs to you and your children may they be a comfort and a blessing to you in the sad times.

    Pat xxxxxxxx

  • Thank you xx

  • My deepest sympathy to you and your two young children. My thoughts and prayers will be with you all.

    Thérèse xxx

  • Thank you xx

  • What dreadful news. My heart cries for you and your young family. RIP David. xxx

  • Thank you xx

  • Oh Warrior my heart goes out to you and your dear children. You will have a lot of love from everyone here, invisible, through the atmosphere.

    Words cannot express the devastation.

    My 3 lost their father 3 years ago so I well understand that their pain is also your pain.

    Thinking of you all, with love Penelope

  • Thank you xx

  • You're so very welcome. It must be tough, life can be so cruel.

    My very best wishes to you and your children and I very much hope that you three find some moments of joy in the school holidays. P xxx

  • Oh Warrior that is dreadful news and I am so sorry. Dave is at peace now and up with the angels on his cloud. My thoughts and prayers are with you and your children xxx

  • Thank you xx

  • I know i cannot say or do anything to lesson your pain ,i can only send you my deepest condolences, love, and prayers. God bless you and your family Rest in peace Dave. X

  • Thank you xx

  • Hello Warriors was just reading through your posts and replies and was wondering what I could say as I know nothing of ILD! Then I read your post about your beloved Dave loosing his fight with the wicked disease,was not expecting to read that and feel a little shocked to say the least,god only knows how you must be feeling you have had no time to get your head round his diagnosis and now your loss.Iam so very very sorry and my heart goes out to you Megan and Thomas, one day at a time.If ever you want to come on and sound off or just say hello please do you have a lot of support and understanding people hear. :( Janexx

  • Thanks Jane xx

  • My poor sweet dear, sometimes things were just not meant to be. Sending you and the children the softest and most comforting cuddle that there is. A mum hug. Your dear Dave is now at peace and no longer struggling and can rest. For you things will take longer but you have the love of your family and you know where to come if things get too hard to handle. You can always get me via pm. Love Dozy xx

  • Thanks dozy xx

  • My love thoughts and prayers go out to you and your children. You have a difficult time ahead, but take heart in the thought you have memories of a life with him and 2 children, I know that's not much comfort now though. Take it one day at a time, God bless.

    xxx xx

  • Thank you xx

  • Condolences to you and your families. My sincerest sympathy on the sudden death of Dave, it is a small blessing to know he's suffering no more, your memories of him will carry you through this difficult time. R.I.P Dave Hart

  • Thank you xx

  • I am sending my love, prayers and my deepest condolences to you and your children at this very sad time.

    R.I.P, Dave

    polly xx

  • Thank you xx

  • So sorry .Hope that you can somehow find strength . As others have said your husband will live on in your children and they are old enough to always remember their father .

  • Thank you xx

  • Hello Warriors,

    I am so sorry to hear of your loss. Whilst I can find no words that will go anywhere close to bringing you comfort, please know that you will always have us to turn to. We will be here when you need us; whether that time is next week or next year.

    You are all in my thoughts. X

  • Thank you xx

  • So sorry Warriors to hear this sad news. R.I.P David. You have been a very brave and loving young lady. He would have felt your love. Take comfort in your children and your memories. In my thoughts.

  • Thank you xx

  • Such sad news.

    I'm so sorry Dave lost the fight.

  • Thank you xx

  • You and your family are in my thoughts and prayers at this sad, sad time.

  • Thank you xx

  • Thank you xx I cannot find the words at the moment xxx But thank you x its people that matter and Im touched by the support respect and dignity of complete strangers xx

  • Well its been 2 months since my warrior lost his fight xx I read your words and they are still so warming xx

    I just want people to understand the reality of the condition, there was so much I wish I could have said but the end was so rapid and even the medics were shocked with the speed

    If there are any suffers or people just supporting sufferer all i can say is dont hold back say what you need to say and face what could be the last time you tell each other I love you ,

    I wasnt prepared and had no idea once ventilated the machine cant keep you xx Dave had just 4 hrs and passed whilst the machine was still on full.

    Life is so cruel and wicked and there isn't enough information or support for families in this situation x

    I want to do more to bring awerness to more sufferers xx

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