Hi all, yesterday I went to see the specialist in this field as I had asked for a second opinion about my illness as I was not happy with the treatment I was getting at my local hospital. Unfortunately the news I received blew me out of the water. I was told that I have only weeks to months to live and I was hoping to be told there was a drugs trial or something suitable to put me on. I am shell shocked, I don't know how to tell my daughter this dreadful news. My eyes are sore with crying as is my nose. What to do
Craftyone
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craftyone
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I realise it cannot be one of the easiest things to do, but it is far better to be honest and open on what you have been told. End dates are not something to cling on to it will only drag you and the family down. They are not always correct. My wife was told a number of times I was not going to survive the night!
As for trials look it up in google and ask what trials there are for your condition and get in touch. Very often some local hospitals will be part of these trials.
Look to your family for support not sympathy but a hug never goes amiss.
Hello craftyone, you are a very brave lady to share this terribly sad news with us.
There may be other trials you could still take part in at other hospitals. Maybe your doctor could advise you.
I feel you should also tell your daughter as you need her support. I understand you want to shield her from this sadness but I'm sure she would not want you to suffer the news on your own.
Please don't upset yourself, let your daughter help you.
Speak to your GP surgery as I'm sure they will have professionals who can advise you on what help is available to you & your family.
You don't have to go through this on your own.
My heart goes out to you. I'm sorry I can't make things better for you 💐
That's terrible news to get and I am really, really sorry that you have to go through this. No point in false words of comfort but I know that several people here who got certain time-spans and outlived them by years. There are some others here with ILD but they seem to be able to control it to a certain extent by medications and oxygen. It may be that you will prove the doctors wrong and live longer then they have predicted. It happens. Please get professional advice and counselling on how to go forward at this point and ring the BLF helpline also. You don't have to deal with this on your own.
I'm not sure what to put here this is a very, very difficult time for you and your Family. I can only reiterate what replies you have already been given and hopefully you can draw strength from these excellent people's advice. But personally for me..please discuss this with your family they can try to help and support you the best way they are able.
My thoughts are with you and your Family, keep fighting......!!!!
Hi Craftyone, I am sorry to hear your terrible news. As others have said nobody comes with an "expiry date" so please see your GP and try to put things into place to manage your health as good as possible. Maybe there are some clinical trials you could enter? I hope you will have the love and support of your family. By the way, do you know which ILD you have? Be strong and positive, best wishesxx
I would take some time to digest the information before telling my family I am sure they will be as shell shocked as you were when you found out.
Get yourself a note book and start writing things down - write a list of questions for your GP and make sure you have a good NHS team behind you including palliative care. Write down all the things you want to do, try or experience and live everyday as your best day. Write down your wishes, hopes and dreams.
That's awful news, especially when you'd gone expecting something better from the second opinion.
You've been given supportive suggestions here which I can't add to, except to say do what feels right for you. Part of that will be telling your daughter, and you'll find a way to do it.
In 2014, I was given 3 months. I hope you're able to enjoy time beyond what they think now, and suggest you get as much professional support as you can and you want to help you do this. x
Hi, my name is Maggie and I have been diagnosed with IPF. I have been referred to the Royal Brompton Hospital in London and I hope they can put me on trial drugs. I am now dreading that I may be told the sad news I have just read. Can anyone help me. I would like to find out more information, but I would like the truth. Thank you.
Hi Maggie, Oh gosh Maggie. Sorry - I've just woken up and cotton wool in my head.
Welcome to the site. What you need to do is to click on the 'write a post' and write this again, otherwise I'm likely to be the only one to read it.
Can you tell us a little bit more? When you were diagnosed and so on? I don't have IPF but many here do and I know they'll be happy to chat, and we're all here to support you.
I don't think though that we can tell you the truth about your condition because we don't know and won't until you can tell us. You sound very frightened, Maggie, and I can understand that and I'm really sorry. Hang on in there!!
Hi Maggie, I know just how you are feeling, scared, worried and confused. The positive for you is that you have been referred to a very good hospital and I am sure everything that is available for you will be offered. Please remember to write down any questions you have and also write down what the doctors say to you that way it will be easier to digest after your appointment. I really do hope that you get the chance of a drugs trial or something else, we all grasp any straws no matter what in the hope of some relief. So chin up and fight this awful disease full on. Take care. Jenny x
Feel for you and really don't know what to say. However as others have said there are a number of people here that have managed to amaze doctors by being around for far longer than doctors thought.
Seek advice and support from GP. Possibly workers within palliative care will be able to assist you in how to tell your family.
Thankyou everyone for your sincere words and kindness, I am answering through a haze of tears so apologise if there are any spelling mistakes. My GP is wonderful and is coming to see me on Monday so I will ask then about any support I can get for my family and myself. Craftyone x (Jenny)
If you do I list I would suggest using a pencil or waterproof ink!
Yes the news has broken but we will be here for you through the good and bad times. There will always be someone here to offer support not just now but always.
Hello trouble, not been skydiving but had a go at parachute jumping but it was a bit windy in the nethers lol. Had a brilliant day out today with a friend at the NEC in Birmingham spent a few hundred on a sewing machine that I have wanted for a few months so thought sod it, treat yourself gal. I'm sure when I go they could sell it. How are you doing now. Keep smiling. Jenny x
Hi Jenny, I feel for you. I have been diagnosed with IPF and cannot get my head around it because I hear different stories. I do hope you get the help you need from your family and GP. Take care
God bless you Craftyone. I have no words to express how sad your post made me feel except to say be strong and allow your daughter to love you as only she can. xx
Jenny I am so sorry to hear of your awful news and don't really know what to say. I will reiterate that there are some on here who have outlived their prognosis by quite a few years and I hope you will be the same. While there is life there is hope love. Wishing you all the best. A big hug for you. Bev xx
Dear Craftyone, I too am so sorry that you have had such an awful diagnoses... As the others have said do an internet search there may be trials that you can go on that's your doctor doesn't know about.
As others have said on here, 'expiry dates' are OFTEN wrong. I have been told THREE times different ages that I am not expected to get past, and so far they have all been wrong ( the last one by 17 years to date) I can remember the panics that I had a few times as I got near to this ages , but I don't worry about it any more. Doctors can only estimate these dates. not only in lung conditions, I have several friends given 'end dates' that have far exceeded the dates, some for cancer, two for Alzheimer's, obviously some of them are lung related too.. Just try to stay as healthy as you can, do everything you can to help yourself and keep going.
Dear Craftyone just wanted to echo the replies of others, I to was given an expiry date of December 15, I recall the build up to that so can understand how you must feel. It seems futile to say don't worry, but do try to enjoy every day. Xx
Oh Jenny I'm so sad to hear your news- I can't imagine how devastating this must be for you and your family. As others have said don't take too much notice of the doctors timescales.
Please don't be alone. There are lots of people on here to help and support you.
Jenny So sad that your news was not what you wanted to hear. You will find the courage to tell your daughter and then she in turn will find the same to support you. that's what moms and daughters do they are always there for each other. I hope that the doctor is wrong and that you have a few more years left.
Jenny, what a shock for you - so sad to hear that terrible news - as a lot have already said, so many on here have & are still outliving the life expectation dates given to them - you are a brave lady & am sure you will carry on fighting - try to share the information with your daughter asap as she will be very upset if you delay telling her as I know she will want to support you through all this. xx
I would ask for a third opinion if I were you, even if you have to travel to the other end of the country. There is more than one specialist hospital which deals with ILD. As an orthodox Jew I believe that it is only God who knows when we will die and not these puffed up specialists who think they are mini gods. Keep on fighting Jenny and most importantly keep on hoping.
Thankyou for your kind thoughts I did ask for an appt. with an ILD specialist in London but I was refused that option, I like many thought you had a choice of where to seek treatment but not me it seems. Jenny x
Jenny, I am so gutted for you. How the medical professionals could spring that on you just like that is just terrible . Please Have faith, believe in yourself, not them, spend quality time with your Family and I hope you can find the words to tell your Daughter what they told you.
Thinking positive thoughts and prayers for strength for you , I hope you get a third opinion and I hope for you there will be many more happy years to come, love huff xxx
hi so sorry to hear your news, you must be in pieces with the shock of it. I was gutted when I read your post and have been thinking of you since. hope you find a way to tell your daughter about this as soon as possible. thinking of you, love martine. xxx
Thankyou Martine my GP is going to see my daughter today to tell her the full sp as I just cannot bring myself to do it. I feel really bad having the news broke to her this way but I can't cope with it. Jenny xx
hi sorry jenny I have just found this response. I usually get a email to tell me I have a message. I hope the meeting went as well as to be expected. I am glad you daughter knows now, if you ever want to privately chat PM me, thinking of you and your daughter, lots of love martine. xxx
so sorry you didn't get the news you wanted, but please try to stay strong. We are all here for you, and will always support you. You will find a way to tell your daughter and family, and they will be very shocked but supportive. Please keep fighting, a lot of people live alot longer than the doctors say. You take care ask about support for you and the family. Remember someone here is always ready to listen and give support. Thinking of you. God bless you. And please try to fight and stay strong😊 xxx
I am still in the goldfish bowl time where I know things are happening around me but nothing is sinking in. My wonderful GP broke the news to my daughter on my behalf and I have said I want normality back not wrapping in cotton wool. I intend to fight all the way even though I am finding it difficult as I am very tearful all of the time and my wonderful husband keeps breaking down, in 38 years of marriage, before this I have only ever seen him cry once. What a s..t hand life has dealt me !!!!
given to me for the PC treatment as a side-effect.
I was overloaded with unnecessary antibiotics and other drugs,was 2 months on oxygen and almost dyed.
The only treatment should have been to remove the drug
and be treated with antiinflamatory Corticosteroids.
this CHEMICAL PHEUMONITIS IS REVERSABLE,
but many doctors do not know about this.
I had to diagnosed myself and later my DX was confirmed by 3 specialists
Please see this from Mayo clinic:
Patient Care & Health Information
Diseases & Conditions
Pneumonitis
Patient Care & Health Information
Diseases & Conditions
Pneumonitis
Sections
Overview
Pneumonitis (noo-moe-NIE-tis) is a general term that refers to inflammation of lung tissue. Technically, pneumonia is a type of pneumonitis because the infection causes inflammation. Pneumonitis, however, is usually used by doctors to refer to noninfectious causes of lung inflammation.
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Common causes of pneumonitis include airborne irritants at your job or from your hobbies. In addition, some types of cancer treatments and dozens of drugs can cause pneumonitis.
Difficulty breathing — often accompanied by a dry (nonproductive) cough — is the most common symptom of pneumonitis. Specialized tests are necessary to make a diagnosis. Treatment focuses on avoiding irritants and reducing inflammation.
Symptoms
The most common symptom of pneumonitis is shortness of breath, which may be accompanied by a dry cough. If pneumonitis is undetected or left untreated, you may gradually develop chronic pneumonitis, which can result in scarring (fibrosis) in the lungs.
Signs and symptoms of chronic pneumonitis include:
Shortness of breath
Cough
Fatigue
Loss of appetite
Unintentional weight loss
When to call a doctor
Call your doctor anytime you have difficulty breathing, no matter what might be the cause.
Request an Appointment at Mayo Clinic
Causes
Bronchioles and alveoli in the lungs
Bronchioles and alveoli in the lungs
Pneumonitis occurs when an irritating substance causes the tiny air sacs (alveoli) in your lungs to become inflamed. This inflammation makes it difficult for oxygen to pass through the alveoli into the bloodstream.
Many irritants, ranging from airborne molds to chemotherapy drugs, have been linked to pneumonitis. But for most people, the specific substance causing the inflammation is never identified.
Pneumonitis causes may include:
Drugs. A variety of drugs can cause pneumonitis, including some antibiotics, several types of chemotherapy drugs and medications that keep your heartbeat regular. An overdose of aspirin can cause pneumonitis.
Molds and bacteria. Repeated exposure to some molds and bacteria can cause the lungs to become inflamed. Specific varieties of mold-related pneumonitis have received nicknames, such as "farmer's lung" or "hot tub lung."
Birds. Exposure to feathers or bird excrement is a common cause of pneumonitis.
Radiation treatments. Some people who undergo radiation therapy to the chest, such as for breast or lung cancer, may develop pneumonitis. Pneumonitis also can occur after whole-body radiation therapy, which is needed to prepare a person for a bone marrow transplant.
Risk factors
Occupations or hobbies
Some occupations and hobbies carry higher risks of pneumonitis, including:
Farming. Many types of farming operations expose workers to aerosolized mists and pesticides. Inhaling airborne particles from moldy hay is one of the most common causes of occupational pneumonitis. Mold particles also can be inhaled during harvests of grain and hay.
Bird handling. Poultry workers and people who breed or keep pigeons are often exposed to droppings, feathers and other materials that can cause pneumonitis.
Hot tubs and humidifiers. Moldy conditions in hot tubs can trigger pneumonitis because the bubbling action makes a mist that can be inhaled. Home humidifiers are another common reservoir for mold.
Cancer treatment
Some chemotherapy drugs can cause pneumonitis, as can radiation therapy to the lungs. The combination of the two increases the risk of irreversible lung disease.
Complications
Pneumonitis that goes unnoticed or untreated can cause irreversible lung damage.
In normal lungs, the air sacs stretch and relax with each breath. Chronic inflammation of the thin tissue lining each air sac causes scarring and makes the sacs less flexible. They become stiff like a dried sponge. This is called pulmonary fibrosis. In severe cases, pulmonary fibrosis can cause right heart failure, respiratory failure and death.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Interstitial lung disease and polymyositis
Interstitial Lung disease...caused by rheumatoid arthritis
