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British Lung Foundation
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Diagnosed with Interstitial lung disease

I'm new here, my husband has been on and asking questions for a few months now- I guess I've been in denial... I'm only 58; & taking medication for my problem, since June 2016, coughing less, but still out of breath.

I go from being positive & believing that I won't need my lungs replaced, to the overwhelming what if's.... It's up & down.

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Hello MicBel . I understand the roller coaster of emotions. 😑 I have lung disease and was diagnosed at 40. Be kind to yourself. It's okay to not be okay. It's perfectly normal. Eventually things will settle down and you will see things more clearly.

Sending you a big hug.

Cas xx 🌹

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Hello MicBel I know exactly how you feel I was in denial for a long time but you reach a point when you have to bite the bullet. the best way to deal with is to appreciate what you can do and don't regret what you can't you will surprise yourself by what you do achieve exercise and a good laugh is the the way forward if i wake up and hear the sparrows coughing i know I'm home in Manchester ha ha

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Good morning MicBel, and welcome to HU. I see a lovely letter from Caspiana, and I can only reiterate what she says. Stay positive and kick the negative ifs into touch as much as you possibly can. It's good that you and your husband have the support of each other. It all helps doesn't it to make you stronger

My very best wishes.

:-)

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Thank you for your note- yes I have the best husband, this coming week our 30th anniversary- I am very blessed... but feel so sad that he has to help me with so much... I've always been so active & doing so much... being so dependent on him, I know it is draining- I am trying to be positive, but then I feel so down- & sad

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Keep going, and call in here often, we will do our best to cheer you. It's so easy to sink into a depression when you are unable to do what you have always done and have to rely on others. It's all about taking an alternative path and concentrating what you can do. I know it seems futile, but it isn't I promise, you will adapt, we have to and I think you are strong..

xx

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Hello MicBel

A big welcome to you.🌷

Now... ' What if's '....You can fill all your time thinking what if, and it won't make any difference apart from making you worried and depressed.

You have a lung disease, and your life will be different now, you have to try and have a healthy lifestyle, and take care of yourself, but you have to try and be positive.

Listen to your body, do what you can, when you can, and enjoy it, and when you need to rest, rest and don't feel guilty about it.

You have the support of you husband, who sounds very caring, and understanding. He will have to take on the things you now find to much, but l know you would do the same for him without complaining.

I am glad you have found this site, you will see the people on here still lead happy lives, be it at a slower pace. They are an inspiration, and will be here to help and support you anytime you need to chat or need advice.

Looking forward to hearing from you again

xx

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Morning, try not to live your life with the what ifs and buts. I was diagnosed 4 years ago with lung disease I was 41. Positivity is a great help. My husband had to stop working to look after me. I struggled in the beginning like everyone does, I was very active a teaching assistant and mother of 4.. just before my illness my best friend passed away leaving 5 children 4 of whom were older, even though I had started to become ill I took on the youngest child. She gave me something new to fight for and the realisation that at least I was still here and able to fight unlike her poor mother. 4 years down the line and I'm coping so much better my health is improving all be it at a slower rate. I'm a mother to 5 brilliant children and on Christmas Day 2015 I became a nan for the first time. I'm filled with so much love and hope. The way I see things now is as long as I can breathe ( I'm on oxygen 24/7 ) smile and laugh, I'm doing brilliant. Try and keep your chin up. In those dark moments of thought think to yourself we could always be worse off at least we're still here. Sending you positive thoughts and hugs xx

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What a lovely reply, Wendy. Your positive thoughts reached me too! xx

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You are so inspirational - read this with tears in my eyes and huge admiration - all the best to you xxx

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Welcome to you MicBel and l just want to say that Pete has ILD too as well as sarcoidosis and COPD. He is 65 now (diagnosed with sarcoidosis at 39) and is doing well. Be good to yourself and enjoy each new day as much as possible. Xxxxx

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Hi MicBel,

Velvet is right, "What if's....." forget them all and concentrate on "I know I can do's.....". Your life has changed, all you can do is move forwards and embrace it.

I bet that you have things that you have wanted do in the past but have been pushed to one side by the "life's daily slog". You now have the chance to replace things that you can't do with the things you've always wanted to do. It will also help make your husband happy to see you engaging with life again, doing what makes you happy.

But also don't forget to to do the thing you must do, primarily, to look after yourself. Depression, when it rears it's ugly head, is an evil condition and it can spiral out of control so easily, but remember we are here to support you.

So, realistically, just what did you want to do in life but have never had time or a chance to do? Then hang it all and go for it, it's never to late to achieve one's ambitions.

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Such an up beat reply 2greys - so true and honest. Sometimes we have to be bold even faced with all sorts of illnesses. You put it so eloquently.

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oioi i was the same up down went throu it all then had me lungs swoped its not the big monster you think and not allways needed if you need to know anything about it feel free to ask one thing i wld say is to stay as fit as possable walking step ups lift cans etc it helps if you do need transplant it will make it easyer by a long way

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Dear sibkev ,I was reading your reply to MicBel and was wondering if you could spare some time to tell us all how things have been for you since your transplant. I know you posted in the New Year,and you were so positive about all aspects of your life. I'm hoping that this is still the case and were you able to travel abroad like you'd hoped you could? Best regards.

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just fab ive had a small issue with a pre canser on my hand had it removed thurs apart from that all fine im walking now up to 5 mile a day thou i do get memory pain in my back n legs have to stop it does go away mostlyi spend time up n down to q.e. but thats to be expected

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Welcome MicBel, and very nice to meet you. I hope you won't feel so alone now. x

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Hello and welcome MicBel

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Hello, sorry to hear you have been feeling low - this is a great site for information, support and advice so hopefully you won't feel so alone soon. Sending good wishes xx

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Thank you- for all of your support. Yesterday we got good news! The test results show that there is no progression & my lungs are stable at this time. The Mycophenalate & Prednisone are working for me. Still having trouble with breathing, but not on any oxygen, so that's really good news. Staying positive & back to the pool exercise fro me. For everyone out there, Prayers & Blessings.

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be strong lady i know you can

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Thank you- there are good days- & there are great days.... thank you for your support.

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Hi, I had a lung biopsy and diagnosed with dip ( desquamative interstitial pneumonia) I was only 37 I'm now 46. I'm on alot of medication and my life will never be the same again. Trying to quit smoking is the hardest thing I've ever had to do. I'm not going to say it's getting easier, it just is what it is.x

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What were your symptoms?

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Please read my experience:

I am a member of advanced prostate cancer group (pc)

and was misdiagnosed with pneumonia

where it was caused by a Drug Nilutamide

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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Opportunities

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.

By Mayo Clinic Staff

Request an Appointment at Mayo Clinic

Diagnosis & treatment

March 09, 2018

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Shortness of breath

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