New to this & looking for lots of help

Hi everyone...

It's my first post on here so will cut straight to the chase, having only recently been told my only option of survival is a double lung transplant, this bombshell news has left me more than a tad emotional.

I'm looking to connect with anyone in a similar position to me, interested in how you cope, your thoughts, hopes and fears...

38 Replies

  • are you saying you went from nothing wrong with you, to needing a lung transplant.


  • Pretty much so, been telling GP for 18 months about a tickly cough and breathlessness, eventually got to see a chest consultant in Feb of this year, was told it was physiological, then that it was heartburn or could be indigestion, then that it might be resolving infection that would sort itself out, in June I was told damage is reversible and given a massive dose of steroid infusions, 7 weeks later was told I could be dead by Christmas and that only a double lung transplant will save me. I'm distraught, scared and have no real idea how to cope with this.

  • whats your fev1

  • What's my what?

  • if you have a lung problem that's your lung function

  • I dont think they feel that it is very helpful for a patient to be told what their FEV results are when the patient has ILD. It's a life threatening disease which usually attacks extremely swiftly. There is no cure and in my case there is no treatment. All we can do is exercise when we are able to, pray and hope we can live as long as possible! I was shocked to be told just one year after having completely undamaged lungs to go to being "too ill to be put on the Lung Transplant List"! Both lungs completely affected and frightening to hear that my lungs will just get stiffer and stiffer so that I will not be able to take a breath!

  • Not sure I'll be answering this correctly then as everything has happened so quickly but here's what I know for sure, I'm 48 and have the lungs of an 87 year old, capacity is only around 30% and I'm oxygen dependent, have been since June (which was also the day I got oxygen delivered to my house)

    I struggled on for as long as I could but had to give up work at the end of April.

  • I was told id need lung transplant last year i had a lung capacity of 23% however after immunosuppressants and steroid treatment ive improved to30% a year later! Im not on oxygen my worst symptoms are tiredness/exhaustion and cough. I have non specific interstitial lung disease which caused the pf (i think) the thing is we are all different and we can respond to treatments! I know how scary it is to be told that a lung trans is your last option but there are things that can slow the progression! Good luck xx

  • You are exactly the person I was hoping to find on here! I look forward to getting to know you...

  • That's hard to bear Elaine, I am do sorry. Do you have a name for your condition and have you had a second( expert ) opinion ?

  • I got a token second opinion when I was in hospital last week, it's just so frustrating.

    Been told interstitial lung disease

  • I think there are one or two people here with this disease but I may be wrong. Why don't you ring the BLF helpline tomorrow morning ? They would be able to give you professional advice. The number is in the red balloon on the BLF home page. There are others here on the transplant list, one of our members had a transplant a few weeks ago and is doing very well.

  • when I was around 48 I had a test which said my lungs were 102 years old, I have very severe copd when I had my first spirometry test my lung function was 18% and hasn't changed. ive been told I will need a double lung transplant, but that's a bit of yet, I still work part time. what have you been diagnosed with.

  • That's the kicker, I've been on myocrisin since 2009 for rheumatoid arthritis and should've been monitored with annual chest X-rays, no chest X-rays have been done at all so maybe all of this could've been avoided. Been told drug related interstitial lung disease but for obvious reasons I don't have a lot of faith

  • Think I would asking the doc some questions here. Why did it take so long to pick up & why was no X-rays done?

  • I see the rheumatologist on the 24th, I'm armed with questions, particularly interested in the missing xrays

  • Best of luck hope they answer your questions

  • Thank you so much for your help

  • Hi Elaine sorry to hear your problems, I too have RA and all the lung stuff that goes with it, was mentioned lung transplant was the only cure, but not inevitable. I retired from work last year, I can only take leflunomide for RA without my lungs being affected, so I am on permanent steroids, and have been for quite a few years. My lung problems are managed with AB's whether oral, intravenous, or in hospital, my cough is constant. I have bronchiectasis and aspergilloma in both lungs, and quite often have bouts of haemoptasis (coughing blood) if I over do things. I still manage to exercise and do what I can when I can. (Tho i'm not on oxygen) I am hoping that this might put your mind at rest a little, and that when you get on the right medication you might begin to feel a bit better.

    take care and good luck with you appointments.

    jan x

  • Hi Jan

    Thank you so much for your reply.

    Although obviously I'd rather chat with you under more pleasant circumstances, it sounds like you've been living with this a lot longer than me and you have already slowed the wheel of panic that's been whirring around my head for the last 3 weeks.

    The prognosis has completely taken the feet from me and it's so easy to meltdown when I know what I really need to be doing is staying strong and focussing on whatever lies ahead.

    I went through another 4 days of tests in hospital last week, these results are on their way to Prof Corris at Freeman and I understand the next part of the process lies with him.

    It's time for some sleep for me, even though the steroids do their best to deprive me of that! Would you mind if I contact you again tomorrow?

    Elaine x

  • not at all Elaine, try and get some sleep and I will check in as soon as I can tomoro. if you feel better doing so you can private message me, but either way will be ok with me.

    take care x

  • I am under the Freeman - they are the best in the country. Sounds like you had your assessment. I was told 4 years ago I need a lung transplant my FEV is 29% and lung age is 113. I manage but I can absolutely understand how you feel - when I was told I needed a double lung transplant a the age of 40 I was devastated. I am 45 tomorrow and have managed to stay stable. That said I don't have ILD.

    In terms of how I dealt with the news I was understandable shocked and upset, but in the main it felt like I was in the eye of the storm. I felt quite calm but my family were devastated. My sister offered me one of her lungs.

    Good luck - try not to worry too much. Its very difficult not to though.

    Marie x

  • It is terrible that they have not monitored you properly whilst you were taking that drug. However, in my case I had Xrays from less than one year prior to diagnosis which were absolutely clear and didn't show up anything at all.

    I asked to see my Xrays and I was amazed at the change in the Xrays in such a short time. This condition or disease seems to attack very swiftly. There are people on this site who have survived many years after being diagnosed with it. My Xrays went from being completely clear to within less than 12 months both lungs completely covered in what they call "Groundglass Effect". I was diagnosed with Non-Specific Interstitial Pneumonitis, Bronchiectasis (which I don't seem to have the symptoms of), and Septal Thickening. I was told my lungs are going stiff and that this is preventing me from both breathing in fully and breathing out fully. I don't have the report in front of me right now and cannot remember what else it said. This disease is classed as a "Restrictive Lung Disease" as opposed to an "Obstructive Lung Disease".

    I have had periods of breathlessness and signs of poor oxygen supply since before I was lips, feet and hands. I was always told it was all in my mind like all my other health problems. I am 59 now. Elaine, please see my post below. Xx

  • Hi twinkling star, just to add I have had "the all in the mind " comment too. Also one of my daughters had a constant cough when she was young...went on for years, coughed up blood ....and I was told there was nothing wrong with the child , it was me being over anxious. Her peak flow is very low now she is 40...unbelievable.

    Best wishes.

  • Yes it is outrageous the way some Doctors and Consultants treat us often just because we are female!!

    I don't even know what my peak flow is. Neither do I know what my FEV is. These things are not really stressed to patients with Interstitial Lung Disease......certainly not in my case.

    I think this is because it is a disease where the damage is irreversible and the disease is life threatening with such a drastic prognosis. If a patient is able to have treatment the best you can hope for is that it may slow down the progression of the disease and that is all. In my case there was only one possible drug and I was unable to tolerate it which left me with nothing other than Oxygen.

  • Please let us know how you get on. Take care god bless

  • To say "you poor thing" sounds really lame ...... no wonder you're feeling scared and distressed. Think it's a good suggestion to ring the BLF - see if you can get some knowledgable advice. And keep posting ... we wish you as well as can be xxpiggi

  • Hi I am so sorry you are going through this, I can't imagine how you must be feeling. I hope things work out for you and you get the transplant if you need it. x

  • Dear Elaine,

    I want to send you lots of hugs Elaine and I am so sorry to hear your extremely sad news. This must be terrible and not having anyone professional to support you is going to make it so much harder.

    I see you have the same or similar condition as me and we also both live in Scotland. I can never get the Doctors to tell me how long I have left which frustrates me as I would like to know how much time I have so I can organise and prioritise the things which mean most to me.

    Elaine......have you asked to be put on palliative care? I was reading about this myself the other day and thinking I should do this myself so that I can get some help about how to cope. This is NOT about giving up. This is about getting the help and support you need to enable you to struggle on. Please look at the web link and see who provides palliative care in your area. I looked it up for my area and it is the MacMillan Trust. I have not contacted them yet but I think I will.

    My situation is never clear because I think I would be on the Transplant list but they stated I was too ill to have a Transplant. I think they meant that I would not be accepted for Transplant because my other health conditions would make Transplant impossible. I felt that my GP may think I was attention seeking if I were to go ahead and contact them so I was going to ask my Respiratory Nurse what she thinks about it. The site states, "Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition." In my case I think it would help my GP to realise just how ill I actually am and get me some help to get my pain under control (I have several different conditions.)

    In your case I think it would help you. Also have you spoken to someone at the British Lung Foundation.......they would help you too (I see someone has put the contact details above) . I will Private Message you with my contact details.......maybe we can get together for a chat too! Hugs to you, Elaine. Remember we all have our very own special Angel watching over us. Love to you from Twinkling Star. XXxxx

    P.S. I have copied my post after responding to you on a different post. Not sure if admin can delete that for me as it seems silly to have it in two places.

    I have this same condition and it seems to attack the lungs extremely quickly. There was only one drug they could even try me on and I had 3 life threatening episodes while I was on it........the steroid prednisolone. So I had to come off this drug knowing there would be no alternative treatment for me.

    We must stay as strong as we can..... I need to work on getting another opinion and to see if I can be accepted on the Lung Transplant list. You need to stay strong so that you are well enough to have the transplant. Don't give up........Double Lung Transplants are very successful and I hope we can both have the chance to have our life extended.

  • Hi Elaine,& welcome to the site! What horrible news to hear,my heart goes out to you.

    Thankfully there are others whom will be able to assist you with any questions.

    I wish you every piece of good luck,& do hope a transplant might be the answer to your prayers.

    warm gentle hugs,

    Wen xxxx

  • I was diagnosed with COPD 9 years ago and have an annual check at the doctors.. I take 3 inhalers each day and recently started a course of pulmonary rehabilitation at our councils local gym overseen by a qualified person. So far I can feel the improvement already after 5 visits.

    Also remember to ask for an annual flu jab, and a jab against pneumonia.

    Try to keep active as much as possible and you should achie

    ve a normal life span.

    By the way I'm now 73.

  • Dear RedKite

    It is great to see you are seeing such an improvement in your condition.

    Unfortunately, Interstitial Lung Disease (ILD) is not like COPD and sadly it is a life threatening disease which is irreversible and both myself and Elaine will not have the chance to have a normal lifespan. I have come across people who have lived far longer than predicted so we do all need to be positive and it is always helpful to have positive people like you to support us.

    Exercise is a wonderful help and I hope Elaine will be able to at least give herself the best chances by taking your advice and doing plenty of special Lung Exercises. Especially good for this disease are exercises which help to expand the lungs as much as they will allow. Remember in ILD our lungs are gradually just becoming less and less flexible until they are so stiff that we cannot use them. Sadly, this condition is extremely difficult to stop it from progressing.

    It is extremely good advice to have a positive attitude because I was supposed to have died by the age of 40 (Hep C from Blood Transfusion) and I am 59 now so, of course, it is great to be positive and it is what gives us the most chances of living the longest life and we must never give up.

    Thank you for being so positive for us. It is always a massive help!

    Love you and big hugs.

    Twinkling Star


  • Thank you so much for all these responses, I'm just reading through them all now.

    Re: last night when I made my first post, I realise now the information I gave was a little scant so here's a little bit more about me;

    This is the first year since the age of 18 that I have not had a gym membership, I've always been very active and prior to my rheumatoid arthritis diagnosis in 2009 had run 4 marathons, thereafter I got on my bike and although didn't compete I would cycle every day.

    I live alone, with my two little westies Katy & Archie and have always been proud and protective of my independence. I worked full-time and long hours as a Project Manager for Schlumberger until the end of April this year.

    Fast forward to the tickly cough which started March 2014, then the unable to breathe episodes and panic attacks which came sporadically from August 2014, autumn/winter 2014 passed in a haze of coughing until I was sick, passing out due to low oxygen saturation levels and fatigue like nothing I had ever experienced before.

    My wonderful GP whom I cannot fault has been extremely supportive since my first visit to see him in June 2014, at one point even forcing an admission to the observation ward in an attempt to find out what was happening to me, sadly this was in vain as he couldn't get anyone to listen to him either.

    February 2015, my first appt with a chest consultant, he took notes and appeared to be listening yet still felt the need to suggest it could be physiological, my first CT scan showed some abnormality in the form of smudgieness, opaque ground glass on the left lung but this was dismissed as unexplained / resolving infection and no further action was required. With progressive symptoms, the following month I was told heartburn and or indigestion were the culprits, despite never having suffered either of these ever but my protests did garner some further tests and in June this year was told it's cellular pneumonitis, it's reversible, come in to hospital for some Medrol infusions, you'll respond well to the treatment.

    By then I'd started taking Omeprazole, Alendronic, Calci-chew and Prednisolone in tablet form but still felt full of hope based on the most recent "diagnosis" from my consultant.

    Only 7 weeks later at a follow up appointment, Mum and I sat waiting to hear the news about how much better I must be getting as he said it was reversible etc. etc.

    We left there in floods of tears after finding out the condition is in fact not reversible, not cellular, not indigestion, heartburn, infection or physiological but is in fact fibrotic and he suggested there may not be enough time for me to even complete the process that gets me as far as Freeman for the 4 day assessment.

    He commented that the speed at which the disease has progressed has taken him by surprise and commented I'm concerned at the rapidity of your deterioration but this is clearly of no consolation to me or Mum.

    This bombshell was dropped only 3 weeks ago but I have now had 4 days of tests done in Aberdeen, Freeman now know of me and Prof Corris is currently reviewing my situation with a view to getting me down to Newcastle for the next assessment.

    Will keep you all posted....

  • Hi

    Sorry to hear about your ordeal. Do you have COPD? I have severe COPD and am on oxygen. My lung fev is only 14% but I cope. My consultant did mention LVRS (lung volume reduction surgery) involves cutting out bad parts of your lungs to improve breathing. However, a patient needs a fev of at least 20% for this surgery. I am hoping I can increase my fev.

    Try to have another chat with your doctors to explore other treatments.

    Look after yourself.


  • Hi Malinka

    The latest diagnosis is a connective tissue interstitial lung disease caused by a drug I was given to treat rheumatoid arthritis. My chest consultant has never spoken about fev but I guess different diseases have different symptoms, outcomes, treatments and terms.

    I'm looking forward to getting to know everyone on this site and finding out how everyone copes.

    Elaine x

  • I am sorry. It is very worrying when a drug that is supposed to help one ailment can cause another with such devastating affects! Hopefully you will get some more encouraging news from the chest consultant.

    Take care



  • Just want to say hi Elaine and welcome to this wonderful site. I cannot really answer your questions but you do seem to have had lots of helpful advice and support already so you have come to the right place.

    wishing you well. xxx

  • Interstitial Lung Disease is classed as a "Restrictive Lung Disease". It attacks the lungs and the patient usually develops Fibrosis of the Lungs which means the lungs are losing their flexibility. This means the patient has difficulty emptying their lungs and also has difficulty breathing in fully, not only because the lungs are too stiff but because you still have the old oxygen in your lungs and therefore the space to store fresh oxygen in the lungs gets smaller and smaller. COPD an "Obstructive Lung Disease" which, of course, is in the name of the condition.

    Elaine.....I was taken into hospital and was there for 3 weeks while they tried to work out what they could do to help me. I had 5 teams of Consultants working together to try to work out what they could do. Like you I was put on Alendronic Acid, Calcium with Vitamin D, Vitamin C, and an extremely high dose of Prednisolone. The Prednisolone caused me to have 3 life threatening incidents and I was soon back in hospital.

    I have been on Oxygen now since 5th August 2014. I feel that the Oxygen has made me feel considerably better and has also enabled me to get back to exercising. Exercises which help to expand the lungs are extremely important when you have Interstitial Lung Disease but you must start off slowly and then increase slowly too. You can do exercises even while you are on your them whilst lying down or sitting up. Just please do not just stop and let this disease take over. If you feel unable to actually move then your exercise routines will have to be just deep breathing and other breathing exercises until you can do more.

    I have not been able to get a second opinion as I am usually far too ill to travel the long distance to even my nearest hospital. I was not referred to be considered for Lung Transplant because the Consultants all agreed that I was too ill to even be given this option. When I arrived back home and thought about everything I was thinking that they should not have made this crucial decision and I intend to ask to be referred to be assessed for a Lung Transplant. Both of my Lungs were completely covered with this "Groundglass Effect" yet Xrays from just 12 months previous were completely CLEAR. This seems to be very common with Interstitial Lung Disease - with it attacking the patient rapidly.

    This condition has no cure and therefore we must work hard in trying to improve our condition. In my case the only drug available to slow it down was Prednisolone and because I was unable to tolerate this drug I was left with NO OTHER TREATMENT! They apparently cannot give me any of the other drugs that may have helped because of me having Hepatitis C which I have had since I had a 6 pint blood transfusion at the age of 18. Any drugs that would help the Lungs would cause the Hep C to spiral out of control. I presume this is also the reason why I cannot be considered for either a Lung or Liver Transplant as now I need both as the Hep C has attacked my Liver and I have Liver Cirrhosis Stage F4.

    Elaine........look at all medications to make sure you are not still on the drugs which were responsible for causing this condition. In my case it was classed as "Non-Specific" which I think just means that they do not know the cause in my case. This makes it more difficult as I did not know what changes I should make. I rang British Lung Foundation as I didn't know whether I should have Feather filled bedding and would my memory foam be worse or better or what actions I could take to try to stop this disease from progressing.

    I don't know what else we can do. My priorities are: Get fit enough for Lung and/or Liver Transplant; Exercise as much as possible especially exercises where I am expanding the capacity of the lungs; I have to avoid many foods because of the Hep C but I think it is always good to cut out sugar and foods from the Deadly Nightshade Family when you have painful joints or other painful conditions; AVOID STRESS - stress is our biggest killer!; watch or do anything which makes you laugh or smile; get some support (I am still working on this) - my GP is rather dense and does not understand how serious my conditions really are; communicate with others who have the same condition; look at beautiful things and treasure them in your mind. Make some goals of things you would most like to complete and work through your list taking steps to get them done!

    I am never told my results oh but then they don't seem to be doing any tests any more - only when I demand to have something done! Don't forget to ask for anything which may help to improve your quality of life: Powered Wheelchair, adjustable bed, bath lift, Emergency Call System, extra Oxygen Cylinders & machines, etc.

    Elaine I hope that even one thing I have said will give you something to focus on.

    Big Hugs to you.......loads of love.

    From Twinkling Star

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