Discharged because my breathlessness is an "enigma"

I went to see my respiratory consultant the week before Christmas, and basically, even though I feel that I am in a better place (psychologically) than I was 18 months ago, albeit with no improvement (or worsening) in lung function (relatively constant at around 63-65% FEV1/FVC, I received a letter today discharging me back to my GP because my breathlessness remains an enigma to him. It has been suggested, in some of the literature I have received from him, that my lung function tests indicate obliterative bronchiolitis (and then three weeks later, another piece of literature stating that that there is no evidence of obliterative bronchiolitis.............hmmmmm me thinks that the left arm doesnn't really know what the right.........!).

I'm not always fastidious about things, but after all, it is my life that we are talking about here. I'm about to lose my livelihood as a teacher (for the last 21 years); there is no guarantee I will even be eligible for a pension, despite a trail of medical reports (some of which conflict with one another!). Should I be seeking other medical opinions, or should I even consider complaining about the mismanagement of my treatment from day one? How do I go about getting to see a really good respiratory consultant who is prepared to invest time and money in trying to find out why my breathlessness has worsened in recent months, and why I rarely now have a heart rate below 90-95 bpm at rest. Climbing stairs or walking in the strong headwinds experienced recently renders me almost totally breathless, and it takes me several minutes to regain some relative degree of normaiity.

Is it that common a practice in the days of austerity that an uncertain diagnosis means that we shall leave the patient with no diagnosis, and no methodical approach to treatment to alleviate some of the symptoms I have? I have been on various inhaler therapies for over 18 months, and now I am being told to wean off these, and be left to fend for myself. Is this normal practice in the light of no diagnosis (after 26 months), or misdiagnosis? I have ankylosing spondylitis, and I am getting conflicting information regarding the possible impact that this disease can have on lung function; it is something of an enigma that I present with obstructive small airways disease - COPD (although no hypoxia and good gas transfer at around 97-98%) and yet one would normally associate ankylosing spondylitis with a lung disease of a restrictive nature. I feel a little let down by the whole situation.

I started on Humira anti-TNF treatment in October 2014, and only this week, it has been suggested (by my rheumatologist) that perhaps I should stop taking this as there is no real inflammation in my body as seen from my blood tests - they also seem to have lost my previous three sets of blood tests which showed extremely high levels of inflammation in the body; so maybe the Humira is actually slowing down the progression of the ankylosing spondylitis. God forbid a treatment that might actually be benefiting me! And they want to take that away from me too. 2016 - looking forward to it already.

Incidentally, happy new year to anyone on here who has the patience to read through my drivel, but I was wondering if anyone else feels that they have been let down by an NHS that is overworked, understaffed and sometimes, dare I say it, inefficient and incompetent. YOur thoughts would be most welcome.

Daley Waley

32 Replies

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  • Hi Daley, that is some story. My best advice is to ring the BLF helpline and go through your points with them, they really are very good. You can reach them on 03000 030 555 from 9 - 5, Monday to Friday.

  • I think I know what you are going through as when I was getting discharge from the hospital the doctor said I was going to have oxygen in the houes but just before I was about to leave two nurses came and asked me to bush my self to the bathroom and back and then put the I do not know what you call it on my finger well any rate they said nothing but up to now I have not had it at all Number two I had a water test as I get above average infections and the doctor tested it in his room and said yes that I have an infection as soon as he put his sick in it it just went straight up so he sent it away and when I went back down a couple of weeks later and seen the copd nures he said there was nothing wrong so I said how can that be as when the doctor checked it it was high but just told me there was nothing how come he did not answer me so now I do not go back as two many mastics

  • Good morning DaleyWaley

    I have joined the discussion on your case before and I have been meaning to get in touch with you about any progress.

    You may remember that I too believe that I have obliterative bronchiolitis (OB).

    I think it is utterly unacceptable for a consultant to discharge you because your case is an "enigma". Solving problems is exactly what consultants are paid 'much fine gold' to do. That is his job, he can leave the routine and easy stuff to his registrars. What has happened to the idealism that launched him onto his career? Where is his spirit of adventure and challenge?

    I think you said previously that a High Resolution CT scan was not done correctly? If you remember the same thing happened to me. And it was this that initially led my consultant to conclude that, in my case, it was not OB. Subsequently there were two second opinions that did find — crucially — air trapping. I wrote to the radiologist and he wrote back apologising for the errors in the way the scan was done.

    I really think that you should pursue the OB route, your case is so very like mine. One of the problems for us and for the doctors struggling with our cases if that the results: FEV1, Oxygen sats and heart rate; seem to indicate that our situation is not too bad, however, our symptoms are severe. And because of that it is too easy for doctors to think that it is a trivial matter. With OB it is possible for the PFT numbers to normal. And gas exchange can be normal too. To be fair to them it is difficult to diagnose.

    Do you have a good GP? If so I suggest that you get him/her on side and ask for a second opinion. I do not know where all the best OB consultants are throughout the UK but I do know that there is a lot of concern and research on OB in the hospitals that do lung transplants because — sadly — 50% of transplanted lungs develop OB, (in those cases it is referred to Bronchiolitis Obliterans Syndrome (BOS).

    So both the Royal Brompton in London and Newcastle have consultants that specialise in OB because of their lung transplant patients. But there will be others. Probably Papworth in Cambridge?

    OB is relatively uncommon, so it takes specialist knowledge to sort it out. OB is usually caused by injury to the lower respiratory tract, (small airways). There are other condition that trigger it, Rheumatoid Arthritis is one. Is that linked to your Ankylosing Spondylitis? Hmmm... Think on...

    Can you remember what it was that made your consultant rule out OB?

    Please keep in touch as I so sympathise with what you are going through.

    All best wishes

    Kate x

  • Hi Kate,

    The thing that made the consultant rule out OB was that there was not significant air trapping. Yet he should not have concluded this as I never had a CT scan done with an expiratory cut as requested by the consultant.

  • Evening Daleywaley

    I waited until I was on my desktop to reply to you because my iPad has an irritating habit of losing its wifi when i am halfway through replying to people on this site and then all is lost...

    I was right then about remembering your story about the HRCT scan. And you told the radiographers that it was not being done correctly. But they ignored you. How infuriating. I knew at the time that mine was not done properly but I didn't say anything. Subsequently I wrote to my consultant who agreed with me, and then I wrote to the radiologist. I thought you might be interested to know exactly what he wrote in reply: "We perform expiratory scans infrequently, and the radiographers' experience in the procedure is, of necessity, limited. In practice it is not normally as issue as the lungs get smaller and whiter in expiration and that is all we are looking for. There are no measurements or quantifiable values which require a more standardised practice." However, he did go on to apologise for the "suboptimal" experience I had of radiology service and promise to pass my comments on the radiographers. Another radiologist in the same department looked at the HRCT scan and said (I am having to remember here because I can't lay my hands on the letter from my consultant in which he quotes the email comment) "There was evidence of air trapping indicating small airways disease and which you (ie the consultant) can confirm with PFT." What may be significant for you is that your consultant should not use the HRCT scan to measure how much air trapping there is. All the HRCT would show was air tripping or no air trapping. And in your case and in mine it was a flawed imaging test anyway. Sorry that I took so long but I wanted to get to the parts that were relevant to you.

    Do let me now how things progress. Please use the messaging service on this site if you feel more comfortable doing that.

    All the best

    Kate xxx

  • Thanks again for taking the time to get back to me. I'm on the phone at the moment and it is not really conducive to allowing a sensible conversation with predictive text.

  • I would seek until I get the answer. I had an open lung biopsy and I have a restrictive lung disease. U.I.P. under I.P.F. I will pray for you to get answers. To me it certainly sounds like restrictive.

  • DaleyWaley your interesting post has posed a few questions. I hope you don't mind me asking them.

    Did your respiratory consult actually say your sob is an enigma to him or is that your term for his failure to arrive at a diagnosis?

    What relationship do you think your spinal condition of ankylosing spondylitis has with your breathing problems?

    Are you aware that one of the side effects of Humira is shortness of breath? Could this be why the rheumatologist wants you to discontinue this drug?

    Was Humira prescribed for you because of your spinal condition alone or are there other problems it would also benefit such as IBS or Chrons?

    Do you gain any benefit from the inhalers you are currently using?

    I understand your frustration with not only the lack of diagnosis but also your breathing problems and I would ask for a referral to another respiratory specialist. I would also ask that a full lung function test be done to establish the condition of your lungs and your breathing difficulty. In addition I would request a full blood examination be done. This should all be able to be organised by your GP.

    Your resting heart rate is fairly normal. Mine is the same as yours and I take a minimal dose (1/4 tablet) of a beta blocker. Currently, having been seated at my computer for two hours my resting heart rate is 94.

    If your current blood test shows there is an absence of inflammation I can understand why the rheumatologist wants to withdraw Humira. It's a pretty heavy duty drug. Because your previous blood tests showed the presence of inflammation does not mean that inflammation is still present. We repeat these tests so we learn our current status.

    I hope you get some answers from your GP. Breathing difficulties do not make for an easy life. I speak from personal experience.

  • Thank you for your reply. I have to say that it is good to hear from someone with similar life experiences. In response to your questions, the doctor has written in a letter that my SOB is an "enigma" to him. My Humira was prescribed solely on the basis of the spinal MRI (indicating a predominantly "burnt-out" spondylosis and a bamboo spine), although I do suffer from IBS and am now being seen by a colorectal surgeon.......oh, and they cannot find the results of my colonoscopy from the beginning of December! It is very difficult to judge whether I gain any benefit from the inhalers (Fostair, Relvar Ellipta, Spiriva Respimat, Salbutamol occasionally); when asked if my breathing improves after use of any of these, then the answer is almost certainly not........I do sometimes become very light-headed after use of Fostair and I get this "rush" in my head. I might need to discuss beta-blockers, but I think there are potential complications when taking these with other medications that I am on.........it is only in recent months that I have developed an accelerated heart rate; it used to be about 72bpm without exertion before the recent difficulties.

  • As you're unsure whether or not you gain any benefit and your breathing doesn't improve after the use of those many inhalers I would certainly be phasing most of them out. I have severe COPD and have eliminated most inhalers. I now use Symbicort rarely and my rescue inhaler (Ventolin) when needed. More is not always better.

    I empathise with you re: spinal problems. I've had a level 4 spinal fusion which is still holding strong after many years. However I've crush fractured two vertebrae above the area of the fusion and the disk between the vertebrae has disappeared. This is causing referred nerve pain along the front of one leg. My neurosurgeon is reluctant to take us to surgery due to the poor state of my lungs.

    Beta blockers are not recommended for people with breathing difficulties but my dose is very low and there are no problems.

    Again, are you aware that a possible side effect of Humira is shortness of breath?

    You mentioned a link between your ankylosing spondylosis and your breathing difficulties. Could you tell us what that link is exactly?

    If I were you I would discuss your worries with your GP and ask him/her to chase up those recent lost results. When I have tests done I ask that my GP receives a copy of the results as well as the specialist who sent me for the tests.

  • Yes, Daleywaley, I've had problems with the understaffed NHS giving me such poor operation aftercare that I now have a lower right leg severely damaged through compartment syndrome in 2 compartments. I only found that out and got the right treatment after the original hospital covered it up, when I moved south to care for my father and asked my new GP for continuing consultant aftercare, which gave me the diagnosis; and then moved back home after my father died, joined a different GP practice and asked to be referred to a different hospital for continuing aftercare, where I got the diagnosis confirmed and proper treatment for the damage done.

    So ask for the second opinion, and keep asking until you get the answers.

  • Thank you Eregendal.

  • Hi Daley Waley, firstly may I sympathize with your predicament,it is not unusual for the hospital to discharge you back to the GP if they feel there is no more they can do at present. I would agree that maybe you should seek further advice to resolve your dilemma and give you peace of mind. Good Luck x

  • Hi Daley Waley, I am a retired teacher and so I know how shortness of breath impacts on a job when you need your voice and mobility .

    I find that certain inhalers actually make my breathing worse, my chest tighter and my Peak Flow fall ....we are all different ...what suits one person may not suit another. My pulse rate goes up too.

    My mother was asthmatic too and her eye drops made her wheeze, one of my daughters can use one bronchiodialtor but not another make.

    Is there evidence from your blood tests that you have an infection or suffer from any allergies .

    I think that a job that involves speaking a lot can disrupt the breathing pattern and may cause hyperventilation in the long term.

    I hope you can find some answers and gain some relief from your symptoms.

  • Thank knitter.

  • I do understand the dilemma I posted in a similar vain. Very often you will find a consultant that has researched your condition and knows what may be the best way forward. But they are a little harder to find than hen's teeth.

    Not so many years back GP's were told Asthma was a nervous condition and treated with valium! I saw my GP when in my 20's with a strange heart beat to be told not to worry we all get that now and then! Some years later I was admitted with double pneumonia to have them say you will need to stay in as the lungs are not good but we are worried about heart beating in such a strange way? When I said I have had it for years plus what my gp said. They looked at each other and one told me they have the crash team on standby!

    I have had a rocky path to find the right tablets that I can take and had numerous procedures to sort it out. It is still not perfect but more controllable. My biggest issue I get with my lung conditions RLD, IPF, PH is when my stats are taken sitting down after some time of arriving my stats are not so bad. So they base my life on a 2 minute check. It was a consultant that took time to watch me go to a room for an ecg etc. and back again, to see how it actually affects me. When I was called in he said "Now I understand what you mean" While sitting I am not so bad but once I do anything my condition goes right down so support O2 might be helpful?" My GP would not entertain it when I went back to them, but my last visit I was asked if I was on O2 as the Fibrosis is worse now!

    Keep on at the doctor for some reassurance that they have looked at all the right places.

    Be Well

  • Thank you for your comments Offcut

  • Check your breathlessness is not down to low iron or ferritin (stored iron), Doctor did not do these bloods for Hubby, we had to get them done ourselves.

    Hubby's breathlessness was a different to his Asthma breathlessness.

    Iron pills sorted it straight away.

    Hubby had breathlessness when walking too long and climbing up hill, he can do both easier now.

  • Thanks......no-one has suggested that before......perhaps I might try some iron supplements first.

  • Check your iron blood levels first DaleyWaley, as taking too much iron can also be bad for you if your iron levels are OK.

    We used the finger prick, home blood test kit from Blue Horizons, they email your results back quickly by email.

  • In a nutshell 1st' have you ever been diagnosed with Emphysema(my prob). 2nd don't stand for all the nonsense. Assertively request to see a lung consultant ASAP, take a list of all your queries and insist on repeat tests of one's 'mislaid'. (forgot to say,lung consultant different from ones already seen,as in a second opinion) any problems getting what you ask for,locate your local health Advocate and report your situation. 3rd probably should have been 1st,contact British lung Foundation. I believe they really are excellent with advice and help with all things related to lung disease. You are naturally frustrated(got the T shirt,with gastric prob at the minute!) but get your head in right place to be ready for any intimidation or avoidance tactics,and ready to jump in with polite"sorry to interrupt,but I want answers NOW. My career etc,my Quality of life etc"just lay it on thick and take notes of any new information,jargon etc that's mentioned. Good luck and happy new year

  • Talli, I couldn't agree more......maybe I have been too accepting of any judgements that have been made on my health.

  • The iron anaemia suggestion is a possibility, if it hasn't been ruled out on previous blood tests - I've had this and can attest to the fact that it leaves you very short of breath on exertion. There's possible bad causes for it tho'.

    A discussion with the BLF followed by a full & frank discussion with your Dr, hoping he suggests a 2nd specialist opinion, but failing any positive suggestions form him, I'd be asking for the 2nd op. There is a process for it, although I have to say I have little confidence in it if in the same hospital area.

    If you feel that a prescription drug is doing you good, I believe you can insist on staying on it, check it with the BLF.

    Good luck.

    Edit: crossed with the one above... :)

  • Thank you soul saver.

    PS I love the name "soulsaver"!

  • Hi, I went through a similar experience before I was diagnosed with Bronchiectasis. My advice is to keep going to your GP and asking for referrals. I was so bad at one stage I begged my doc to help me. The upshot was I paid to see a lung consultant for a one off consultation and I waited until I was called (around 6 weeks) to see ENT consultant. I was sent for a heart echo sound and saw the heart specialist who thankfully told me I had AF which is quite common and my heart was beating normally on that echo. The private consultation which took 30 mins seemed (at the time) to be a waste of time and money, however, it did put me back on the consultants list. After a further bout of pneumonia the consultant said he did not know what was happening to me and suggested we begin at the beginning again. I went for another CT scan first, and hurrah it showed Bronchiectasis, at last I knew what was wrong, even if I had never heard of it. From that moment on I was given the correct meds/inhalers and I have been getting better ever since. So you see being an enigma really does happen to many people and does not show the NHS has let you down. As upsetting as it is the onus is on you to tell your GP that you need his help to find out what is going on. If you stay away you really are getting nowhere. Good luck with everything and I do hope you do not have to give up your teaching job. Take Care Maximonkey

  • Hi WaleyDaley, it is Maximonkey again. I forgot to say, please keep all you information in a file. Keep a daily diary of how you feel when doing everyday tasks and what meds you are taking. Take it with you when you go to see the doc (GP's are more likely not to want your info as they have it all on screen before them) but most consultants will not have as much info as your GP and will rely on you to tell them how you feel, this was my experience. I was hesitant at first to admit I had filed all my relevant documents and kept a diary but my consultant and others I was referred to later where very happy and pleased I had gone to the trouble all this info ended up in their files, so keep copies. This information certainly helped me to a). get a diagnosis and b). get the further help I needed to build up my immunity. So good luck again and let us all know how you get on. Take care. Maximonkey

  • Thank you maximonkey. I have kept all records of any correspondence, and I have also written three letters to my respiratory consultant detailing my health in great depth and how it has impacted on my daily living. As for teaching, the school has been patient for over a year, and my time is up!

  • Hi DaleyWaley, I am so glad you have kept all your correspondence, start writing your daily diary as soon as possible and keep using your inhaler and take your peak flow morning and night. All this information will help the GP to understand what is going on with you on a daily basis. I do not think writing to the consultant would be very fruitful when he has discharged you, however, your GP may refer you back to him once you have kept your diary of events, PF etc. or worse a relapse. As your career is at stake I would pay to see a lung consultant, not necessarily the one you have seen, but that is just me. I could not sit back and let things just happen, I need to be in some kind of control. Good luck no matter what you do and take care. Maximonkey

  • Hi I am sorry that you haven't received a proper diagnosis and I agree to keep seeking answers.

    My doctors are the same. I had an allergic reaction to pencillan after taking it for many years but I dealt with it by myself. Whenever I went to the doctors for ab's I told them I couldn't take penicillin any more. One doctor however clearly didn't believe me and asked me how I knew! I described the reaction and he said 'Well it isn't on your records'. He then proceeded to give me a prescription for amoxocillan.... Fortunately I checked it first and asked the chemist to confirm it was penicillin. I went straight back up to the surgery and asked them to change it. I do know that a first bad reaction to penicillin rarely kills but taking it again can do. So if I hadn't been vigilant I could have died.

    After that I didn't rest until I got them to put it on my notes. You have got to watch those barstewards very carefully! x

  • Cheers coughalot2

  • Really sorry to hear about your predicament. The only thing I can think to do is what I did pay privately for your tests and diagnosis and nothing will go missing because the reports are sent to you and a copy to your gp. You have a bit of a battle on your hands but don't give up. Good luck

  • I can only commiserate and suggest calling the helpline, UK office hours, 03000030555 and wish you the very very best. Peege

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