Well whats going on then???

Hi all,

I hope eveyone is having a good day.

I saw my lung consultant yesterday. He told me my blood test for Alpha 1 deficiency was clear and my chest xray was clear. He seams completely boggled what has caused my lung disease and current breathlessness. He's sending me for a CT scan and if that shows nothing then an exercise test. My heart consultant who I saw Monday has recommended an Albation operation for my Artillery fibulation. Is there more going on with my heart then has shown up which has caused my lung condition?

So what can be causing this constant breathlessness? It's hard not having a diagnosis. I just want to know whats going on and what I can do to sort it! Just needed to get that off my chest.

BtW if you remember me moaning before, school is organising help for me with the school run, which will be brilliant :-)

I am such a moaner.


11 Replies

  • Maria. Your story chimed with me. It is awful when the drs don't know. My bronchiectasis was well under control until last year. I had an episode of Atrial Fibrilation in Feb and became more and more breathless as the summer went on. My heart consultant and resp consultant have been blaming the opposite ever since. Heart says lungs, resp says heart. Had CT scan and xray which offered nothing new. Had heart scans from both consultants (different doctors) which threw nothing different up. Also had a scan of my arteries to check there was no embolism. Heart man has given up on me - says lungs, end of.

    All I know is that I had AF last year and since then I have had severe breathing problems. I also had an increase in fluid in the lungs and now take a 'water' tablet.

    I wish you well and hope the Ablation solves your problem.

  • Hi Maria, You are not a moaner. You are unwell and in a state of limbo. I hate being in limbo, because once you know your diagnosis and treatment, you can deal with it and learning all about it if you want. I am one of those who needs to know all the details of my health care ( it drives some of the doctors a bit mad), but I am a firm believer that knowledge is power. Patients can find out so much for themselves nowadays and look and see alternatives to what is offered. I hope you feel better getting that of your chest, and remember that you are not alone. I know I have asthma and copd but am waiting to see if I have bronchiectasis as well. Hopefully, I'll find that out next week. Regarding your heart and lung conditions, to be honest either of them could be causing your breathlessness, although one may be the main cause. The CT scan will give the Dr a lot more information and will show whether lung disease is the main cause or not. I have been waiting a while on this appointment on Tuesday and am worried that nothing will show. When you know something is wrong and tests come back negative it is like a kick in the behind! Its not that you want that condition, you just want to know what's wrong and get treatment. I know exactly how you feel and they will find out. If you are like me, you just want things done instantly. Unfortunately the NHS does not work like that. I hope you find out asap what is wrong and get your life back on track. All the best and take care. hugs xx

  • Thank you. I'm just like you huggs, I need information and I am a very pro active person. I know sometimes there is no easy diagnosis, my eldest has global development delay and we have struggled to get a diagnosis for him. You need something to fight against.

  • Its the not knowing that must be horrendous for you. I too am totally proactive so need to know what I am dealing with (funny isn't it my husband is the opposite). I hope that the Ablation solves your problem and you are soon fighting fit. Take care, stay positive, lots of love TAD xx PX good news about help with the school run - I remember it being very stressful somedays!! (without illness!)

  • Hello Maria, I'm so sorry you didn't get any answers yet, it looks like it's all going to take a little more time! Good news that you'll have help with the school run, you must be so frustrated with it all, please don't get despondent I'm sure they will finally get to the bottom of it, try to put it from your mind and go easy, don't push yourself! keep a positive mind, please let us know how you are doing, love huff xxxxxx

  • Hi there,you are definitely not a moaner! So glad the school run,got sorted,good news!

    It is so frustrating,when you are waiting to get the right diagnose,im afraid patience is the name of the game!

    You will get there I'm sure,& do wish you luck with it all.xxx

  • Hi Maria,

    I know how you feel, I'm in exactly the same boat. Just had the exercise test which has shown a problem where x-rays, CT, V/Q Scan, Echo, blood tests haven't. It was such a relief seeing the O2 levels drop when I cycled - proof at last that it wasn't in my head! I don't know if I'll actually get a prognosis off the back of that but I feel a bit like Spike Milligan's epitaph "told you I was ill".

    The results of the exercise test need to back through the heart and lung consultants (and according to the technician they ALWAYS say it is the other one) but I think we are pointed to lung more.

    Are your consultants supportive of finding the answer? Mine weren't so I convinced GP for referral to Royal Brompton (on advice from BLF).

    HOPEFULLY, we'll know by the end of the year and can face 2015 head on ;-)

    Take care and try and keep calm - we are on the road, it just happens to be a long one.


  • Hi Maria, I agree with Creekykneed. It took some time for my consultant to see that I had another problem that just coughing and shortness of breath or "asthma" as he had put it. He referred me to the Royal Brompton who had me for tests and kept me for a few days to see if I had some sputum that was infected. Evnetually I was dx with bronchiectasis, I went through Alpha 1 antitripsin tes which chowed negative, I had allergy tests. They were really thorough. The first thing they asked me was how long I had smoked for. I haven't in my life, apart from one day at school! But my father smoked, so got the disease through passive smoking.

    If you get referred to the Royal Brompton, please ask for hospital transport to be organised by the Brompton itself.

    I don't know which area of the country you live in, but it could be a long journey! But well worth it because they are the top specialist in the world.

  • Im same ive had two consultants one says asthma and other says chronic idiopathic bronchitis!!! My poor gp stuck in middle not knowing what meds to prescribe meanwhile im wheezing coughing and painful chest surviving on salbutamol and atrovent till they come up with treatment plan ive now got nose spray antihistermines and codene still tight wheezy!!! Its very concerning that we still feel ill but tests come back clear or normal hopefully answers soon xxx

  • Thanks all.

    You never know maybe my heart opp will sort everything (wishful thinking).

    I think I'm going to have to ban myself from goggle untily next appointment. I'll be constantly questioning everything otherwise. The curse of too much information but no answers.

  • Good luck with the op ! At the moment things seem to point more toward heart then lungs.

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