I'm new here, but not new to respiratory issues. Having had ear, sinus and lung challenges my entire life, ( I'm 64 ) I was finally confirmed as having at least two pathogenic variants of primary ciliary dyskinesia and a single gene marker for cystic fibrosis. My greatest challenge is to stay infection free, but I still manage to get pneumonia several times a year.
I've learned to be very proactive and to have a standing order for sputum culture when I suspect I have an infection needing antibiotics. That way I'm taking something that actually targets what specific pathogen I've got. I'm in the states so perhaps it's harder to do with your system of care?
I'm kind of a genetic recount waiting to happen and grew up being the only family member with these health issues. I'm curious about how others have dealt with always being sickly, who were perhaps made to feel as if they were lazy or malingering or worse, merely seeking attention.
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TomTitTot
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Welcome to the site, you are right how health is dealt with in other countries is much different to UK. Like yourself I have had chest problems for many years which is now diagnosed as Asthma/ COPD plus other things like arthritis since in my 30s they all run in the family i.e genetic. I am slightly older than you , nice to speak to you hope to share facts ect again soon have a good day
That's my girl Edith, one of my five. I wish I could teach her to vacuum as she gifts me lots of hair...
I actually went looking for a site like this because I just got nailed with two different bugs. I won't call it a pity party, just too tired to get much else done, and it's nice not having to explain to people I'm feeling poorly and why, because us wheezer types know the drill. 😷
Welcome to the site.. In my family I was the one to inherit all kinds of problems.. I know what it is like with chest infection had them all my life.. It is very hard to work and get things done but I have been really sick since I was in my twenties.. . I have learned to work through the day and not push myself.. My life as yours is trying not to get another infection and dealing with people being fed up with me .. I ended up reading a book and this is the title.. F*ck Feelings best book I have ever read.. It taught me how to deal with people what you can and cannot control.. I remember my mother calling me lazy and I had pneumonia at the time.. I found out I had tons of allergy's that made me feel tired that gave me lung infections then it ended up being COPD...I.. Every one is going to have there opinion about you and being sick .. But I weeded them out even if it is your mother or sister any one.. They don't walk in our shoes fighting to breath fighting depression .. My end life is going to be nothing but positive people.. After I read the book I view life different... Best advise about life. I'm also getting blood work done to see if I got the gene for COPD my uncle died from it never smoked.... Keep moving forward and protect yourself from people.. Its about them not you......
Clamdigger hi back. I'm in my early sixties now, but have been retired since I was thirty three. One of the best little bits I ever read said, Always remember, breathing is not a collective activity. I've held on to that. Recognizing also, that it goes over some people's heads when I'm not breathing well that NOTHING ELSE MATTERS!
I would suggest that testing for primary ciliary dsykinesia might give you an answer. It is a rare genetic defect (probably just under diagnosed) and has several respiratory effects. But as you know, we live in our bodies and often are our best intuitors that something ain't quite right. Keep searching for that answer and good luck!
ps... my sister still didn't quite believe me until I gave her the geneticist's report....
Hi nice to meet you. I am the opposite as I was the healthiest one in my whole family and was always very robust and active.
That is until I gave myself copd through smoking. I am very annoyed at myself for destroying my good health which is a great gift and I squandered it. x
Hi, I've a brother like yourself. He's trying so hard to quit smoking, it being not only addictive and habit forming, but also a kind of emotional comfort for him. We all just gotta take it slow some days and keep breathing.😏
I was upset because I was told to move because of my allergy's I was told what to do around the house.. Didn't move didn't do what I was suppose to .. No one told me I would end up with lung infections that turn to asthma that turned to small airways disease.. So pissed with myself....And you can really beat yourself up some days....
I have come to the conclusion that all health systems have their for and against but prevention is better than cure. So I’m trying to get what I need so I can live my daily life without too much discomfort.
Oh I’d better give you a link, it is complex. I have Sporadic LAM. Mine is stable which means I am not on Sirolimus or Oxygen yet as far as I can gather.
Well once diagnosed I would say one day at a time..Physically I tend to be proactive. When I feel something is not right I don’t let it linger, I have an action plan, I follow it. If I’m not happy with the way it is going, I go to the doctor, the hospital, wherever..I don’t take no for an answer 😃
Of course there are set backs but I live through them, usually bronchitis or pleurisy or cysts rupturing. But I feel grateful that I have been lucky so far in comparison to some of my LAM sisters.
Mentally, I tend to be a positive person, so I try not to let things upset me, I look for solutions. I do mindfulness meditation, breathing exercises, exercises, essential oil massages, what I feel like at the time. And I have my family life, my hobbies..
Holy wow, woman! A million cheers for your attitude🤗 I'm curious how it first got your attention or rather, what you were experiencing that got you diagnosed. Did you have to endure skepticism about why you were short of breath (as I presume you were) told it was asthma or did you go a round or three of misdiagnosis?
I'm Anne by the way. The cat is Edith, Edi for short and one of five. I've also two canine beasties. They all keep me going (if only to vacuum up all their hair.)
I love Edith! We have an Aria nowadays she is 6. You’ll find some past pictures on the forum! I indulge 😉
So to answer your question, it didn’t get my attention, well I was diagnosed with asthma around the age of 48 I believe. I had my lot of rhinitis, sinusitis, bronchitis for years in France and England but I moved to work in the Swiss mountains when I was 35 I think it probably helped. There the doctor said it was allergies which caused the infections. So got ENT check-ups and had antihistamines and steroids nasal spray for years.
Went to work in Barcelona, immediately got a heavy bronchitis. Went to the hospital had an xray. Lung cysts don’t show on xrays. The doctor said this is Barcelona, polluted, very humid, not good for you watch out. Had my first Ventolin inhaler.
Went back to London 4 years later, GP added another inhaler Clenil in those days. Continued with bronchitis, I was teaching I thought I got a lot of viruses from the children.
GP referred me to the respiratory clinic at the Charing Cross Hospital. They continued with the asthma diagnosis, just a manual spirometry, not even an xray or a Ct scan. Always a different consultant well first time I saw a good doctor then I got a load of poor locums..the asthma nurse was good. She thought I didn’t have asthma she tried but it was never followed through by the consultants.
I was put on fostair then seretide, given clarithromycin 250m as preventative and clarithromycin 500mg and prednisolone 40mg for 5 days as rescue meds.
My bronchitis became pleurisies some time. I was diagnosed with severe bronchial asthma. Just like that. No further testing. I thought ok I didn’t know differently.
Then I retired at 62, had to look after my Dad, was going to Switzerland, went to the hospital there when I was sick, had to look after Mum, was going to France, went to her doctor’s there some time when I was sick.
And in 2015/16 I was not recovering, 3rd lot or more of antibiotics, breathlessness, coughing blood again so I was in a hotel in France opposite Mum’s care home and I call the on call doctor service.
Had x ray and Ct scan, discovered the diagnosis and the doctor said when you are home you see a pulmonologist. The scan said multiple lung cysts.
I had one at the local hospital in Switzerland, sent him my report he said Fran this is a rare disease, when you come we have to find out which one.
It was February 2016 by then. I was 64. I must have been misdiagnosed for years.
I didn’t go back to England, my daughter moved me to Switzerland. I was undergoing many tests and looking after Dad.
I wrote to my English GP. He had been kind, he had referred me and he wasn’t a specialist but he knew something was up. I told him what I had and told him what I thought about Charing Cross Hospital cheap approach to lung disease. I said I wouldn’t make an official complaint or anything it would be useless but I trusted him to be more sceptical with their diagnosis from now on.
I'm just stunned that the health care systems are so different between your experiences and mine. I have an internist, several specialists and relatively easy access to referrals. The greatest difficulty I've ever faced is having to wait up to several weeks to be seen. (Well that, and the occasional idiot)
And, unlike what it sounds like you experience, I can request to be seen by someone else if the doctor, or I should butt heads. I can request cat scans, pulmonary function tests, etc. basically whatever I and my doctor might think is necessary.
Temporarily interrupted, must feed demanding cats...
How awful, I think, to be carrying on as you were, knowing all the while things were not right and to be so frequently misdiagnosed! I guess I'm trying to to fill in with words, where there are no words.
I so admire your positive outlook because I've met many who resign themselves and give up (they irritate me) but then, I'm not a very patient person. I read on the bad days, or tuck up with videos, on good days, of which there are many, I do what I can. The rest just doesn't get done....
Hi and welcome Tom 👋. I have spent my whole life as the 'poorly one' in our family. Born the youngest and tiny, with dislocated hips then recurrent chest and ear infections throughout my youth, diagnosed asthmatic at 11, then COPD and bronchiectasis a year ago, I have spent most of my life with pneumonia, chest infections, pleurisy etc...so I know how you feel. I have only had two chest infections in the last year, and pleurisy once and i count myself lucky ha ha. As for other people, yes they make you feel lazy, weak or stupid for not going to the doctor 'early enough' etc.
As you say, all you can do is look after yourself, make friends and get advice on here, and keep as healthy as you can. Good luck and enjoy the site 😊 x
Thank you for welcoming me. It's good to share the experiences of those like myself who aren't able to take breathing for granted. That said, I too am the youngest and was labeled, poorly or failure to thrive (as those it were somehow my fault.) But hey, I love being alive, and know that it gives us the gift of being sometimes, more compassionate and observant when we can't take good health for granted.
Yes it definitely sharpens your senses 😊. You'll find lots of lovely supportive people on here, most of whom make the most of their good days, and make a point of not caring what other people think about their conditions. Labels only stick if you let them 😊. Have a good evening x
I'm rewriting this so apologies if I'm repeating myself. I might not have hit reply and so it disappeared into the ether.
I had a notion to look up your posts and to learn you're battling cancer. I have no ovaries because I always thought that would be the cancer I got, but got triple neg breast cancer instead. Just so wanted to send massive hugs 🤗 your way!!
Hi Anne, firstly I'm so sorry for calling you Tom...total assumption on my part! Forgive me...
Yes I have a bit of a fight on my hands at the moment, and just for a change its not long related. Not yet anyway 😉. Just one of those things I suppose. I joined this site terrified with a new COPD and bronchiectasis diagnosis, but treatment for it has been on hold because I've bigger fish to fry right now.
I'm sorry to hear about your breast cancer, what a blow after you pre-empting the ovarian cancer and having surgery. Are you in remission at the moment or still fighting? I wish you the very best either way xxx
Anne, I'm glad you're upright! Yep, you have a fight ahead of you and mainly one of spirit, I mean, don't worry so much about the battles, as win the war!
It's a funny thing having one significant health issue and then to get broadsided by another. I'm still in that window, only four years out. Apparently five makes one a survivor. I know (shared experience, shall we say) that you have bad days, but attitude is everything and yours is the best kind. Cry when you have too, laugh as much as you can. I went thru chemo like a kid with chickenpox, it wasn't fun... but a friend said to me, it's a bit like having a baby, once thru labour, don't look back.
Hi, how are you doing? Thinking of you enduring all the blankety blank, lovely miseries of chemo (and damn it they're cumulative.) It's so hard to say all that I can't find words to say. I don't know your exact situation, it sounds as though you have helpers, I just so wish that I could help in alleviating all the physical miseries of chemo. A magic wand, so to speak, that took them away.
I guess what I'm saying is that if you need a place to vent, with no strings attached, I'm here. I kind of get it, I won't be telling what you could, should, and ought to be doing...
Hi Anne, thanks for thinking of me. I meant to say a huge well done for 4 years clear too! You're amazing ❤.
Yes chemo is its own kind of hell...one I've been in since November. This is my 3rd round of treatments, 3rd set of drugs to try...I had to get much worse before I got the drugs that might cure me...a funding issue I believe. I've had standard debulking surgery in the beginning and then emergency surgery in January for missed tumours that had ruptured and internally bled. A lot of recovery this year, a lot of treatments.
I don't seem to cope with chemo well...and I'm a single mum of 4 daughters, aged 2 to 14, without any family support, so I've a lot of support from a hospice and one elderly neighbour.It keeps me going 😊
Thanks for offering to be a sounding board...that's really kind. It's a long difficult road to be on.
Oh I'm so glad to hear from you, I just sent out a kind of postscript on a new message for you because I thought I'd sent it to myself.
Chemo is its own kind of hell isn't it? I may have been lucky in that, I was on my own, having only myself to look after. The animals didn't see it that way of course, but tolerated me better and obviously need attention differently than children do.
I know people often speak of family support, but for whatever reason it's not always there, consider me an agony aunt, eh...
Hi Yes you had but I saw the word chemo and figured it was for me😂. You can always PM (private message) me if you're not sure😊.
You're right it's hard to care for others when chemo is in your blood stream. Normally I have lots of chickens, and grow veg and fruit etc but a lot of that has had to stop this year. I can barely cope with the school runs 😂. Needs must eh.
Your cats are gorgeous by the way...I love the names 😊 xx
Sounds like you got yanked out of a very full life, a pretty lousy way to be told by your body things are gonna change.😒And then there's seeing yourself in the mirror and because of chemo's side effects, thinking, "Who in the hell, is that?" .🤢
I hope no one is telling you how brave they think you are, or that they really admire your courage. I say that because I was always dumbfounded by those remarks. As if I had chosen the experience and was just so admirable. Hang tough!!
A very wrm welcome to you, although I am sorry you have pathogens for PCD and a gene marker for CF. You don’t say how old you were when they found connections with PCD and CF. I am shocked that we have heard, quite recently, from someone who had sinus problems all their life, infertility and situs inversus and yet not one doctor figured out the glaringly obvious clues until later in life.
Our two health systems are different, but with regard to sputum samples I find them very similar. I have a supply of MC&S forms, labels and lab bags and put one in at the first signs of an exacerbation but I will then, in line with the guidelines for bronchiectasis start an ab and when the culture and sensitivity comes back either stay on the same ab or change. It does make me sad when I hear from bronchie friends in the States who sometimes find insurance doesn’t cover or sometimes make their own i.e. hypertonic saline.
I’ve had bronchiectasis from babyhood and I am now 70. I did spend lots of my childhood in hospital (which was common in those days). I have done all the normal stuff in life without too much by way of intolerance. I have had the usual i.e. older couples taking 2 steps at a time, telling me (smugly) I need to stop smoking. Grrrr. I would just get upset but not now I lay it on thick and let them be the ones who feel bad and maybe think before they open their ignorant mouths to people. Also found as I have got older some ‘friends’ fade away when you have to say no or let them down re outings. Positive is you know the friends you do have are true friends and not fair weather.
Hi back, want to clarify, I have pathogenic variants on the gene (there are several) for immotile cilia meaning they don't function as they should and thus can not clean my respiratory tract of pathogens. I have one marker for cystic fibrosis but it not enough to label me as a cystic.
I think because they've only recently been able to gene test for primary ciliary dyskinesia that a lot more of us exist than are currently recognized. I'm a bit like your friend, hindsight makes it obvious that symptoms match diagnosis.
I can so relate to being told if I just did this or that I'd be more able to do, this or that. I have the cough from hell that mortifies me, tiredness that derails me far more often than I'd like, and to top it off, have dealt with a litany of health issues most only experience one of, if that. Maddening, ain't it. 😏
Thank you Anne for the clarification in your own case. There is a document which explains the history and progress of cystic fibrosis decade by decade. Unfortunately there is very little with regard to bronchiectasis, which has long been an orphan condition and a very neglected area of respiratory disease. Thankfully this is now changing. eg. I was diagnosed in 1948 at the start of our NHS but I have no idea what methods were used (rigid scopes perhaps), or was it that bronchiectasis was considered more prevalent in those days. We had no paediatric respiratory consultants at the start of the NHS, but I was ‘lucky to have the first paediatrician in my city, who was an excellent doctor.
I appreciate that although PCD was recognised certainly by the 40s that serious gene testing has come to the fore within the last decade. I also appreciate there are many varients. My point with regard to the person I mentioned was that they were still seeking a firm diagnosis, to this day, when presenting with sinus and ear problems, frequent exacerbations, infertility and situs inversus. Now I would certainly have expected a medic worth their salt to consider PCD as a possibility and refer to one of the few specialist centres. I also know a person in the States who was diagnosed a long time ago, along with siblings.
I am sorry you have a marker for CF but glad it is not enough to label you as a person with CF.
I believe they are now realising that bronchiectasis is much more prevalent than previously considered and therefore so must the incidence of PCD and perhaps CF, although the more proactive cons test for cf when someone presents with bronch.
It seems to me that we all appear to have the same high maintenance burden i.e. nebbing various medications and physiotherapy.
I really take on your comments about coping at the same time with other health issues and yes it is maddening and frustrating. The GI problems I have stop me from doing many many things, including being part of a patient advisory group, which made me feel useful again, but it ruins many personal social occasions. Actually much more than the bronch and I think it is because I have always lived with bronch and am always consistant and compliant with my management programme.
I hope you find lots of support here - I know I do!
Between you, and Happylondon, I find myself just boggled by the health care experiences you have with NHS. I'll try not to get overly political (we have the orange buffoon and you have NHS)
Insert warning here: I confess I tend to wax facetious rather than poetic
Like you, it seems rather obvious to the discerning mind that your friend having situs inversus would be a great screaming clue. I know for myself, that had I not persistently insisted that all of my lifelong chronic health issues have some basis in genetic anomaly, I would have the generic label of COPD. But then, I have a researcher's (read, anal) bent.
I personally find it maddening that when a medical test comes back negative, somehow the issue is then considered moot, rather than looking further to resolve the complaint. I'm not good at fading away and have learned to be very proactive.
I do hope that your friend can have their case more carefully examined by a specialist. To me, it's rather like shadow boxing. Something is not right, we know it, we live in this body, something is off, it's not in our head, find it. It is difficult enough having health issues that are not yet fixable, that are chronic with acute exacerbations, and that quite frankly, most of us would rather not deal with either.
Yep, the good ole umbrella of COPD. Reminds of going to a counselor and being told, you know you tend to intellectualize. And, that means - WHAT?
I don't know if it's the patronizing attitude of the doctor to blanket define someone's lung issues, or if they're so overburdened in the health care system that refining the level of care to each person is just too costly.
I have no wish to be poliitical either Anne but really find your comments re Trump and our dear NHS, I am assuming by way of scorn, a bit sad.
It may sound contradictory after telling you about one person’s issues but the NHS is very dear to most people’s hearts here in the UK -paid for but free at the point of use.
As you say it’s all about being proactive and if you also have proactive consultants then things can go very well whatever side of the pond you are on.
I meant absolutely no slur against your health care system. It merely seems as if it's a bit more challenging to access a specialist. And that was why I added the warning that I tend to wax facetious. We, over here, are having the recent health care law under constant assault for repeal. It is so desperately needed by so many, and while certainly it might bare improvement, repealing it is such a bad idea. ( and it is coming from the top down)
I hope that clarifies things a bit. Many of us here in the states lack any kind of medical insurance and we want to have care for all, as you have.
Yes Anne of course it does. No problem. Actually it’s really interesting to hear about health systems in other parts of the world. We have our own concerns re privatisation by the back door.
I believe we are on the same page and want the same excellent health treatment for all.
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