getting closer to finding the real p... - Lung Conditions C...

Lung Conditions Community Forum

52,280 members63,116 posts

getting closer to finding the real problem

bryan45735 profile image
25 Replies

hi everyone

I've been trying to be as positive as possible still very hard, my health feels very declined since I last spoke so I've been referred to gastroenterology I have a 6cm hiatus hernia & reflux may go down the road of an operation im currently on 6 pills aday for reflux I think is doing more harm my doctors have made the decision that even though I had a diagnosis of copd in 2019 that this is not what's wrong with me it my hiatus hernia and reflux that's driving everything else I.e my dysfunctional breathing current symptoms blouting wheeze (which doctor sais upper respiratory from reflux) that in turn is agrivataing my lungs I feel so graphic but have to keep going like the rest of us I need to go on a strict diet and still no inhalers doctor says I will probably never need one,im still working with the respiratory physio for dysfunctional breathing. This is all mad because when I first came on to this group if anyone remembers I was told its copd and now my copd nurse ect are saying no its nothing to do with that all the stress that gave me I really didn't think they new as I had a fev1 of 93% at the time my doctors recently said we don't want to send you for a repeat spirometry because it will not work as well because of my dysfunctional breathing...... I'm still pretty much confused but I feel I'm getting closer to what's making feel really crap and breathless the fatigue is horrible 😕 xxxx

25 Replies
peege profile image
peege

I just want to say that I really admire your perseverance in getting to the bottom of your diagnosis. Hiatus hernia is pretty sneaky, I often think it could be one of the first things respiratory medics should investigate. The strict diet probably means cutting out fat, acid foods.

I recall a 3 years ago a friend's fit, skinny, chocoholic husband was rushed to hospital for an emergency Hiatus hernia operation , he was given strict instructions for cutting out fat amongst other things and absolutely no more chocolate because it contains a lot of fat. On arriving home he was desperate for a bar of choc so scoffed one telling his wife that just one bar wouldn't hurt. Pretty soon he was writhing in agony on the floor & rushed back to hospital. He was only about 40 at the time & very much regretted going against the dietary instructions.

All the best with it. P

PS this latest might be the cause of the bloating?

bryan45735 profile image
bryan45735 in reply to peege

Thanks peege

You know your own body at the end of the day one xx

bryan45735 profile image
bryan45735 in reply to bryan45735

The blouting apparently is ibs its nothing to do with the hernia which most people get also I swallow alot of air due to dysfunctional breathing one thing that has come to light is the fact that not only dysfunctional breathing coexist with copd but it also coexist with hiatus hernia x

peege profile image
peege in reply to bryan45735

at least if you get the hiatus hernia sorted it could improve your quality of life so you get more enjoyment and fewer breathing issues. Good luck Bryan 👍

Alberta56 profile image
Alberta56

I'm sorry to hear things are so bad with you, but I hope these new findings mean that there is light at the end of the tunnel. It's taken a long, long time to them to get this far. I hope they will be much quicker in getting this hernia sorted out. xxx

bryan45735 profile image
bryan45735 in reply to Alberta56

Thanks alberta56 xx

sassy59 profile image
sassy59

Good to hear from you Bryan and it seems as if you’re finally getting to the bottom of things after a really stressful time. You’ve been so very determined to carry on and deserve lots of support which I hope you get. Good luck to you and wishing you well. Xxx❤️

bryan45735 profile image
bryan45735 in reply to sassy59

Thanks sassy xx

Katinka46 profile image
Katinka46

So sorry to hear about all this. There is very little I can add to others replies. Thank you so much for posting.

Love and all best wishes

Kx

B0xermad profile image
B0xermad

Good to hear from you again bryan,I really hope they get to the bottom of your problem and sort it pretty soon so you can get some relief from the pain and impact on your health

Thinkhealthy profile image
Thinkhealthy

oh that sounds tough but the hernia can be operated on ? Could be huge improvement in your health if so. Fingers crossed they do get it resolved for you . Reflux is the pits!

Biofreak profile image
Biofreak

It definitely sounds like they may be getting to the root cause of your dysfunctional breathing. Hiatus hernias can be repaired and may be the cure to all your breathing issues. My daughter has just been diagnosed with a 3cm hiatus hernia and has had reflux for over 10 years treated with omeprazole which does nothing to alleviate the constant sore throats and breathlessness. She was diagnosed with asthma and given inhalers all to no avail. Even now it's been diagnosed they don't want to operate because they say it's not big enough. I don't agree and am convinced that the hernia has been the problem all along. So she's going to push for the repair.

bryan45735 profile image
bryan45735 in reply to Biofreak

its horrible does your daughter get breathless when led down ? My doctors says ive not got asthma its the reflux and then when i get breathless i thinks its the copd but its not

Biofreak profile image
Biofreak in reply to bryan45735

She's breathless because the acid reflux inflames her esophagus and makes her cough which in turn makes her breathless and has also affected her vocal chords. She may have asthma but that was only a GP diagnosis not a consultant. If it's asthma (which I suspect it's not) then the inhalers aren't working. This makes me think that the hiatus hernia and uncontrolled acid reflux is the main cause of her beathlessness both standing and laying down.

bryan45735 profile image
bryan45735 in reply to Biofreak

thats exactly how i feel 😪

Biofreak profile image
Biofreak in reply to bryan45735

So Bryan if they offer to repair the hernia, are you going to accept it? It could solve your problems. At least it should improve things for you.

bryan45735 profile image
bryan45735 in reply to Biofreak

yes i will ecsept, but i just hope thats what it is

Izb1 profile image
Izb1

It seems to me that they should check everybody newly diagnosed with lung disease for this as it comes up time and again. I wish you all the best and hope that things improve soon x

Biofreak profile image
Biofreak in reply to Izb1

Totally agree Izb1. You hear this so often. Gastric reflux and silent reflux/ hiatus hernias can lead to or exacerbate lung conditions. What annoys me about it is that even when it's diagnosed the hospital doctors don't seem to attach any importance to it and don't want to operate till it gets to a significant size where they deem it dangerous. In the meantime the GP keeps prescribing ppis to try and control the symptoms and even when they don't work there's still a reluctance to operate.

Izb1 profile image
Izb1 in reply to Biofreak

We just dont seem to move on properly in this country for some reason we want to remain in the dark ages. I know alot is down to cost but for goodness sake there has been alot of money invested in the nhs or should i say badly invested and we the patients are paying the price x

Biofreak profile image
Biofreak in reply to Izb1

Yes you're right. I'm sure cost is a factor but when you consider how much is paid out for prescriptions for Ppis and anti reflux medications I'm sure they would save money in the long run if they repaired hiatus hernia's once diagnosed. The misery and complications caused by something that is operable but ignored by the medical profession in favour of long term medication such as ppis, which also causes other problems like b12 deficiency, well just beggars belief. Sorry for the rant but I now have two close family members who have both suffered as a result of this kind of in-action. My daughters vocal chords have been permanently damaged as a result but they still don't want to operate. Currently saving to pay privately. Rant over 😁

Izb1 profile image
Izb1 in reply to Biofreak

Rant away Biofreak, I think you have every reason to and I agree with what you say. I am sorry to hear about your daughter , this cant be easy for you, we are living through hard times at the moment x

Pipswhips profile image
Pipswhips

they keep on telling at the hospital and surgerythat ihave dysfunctional breathing but 2 yrs ago they did do spirometry test but the one at surgery lost power and didn't save the results tried another but they decided it would be to much for me. The refered my to the community respiratory nurse she did one and sent result to my gp and the consultant.

Ialso have acid reflux also hernia but they aren't bothering with them. So you can have a spirometry test so enquire about it again incase your getting short changed

Biofreak profile image
Biofreak in reply to Pipswhips

I think you should start making a few demands pipswips and tell your Gp that you want to be taken seriously and want the hernia repaired. Telling you you've got dysfunctional breathing but not doing the hernia repair which may or may not be a contributing factor isn't helping you.

Maggie_Mae profile image
Maggie_Mae

I’m in agreement with Bio on this one .. pipswhips start pushing your GP on this

You may also like...