Still Confused With My Mum's Diagnosis

Hi everyone,

I hope everyone is as well as can be and that you're enjoying this glorious weather.

Well, I'm still so confused with regards to my 76 year old mum's diagnosis! Back in May of this year, I took her to A&E due to severe breathlessness upon exertion. After spending 8 days in hospital, she was diagnosed with emphysema and (bronchiecstasis / or UIP or NSIP IPF) - I put it in brackets because each letter says something different. She has inhalers and is on 15 hours of ambulatory oxygen at 3lpm per day.

Well, my confusion starts here ....

On her notes, everything is described as 'minor' and if you look at her she looks absolutely fine. She doesn't display or have the 'common' symptoms of these diseases .... i.e trouble sleeping / pain in her chest or lung area / excess mucus / coughing etc, however, she does have the breathlessness .

She constantly burps, has the hiccups, has a very painful area below her chest cavity , which presents itself when she starts walking, thereore, she can only walk about 10 steps before being struck down with severe breathlessness and a tightness in the area of her diaphragm (not her chest). The inhalers she has been prescribed do absolutely nothing to help it. She just has to stand still for about a minute to let the discomfort ease.

I know it can sometimes be a bad thing, but I trawl the internet every day researching her symptoms and I'm convinced that the cause of her breathlessness is a hiatal hernia. When she eats, she says it feels like the food gets stuck half way down and she often feels nauseous. When she is sitting, she isn't bothered by any breathlessness, she sleeps 100% soundly at night, can shower fine, can cook, do the ironing with no problem, but as soon as she starts to walk, that's where it all goes wrong. I've read that a hiatul hernia can grow so big that the intestines ascend so far into the chest cavity that the diaphragm gets surpressed preventing air getting through as do the lungs as they can't inflate properly because there's no room.

Has anyone else experienced anything like this as I'm going to push for a second opinion? I don't doubt for one minute that she has a lung condition, but as everything has been described as minor and she doesn't present any of the typical symptoms, I'm a bit perplexed by it all and will try and do all I can to get a second opinion. A hiatul hernia can cause acids to leak into the lungs which can cause the scarring and the bigger it gets can cause the symptoms she has. I would have thought that if she could only walk about 10 steps before the severe breathlessness takes over, she would also feel a little poorly, but she feels absolutely fine.

Any comments would be gratefully appreciated as some people say that the portable O2 has been a godsend and they can walk quite a distance, yet for my mum, it does nothing. I know it's mainly to keep the organs oxygenated, but she has had all those checked and they're all fine too .... at the moment.

Sorry for the waffle ...... I'm just trying to help her all I can as I know she it totally fed up with feeling great but being struck down with the discomfort as soon as she starts walking.

Love to you all

Julie (and her Mum) xx

8 Replies

  • Go for it. Doctors are very poor at coping with patients who have several things wrong with. They tend to concentrate on the area that they know about and do not "think outside the box."

    You are probably right about your mum.

    All the best

    K xx

  • I agree with Katinka46, you should go with your feelings! Poor mum, she deserves to get an answer so she can do something about getting better.

    grannyk3 🌹

  • Could be like you say I would ask what her stools arre like she passing.

    If is guts end trails related she might be passing lose then solid

    Lung dieaes causes caverty in chest free space nect to guts and bowles push up into free space and cause compacting of stoll but also squashes stomach and causes reflux.

    Guess that would cause feeling of food stuck ... Try smaller meals more often and ask if she's constepated

  • I also agree with the 2,ladies I think your spot on and defo go for it good luck x

  • Good idea to get a 2nd opinion Julie. I have an hiatus hernia and take Lansoprazole for it. Before diagnosis it was extremely uncomfortable when l ate anything

    Good luck to you in getting the correct diagnosis and treatment for your lovely mum. Xxxx

  • Hi there, go for the second opinion. The symptoms do not sound like chest but chest problems do sometimes have stomach problems along side, which can effect the breathing.Doctors tend to like to treat each symptom not look at the all over picture. Best Wishes for you and your mum to get to the bottom of this matter, so correct treatment is given x

  • Hi I have a variety of airway diseases & have also been diagnosed with GERD ( gastric acid reflux) too & have to take gaviscon advanced after each meal & at bedtime. Pain gone - & its made a big difference. My specialist says lots of people have this & dont know. It can also affect your breathing. I would ask to get your mum checked or try gaviscon after each meal for a few days & see if it makes any difference. Hope this helps

  • Was she breathless first, then after/during hospitalisation developed the burping and pain below the chest cavity? Is the 'pain' discomfort/bloating, feeling like you've eaten way too much?

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