moderate restrictive lung disease

[Photolady]

I am 53 and have recently had a mild heart attack and was diagnosed with degenerative disk disease and just found out that I have moderate restrictive lung disease but I don't see the doctor for a couple of weeks. All I know about it is what I read on line and I ended up scaring myself. Do most people get a lung biopsy. I have had a ct scan that showed scarring and a breathing function test that showed the restrictive lung disease. Any information would be appreciated. I am on a cpap machine at night and still get breathless at times. I am tired all the time and when I walk short distances my back freezes up. Does this sound familar to anyone?

[Hidden]

Morning Photolady 😊 I would just like to welcome you to this very friendly and helpful forum. I'm comparatively new here myself but find the comments and information here so helpful. I'm a carer for my husband who has both lung and heart problems and I would like to reassure you that, with healthy living and the right medication, life can still be good. I'm sure there will soon be lots of advice here for you. Take care.

Jan xx

[Photolady in reply to Hidden]

Thank you!

[toerag]

Oh yes, very familiar.esp the tiredness part. I have COPD , using pills and nebuliser altho can't really get on with the CPAP.

The answer is, and it may sound daft, is to keep moving every day, and have an activity that makes you mildly breathless daily... I'll leave that one up to you, mine is walking the dog !!! Also keep your fluids up, most people with or without lung conditions don't know you need about 7 Litres of liquid Daily ( water is the best as coffee and alcohols have the opposite effect of drying your system up..) Don't believe everything on-line , it is just an information source for generic patients and as we are all different.... my GP says I have a Baby's chest....it doesn't go anywhere without a rattle.....

[m75t in reply to toerag]

Hello Everyone, I am in a similar situation so thank you for all of these points. My 'mildly breathless' daily activity is playing the drums (briefly: an electronic kit with sound-cancelling headphones--I don't want to be evicted by the family). Thanks again and, Photolady, I'm sure all will continue well.

[toerag in reply to m75t]

Read the DEFRA pollution warning posted on here... so you can take precautions. It due Thu or Fri but some may already be here.

[Photolady in reply to m75t]

Thanks and good luck to you!

[Photolady in reply to toerag]

Thank you!

[Offcut]

copd.about.com/od/copdbasic...

This is a good link to explain COPD and RLD

I have RLD at 57% lung function upright and 12% drop when flat. I also have arthritis and 3 compression fractures in my back. To help things along I have Pulmonary hypertension and a few heart problems. I lose my breath very easily but recover quickly but still been deemed exercise intolerant? I am sorry to say tiredness is part of the package but you have to be positive about things as it will draw you down.

This is my theory on your back if you are low on O2 then the organs will pull as much as they can from where ever they can. This could be your back problem as the muscles is spasm on lack of O2? Or it could just be the back playing up like they do? the reason I say this is a few years back I did PR and at a certain point of the walk tests my calves cramped up the PR nurse said that the body is taking the O2 from my legs as it is needed in my important organs.

Things like peak flow are not much good except to see what you are blowing. Asthma/COPD will blow and still have breath were RLD blow and possibly be empty?

As for the tests to date they are doing all the right things and looks like they could help you. PMA

Be Well

[Photolady in reply to Offcut]

Thank you!

[peege]

Hi, welcome. All is not lost so try not to worry. Stress & anxiety don't help at all.

You'll get lots of friendly support & advice here.

Exercise, sensible weight, breathing exercises (lots of clips on YouTube), avoiding infections, a good immune system are all important to your health now & for the future.

It's great you've had a CT scan, they clearly show everything for an accurate diagnosis.

I don't think a lung biopsy is normal but if you're worried why don't you call the BLF helpline. They are the experts and can guide you on questions to ask your medics & what, if any further tests you should ask for.

One thing most have learned is that we have to be proactive in our own situations, learn as much as possible, we're all different.

Good luck. P

[toerag in reply to peege]

I had a lung biopsy some time ago, it was to check that there wasn't any 'nasties' in my system...and the CT scan proved once and for all... I HAVE A BRAIN in there...somewhere he he

[Photolady]

Thank you, sounds like good advice.

[jenss]

Hi Photolady I am sorry you have reason to be here, but welcome to this friendly and supportive forum. With regards to the scarring do you know where in the lungs the scarring is located? There are various types of lung biopsies depending on what question the specialist wants answered. Sometimes they do a bronchoscopy and a biopsy with that: that is not a major operation or concern and one is typically over it within a day. Then there are open lung biopsies and I personally would seek a second opinion before having one of those as it is a major operation and sometimes can lead to months of aftereffects, sometimes these never disappear. It is great that you are seeing your dr in a couple of weeks. Is it a lung specialist? With restrictive lung disease it is advised to see an expert at an expert centre of ILD. If you are not at one of those expert centres ask to be referred to one. In the meantime take all the precautions you can to avoid infections, make sure your immune system is in good shape (including having adequate vitD levels), have flu and pneumonia vaccinations, eat healthy, get rest and sleep and try not to stress. Best wishesxxxx

[Photolady in reply to jenss]

Thank you for the information. They did not tell me what part of the lungs were scarred. I see a lung specialist in a couple of weeks. I should know more then.

[jenss in reply to Photolady]

Good luck with the specialist. Make sure you ask him/her about being seen at ILD centre. Let us know how you goxxx

[Photolady in reply to jenss]

I will!

[Dmactds]

What sounds familiar to me is this: I once asked my doc about degenerative disc disease and he replied, "Everyone's discs are degenerating all the time, that's the nature of aging, exercising is the best thing for that and many other so-called diseases of older aged folks. Many, many people, as they age, begin playing the role of "older person" and basically slow down and even stop any real exercise at all. THAT'S what brings on many problems 'associated' with aging..., even COPD; people convincing themselves that they're sick and so, they give up, basically."

I keep that in mind at all times and even though I sometimes DO have substantive problems, I do not let myself give into the idea that it means I should start "acting the part".

[Plumbob]

Photolady ......No lung biopsies are not an automatic progression and before you absorb all sorts of information from the internet and panic over everything you read, take everything as generic as every person is an individual and has their own battles. before you start stressing wait till you have seen your consultant and listen to what he has to say.. That's the important first step.

ps to contradict myself this is a good site for people in similar (not the same !!!) position and can be helpful... But as I said let the doctors do their thing and don't panic over every symptom you read about

Good Luck, and keep smiling (even if its only wind )

Plumbob

[Photolady in reply to Plumbob]

Thanks!