Restrictive lung disease and copd. - British Lung Foun...

British Lung Foundation
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Restrictive lung disease and copd.

db5570
db5570

Hello,

I'm new here or to any online group. I've been fighting restrictive lung disease and copd along with asthma since 2004. Along the way I developed congested heart failure. I've had good years and bad months. Although I've been hospitalized twice in the last 4 months. I'm 45 and not ready to give up. I'm hoping someone can help me understand what I've got to look forward to. My lung volume is going down. 8 months ago it was 38%. Now I'm down to 29.4%. I'm having a harder time breathing. Hard time bouncing back. I've had a problem retaining water but now it's really gotten worse. I'm taking 2 mg bumex in the morning and 4 mg in the afternoon. Still caring about 40 lbs of water. They have now put me with palliative care. They are nice and monitor my meds once a month here at my house. They say I'm a fighter and won't give up but my body is. What do I have to look forward to happening? Can someone help me with this?

24 Replies
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Hidden
Hidden

Hi db..wish I could answer that for you .

I only know that even with your lung volume people live for meny years and somehow managed to improve their lung volume again....

Now that you have found this site you will get more info about your condition from members then perhaps you've been getting from your medical team. ..

Hope someone will come on soon for you that can be a bit more helpful then me....

Andy.

db5570
db5570
in reply to Hidden

Thanks for your reply Andy.

They are telling me that I have 1 to 2 years if everything goes good. I believe no one knows when I will die except God. By what I have found and it's very little is that is going to be painful. I already have back and chest pain but I'm not one to take pain medicine unless I really need it.

Hidden
Hidden
in reply to db5570

Where ever your turns comes...only God knows that..

We as humans don't except people living or dieing in pain any more...so you can rest up for a while o.k.. ...Andy ☺

Sorry just to add to my previous post to you - I was told over 4 Yeats ago that I'd be lucky to live 12months and OK 3 Yeats of muddling my way through the meds that worked etc and those that didn't,but I've not been admitted into hospital for a year now !!!!! Never listen 100% to any life expectancies, but do take some of it on board.

Welcome db5570, l cannot answer your question but you will be well supported on this site. Take care. Xxx

Hidden
Hidden

I think the DOC's should be monitoring your meds more than once a month .. A don't think it's all down to your lungs have your doctors said out about your heart.

I don't want to appear cheeky but are you a big lad ... only as that can play big role in whats happing to you.

db5570
db5570
in reply to Hidden

Not really big normally. Normal around 200 lbs. Although the dr says I'm carrying 40 lbs or more of excess water right now that just doesn't want to go.

I have RLD and Emphysema with fibrosis and not having a great time at the moment. To add to this I have PH, AF and Tachycardia.

I am a big believer in PMA.

I had lung failure in 2008 and was on an oscillator for 10 days and in ICU for 32 but I do not remember any pain. When I looked on Google it told me I had a few years I past that! As for the monitor the meds once a month I would think a change is needed if the water is not moving? You do not mention the heart meds which I need to control the heat problems. Heart medicine can affect the lungs if they're not careful and visa versa with lung treatments.

One of the problems I encountered was the lung and the heart consultants not agreeing with treatment, it seems that they are now too specialist and blinkered to their own fields. Which does not help those with multi conditions.

Look forward and keep PMA.

Be Well

Hidden
Hidden
in reply to Offcut

Hi Offcuts .. About your breathless when lay down.

Are you aware you can suffer heart failur when walking i.e suffer from it long term and be unaware is more obvs when lay down.

Defo worth asking your docs that when talking about your symtoms.

db5570
db5570
in reply to Hidden

I have suffered congested heart failure since 2006. The left ventricular has grown.

Hidden
Hidden
in reply to db5570

Am no expert but i think that is ya problem now really

Offcut
Offcut
in reply to Hidden

I have had one Heart attack and they think I may of had another last year (long story)

I do think that my A&E by ambulance changed my GP practice attitude as the Doc at the A&E was genuinely concerned with the multi conditions and the lack of support I was getting at the practice. I think he sent them a strong letter. A&E Doc even called me at home the following day to ask how I was doing?

I have got to see another GP this Friday to look at possible O2 support I hope?

Hidden
Hidden
in reply to Offcut

Hope the sort abartory oxygen out for ya defo better than struggling

So sorry Offcut,reading your post - what is PMA. Thanks.

Hi squirrel , positive mental attitude , I think 😕

positive mental attitude

Hi, there is a lot of talk around the site about using canabis oil, might be worth having a look into that....take care.

Hello db and nice to meet you.

I am so sorry to hear you are having such health difficulties, and at a fairly young age too. From what you have said in your post, it would appear that your congestive heart disease may be causing the bigger part of your problems..ie the shortness of breath and water retention. As we are not doctors, it would be impossible to answer your question about what you have to look forward to happening.

You say that you have a good palliative care team and they should be able to answer anything you ask. We will be happy to listen, support and offer comfort in any way we can.

All the best

Tee x

Hi and welcome to the British a Lung a Foundation forum. I'm so sorry to hear about your history. At 49 it's just not fair.

Member 1008 above more or less says what I would say. I can only add that perhaps an email to the help team (click on help above) may shed light on what you can expect. They also have counsellors on hand too. They are trained whereas we on here aren't, just a multitude of experiences and information shared.

There are quite a few people here with combined lung/heart problems, hopefully some will read your post and reply soon.

In the meantime, please stay for ongoing caring support.

Wishing you all the very best. Peege

You are correct no one knows when the end will come. I believe once it is our time we often know within ourself and begin to prepare. Both my parents knew said as such and we're gone within the week. As a nurse before I was diagnosed with I.P.F. I took care of the elderly and can say many times they knew. I did care for some with different types of lung disease and everyone is unique. There are many different things that come into play when they decide palliative care just remember you don't have an experition date stamped any where on you. Best of luck.

db5570
db5570
in reply to docmel

Thank you. The care team have been really nice. They have taken the time to listen. I guess their main place is to make sure I'm as comfortable as I can be. The bad thing is I was still hiking just a year ago. Now can't want the 1 mile around the neighborhood. It has changed so fast. This winter has really taken a toll on me.

Hello there. I'm 53 yr old "lady" who is still alive with 19% of my lungs functioning. So its quite down to the individual ad to the change of lifestyle that is so important. After years of being in and out of hospital in the UK, I've finally got into a Pulmonary Rehab course. Have a look and see if u can get on one as the folk on here made me see how important it is NOT to give up. You will get loads of support so please don't sit at home worry ing. You will learn more on here. I did and my Consultant was quite taken aback when I saw her last month. She was amazed at the information I'd written down and asked her about. Don't give up.

Evening db,

I saw your post this morning and it has stayed with me all day. I wanted to gather my thoughts before replying. The replies from other members of the forum are brilliant. But you do indeed seem to have caught a quadruple whammy. COPD, asthma, restrictive disease, and heart congestion. And sooooo young. Well, compared to most of us oldies here, you are. Young enough to be our offspring. So we are all rooting for you. What is your restrictive disease? Is it pulmonary fibrosis?

How did it all happen so suddenly?

Do you have family, partner, children? If so that is massive support but if you have children then that is very, very hard.

Any chance of a lung transplant? Are you in the UK?

You most certainly are a fighter, but there can — maybe? — be too much expectation and burden in that. The last thing you need is to feel guilty when the fight knocks the stuffing out of you and and you are feeling feeble. You do have permission to moan, whine, and indulge in justifiable lamentation. (Good phrase?)

And that is what this site is superb at. We have lots of virtual tissues, hugs and masses of time to read and empathise with what you have to say.

All the best

And do let us know how things go

K xxx

Hi, my name is Andy and im 48yrs old. I was diagnosed about 10yrs ago and due to my stupidity and reluctance to accept my condition i kept smoking til 4 yrs ago. I am now on every med possible and am just waiting to recieve the equipment for oxygen therapy at home BUT! if i had done everything in my power to work towards staying healthy i may not have deteriorated so quickly. You really need to stay as active as possible, keep doing excercise as often as you can to improve your muscle tone and remember that your lungs may be damaged but you have to make sure the rest of your body remains healthy as this in turn will make your lungs job easier. Please listen as i wish i had and now im finding it far harder to get my muscle tone back, the very best of luck going forward.

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