do you get pain with emphezima

[latingirlshyp]

i have copd but i dont have pain, i use oxegine all the time, i am waiting for a cure, before they have to start cutting on me, my doctor, said that my antobody will fight any thing that they put in me, he said they would have to make me weaker and then i might get to sick, so i guess i just wate till you find a cure

[johnwr]

Hi Latingirlshyp,

As yet, there is no cure for COPD. There are, however, some good operations that give substantial relief available. I had endobronchial valves fitted earlier this year,and have had enormous benefit. You can read about my experience of it by following this link:

bitz-and-bobz.co.uk/copd/20...

Also watch the video that is linked to the story.

If you have any questions, ask them on this page and I will answer them.

For now breathe easy,

Johnwr

[latingirlshyp in reply to johnwr]

i read your story, it is awsome, i am from ohio in usa, i am going to ask my doctor if they do that here with the valves ,i havent had 31/00 lung copasity in years, how long can you live off those valves,

[johnwr in reply to latingirlshyp]

Hi latingirlshyp,

As far as I know, at the moment the operation has not been passed for general use in USA, but trials are planned. Read this press release:

pulmonx.com/media/files/201...

Maybe your doctor can get you onto a trial?

Look at the company website: pulmonx.com

Ask the company questions about the procedure. They will be glad of this, I'm sure.

How long? Short answer is 'Don't know.' Longer answer. It will mainly depend on how much more deterioration the lungs suffer. That comes mainly from infection damage. We can help to limit that by keeping ourselves as fit as possible and boosting our immune systems with specific vitamins. Good support from physiotherapists is also important, and regular health and bodily performance reviews. With all that in mind,I am hoping that I've now got a few good years ahead of me.

I hope this info helps, and I hope you've got a doctor that is willing to push for you.

breathe easy

Johnwr

[latingirlshyp in reply to johnwr]

very much, thank you

[johnwr]

Forgot to mention that I never had any pain to do with emphysema.

Johnwr

[Wozzer1]

Hi. John I just watched the video, it seems like a really positive treatment, is your FEV predicted to improve even more ? How long as this been available ?

Regards

Warren.

[johnwr in reply to Wozzer1]

Hello Warren

What I am experiencing now Is continuing to find that my boundaries are still receding as my fitness improves. I can walk a bit further, I think I am using a little less oxygen. Getting dressed takes a little less time. I can't quantify the improvement since May (last lung function test) as my next test date has not yet been arranged.

Do remember that the amount of damaged and scar tissue has not been reduced, nor has the amount of good tissue been increased. All that has changed is that a part of my lung containing a high proportion of bad tissue was made to collapse, allowing lower parts of the lung that were squashed against my diaphragm to expand and work properly. This change in emphasis was sufficient to give me an incredible change in bodily performance. I think that the long time that the lower part of the lung had not been able to work had allowed a build up of all sorts of rubbish in the lung which has taken time to work its way out. Also this part of the lung has had to get used to being 'used' again.

For me, so far it has all been good. I have confidence that I have not had for years. For those patients that have advanced or severe COPD, if given the chance of this op, if they are suitable, I say 'go for it'.

Trials of the valve started,I think, in 2002. In UK, I believe about 500 operations have been done. In Germany, where they have a different funding system, I think their total is up somewhere around 5,000.

More info can be found at: pulmonx.com

Hope this helps you, Warren. If you have any more questions, please ask.

Breathe easy,

Johnwr

[brujapatsy]

I have read and watched your post and commented John

I do have pain with emphysema.

It was pain in my chest and upper back that took me t doctors when i was first diagnosed with this

I am on spiriva and symbicort forte

i do sometimes feel strange painswhen at rest

sometimes when i reach for something or twist my upper body then i get pain and a strange sensation of something untfoling or twisting

generaly i am not in pain

[johnwr in reply to brujapatsy]

Hello brujapatsy,

How to give a possible explanation without frightening you to death, or others who may read this.

First of all, watch the video:youtube.com/watch?feature=p...

especially the bit where it shows damage extending through the alveoli.

Now we need to understand that pain comes from trauma (physical damage), or pressure, or damage to the nerves themselves, or combinations of these reasons.

What I am about to describe is the physical manifestation of emphysema, but bear in mind that this is happening at tiny sites throughout the lung, and that the current condition that many of us find ourselves in is the result of this happening thousands of times.

One group of alveoli at the end of an airway get infected. The infection cause an inflammation response. Cell damage happens and the body responds with white blood cells etc. All this causes more cell damage. While this is going on, the lung is continuing to function, expanding and contracting. The damaged cells meanwhile have lost their elasticity. Eventually, sufficient cells are damaged that the expansion and contraction causes a rupture between adjoining alveoli. Therefore a cavity is formed. At the sites where the rupture takes place, scar tissue forms. This is not as elastic as the former tissue, and more importantly does not pass gasses to or from the blood stream. Understand that this is happening at the microscopic level, and probably does not cause pain because no nerve cells are involved. At this point, the infection clears up, the lung heals, and we just get on with life. Later, the cavities formed are involved in another infectious episode, and the cavities get a little bit bigger. Still no pain. After several more episodes (over a period of years), the structure of the lung is starting to suffer, and sagging is happening, and the damage is becoming apparent. At this point, changes occur in the way damage is caused. Additional factors come into play. In a lung in good condition, the weight of the lower parts of the lung have many pathways to dissipate the load, and the elasticity of the lung tissue can cope with us bending and stretching as well as breathing. In a damaged lung this weight distribution does not work as well, and some of the loadings are concentrated through some tissues. When these can no longer carry the load, due to us twisting or stretching in a particular way, then a larger rupture happens. This time it involves nerve tissue and we get pain.

At this point, I would say this is the time to get some serious diagnostic work done, to establish the amount of damage, and get a strategy in place to avoid more. See your GP and get a referral to a thoracic consultant.

Understand that what I've put here is guess work. I am as likely to be wrong about this as right. But I do think that pain with emphysema is something that should NOT be ignored.

I hope this helps you without frightening you too much. If what I have said here proves to be wrong, say so. Like everybody on this site, I am learning new things every day.

All the best and breathe easy

Johnwr

[brujapatsy]

I have an appointment in december 19th and will ask about this , I think I have accepted the pains as part of a lung disease,thought it was "normal"