Hi all, been lurking on here for info for a while, have decided that with an increase of depressive symptoms that it might really help to engage with fellow COPD sufferers, hopefully offering my support in some areas may help to help myself..
For a quick idea of my condition, diagnosed in feb earlier this year after difficulty at work, up to 95% damage by volume of right lung, and fev/fev1 of 50%, I have pure emphysema with giant bullae. I am 32 years old, smoker for about 8 ish pack years, quit a while before getting sick. I do a lot to maintain my health but am struggling for emotional support so hope to make some friends online to share positivity with.
all the best, and regards. Oxy
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Oxfaced
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Hi Oct welcome to the site. There are lots of lovely people here all willing to give support and friendship. Hope you are ok no chest infections. Please keep posting . Love Bernadette 😳 xxx
Hello, I only joined about a month ago, everyone very friendly and welcoming and give good advice. I hope you find it useful. I appreciate it can really get you down, I'm only 40 and have asthma, GERD and chronic sinus disease. It's a damn pain to put it mildly, but when I'm feeling okay I make the most of it.
I find eating a good quality diet, always getting my 5 a day and drinking plenty of water as well as daily exercise keeps me feeling much better not just physically but mind health too. I think worry and feeling down always affects your health. I hope you are getting the right treatment and hopefully will meet others who share similar experiences.
Hiya. I am not a sufferer. I am a mum of a sufferer. My son tells me he needs to push himself to be active. He annoys me that he won't ask for help. I think keeping active and in control of his life keeps him going. Keep strong xx
hey thank you all for the replies and hellos, just making a bit of contact helps sometimes, I think its still early days as far as letting it sink in is concerned, and haven't really made any progress as far as treatment.
I have just moved to a new locality, had the opportunity to move to a Scottish island with family and hoped that the fresh air and lack of pollution would be good as well as an inclination to give it a try as life is short. I'm sure that when I'm more involved with the local community and interacting with more people I will feel better, can always return south if not
currently getting no treatment, sadly bronchodilators have no effect on my fev and corticosteroids not only don't improve condition but apparently wont help as I have no inflammation of airways for it to reduce?, they gave me very bad side effects to boot.
am trying cbd oil, better diet, strength training, and looking at other things I can do like certain supplements etc, anyone here had good benefit from yoga??
currently waiting for referral to thoracic/respiratory medicine concerning a recent a+e visit where a consultant discussed that it might be the time to consider LVRS. Waiting for PR, also a pain clinic and MRI spine scan to address some pain issues I have been having, does anyone here suffer pain with there condition too?, sadly my doctor here and I had a run in recently where she would not give me pain medication other than nortryptaline, I have tried its sister drug with no success. Sadly our meeting turned into a shooting match where she humiliated me by making me explain how hyperinflation can cause pain by increase of chest pressure and pressure on the spine, and she even told me my lungs aren't hyperinflated,, ive been told by three profesionals they clearly are. just seems odd to refer a patient for a pain clinic but refuse to give them anything stronger than over the counter relief for the pain your referring them for ,,, hehe excuse me, this just turned into a vent lol.. enough of that and besides most people in the NHS are excellent and deserve praise!!
regardless ive decided to just deal with pain issues until I'm seen by someone who treats me with common respect, till then its all about just making some positive moves.
can any of you share some silver bullets of action you've taken that has helped not only your physical condition but your mood??, I really don't mind that I'm unwell, and can accept the cards ive been dealt, but I cant allow myself to loose the chipper positive and friendly person ive always been ,
thanx for your help, and its nice to meet you all and finally have people to talk to about all this,, thankyou x
I also have COPD. I've been unwell since March this year but very ill since July having 8 courses of antibiotics from July-now. Have they tried you on Seebri inhalers?? They really help me a lot. I literally could not breathe without them.
Hi Oxfaced ( much prefer Oxy !) Don`t ever feel you need to apologise for having a good vent. We all have times when we need to share our feelings- good,bad or otherwise. Our loved ones try to understand but only fellowsufferers really know. That`s what so good about this "gang". Sheila x
This forum has really helped me, and I am sure it will you, everyone is so supportive and I have learned a lot. I'm sorry to hear you have had problems with your GP, most of them don't seem to have a clue about lung diseases, and seem to think COPD is the only one that exists. It doesn't help that it is invisible. Lots of people think you are making it up. I had an experience this morning when I was at the doctor's, towing my oxygen concentrator as you do, when some chap made a comment about going on holiday. He was quite shaken when he actually noticed the cannula. So welcome to the forum and if you feel like venting it is just the place xx
thanx again guys, nice to meet you all. in regards to the inhalers at spirometry and lung function tests they have been shown to have no effect on my fev, I guess this indicates that my emphysema has little to do with inflammation of bronchial air ways, I guess this means the best I can do for now is learn better breathing and try to make good with what I have, truthfully If I can avoid all medication seeing as it has little effect for me perhaps that's not such a bad thing?? I can imagine that eventually I will need oxygen but hope that is a long way off. there seems to be an issue with oximetry tests regarding pure emphysema as apparently readings will not show as low until very late in the disease progression. I am lucky in that I present with mild symptoms relative to the extent of damage in my lungs, I hope it stays that way for long as possible.
looking forward to contributing to the forum, in anyway I can, and getting to know you all better,
heres to positive thinking, and keeping ourselves healthy as possible,
Due to go on Oxygen a few years ago & refused as I live on my own & dragging a tank of Oxygen around on buses etc would be very difficult. Went on a Pulmonary Course help tremendously also started sniffing Eucalyptus Oil which helps to clear the airways &Chest Clinic Nurse said it is also excellent. Move as much as possible, do deep breathing exercises, I was virtually housebound one winter then started going out on Town Rider & found pushing shop trollies helped with my breathlessness so we have to help ourselves also.
Hello Oxfaced and nice to meet you so to speak after being so "silent" for some months. I think many folk on here,join and then have a period of reading the daily trials and tribulations,before they make a "post" themselves! So welcome as everybody has already said before me. I have stage4 COPD,use O2 24 hrs a day and just at this present time,am finding the nasty depression has reared its ugly head once again. You,I'm sure,like me,will find this forum so good as folk really pour out their hearts and souls in the hope it helps people like you and I. You are on the best site in my opinion and I'm sure we will get to know one another over the coming weeks.
Welcome Oxy. You couldn’t have picked a better site to join. We all get a bit down in the dumps at times. I find if I can find busy work to do this helps. We are all members for the same reason, our lungs! There are many members who are so knowledgeable so ask any questions.
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