Any help please.

[Dids49]

I am now 71 and was diagnosed with COPD about 20 years ago and until 2 years ago managed very well. How can I be recording an oxygen level of 99 and still not able to breathe if I try to walk more than a few steps? I am on 9 different medications and starting to wonder if they are all fighting each other. Not all of them are for COPD. The COPD ones are Ventolin, Steroids, Braltus inhaler, Fostair inhaler and Clarithromycin for a flare up. When I do have a fare up none of this treatment seems to help me and every day is a struggle if I try to walk about even just in my home. I am now close to house bound.

[Bcclarke]

1st you need to see your doctor your pulmonologist. You could be that you are a carbon retainer it could be that you have a pneumonia it could be that you're not getting enough oxygen through your tank it could d be many things. Call your doctor and go see her. Don't wait

[Dids49 in reply to Bcclarke]

Thank you for your suggestions. I am in the UK and the health service isn't quite what it used to be. Getting a doctor's appointment can be difficult although I have been ok with that generally. I don't have a pulmonologist, just my GP. I am not on oxygen, the medics seem to think it wont benefit me. I had a stressful 5 years nursing my husband through lung cancer followed by a stroke, followed by a heart attack, followed by an operation for an abdominal aortic aneurysm and finally another stroke resulting in his death at the start of 2016. He had also suffered for 46 years with rheumatoid arthritis. My doctor put the deterioration of my COPD down to stress and the resultant loss of 3 stone in weight. The steroid treatment I am on has caused weight gain but to be honest I could move and breathe better when I was underweight rather than overweight. I am due to see my doctor shortly and will see if he can do a re-assessment of my situation.

[Pantani]

The thing with Emphysema is that Oxygen levels can be fine, this is due to the gas exchange rate. Shortage of Breath is because it is difficult to expel air from the lungs. Because of this you cant get air in. You need to try pursed lip breathing. Inhale through the nose for a count of of 4 and exhale through pursed lips for a count of 8. This should help you control your breathing better. You can also use this when walking in, breath in for 2 paces and out for 4.

[Dids49 in reply to Pantani]

Thank you, that seems to make sense with how I feel. I am completely stifled sometimes when trying to breathe in. I struggle to breathe in for a count of 4 but will work on that thank you. I do feel my inhalers are not being of much effect because I can't breathe in very well. I will be seeing my doctor shortly and will ask if he can suggest any alternative treatment for me.

[Fryier in reply to Pantani]

Like you some days I can hardly walk 5 feet and other days i can go 40 or 50 feet with very little trouble. i have a fan around my neck that blows the air up. Has been a great help when I start to over heat and that's been often. Cold, hot and pollin I wear a mask, or some kind of mouth nose covering. Smaller meals and more water.

[4sibbs]

My 92 year old mum has COPD, she never smoked but my father did and she contracted Emphysema due to his heavy smoking in the 80's. We believed she had been treated successfully at the time but after developing breathing difficulties about 5years ago we were told Emphysema causes lung damage. We took her to the COPD clinic at her surgery where a nurse carried out a lung function test using a computer programme, from her results she was given Formoterol Easyhaler and it has helped, mum also has Ventolin inhaler but uses a tube for ease of use. We have found that it is really important to ensure she uses the inhalers correctly otherwise she isn't getting the correct dose and not getting the benefit. We are in the UK and I believe most surgeries and hospitals have COPD clinic's, from what I have read about the condition it is essential you have a Lung Function test because this will determine the treatment which best suits you. Mum has also been on Prednisolone for the past 5 years due to an unrelated condition so it is possible they also help with her COPD, hope this helps.

[LORBIC]

I can tell you that weight has a lot of do with how we breath with this disease, I'm over weight but have recently lost about 20 lbs and it has made such a difference in my breathing and ability to do things. If you can have your doctor change your antibotic to Zithromycin, this is one of the recommended for copd. The one you are on is not. By being on Zithromycin you shouldn't need to take steriods, this drug helps with inflammation as well as infection. I take a low dose daily and will no longer take a steriod. When I do get a flare up it is much less and if needed the doctor just increases the amount of antibotic for about 2 weeks. I'm in the USA so I'm not familiar with your inhalers but maybe you need to change them for something else, maybe they just aren't working for you. It's very important that you be under pulmonary care, GP are not trained to treat this problem.

[Dids49 in reply to LORBIC]

Thank you, I am relieved to hear someone agree with me regarding the weight issue. I am eating very little to try and avoid further weight gain from the steroids so if I can be rid of them I will be in with a chance again. I know how much better I felt without the extra weight but the GP insists that COPD sufferers do better for being a bit overweight than underweight. I feel sure that if I can lose a couple of stone my breathing will be much improved. If we walk round carrying a weight we feel much worse than not carrying anything so that was my logic!!! (Not that I can carry anything when walking). I will mention that Zithromycin to my GP and let you know his comments, I am due to see him again shortly. My GP has trained and is updated in respiratory illnesses so it is difficult for me to question him. Thank you for the information you have given to me.

[LORBIC]

I have never talked with any doctor who thinks extra weight is a good thing,,even my pulmonary and cardiologist are very happy when I loss just a few pounds, wait until I see them again next month, they will be over joyed. the two recommended antibotics for COPD are Zithromycin and Levquin, I won't use Levquin as it is known to rupture tendons. What my pulmonary doctor told me to do is to start walking 3 days a week for 15 minutes at a time and when I can do that comforabley then to increase it to 45 until I can walk a mile, well I haven't made the mile yet., not even a 1/2 a mile. But never give up.

[DianeMorris]

Sorry Dids, I am about in the same situation. On oxygen 24/7 and just about housebound. I have found there are many things that you can accomplish from home...but sure wish I had one day where I could skip, if only for a moment. Love and light Diane

[Dids49 in reply to DianeMorris]

Sorry I didn't reply earlier Diane, I must have missed your message.

Perhaps if we wait long enough we will get to skip just for a moment. I tend to sew most of my days, has always been a passion of mine and it keeps my brain working !!!

Hope you will at least get the odd day or two when you feel less hampered with the awful illness. Take care x