I have had copd for about 3 years, but the past 2/3 months its been really bad, and just standing up or body movements, can make me breathless.
I have been in hospital a few times with low oxygen saturation, and have a finger monitor to keep an eye on it, which ranges from 90 to 93, but on bad days it can be 86.
I take all the inhalers available, steroids, plus a nebuliser, but life is becoming a daily struggle, and cant wait to go to sleep at night to get away from the discomfort.
I also take Furosemide to take the fluid from lungs, and stop my ankles from swelling.
I have a carer twice a day for 30 minutes, which is helpful, but going to the kitchen for a coffee/snack etc, is a nightmare.
I am having an Echo-cardiogram this coming Thursday, to see if there is any problems with my heart, so I am asking if anybody has the same/similar problems, getting about the house, or can give any advice on anything.
There is a copd unit who are on call 24/7, but they will only come out if they have a referral from my doctor, but you only know how bad copd is, if you suffer from it.
Sorry for going on, but getting desperate.
Thanks Ron.
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rtaxron
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Hello Ron I am 78 in a few weeks time Had double pneumonia at ten years .
At 65 began constant cough At 69 diagnosed with bronchiectas . Recently breathing so bad Now ex ray shows more prove more progressive condition than Lung cancer.
Waiting for CT scan in two weeks . Very possible Pulmonary fibrosis
Oxygen levels down to 72 when walking .very breathless - very tired
Hello Ron.Welcome to the site,there are loads of people on hear will be able to give you sound advice and relative information to your current situation.The rest of us will just give you support and reassurance as and when you need it,good luck with your echo cardio later in the week...............skis
Hi Ron. Many of our members have COPD and some have it to a severe degree and most will be happy to share their experiences with you. Welcome to the site.
Hi Ron, Although you mention monitoring your oxygen levels you don't say whether you are actually on oxygen yet or not. If not yet on it then you need to be tested for it - see your GP for a referral. If you are on oxygen and your levels are still dropping then check with your oxygen nurse if it's okay for you to raise the level you are on. Make sure you use your oxygen if you need it as not doing so will put extra strain on your heart. Good luck with your ECG.
I am not on oxygen yet, its been discussed in the past, but no decisions as yet.
It gets confusing at times, when one says, dont worry to much about the low levels of oxygen, then another says, oh that dosent look to good, at 89/91, so when on a bad day it goes down to 86, it makes me wonder if its dangerous or not. Thanks,
Welcome to the forum and let me reassure you that you are welcome to 'go on' as much as you like!! This a wonderfully inclusive space, so vent away as and when you need to.
With regards to your forthcoming echo, I believe it's quite common for the cardiac side of things to be checked out especially when a patient has presented with many exacerbations (as you have recently). Not only because low oxygen can interfere with the normal functioning of the heart, but because breathlessness can be a direct consequence of an underlying heart complaint. So just to be on the safe side it's always reassuring to have these things checked.
My Mum developed Atrial Fibrillation, and that was only picked up late on after various ECGs and ECHOs. Arrythmias (abnormal heart rhythms) can be common in those with impaired Lung Funtion. So once again it can only be a good thing to have these ruled out. Peace of mind at best, and early intervention at worst.
Your SATs sound pretty stable from what you've said, but the drop to 86 is lower than optimal for someone with COPD. Maintaining between 88-92% is ideal, but a small drop could indicate the onset of another infection perhaps. If your SATs are in the high 80's, low 90's when moving around that is where you should be, but if you're dropping lower consistently, it's definitely something to discuss with your GP, Consultant or Respiratory Team.
In my experience speaking with various clinicians, you do often receive conflicting opinion when it comes to what's considered dangerously low saturation. However, I believe my Mother had very low Saturation for many years, especially at night, without ever being aware of it.
A respiratory nurse who worked in critical care once told me that the human body has an incredible way of compensating for consistently low oxygen levels. Hence why some clinicians wouldn't consider 86% to be of any concern. However, others would advise you need admittance to hospital for observations.
Obviously over time consistently low SATs will take their toll on the body and become apparent through presenting various signs & symptoms. You say that supplemental oxygen has been discussed, but no decisions yet. Have the pros and cons been explained to you?
I could never understand on the many occasions when I implored the medics to give my Mother Oxygen for low Saturation why they would say to me 'Oxygen may not be beneficial to your Mother because of the type of COPD she has'. This confused me because I assumed Oxygen would be the miracle she needed and make it all better.
What they actually meant was 'your Mother is at risk of retaining too much Carbon Dioxide if we give her supplemental Oxygen and that is as dangerous, if not more dangerous than leaving her with low Oxygen levels.
I suppose I'm just trying to say it's a very complex condition, and all meds (inc Oxygen Therapy) need to be catered to you as an individual. Don't hesitate to pick up the phone to your GP and get that referral to the dedicated respiratory team you mentioned. Where I live it's known as the A.R.A.S. Team (Acute Respiratory Assessment Service).
You sometimes get referred to them during an inpatient stay, so they can keep a close eye on you when you leave hospital, through Early Assisted Discharge or Hospital at Home. They also offer a place for you to go (usually a dedicated ward/space in the hospital) as an outpatient to get checked out if you feel acutely unwell but don't feel you need to go to A&E. They can give you a full Respiratory MOT without all the drama of a trip to the emergency department. Of course if after they have done all their investigations they feel you are in need of further treatment not available in the community then they will admit you into hospital.
Lots to think about there, and I don't want to babble. But please know you are not alone, and everything you are feeling is perfectly normal. It's a scary place to be when you are trying your hardest to be independent and feeling so dreadful. All you need to do is tell someone when you are struggling, and if you have no immediate family or friends to support you, just use that first line of communication, and make a phone call to discuss it with your GP. Sending my best to you....
I to have copd and have come to terms with slowing down with all activeties which means not getting there as quickly as one used to,this coupled with the inner conviction that with every breathless occasion I will recover. A concious belief that with a few slow and deep breaths \i will recover,
Sorry to hear of your plight. I am ten years younger but in similar health. Like you any attempt to walk or even stand makes me breathless. I too am on water pills and also a pill for an irregular heart beat (discovered by an ECG) I pay for carers to come in 3 times a day. Three quarters of an hour to get me up and give me breakfast, and leave a sandwich for lunch. Half an hour in the late afternoon just so there is not a great gap between morning and evening visit, they refill water jugs and make a cup of tea. My bed and commode (behind a screen) are now in my lounge as I cannot walk to the bedroom or bathroom any more, and I live alone. Carers come for one hour in the evening to cook my evening meal, remake my bed etc. I put myself to bed later in the evening as I can walk the few yards to the bed. I have a walker come trolley so when I move can transport things with me. I have also treated my self to an electric bed so I can sleep in a near sitting position and can raise my legs at night which greatly helps with draining fluid from my ankles/feet. I have also treated myself to a coffee machine which I keep next to me where I sit in the lounge so that I can make myself a cup of lovely coffee whenever I wish. I am lucky that I have savings so have been able to afford these things, but that does mean the only help I get financially is with PIPS which does not even cover half my carers bill let alone my rent etc. but still count myself lucky. I am also on oxygen 24/7 (very low at half a litre but it does make a difference) which I would say it maybe an idea to ask again for an assessment to see if you are now eligible most research does say that it can prolong life so worth asking. Anyway hope some of this may be a help to you. Get more carer hours treat yourself or ask for an electric bed, treat yourself to a coffee machine and ask re oxygen. Good luck let us know how you go. xx
Im limited onn my reply due to the hurricane here in fla. But when your O2 goes down turn your oxygen up .always check with doctor first. 1 doctor told me if i turned my concentrator up i could pass out. Recently my O2 was 73 n the ambulance had to push the o2 up to 10. Now i am my own doctor. I constantly check my o2 on my finger also. And when it drops i put my saturation up to 4 rather than 2. I try not to wear the face grippers cause they hurt to pull off. But good way not to lose canulas out of nose. Lack of energy i can relate . good luck n keep in touch. Nice to know we are not alone
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