Back into the fold.

[Bengunn]

Have had emphysema for11 year's,am now on oxygen at 6 lpm and my oxy levels drop alarmingly if I move at all.If I get up to my power chair which is next to me my oxy goes from 90 to 80 on full oxy,not sure what to do next.?

[Watfordgirl]

Hello Bengunn, I don't think we've met.

You must be feeling awful. How long has this been happening? Do you think you might be starting a chest infection and need your rescue Meds? I'm sure someone will be along with suggestions but I'm thinking if it was me I might phone 111, or 999. Only you know how much you've changed, and whether this is usual for you or not.

Why do these things always pop up at weekends? I hope you've got someone with you. Let us know how things go.

Sue x

[Bengunn in reply to Watfordgirl]

HI watfordgirl,thanks for your concern I only gave you half the story,I omitted to tell you that I am on oxygen 6 lpm 24/7 I even have to shower with it on.It takes me about two hours to prepare and shower and I am exhausted afterward.THE hardest part is drying off.My oxy levels drops from90 to the high 70s and it takes about 15 minutes to recover before I can begin to dress myself.

[joyce74 in reply to Bengunn]

Better to use a towelling robe instead of towels after a shower, you will soon be dry without much effort. I am on 2ltr oxygen and like you mine drops rapidly. Last night I took it off and went for a drink in the kitchen and it had dropped to 74 when I sat back down and then went up to 84. I am supposed to be on it 15 hrs a day. I saw a doctor last week who didn't find signs of an infection.

[Watfordgirl in reply to Bengunn]

Joyce is right about the towelling robe!

Your story's coming out a bit at a time, and I'm sorry it's not a happier one. I know things become much more difficult in terms of machinery for O2 when you go above 6ltrs.It must be so hard to think that you might become less mobile.

I hope someone with more experience of O2 can help. And do keep in touch.

Sue x

[Bengunn in reply to Watfordgirl]

Hi watfordgirl I have some news about my current health concerns.I had a visit from my oxy nurse and she gave me a long thorough examination mainly with a stethoscope and after some thought she was about to give me her verdict which was possibly pneumonia.but after some discussion and checking my own nurses records she wasn't so sure.Apparently during my exam she said that my left lung wasn't taking so much air as my right one and there was some crackling on the lower left side.so I explained that I had a punctured lung and a pneumothorax previously also two pseudomonas infections on the same side that had never totally cleared up and left a bit weak on that side.l told her that I had taken my rescue pack was feeling a little better.My blood gasses were within the range,so she took a sputum sample so I await the results of that. For once I had a bit of luck regarding my showering problems,I decided to phone my occupational health department and explained my problem with drying off after showering.A nice young lady turned up and I told her I had an idea about having a hot air bodydryer fitted in my shower if they would help me fitting it.I then showed one on line and she was quite impressed with it never having seen one before and she said she would look into it.two days later she turned up with an electrician and an accessor to check me out health wise and to see how I coped and she phoned me the next day to say I could have it and best of all they would fund it.how good is that.PS they finished fitting it today.Bengunn.x

[Watfordgirl in reply to Bengunn]

Hi Bengunn, nice to hear from you again and you sound much more positive. A couple of things changing and going in the right direction can make such a lot of difference!

Your oxygen nurse sounds really good and she listened to you. It always helps! Makes sense to check for infection before you bounce in with more oxygen.

And the body dryer sounds incredible. They've really looked after you and done all the right things. And that not only does what it does bit also makes you feel more confident about the future. If you have the problem, it can probably be sorted.

I'm really pleased. You take care and enjoy your showers and blow dries!,

Sue xxx

[stone-UK]

Hi

I would ring your oxygen team on Monday, you may need to be reassesses.

90/80 is quite a drop, I use Ambulitory oxygen and if I go to kitchen and back without oxygen my lowest is 87 with a quick recovery to 92/93.

On oxygen 96/92 after a decent walk.

What is your recovery time.

Another cause could a chest infection?

As breathing worsened or mucus darkened in colour from your normal.

[Bengunn in reply to stone-UK]

HI STONE SORRY so long replying,you were asking about my recovery time when my oxy levels drops it average about 15 minutes depending on how much it drops.I have an oxy review in a couple of weeks and they may put me up to 8 lpm which will cause another problem as my ambulatory portable machine will only go to 6 lpm on pulse,no other portable available to reach any higher level so it is going to seriously affect the little mobility I have.Sorry to so be so long winded with my reply..Bengunn.

[bobwells]

Hello Bengunn,

Wow, I feel like a young healthy kid when I read your post. I'm very lucky in comparison.

You're not smoking, right? Can you do any exercise if you increase you O2 to help compensate (a second machine to boost liter capacity). Here in the states, I purchased a new 5 lpm machine for $500/US and found a slightly used one with a 1,026 hours on it for $280 (as a back-up). You can increase O2, though the hoses/cannula size will need to be increased, too. I'm in uncharted territory with the difficulty you're having, but hopefully there's something to be accomplished.

Your diet is processed/junk food free? No "diet" foods or soda pop, right? If you're using any added sugar...organic maple sugar only, and conserve it. Are you in/near a metropolitan area (smog)? Clean water...not chemically treated? A lot of questions, but your environment I question. If I had a Tahitian island, I'd give it to you. Wood smoke isn't nearly as bad the CO2 from natural gas, diesel and other coal/petroleum compounds in my opinion.

What is your O2 overnight (sleep study), if you've had one. I "lived" with an average 83 for two years. 63 was my low. Before the sleep study, every time I could awake and check, I was in the 80's. Apparently I could not awake below 80 as I never caught 60's-70's reads. The moment I awakened....80+. After the morning shower, maybe 85, but toweling off would get me into the low 80's for a couple of minutes. I would rest for many minutes. Nowadays, low 90's and towel off like I'm swatting bees! For exercise! I run my O2 down into the 80's intentionally and breath it back up. In other words...push the O2 with exercise. Intentionally pushing it down is part of the exercise! Body position can help, but clean food and exhausting exercise are a big deal. My doctor said that I have the heart capacity...use it to exercise. I know exercise isn't going to be comfortable at all, but I can't think of a better thing at this point. Anything to move up circulation and exchange the gases. Even the exercise of making tea sounds tough...but necessary as I see it. If you could regain just one tenth of one percent of your breathing daily...you could get back 36% capacity in a year. So, if you only got back one 30th of one percent per day...that's still 12% in a year. A lot of us would pay dearly for that 12% in a year result. My point here is even the tiny increases make big differences over time. Your clock is still ticking, so you've got time to try!

Possibly there is some medication, but I'm just not a big fan of that stuff. Building red blood cell count increases O2. Efficiency is going to be your biggest asset, so a combined effort is key. There are herb teas that assist this, and there are foods too. Another thought (having no idea of your lung's/body history) is heavy metals. This was a big one with me. Glutathione and Lugol's Iodine in daily nebulized intakes daily. My metals numbers are less than a quarter of where they were a couple of years ago...and I'm still machining and welding daily. I have nebulized 3% H2O2 (hydrogen peroxide) when ever I feel heavy chested or suspect an infection in my lungs. Usually for 3-5 days, 20 drops with 60 drops distilled water, 4x daily. I can't easily afford a cold or flu, so I'm certain you can't. I had no colds or flu after my lungs crashed. I was scared to death of even a sniffle. H2O2 works wonders done moderately and only on occasion...not a steady diet of it. I brush my teeth with it to further kill off anaerobic bacteria. No minty smell...just totally clean!

How about some history and present scenario of a day in your life. I feel helpless not being able to comprehend your typical daily situation.

If you're "chair ridden", serious attention on breathing exercises would be my first idea. Hand weights, or even arm raises. Curl an O2 bottle. Leg raises! Go go go! Do that while on a steady diet of Nettle tea or St. Johns wort for starters...a couple of liters of it a day. Proactive!

Fight back!

[Bengunn in reply to bobwells]

Hi Bob,thanks for taking the time to answer my post so comprehensively.JUST to give you some of my lung history.I am 73 years old and like you was a welder for most of my working life and worked in heavy industry in the South Wales valleys,a very polluted environment.l also was light pipe smoker for many years although I gave it up many years ago,but some damage was already done.Thankfully I played football or soccer as you call it over there well into my thirties which probably helped lung capacity.I was due to retire in 2008 and had my workshop built and my golf clubs at the ready to reduce my 10 handicap golf game.But in 2006 I was taken to hospital and after some tests for a week or so I was diagnosed with emphysema so I had to retire with ill-health and my retirement plans in tatters.Then four years later I fell and punctured a lung and after a. torrid few days made it through and my condition has deteriorated ever since.prior to this and all my life I've never been seriously I'll,my blood pressure is still good and never had a weight problem so perhaps I should be grateful..Roy..

[bobwells in reply to Bengunn]

Hello Roy,

A fellow welder, my friend. I can only imagine a punctured lung. I recently had a couple of bruised ribs, with one was popped out from the front cartilage, six weeks ago. I'm with no remaining discomfort. you're well schooled in the consumption of heavy metals. I know this is something you might already know of, but "yanking" the heavy metal out makes a huge difference in the immune system. My doc educated me about how immune system, as a whole comprises up to half of your caloric/nutritional intake. HALF! Metals can burden down the immune system to a halt...then you're toast. I'd take a close look at trying to move those metals out. Cilantro or coriander, garlic and milk thistle seed (one of the most potent mercury removers)....good old garden stuff for starters, and it won't break the bank. Then glutathione, pricey for quality stuff. Best if inhaled (nebulized) as it wastes a lot to take it orally. Can also be taken as an IV. Nebulized being the most effective for me. I can take three or four 5 minute rounds in a day right in my shop. To unburden the immune system allows a lot of energy to be redirected, perhaps to breathing and bringing up the red blood cell counts. Quick and dirty...herbs/foods that yank out the metals. Work the food angle. Also, eat for red blood cell building (to carry more O2 in and CO2 out).

I'm not certain what your country does/doesn't do (the US is lousy about good health care), so check to see if glutathione is available. You can't take too much and no one has ever overdosed with it. It's about as dangerous as table salt. Your body makes less and less as it gets older. You have 15 years on me. You would do well with it and it rapidly flags synthetics floating around in your system too. That's a big deal because most of your guts has no idea what to do with synthetics! I would happily send you a 50 ml bottle of it if you can't find it/get it. I have enough.

I'd like to make a point about freeing up the immune system. By doing this, inflammation in your lungs will be better handled. Your body makes H2O2 as a first defense before inflammation is begun. You can nebulize H2O2 easily. For another test, my doc had me take 8 each 200 mg Ibuprofen to see how my lungs reacted. The reduction in inflammation gave me a lot more breathing room. To continue to reduce the lung inflammation, I went in to "air filtration mode" in both my home and my shop. My lungs really eased up over the next few weeks. My polluted shop has great air now, see below.

We have both sucked in hundreds of thousands of liters of metal laden air with our work. I have so much filtration in my shop (surgical grade bag houses with 48" fans) I have better air than outside my front doors. I've used powered filtered forced air welding, grinding and painting hoods for the last two years and there are 18" filter units over my mills/lathes. And I'm not letting up. Even the tower filters at home have been fitted with this surgical grade (one seventy five thousandths of an inch/.03 micron trapping single pass) media over the "HEPA" filters. I'm a big fan of clean air.

Also, floride...bad bad bad. A heavy metal as well. Used in tooth paste over here. There's an ironic health twist. Kids swallow that stuff over here...how about over there? The last thing you need is more metal.

More to follow...it's dinner time!