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Well it finally happened, I been put on 0xygen
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Went to the Dr. the other day(power has been out every since) and he said I needed to be on oxygen at night and during activities. Sounds like all the time to me. Any way, I was diagnosed 5 years ago and was told to exercise. I walk 2.25 miles almost every morning and have been doing this for the last 5 years. The reason I was going to the Dr to start with was I noticed the Foraldil did not seem to be doing much recently. He then changed me to Advair HFA; I immediately got a cold that went to my chest, called and said stop the Advair and start the Foraldil, I did and the infection cleared, he then said start the Advair again, I did and was overwhelmed by the amount of flem. I went back to discuss this and get a new med, while there I told him my Pulse Oxmiter indicated my O2 level was going down to 79% during my morning wald at the peak speed of 4.1 MPH. He had one of the nurses walk me around the building with a pulse oxmiter on and it went down to 87%. He the wrote the script for O2 and rushed me out the door. Just wondering if anyone else feels if maybe he should have at least listened to my breathing or have had other test done.
By the way he put me on arcapta neohaler, so I'll be able to give some feed back on how it works in a week or so. Also, I am still working so not sure how the O2 will affect work. I made an appointment for this Friday to discuss this and any other questions I can come up with between now and then. Ayn Ideas for questions, I get a lot of information off here, not often do I post, but, I really needed the souinding board and the help of your expertise. Thanks and everyone have a good day, hopefully not as hot and humid as the last couple. At lease I have once again been blessed with electricity. Posted on 07/03/12, 10:27 am |
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First thing is find a Pulmonologist that will pay attention. Someone that rushes me out the door has seen my last nickle - I will go as far as to refuse to pay and file complaints with the various medical organiztions and state health department and certification boards.
You need tests (a PFT - pulmonary function test and a ABG among a battery of others if those first tests warrant it) to determine where you stand. Then a doctor can explain where you stand and the options available. O2 and work is problematic depending on the job. I still work (to an extent) and have a full size concentrator in my lab to keep me going. Portable concentrator pulsed oxygen doesn't work at higher rates (3 or better), as the system cannot keep up with any strenuous breathing. Just keep track of the O2 levels - anything below 88% is potentially damaging your organs - especially the brain and heart. Take care, Dennis 
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Unfortunately, where I live, we have many people with lung issues and ONE Pulmonary Clinic. I have to take what I can get.
I was walking up to two miles a day; until I had a bad infection (exacerbation). I started on oxygen 24/7 the first 6 months after diagnosis in 1999. Then I was not on oxygen until a sleep study found that my oxygen saturation drops way off during sleep. So, I was put on oxygen when sleeping. Then, as my lung function decreased; I was on oxygen during the day, at home. Now, I have portable oxygen and I am on it 24/7. I have tried (cheating) and going without for short times. I have an oximeter and if I go off my oxygen my heart rate goes way up, and my oxygen saturation drops off 90, 89, 88, 87, 86, 85, 84.........and so on. Apparently, I am stuck on oxygen. Best wishes to you. Have a Pulmonary Function Test (breathing test) to see what your lung function is. Also, I get Arterial Blood Gas tests, as I tend to retain the (bad air) carbon dioxide. My heart is involved, so I have to see a Cardiologist, also. Hang in there. Blessings.
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As far as the O2, I was told to start useing it 24/7 about a year ago after my walking tests showed my level dropping, even with the O2 attached. I had just been doing it at night. I have a sequal portable, and it is continous flow, and tho I would not tell anyone to do without, sometimes when I am just sitting, watching tv, computer, I take the thing out of my nose to give my nose a break for a few minutes. Everyone's o2 level drops during sleep, it is just us sick folks that have problems. If you are eating, walking, exercising, any movements like that, wear the oxygen, because you are useing energy, and if your organs are not getting enough oxygen, your heart will speed up to try to pump more thru your body. Bad for your heart that way. Good luck, and I wonder is there a larger town near where you could get a better doctor, or else have a talk witht this one or his supervisor.
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I see you're a veteran.
Do you go to the VA medical center? Is that where this happened? The vamc in Martinsburg has a pulmoology and sleep apnea unit. Also - they should havew discussed the oxygen with you extensively. I got oxygen with the bums rush and I misused it because I didn't know any better. Make sure you read up on it because you can't just turn it higher and lower. It has to be used carefully. Hope you have a good holiday!
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Thanks very much for all the responses. I was first diagnosed at the Martinsburg VA Center in 2007 and they told me when I got worse they would set me up with the pulm Dr.; so I went on the outside and found one for myself. Anyway, I have an appointment again Friday and I am going to discuss the shoot-from-the-hip response and see if we cannot run the proper test, if not I will be hunting a good Pulmonologist. Have you been to the VAMC in Martinsburg. If so, are they good? Hope everyone had a great 4th and hopefully we will have good air conditions for the rest of the week.
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For me exertion is the signal to use the oxygen. I use it at night at 2L but during the day if necessary i have to increase the flow by .5 or even1L.
For me the bigger problem is the heart rate, I can get my 02 level up in the mid 90s' but the heart rate is much more difficult to lower. I have reached 145 rate and I just have to sit and wait for it to lower. My base rate has been established at 90 but even that is difficult to maintain and that is much higher than I ever had prior to my diagnosis of emphysema. There are so many aspects to this disease that I hope that you can find a doctor that will be of help to you. I have found, for the most part, the patient really has to be proactive to deal with this and the medical community sucessfully. the very best thoughts coming your way.
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I haven't been to the Martinsburg VAMC - I go to two of the centers and a Vets clinic in NJ and we get pretty good care so far. I just have heard of Martinsburg years ago and that was a pretty good place. I think they have a pulmonary rehab clinic there too.
145 heart rate is way high. I'd ask the cardio guys to lower that with something. They give me cardizem and I tao allke it 3 times a day now - works good. My rate is usually just under 100. Best to all.
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I am pretty sure that the Americans with Disabilities Act ensures that employers have to accomodate your needs.
Has your 02 supplier supplied you with a huge, and I mean huge tank of 02 for those times when the electricity goes out?? I had to really lean on mine pretty hard hard to get mine but, it was worth it to finally get one and it gives me peace of mind that I have the back up I need. I agree with Denny on the doctor issues.
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jackfind, what cardio?......Not my PC nor pulmonologist have recommended seeing a cardiologist. I could choose to see one on my own but because.......
The pulmonologist requested a chemical stress test and it showed no cardiac problem. I feel that I am fortunate to get good results such as this but it still worries me that the pulse is not more stable. The emphasis seem to be more on the emphysema and less on the heart but we both know that the first eventually leads to the second. By the way, rcar01, hope you are having good luck with your pulmy appt today. Let us know how it went , if possible. The best to all,
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If you get a script from your physician stating your on oxygen you can then take it to your utilities office so that you can be placed on their Medical list to have your electric restored before anyone else.
I have done this with my local utlity office so that if the electric goes out they will make me a priorty and mine will be restored before others.
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