WOW MY OXYGEN LEVEL

Hello to all of my friends here, many of you know my story it seemed to be so grim and scarey and this Disease is grim and scarey!
I have a bit of good news i went to the Doctor and for months my Oxygen level was 83 to 87 and I was getting ready for that oxygen tank in fact my pulminary doctor was upset a few visits ago I didnt go on it. I was determined that to stay off until I absolutely had to. Well my friends look like god has given me a repreave I am please to report it will be awhile before I have to go on Oxygen because by the grace of god my oxygen level was 97 a 97 wow I could not believe it. Doctor says this is a great improvement. Dont get me wrong I know it flexuates during the day depending upon what Im doing just the pain becomes tremendus and i have to use inhaler! I get tired but I tell you one thing My aunt was really sick with shingles and they became infected. I dont drive for obvious reasons she needed a prescription so I walked to CVS good 1/2 mile or so, I get down there to pick it up and what did I do forgot my bank card so guess what I had to walk back to the house and then go back to cvsl when I got back to the house I was amazed i pass out to or from the store. I had a cough and a little tired but 3 months ago I would not have walked a 1/2 a block no way no how. So how about that guys.. Amazing!!

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dabombmom49,

Great news for you!! Did the doc have any explanation for how your sat increased so dramatically??

Sats of 83/87 were reason enough to start oxygen therapy. Not doing so, could have had a disastrous outcome. My sister was agitated, anxious, unable to concentrate, obviously short of breath, and mentally foggy, for close to a year before she started oxygen. She had fallen, backed her car out of her garage, and hit another vehicle behind her, which she knew was there, THREE times in the last year, but continued to deny her difficulties!! After a trip, to visit family, and friends, in Sept. she was struggling, but still denying, until she started failing more. When she finally went to the doc, her sat was 83%; anything below 90 is abnormal.

So happy, though, that things for you have improved greatly!! Keep fighting the fight.

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That's GREAT ! Keep it up !!

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GOD IS GOOD!

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That's Wonderful :) God God Bless You! is tbe Great Physician!!!

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dabombmom49: -the question is what did it for you? Everyone is different. Eldee is correct in that you do not want to put strain on your body and heart so get a oximeter and use it. Anyone with IPF should have one and use it. Most of us would love our sat levels to rise .....but how.... exercise?. This progressive disease has little hope of that happening........ I continue to try to do what I can , when I can and up the OL when I am more active..... you need it.....
So glad of your success here. Keep praying and miracles do happen.

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Good For You....



Tom.

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Yes Dr wanted to put me on oxygen however I kept saying lets wait to see what happens when this medication is out of my system. Well yes the dramatic Change was Sulfazine was on 3000 mg a day and it caused the Pulminary Fibrosis! And Humeria which was also a contributer to PF. I have a new inhaler xopenex HFA! These medications were prescribed by my rheumetologist and when I brought it to his attention and wanted to go off meds it was a fanatic NO! That he didnt believe it was the cause or that it could cause it. Lets say he has now been educated on the matter.

you are right however anything lower that 90 could be dangerous. I Now have a oxygen reader the I check it several times a day. I can tell when its getting lower than normal.

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Yes indeed I did get an oximeter. I check it through out the day!! what did it for me like I said was going of the medication. Now I understand that there is no cure and this is just god working his mircles on me! I am so blessed! Like my pulminary Doctor said He didnt want to give me false hope but I have definately borrowed some time.
God Bless you..

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Yesterday my oximeter showed a reading of 97 and then 99 when it should have been reading around 88 or 89 at rest ( my PF is so severe that my pulmonary test a year ago was terminated after 20 minutes. I desaturated too far and too fast).

I immediately went into rescue-breathing mode, trying desperately to expel as much air as possible from my lungs. This took five scary minutes! Hypercapnia is dangerous. Severe hypercapnia can lead to respiratory failure. If I hadn't been able to get the reading back down, I would have had my husband drive me to the ER. Whenever the blood oxygen level pushes 100, especially in us, there's an emergency situation.

The problem here is that the pulse oximeter cannot distinguish between oxygen and carbon dioxide. All it "knows" is that a gas is present (oxygen and carbon dioxide are both gasses). So a person's oximeter may read 98 but this could be indicating a blood oxygen content of 75 percent and the balance, 23 percent, carbon dioxide.

Dear Dabombmom, I realize I may have rained on your parade, and for that I am very sorry! But I felt I had to say something. I don't want anything bad to happen to you.

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Or is it a miracle? Miracles do happen, you know.

I am praying that your high pulse ox reading was legit. I am almost wishing I had kept my mouth shut about the carbon dioxide, but on the other hand....

Oh, lady, what would you have done, if you were I?

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Condoline
You didnt rain on my parade at all I am totally aware of the carbon dioxide could give you a false reading. How ever that good result was at the doctors office. I am also aware of how fast you saturation could go. My mother unfortunately surcomed to this disease and i went through all the stages with her but I never dreamed in a million years I would be plagued with the same disease..
I feel really good and I honestly havent stopped going since I started being able to breathe easier due to stopping the medication.. I still get winded but not nearly like i was getting and the cough has calmed down quite a bit... But Lord when I laugh i have a big laugh the cough is right there not long after i begin! I do have pain that starts a at my rib cage to the back of the rib cage when i breathe in at times the last week was less pain.. So I know im going up and down... But Im going to keep on going when god calls on me to go home, then i go home. But at least im going to be doing something i wasnt to do.. going to go sky dving next week!!Cant wait..... God bless you!!
dabombmom49

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Go, girl, go!

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dabombmom49,

Right there with you!!!

Have you sky dived before?? I have always wanted to do it, but am on the fence. Let me know if it is all that you expected?

Diving alone, or in tandem??

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Eldee: OK if you are on the fence.... jump off that first and see if you like it

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7seas,

Don't think I can even climb the fence anymore!!! Probably fall in the process of trying. Maybe that tells me something!!????

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That's good news to hear,did you have any new treatment or do anything a little different?

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Okay I did not know that about the Carbon dioxide. Just had my 6 month tests, PFT, arterial blood gas test on treadmill. Don't have all the tests back yet but know my DLCOdropped from 65-61. On the Arterial Blood gas test my Sats bottommed out at the end at 47. The last time it was 50 at the end. I am still working and my Pulmonologist doesn't think it is a problem yet has my Sats come up to low 90's pretty quick when I stop moving. My job involves tons of walking and sats drop in to the 80's. Glad you were able to walk as far as you can and I never discount God's miracles. I know I just feel wiped out all the time lately and sleep constantly.

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Are you taking ubiquinol and acetyl L-cysteine? The first is made by the body, but as we get older our bodies make less and less. It is essential for the operation of the electron chain which results in ATP ( adenosine triphosphate), which is energy.

One physician tells of the hospitalized elderly person who was so exhausted and tired looking that she very likely thought this was the end. The doctor had her blood tested for CoQ10 and found it to be dangerously low. When he tried to prescribe the enzyme for her, he was told that the hospital could not provide anything for which a prescription was not required (aspirin etc being exceptions, I would hope!), so he moved her to another hospital where she could get her CoQ10. Within about a month, she was back home, happily doing the gardening she loved so much.

Not that CoQ10 is a magic bullet or any sort of cure. The indisputable fact about it is that a deficiency therein is bad news for the body. Until fairly recently, I personally took 1200 mg daily of ubiquinone (the amount generally prescribed for Parkinson's patients, so it
certainly has a track record) because I have been badly damaged by statins. Now I take 100 mg of ubiquinol instead; that is the easily bioavailable form of Q10 which until recently was unavailable to consumers. You might try it; it may make a difference in your energy level - but not right away; it takes time.

The acetyl L-carnitine assists in fat metabolism. When i told my doctor that I was taking it, he had to look it up because he was not familiar with it. Upon reading about it, he said "Keep it up."

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Eldee
No I have not sky dived before. I called my sister and told her that was at the top of my bucket list. She Said great I ll go with you.. She called me a few days later and said it is totally awsome and SAID WHAT YOU DID IT WITHOUT ME!! She said yep I already had it scheduled and I didnt have the heart to tell you! So she lives in Vancouver WA and she said the ski diving is over Oregon and it is just Awesome and the rules are you have to fly tandem 10 times before you can go solo...I said can I do it all in one day??? I dont know if I can but im sure going to try....wooo hooo!! My motto is I try everything once and Twice if i like it... lol

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eldee and 7seas You will be happy to know my doctors agree with you.... I have an oximeter and I have registered low 87 high is 96! but do you all have a fast heart rate when it declines my was up to 132bpm!! Color me stupid But I dont know if the heart rate goes up or down mine seems to be going up when oxygen level goes down!for example right now im at 93 and heart rate 110 this is sitting down!! However I have not hit 99 Like at the doctors!!

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