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Beth-WHY do our hearts have to work harder???????? Why is oxygen having a harder time going into the lungs????? If you have an 02 in the 90's you are obviously exchanging 02 well....I am so baffled by this. And, I am getting dizzy even though my 02 level is great! and I get breathless. It just doesn't make sense to me! Joyce Rudy Birds AZ

Re: Question about power chairs

Joyce,From what I understand our heart rate shoots up because we have no reserve of 02 in our tissues and then stays up trying to get the most out of what we are getting through our lungs. I don't take carts everywhere, I walk to and from my doctors offices, etc, but if I continue to walk my sats drop below 90. I will be very interested to see what happens in November during my first (after 7 years you think I would have had one of these) 6 minute walk. I walked up and down the hallway today at the doctors office while waiting for them to open using an e tank on 5lpm pulse and by the time I sat down (maybe 100 yds or so) I had dropped to 87 and my hr was up to 124. Everything stabalized but I could feel it. Get your excercise but if your body is telling you to sit then sit and ride. Just because a doctor tells me something doesn't mean its gospel. Only you can tell them how you feel. Its like the difference between a balance sheet and an income statement. A balance sheet is a snapshot in time, just like your test results..at that second they were so and so. But you are like an income statement which shows a whole month or year of data and many many times I tell my clients that the year to date stuff is more important than any one minute or month can be. You are going back to NJH this month right?Dyane Phoenix Ipf 02> >> > I have a question about power chairs. Those of you who use them- how low does your O2 go with oxygen when you move? Do you need more liters per minute? I ask these questions because I asked both my physician and my pulmodude and the pulmodude at Jewish about using the electric chairs at places like Costco and super walmarts and the grocery store and they all said NO without hesitation. They told me to lean on the cart but don't use the electric cart. It seems like none of my doctors wanted me or wants me to use any kind of device that would make life easier because they say it is bad for the lungs. Joyce Rudy AZ birds> >>

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Joyce,

The piece that you may not be considering is that the parts of your lungs that have scarring, the parts that are fibrotic are stiff. Normally our lungs have the flexibility, the squishiness of a wet sponge. When we have fibrosis parts of our lungs stiffen and become much less flexible due to the scarring. Think about the texture of a Nerf Football as opposed to that wet kitchen sponge. You can still squeeze that nerf football but it takes more energy and you have to work harder.

It's similar with our lungs. They are stiffer and less flexible so our hearts have to work harder to get the blood through them. So our heart works harder and beats faster to try to get blood through inflexible, stiff and hardening lungs. Does that make a little more sense? Please keep asking questions, there are lots of folks here willing to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, September 19, 2009 12:59:03 PMSubject: Re: Joyce Rudy

Beth-WHY do our hearts have to work harder?????? ?? Why is oxygen having a harder time going into the lungs????? If you have an 02 in the 90's you are obviously exchanging 02 well....I am so baffled by this. And, I am getting dizzy even though my 02 level is great! and I get breathless. It just doesn't make sense to me! Joyce Rudy Birds AZ

Re: Question about power chairs

Joyce,From what I understand our heart rate shoots up because we have no reserve of 02 in our tissues and then stays up trying to get the most out of what we are getting through our lungs. I don't take carts everywhere, I walk to and from my doctors offices, etc, but if I continue to walk my sats drop below 90. I will be very interested to see what happens in November during my first (after 7 years you think I would have had one of these) 6 minute walk. I walked up and down the hallway today at the doctors office while waiting for them to open using an e tank on 5lpm pulse and by the time I sat down (maybe 100 yds or so) I had dropped to 87 and my hr was up to 124. Everything stabalized but I could feel it. Get your excercise but if your body is telling you to sit then sit and ride. Just because a doctor tells me something doesn't mean its gospel. Only you can tell them how you

feel. Its like the difference between a balance sheet and an income statement. A balance sheet is a snapshot in time, just like your test results..at that second they were so and so. But you are like an income statement which shows a whole month or year of data and many many times I tell my clients that the year to date stuff is more important than any one minute or month can be. You are going back to NJH this month right?Dyane Phoenix Ipf 02> >> > I have a question about power chairs. Those of you who use them- how low does your O2 go with oxygen when you move? Do you need more liters per minute? I ask these questions because I asked both my physician and my pulmodude and the pulmodude at Jewish about using the electric chairs at places like Costco and super walmarts and the grocery store and they all said NO without hesitation. They told me to lean on the cart but don't use the electric cart. It seems like none of my doctors wanted me or wants me to use any kind of device that would make life easier because they say it is bad for the lungs. Joyce Rudy AZ birds>

>>

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I think I finally understand! It's like when I was a kid, my mother had a devise that was cone shaped and it had tiny holes in it and you made mashed potato's by putting in the boiled potato's and taking a wooden mallet type thing and pushing them round and round thru the holes..boy it was a lot of work! It was hard work but in the end there still was mashed potato's! I have a hard time getting the 02 THRU my lungs because they are fibrotic! Like pushing the potato's thru the masher! The more I use my muscles the more 02 I need to feed them and the more my heart must beat to push the needed amount thru my lungs! That's it! But, taking medication to lower the blood pressure ....without the pressure of the heart trying to get the 02 thru my lungs I probably wouldn't have the amount of 02 I needed in my blood? If you can even take a medicine which stops the blood pressure from being so high. Perhaps that is why my doctor doesn’t' seem to be so interested in giving me medication to lower my blood pressure...? Your pressure will go down if you don't work your muscles so hard....I tend to rush thru my exercises,,,maybe I should just slow down? Joyce Rudy AZ Birds

Re: Question about power chairs

Joyce,From what I understand our heart rate shoots up because we have no reserve of 02 in our tissues and then stays up trying to get the most out of what we are getting through our lungs. I don't take carts everywhere, I walk to and from my doctors offices, etc, but if I continue to walk my sats drop below 90. I will be very interested to see what happens in November during my first (after 7 years you think I would have had one of these) 6 minute walk. I walked up and down the hallway today at the doctors office while waiting for them to open using an e tank on 5lpm pulse and by the time I sat down (maybe 100 yds or so) I had dropped to 87 and my hr was up to 124. Everything stabalized but I could feel it. Get your excercise but if your body is telling you to sit then sit and ride. Just because a doctor tells me something doesn't mean its gospel. Only you can tell them how you feel. Its like the difference between a balance sheet and an income statement. A balance sheet is a snapshot in time, just like your test results..at that second they were so and so. But you are like an income statement which shows a whole month or year of data and many many times I tell my clients that the year to date stuff is more important than any one minute or month can be. You are going back to NJH this month right?Dyane Phoenix Ipf 02> >> > I have a question about power chairs. Those of you who use them- how low does your O2 go with oxygen when you move? Do you need more liters per minute? I ask these questions because I asked both my physician and my pulmodude and the pulmodude at Jewish about using the electric chairs at places like Costco and super walmarts and the grocery store and they all said NO without hesitation. They told me to lean on the cart but don't use the electric cart. It seems like none of my doctors wanted me or wants me to use any kind of device that would make life easier because they say it is bad for the lungs. Joyce Rudy AZ birds> >>

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Joyce,

Just be a little bit careful here. Regular old garden variety high blood pressure is something that doctors will treat regardless of whether or not we have lung disease. Having hypertension (high blood pressure) doesn't help blood get through our lungs and can damage our hearts, kidneys etc.

Pulmonary hypertension is increased pressure in the blood vessals of our lungs. It is extremely serious and if untreated will lead to death.

You should absolutely not rush through all that you need to do. Take your time, keep your sats above 90 and do things at a pace that does not leave you breathless. Keep yourself safe!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, September 19, 2009 3:59:57 PMSubject: Re: Joyce Rudy

I think I finally understand! It's like when I was a kid, my mother had a devise that was cone shaped and it had tiny holes in it and you made mashed potato's by putting in the boiled potato's and taking a wooden mallet type thing and pushing them round and round thru the holes..boy it was a lot of work! It was hard work but in the end there still was mashed potato's! I have a hard time getting the 02 THRU my lungs because they are fibrotic! Like pushing the potato's thru the masher! The more I use my muscles the more 02 I need to feed them and the more my heart must beat to push the needed amount thru my lungs! That's it! But, taking medication to lower the blood pressure ....without the pressure of the heart trying to get the 02 thru my lungs I probably wouldn't have the amount of 02 I needed in my blood? If you can even take a medicine which stops the blood pressure from being so high. Perhaps that is why my doctor doesn’t' seem to be so

interested in giving me medication to lower my blood pressure...? Your pressure will go down if you don't work your muscles so hard....I tend to rush thru my exercises,,, maybe I should just slow down? Joyce Rudy AZ Birds

Re: Question about power chairs

Joyce,From what I understand our heart rate shoots up because we have no reserve of 02 in our tissues and then stays up trying to get the most out of what we are getting through our lungs. I don't take carts everywhere, I walk to and from my doctors offices, etc, but if I continue to walk my sats drop below 90. I will be very interested to see what happens in November during my first (after 7 years you think I would have had one of these) 6 minute walk. I walked up and down the hallway today at the doctors office while waiting for them to open using an e tank on 5lpm pulse and by the time I sat down (maybe 100 yds or so) I had dropped to 87 and my hr was up to 124. Everything stabalized but I could feel it. Get your excercise but if your body is telling you to sit then sit and ride. Just because a doctor tells me something doesn't mean its gospel. Only you can tell them how you

feel. Its like the difference between a balance sheet and an income statement. A balance sheet is a snapshot in time, just like your test results..at that second they were so and so. But you are like an income statement which shows a whole month or year of data and many many times I tell my clients that the year to date stuff is more important than any one minute or month can be. You are going back to NJH this month right?Dyane Phoenix Ipf 02> >> > I have a question about power chairs. Those of you who use them- how low does your O2 go with oxygen when you move? Do you need more liters per minute? I ask these questions because I asked both my physician and my pulmodude and the pulmodude at Jewish about using the electric chairs at places like Costco and super walmarts and the grocery store and they all said NO without hesitation. They told me to lean on the cart but don't use the electric cart. It seems like none of my doctors wanted me or wants me to use any kind of device that would make life easier because they say it is bad for the lungs. Joyce Rudy AZ birds>

>>

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