Re: Carbon Dioxide and resp issues

[Guest guest]

Hi Cheryl,

When they did the sleep study, they should have also tracked your oxygen saturation levels when you are asleep. Our oxygenation always drops during sleep, and that could signify that you are starved for o2. That will make it so that the pulm can order an oxygen concentrator to be used along with your cpap at night.

They can also do an overnight finger pulse ox at night-- and it shows what is going on even with a cpap. So that can be the extra info they need. They can also do a 24hr pulse oximetry where you have the finger measure during the day so that they can see what is happening when you are doing your normal actiivities of daily living.

Do you have a local hospital or facility that has a pulmonary rehab program? These are excellant to teach us to breath correctly-- and helps to build endurance. I've done a few posts on Pulmonary Rehab--- you can find them in the ARCHIVES. The address for this is at the bottom of every email-- but I will send them out on a mass email-- for those that may have a block on the section that covers the ARCHIVES and repeat info.

Different foods can make breathing more difficult-- I know that if eat a big pasta meal, I'll struggle with my breathing all night long. I'll try to find my info-- as diets high in refined carbs are a huge insult to our respiratory system.

Dehydration also makes breathing more difficult-- so do what you cna to make sure that isn't adding to the problem. Caffeine and sodas are bad news in this area.

When asked "what is it that makes you have a hard time breathing"-- get real specific with them. If it's walking to the mailbox, going up stairs, grocery shopping, making love- tell them-- and they may decide they need to order the tests (exercise tolerance) to see what is really happening.

Most of us are carrying a tremendous amount of extra weight due to prednisone, and that is another insult to our respiratory system. Sadly, many of our docs just see the extra weight-- and decide our problem is due to that, not secondary from our sarcoidosis.

Learning to breath correctly,-- full deep breathes, and full exhalations to totally empty the lungs is what is going to help change the carbon dioxide levels-- and you really need the help of a good respiratory therapist to learn this. So ask for a referral -- hopefully to a program that can help you build up some endurance and breath more fully.

Anemia can also add insult to your breathing, as a low red blood cell count makes your o2 levels drop-- as it is the red blood cells that carry the o2 to your body. So they should be checking this also. Another note on anemia-- if you are dehydrated, then the electrolytes can be whacked out-- and make respiratory symptoms worse. So again, hydration is a huge, huge influence.

I know you are stating that it is the c02 levels that are high-- but how are the carbon monoxide levels in your home? If you have a proprane or natural gas stove and heating-- and there is a problem with ventilation-- that too can be problamatic. We heat exclusively with a wood stove-- and during the winter- we make sure that the sensor is working well-- as fire requires alot of oxygen-- and if the chimney flue is in need of cleaning, it's easy for those levels to go up.

So-- ask for an overnight pulse oximetry test or

ask for a 24 hr pulse oximetry test.

ask for a referral for pulmonary rehabilitation. ask for an exercise tolerance test.

ask about your lab tests-- do they show you being anemic.

ask them what your co2 levels are without correction for lung volume. (So many times they just say well, you have ie- 60% lung volume and when we "correct" the co2 for the decreased volume-- you're ok." Sadly, it's this that they miss-- and you can be desaturating because of lowered lung volume, and not able to recover-- so you end up actually "hyperventilating" and breathing even more shallowly-- and that increases the co2 level. (Numbness of extremities, blue fingertips and nails, blue lips) are all signs of hyperventilation.

'

I hope this helps, and I'll try to get back online in a day or two-- and check up on this.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tuesday, August 11, 2009 5:10:30 PMSubject: Joined recently - still seeking answers

I am frustrated and find myself here again, searching for any information on excess carbon dioxide in arterial blood gases. I already have a number of diagnoses I deal with, however, the last time they redid my sleep study, reconfirming both central and obstructive sleep apnea, the sleep doc strongly encouraged me to f/u on the ABG room air tests that indicate I do not have enough O2 and have too much carbon dioxide in my blood. She asked that I f/u with my regular PCP and only sees patients in her office after careful consideration on referral from your PCP. The pulmonary function tests come out either w/in normal ranges or inconclusive, but hurt like hell and exhausted me to do. The chest x-ray, chest ct scan, etc are normal. Yet, no one can explain the balance issues, why I am always tired, w/o energy or motivation, sweat like crazy upon the slightest exertion, and now have this abnormal ABG. Everything is constantly blamed on my meds, so I

finally quit taking almost everything they have me on. The problems persist. The tests come back normal or get attributed to something they have already dx. I do NOT WANT some other problem. However, everything I read talks about the toxicity of the carbon dioxide, the damage that it does and it seems like that ought to give rise to figuring it out!! Instead, I get asked why it bothers me!! I nearly died of strep A in my blood stream 4 yrs ago, acute renal failure, my liver was trying to shut down, and was in a coma for 3 days. I do not want to wait until the CO2 has done its damage for them to figure it out!!! Meanwhile, I am not the same person that I was. It seems everything they dx has its origins in the brain stem. My cognitive function and my memory are both worse than before the coma, but they say there is no residual damage.I ended up here on this list 4-6 weeks ago b/c the research seemed to be pointing to the possibility of sarc or

neurosarc. How do you get the doctors to look seriously at what is happening? If you can't, then how do you resolve, slow thw progression, or somehow address the respiratory toxicity??Thank you for listening and any help you can provide.Cheryl M.

[Guest guest]

Thank you, Tracie for your kind reply. I have both central and obstructive sleep apnea, so I have an oxygen concentrator that I use with the CPAP at night. I also take O2 during the day when I can't stay awake or have a terrible headache -- somteimes it is the only thing that works. Central sleep apnea is the dx when your brain has stopped reminding you to breathe!! Thus, the O2 and oxygen concentrator. They also did a 24hr pulse oximeter test and my O2 sat likes to hover at 88=91, maybe spike up to 93, even when I am up and around. Last surgery, they took the O2 off and I dropped to 91-93 and stayed there in less than 15 min after they remoeved the O2 at 97-98. I do not drink caffeine or soda -- I deal with far too much chronic pain and therefore cut out my beloved caffeine a long time ago now!! I used

to LOVE my espressos and lattes!!!!They have me on potassium now b/c it is low again. I am carrying extra weight. I founght for 3.5 yrs to have them address my right foot until I finally got angry enough to demand surgery and refuse to live one more day without the ability to walk!! I have a very aggressive form of psoriatic arthritis that destroyed the midfoot joints of my right foot, so I am out of shape and overweight. My endurance is terrible. I have told them that I spent an entire weekend trying to put shelving paper on ONE shelf in the kitchen and was dripping with sweat. It took every ounce of energy I had. I drip with sweat each time I go to PT and even the PT gal has never seen it this bad from others before. SO I am trying. My monocytes are always high, which has now been explained as somewhat of a side effect of the carbon monoxide -- my bone marrow is apparently working overtime to supply good blood cells. I think that it is b/c of

some of the arthritis and FM issues that he has not tried to do any exercise tolerance, assuming that it would not be accurate, but that is part of the problem -- they always chalk it up to something like my meds and just ignore it until it is out of control and doing its damage. That is why/how I nearly died!! (Different provider than now.)I will look for the pulmonary rehab and food info you referenced and take the bottom of this info with me to the next appt so that I can share with the doctor. I was badly injured -- car accident 12 yrs ago now -- and I did OK with holistic and natural non-traditional means and massage for a long time. Unfortunately, once my body fell off the wrong side of the tightwire I was one, my health has gone rapidly downhill and I cannot seem to stop the ball from rolling faster and faster downhill. It is what has frightened me about this and made me want to get ahead of it before it is allowed to also be out of

control. They do not seem to understand. Because of the sleep issues and my balance, I cannot drive. I cannot do so many things on my own. I would like to have whatever is left of this life back!!! I think that's what we are all fighting for, so thank you again for the information and I will go and look at the abstracts!!CherylTo: Neurosarcoidosis Sent: Tuesday, August 11, 2009 7:36:16 PMSubject:

Re: Carbon Dioxide and resp issues

Hi Cheryl,

When they did the sleep study, they should have also tracked your oxygen saturation levels when you are asleep. Our oxygenation always drops during sleep, and that could signify that you are starved for o2. That will make it so that the pulm can order an oxygen concentrator to be used along with your cpap at night.

They can also do an overnight finger pulse ox at night-- and it shows what is going on even with a cpap. So that can be the extra info they need. They can also do a 24hr pulse oximetry where you have the finger measure during the day so that they can see what is happening when you are doing your normal actiivities of daily living.

Do you have a local hospital or facility that has a pulmonary rehab program? These are excellant to teach us to breath correctly-- and helps to build endurance. I've done a few posts on Pulmonary Rehab--- you can find them in the ARCHIVES. The address for this is at the bottom of every email-- but I will send them out on a mass email-- for those that may have a block on the section that covers the ARCHIVES and repeat info.

Different foods can make breathing more difficult-- I know that if eat a big pasta meal, I'll struggle with my breathing all night long. I'll try to find my info-- as diets high in refined carbs are a huge insult to our respiratory system.

Dehydration also makes breathing more difficult-- so do what you cna to make sure that isn't adding to the problem. Caffeine and sodas are bad news in this area.

When asked "what is it that makes you have a hard time breathing"-- get real specific with them. If it's walking to the mailbox, going up stairs, grocery shopping, making love- tell them-- and they may decide they need to order the tests (exercise tolerance) to see what is really happening.

Most of us are carrying a tremendous amount of extra weight due to prednisone, and that is another insult to our respiratory system. Sadly, many of our docs just see the extra weight-- and decide our problem is due to that, not secondary from our sarcoidosis.

Learning to breath correctly,-- full deep breathes, and full exhalations to totally empty the lungs is what is going to help change the carbon dioxide levels-- and you really need the help of a good respiratory therapist to learn this. So ask for a referral -- hopefully to a program that can help you build up some endurance and breath more fully.

Anemia can also add insult to your breathing, as a low red blood cell count makes your o2 levels drop-- as it is the red blood cells that carry the o2 to your body. So they should be checking this also. Another note on anemia-- if you are dehydrated, then the electrolytes can be whacked out-- and make respiratory symptoms worse. So again, hydration is a huge, huge influence.

I know you are stating that it is the c02 levels that are high-- but how are the carbon monoxide levels in your home? If you have a proprane or natural gas stove and heating-- and there is a problem with ventilation- - that too can be problamatic. We heat exclusively with a wood stove-- and during the winter- we make sure that the sensor is working well-- as fire requires alot of oxygen-- and if the chimney flue is in need of cleaning, it's easy for those levels to go up.

So-- ask for an overnight pulse oximetry test or

ask for a 24 hr pulse oximetry test.

ask for a referral for pulmonary rehabilitation. ask for an exercise tolerance test.

ask about your lab tests-- do they show you being anemic.

ask them what your co2 levels are without correction for lung volume. (So many times they just say well, you have ie- 60% lung volume and when we "correct" the co2 for the decreased volume-- you're ok." Sadly, it's this that they miss-- and you can be desaturating because of lowered lung volume, and not able to recover-- so you end up actually "hyperventilating" and breathing even more shallowly-- and that increases the co2 level. (Numbness of extremities, blue fingertips and nails, blue lips) are all signs of hyperventilation.

'

I hope this helps, and I'll try to get back online in a day or two-- and check up on this.

Take care,

Tracie

NS Co-owner/moderator

From: cmoralez_ak <cmoralez_ak@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tuesday, August 11, 2009 5:10:30 PMSubject: Joined recently - still seeking answers

I am frustrated and find myself here again, searching for any information on excess carbon dioxide in arterial blood gases. I already have a number of diagnoses I deal with, however, the last time they redid my sleep study, reconfirming both central and obstructive sleep apnea, the sleep doc strongly encouraged me to f/u on the ABG room air tests that indicate I do not have enough O2 and have too much carbon dioxide in my blood. She asked that I f/u with my regular PCP and only sees patients in her office after careful consideration on referral from your PCP. The pulmonary function tests come out either w/in normal ranges or inconclusive, but hurt like hell and exhausted me to do. The chest x-ray, chest ct scan, etc are normal. Yet, no one can explain the balance issues, why I am always tired, w/o energy or motivation, sweat like crazy upon the slightest exertion, and now have this abnormal ABG. Everything is constantly blamed on my meds, so I

finally quit taking almost everything they have me on. The problems persist. The tests come back normal or get attributed to something they have already dx. I do NOT WANT some other problem. However, everything I read talks about the toxicity of the carbon dioxide, the damage that it does and it seems like that ought to give rise to figuring it out!! Instead, I get asked why it bothers me!! I nearly died of strep A in my blood stream 4 yrs ago, acute renal failure, my liver was trying to shut down, and was in a coma for 3 days. I do not want to wait until the CO2 has done its damage for them to figure it out!!! Meanwhile, I am not the same person that I was. It seems everything they dx has its origins in the brain stem. My cognitive function and my memory are both worse than before the coma, but they say there is no residual damage.I ended up here on this list 4-6 weeks ago b/c the research seemed to be pointing to the possibility of sarc or

neurosarc. How do you get the doctors to look seriously at what is happening? If you can't, then how do you resolve, slow thw progression, or somehow address the respiratory toxicity??Thank you for listening and any help you can provide.Cheryl M.

[Guest guest]

I have both central and obstructive also-- so I know what you're saying. It's no fun waking up feeling like you're in a panic and suffocating.

What confuses me is that on oxygen-- you said your sats are 88-91, but take it away and you're up to 97-98%. This is the level of oxygen-- and if you are at 88 with oxygen-- then you need the o2. If you drop without it-- that is where they should increase the number of liters you are on. I use 3 liters of oxygen, up from 2-- and right now, with the air quality being crap-- I am needing 4-5 liters, but if I get it too high-- then I get the symptoms telling me I'm oversaturated with oxygen! It's hyperventilation at that point.

There are several meds that should help if you have sarcoidosis. I suspect you've done prednisone in the past??

Plaquenil helps with lung issues, along with short-term and memory problems. Methotrexate also helps with the psor. arthritis, the lungs, and joint pain. Imuran or Arava can also help--- they are immunosuppressants used for arthritis (all kinds) as well as body pain from sarc. The Biological REsponse modifiers-- Enbrel, Cellcept, Humira, Remicade-- all help with all these issues. The are major immunosuppressants, but if the DMARDS and anti-nflammatories aren't doing it-- then they are good options. It's important to start small and take on one med at a time-- so that you know what is working and can id any problems or side effects.

Folic acid is a must, as it keeps us from developing pernicious anemia. So if you are on any immunosuppresant, get the MD to prescribe it! It's a very cheap rx-- and it works wonders.

Check out www.arthritistoday.org and look up the drug info-- they classify all the meds by group-- DMARD, BRM's, Anti-inflammatory, Pain, etc-- and it is the best resource I've found.

Take care,

Tracie

NS Co-owner/moderator

PS-- Sorry guys, I'm not back yet! Just checking in a little bit-- I'm still very sick.

To: Neurosarcoidosis Sent: Tuesday, August 11, 2009 9:17:13 PMSubject: Re: Carbon Dioxide and resp issues

Thank you, Tracie for your kind reply. I have both central and obstructive sleep apnea, so I have an oxygen concentrator that I use with the CPAP at night. I also take O2 during the day when I can't stay awake or have a terrible headache -- somteimes it is the only thing that works. Central sleep apnea is the dx when your brain has stopped reminding you to breathe!! Thus, the O2 and oxygen concentrator. They also did a 24hr pulse oximeter test and my O2 sat likes to hover at 88=91, maybe spike up to 93, even when I am up and around. Last surgery, they took the O2 off and I dropped to 91-93 and stayed there in less than 15 min after they remoeved the O2 at 97-98. I do not drink caffeine or soda -- I deal with far too much chronic pain and therefore cut out my beloved caffeine a long time ago now!! I used to LOVE my espressos and lattes!!!!They have me on potassium now b/c it is low again. I am carrying extra weight. I founght for 3.5 yrs to

have them address my right foot until I finally got angry enough to demand surgery and refuse to live one more day without the ability to walk!! I have a very aggressive form of psoriatic arthritis that destroyed the midfoot joints of my right foot, so I am out of shape and overweight. My endurance is terrible. I have told them that I spent an entire weekend trying to put shelving paper on ONE shelf in the kitchen and was dripping with sweat. It took every ounce of energy I had. I drip with sweat each time I go to PT and even the PT gal has never seen it this bad from others before. SO I am trying. My monocytes are always high, which has now been explained as somewhat of a side effect of the carbon monoxide -- my bone marrow is apparently working overtime to supply good blood cells. I think that it is b/c of some of the arthritis and FM issues that he has not tried to do any exercise tolerance, assuming that it would not be accurate, but that is part of

the problem -- they always chalk it up to something like my meds and just ignore it until it is out of control and doing its damage. That is why/how I nearly died!! (Different provider than now.)I will look for the pulmonary rehab and food info you referenced and take the bottom of this info with me to the next appt so that I can share with the doctor. I was badly injured -- car accident 12 yrs ago now -- and I did OK with holistic and natural non-traditional means and massage for a long time. Unfortunately, once my body fell off the wrong side of the tightwire I was one, my health has gone rapidly downhill and I cannot seem to stop the ball from rolling faster and faster downhill. It is what has frightened me about this and made me want to get ahead of it before it is allowed to also be out of control. They do not seem to understand. Because of the sleep issues and my balance, I cannot drive. I cannot do so many things on my own. I would like

to have whatever is left of this life back!!! I think that's what we are all fighting for, so thank you again for the information and I will go and look at the abstracts!!Cheryl

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tuesday, August 11, 2009 7:36:16 PMSubject: Re: Carbon Dioxide and resp issues

Hi Cheryl,

When they did the sleep study, they should have also tracked your oxygen saturation levels when you are asleep. Our oxygenation always drops during sleep, and that could signify that you are starved for o2. That will make it so that the pulm can order an oxygen concentrator to be used along with your cpap at night.

They can also do an overnight finger pulse ox at night-- and it shows what is going on even with a cpap. So that can be the extra info they need. They can also do a 24hr pulse oximetry where you have the finger measure during the day so that they can see what is happening when you are doing your normal actiivities of daily living.

Do you have a local hospital or facility that has a pulmonary rehab program? These are excellant to teach us to breath correctly-- and helps to build endurance. I've done a few posts on Pulmonary Rehab--- you can find them in the ARCHIVES. The address for this is at the bottom of every email-- but I will send them out on a mass email-- for those that may have a block on the section that covers the ARCHIVES and repeat info.

Different foods can make breathing more difficult-- I know that if eat a big pasta meal, I'll struggle with my breathing all night long. I'll try to find my info-- as diets high in refined carbs are a huge insult to our respiratory system.

Dehydration also makes breathing more difficult-- so do what you cna to make sure that isn't adding to the problem. Caffeine and sodas are bad news in this area.

When asked "what is it that makes you have a hard time breathing"-- get real specific with them. If it's walking to the mailbox, going up stairs, grocery shopping, making love- tell them-- and they may decide they need to order the tests (exercise tolerance) to see what is really happening.

Most of us are carrying a tremendous amount of extra weight due to prednisone, and that is another insult to our respiratory system. Sadly, many of our docs just see the extra weight-- and decide our problem is due to that, not secondary from our sarcoidosis.

Learning to breath correctly,-- full deep breathes, and full exhalations to totally empty the lungs is what is going to help change the carbon dioxide levels-- and you really need the help of a good respiratory therapist to learn this. So ask for a referral -- hopefully to a program that can help you build up some endurance and breath more fully.

Anemia can also add insult to your breathing, as a low red blood cell count makes your o2 levels drop-- as it is the red blood cells that carry the o2 to your body. So they should be checking this also. Another note on anemia-- if you are dehydrated, then the electrolytes can be whacked out-- and make respiratory symptoms worse. So again, hydration is a huge, huge influence.

I know you are stating that it is the c02 levels that are high-- but how are the carbon monoxide levels in your home? If you have a proprane or natural gas stove and heating-- and there is a problem with ventilation- - that too can be problamatic. We heat exclusively with a wood stove-- and during the winter- we make sure that the sensor is working well-- as fire requires alot of oxygen-- and if the chimney flue is in need of cleaning, it's easy for those levels to go up.

So-- ask for an overnight pulse oximetry test or

ask for a 24 hr pulse oximetry test.

ask for a referral for pulmonary rehabilitation. ask for an exercise tolerance test.

ask about your lab tests-- do they show you being anemic.

ask them what your co2 levels are without correction for lung volume. (So many times they just say well, you have ie- 60% lung volume and when we "correct" the co2 for the decreased volume-- you're ok." Sadly, it's this that they miss-- and you can be desaturating because of lowered lung volume, and not able to recover-- so you end up actually "hyperventilating" and breathing even more shallowly-- and that increases the co2 level. (Numbness of extremities, blue fingertips and nails, blue lips) are all signs of hyperventilation.

'

I hope this helps, and I'll try to get back online in a day or two-- and check up on this.

Take care,

Tracie

NS Co-owner/moderator

From: cmoralez_ak <cmoralez_ak@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tuesday, August 11, 2009 5:10:30 PMSubject: Joined recently - still seeking answers

I am frustrated and find myself here again, searching for any information on excess carbon dioxide in arterial blood gases. I already have a number of diagnoses I deal with, however, the last time they redid my sleep study, reconfirming both central and obstructive sleep apnea, the sleep doc strongly encouraged me to f/u on the ABG room air tests that indicate I do not have enough O2 and have too much carbon dioxide in my blood. She asked that I f/u with my regular PCP and only sees patients in her office after careful consideration on referral from your PCP. The pulmonary function tests come out either w/in normal ranges or inconclusive, but hurt like hell and exhausted me to do. The chest x-ray, chest ct scan, etc are normal. Yet, no one can explain the balance issues, why I am always tired, w/o energy or motivation, sweat like crazy upon the slightest exertion, and now have this abnormal ABG. Everything is constantly blamed on my meds, so I

finally quit taking almost everything they have me on. The problems persist. The tests come back normal or get attributed to something they have already dx. I do NOT WANT some other problem. However, everything I read talks about the toxicity of the carbon dioxide, the damage that it does and it seems like that ought to give rise to figuring it out!! Instead, I get asked why it bothers me!! I nearly died of strep A in my blood stream 4 yrs ago, acute renal failure, my liver was trying to shut down, and was in a coma for 3 days. I do not want to wait until the CO2 has done its damage for them to figure it out!!! Meanwhile, I am not the same person that I was. It seems everything they dx has its origins in the brain stem. My cognitive function and my memory are both worse than before the coma, but they say there is no residual damage.I ended up here on this list 4-6 weeks ago b/c the research seemed to be pointing to the possibility of sarc or

neurosarc. How do you get the doctors to look seriously at what is happening? If you can't, then how do you resolve, slow thw progression, or somehow address the respiratory toxicity??Thank you for listening and any help you can provide.Cheryl M.