Chock Full o' Nuts
GA
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Joined: 02/02/2007
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Thanks for the suggestions. DH sees a pulmonologist about every 2 months. He has stage 4 sarcoidosis which causes severe restriction in his breathing. He has about 31% lung capacity now. DH definitely has sleep apnea, confirmed by a sleep study, but his lung disease made it nearly impossible for him to tolerate the bipap pressures. So he uses oxygen on 2-3L/min, which gives him enough gentle pressure to act kind of like a CPAP would to keep his throat open and prevent him from stopping breathing during the night.
When he goes to the doctor they usually do "the 6 minute test" where they walk him around and try to get him all out of breath to see where his oxygen sats go. He never desats below the 90s during that time. But holy cow! you should see him the rest of the afternoon. He's exhausted!
I'm going to look into a small inexpensive oximeter, I think. Just for my own interest. When DH is getting all verklempt I'd like to just pop that doo-hickey on his finger and find out if he's coming up short on oxygen or just "having a moment."
"Those who dwell...among the beauties and mysteries of the earth are never alone or weary of life."--Rachel Carson, environmentalist, 1956
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CapeM1
Cape May,NJ
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Joined: 02/19/2008
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Your husband's case sounds so familar to mine..I have pulmonary fibrosis, which is also a restrictive disease. I started feeling worse and worse so the docs would check my pulse oxygenation which was getting lower (into the low 90s), but not low enough to explain why I felt so lousy. The docs, IMHO did not take my complaints serious..I knew the shortness of breath on exertion was to be expected with the fibrosis but the extreme fatigue had me baffled. The docs told to expect to get very short of breath on exertion but they did not seem to realize HOW tired I felt. It then came to a point where I was starting to fall asleep while at work and had actually fallen asleep twice while driving. Luckily I didn't kill myself or anyone else. I also, like your husband, started getting confused. Some days were worse than others, but eventually my symptoms became extremely severe and I was admitted to Temple Medical Center in Philly. While there I went into respiratory arrest..It was then the docs realized that my CO2 level was at a astoundingly high level of 116 (normal is 30) and they later said that the only reason I didn't die was because my body had over the years adjusted to the levels getting higher and higher, but that I had finally hit a wall! They found that for some reason my brain does not tell my lungs to breathe more than 2 times a minute while I am asleep and my CO2 levels built up because I wasn't breathing hard enough to expell the CO2. They then put a bipap machine at night with a very high pressure. This acts somewhat like a ventilator. It keeps me breathing enough to expel the CO2. This was 2 years ago. While I still have severe fibrosis, I now have CO2 levels in the 50s (which are considered my "normal", and I know what symptoms to look for to make sure they don't start getting high again. Yes, I still have the fibrosis symptoms of shortness of breath and I am on oxygen 2 liters, but I do not have the tiredness or the confusion that comes with elevated CO2 levels. I know what symptoms to look for now, and I also get ABGs (blood gases) done every 3 months to monitor this. If the bipap stops working then I would need a permanent tracheostomy..so needless to say I will never complain about the bipap (and, yes, it IS uncomfortable but it is a small price to pay for being alive). I had started with a pressure of 24/5 and the docs have been able to get it down to 17/5 but will not drop it lower. Please tell your husband to give the bipap another try or at least to monitor his CO2 levels. Yes, the pulse oximeter (finger monitor) can tell him if his pulse oxygen levels are normal but this does not always mean his CO2 levels are normal. They are 2 different levels. Sorry this is so long but your husband's symptoms are serious..tell him to be his own advocate and not to give up if he does not feel right! Feel free to PM me if you need. Take Care.
Mark and Vikki
2008 Gulfstream Amerilite 21MB
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Chuck & Lori
Grove City, PA 16127
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Joined: 09/06/2004
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Couple of things-
One of the symptoms of sarcoid is fatigue;
Sarcoid can affect more than just the lungs. Other common areas affected include the eyes, skin, nerves and brain, heart, and hormone producing glands (according to webMD). Has he been checked for sarcoid affecting other organs?;
2-3 liters of oxygen is NOT like gentle CPAP in adults. If your husband cannot tolerate the high pressures of CPAP/BiPAP prescribed, try starting lower and work up. Positive pressure, not oxygen, is the treatment of choice for obstructive sleep apnea. Given the sarcoid oxygen may be required as well, but NOT instead;
The suggestions that his CO2 is elevated may be right on. This should be checked;
Which "lung capacity" is 31%? Diffusing capacity? Vital capacity? Something else?
Your husband's problems sound complex. I hope he has a PCP who coordinates his care with any or all specialists he might need to manage everything.
I hope I am not coming on too strong. I am NOT a doctor, only a respiratory therapist, so take what I suggest with a grain (or more) of salt. Good luck.
Chuck & Lori
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Chock Full o' Nuts
GA
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Joined: 02/02/2007
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Chuck & Lori wrote:Couple of things-
One of the symptoms of sarcoid is fatigue;
Sarcoid can affect more than just the lungs. Other common areas affected include the eyes, skin, nerves and brain, heart, and hormone producing glands (according to webMD). Has he been checked for sarcoid affecting other organs?;
2-3 liters of oxygen is NOT like gentle CPAP in adults. If your husband cannot tolerate the high pressures of CPAP/BiPAP prescribed, try starting lower and work up. Positive pressure, not oxygen, is the treatment of choice for obstructive sleep apnea. Given the sarcoid oxygen may be required as well, but NOT instead;
The suggestions that his CO2 is elevated may be right on. This should be checked;
Which "lung capacity" is 31%? Diffusing capacity? Vital capacity? Something else?
Your husband's problems sound complex. I hope he has a PCP who coordinates his care with any or all specialists he might need to manage everything.
I hope I am not coming on too strong. I am NOT a doctor, only a respiratory therapist, so take what I suggest with a grain (or more) of salt. Good luck.
No, you're not coming on strong. It *is* a complex situation. I'm an RN and sometimes it stretches me to *my* limits to understand it all. The really sad part is that most regular doctors aren't as knowledgeable as the patients about this particular disease. (The pulmonologist has a really good handle on things, thank God!)
DH has been diagnosed for 6yrs. We know he has sarcoidosis in his brain (seizures),heart(sick sinus syndrome--pacemaker), lungs (scar tissue EVERYWHERE) ,parotid glands(permanent lumps under his jaw), skin and several joints (hips, back & knees especially). DH takes 19 different meds, including prednisone and methotrexate, and 4 inhalers every day. He recently had an overnight study(can't remember what they called it) which confirmed that his sats drop into the low 80s at night, so he definitely needs oxygen then.
It is entirely possible that he's not blowing off the CO2--i never even thought of that. Which would definitely make him "altered." Hmmmm....I may have to take a day off to go to the doctors with him next month. That's the thing--he goes while I'm at work, but he can't remember what they told him unless he writes it down. Even then sometimes I look at it and go "Whaaaattt??"
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dllfo
Sacramento, CA
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Joined: 02/12/2005
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BTW, I use a Respironics BiPAP Auto Servo Ventilator. It gives me the most flexability for treatment. My Pulmonologist got Medicare to pay for most of it. I was surprised.
If our RT is still reading this, I use Encore Pro to monitor my breathing at night. I have hit 30 cmH2O for 30 straight minutes. I hit 30 quite often, so the SV unit has been a real good unit. It is a little noisy and beeps loudly when I turn it off or use the heated humidifier.
Sarcoidosis (SP?) is a rough one. I have a friend who has it and she is
tired all the time.
Good luck with it...
2002 Monaco Diplomat 38PST
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