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rebekah
02-01-2014, 05:04 AM
I went in for my EP test for my tachycardia about 2 weeks ago, but I had to reschedule since my oxygen level was low (it was 90) and the doctor didn't feel comfortable performing the procedure. He wanted me to go to the hospital for oxygen, but I had class later that day and just didn't want to go, especially with the crazy flu going around and me being so immunosuppressed. I did get some oxygen during my last Rituxan infusion on Jan. 17th because of the low levels, but nothing since. I saw my pcp and rheumy last week and my oxygen was 93 and 94, which isn't terribly low. I feel like I'm acting nonchalant about this even though I know it's not good. Has anyone had this issue? Could it just be from the lung involvement with wegs and should improve over the next few weeks as Rituxan kicks in or I should listen to my doctor and go the hospital for oxygen? I've never had this low oxygen issue before, but I certainly don't want to cause any addition health problems to my already long list.

Dirty Don
02-01-2014, 05:27 AM
Lists of meds and aches and pains and symptoms is what we live by now...sheesh. I've had terribly low oxygen at the onset of disease. It improved relatively rapidly as treatment extended. My lungs were pretty darn clear after about 3 months. It does take a while...be patient, go get some oxygen if you need it, can't hurt. May even feel better and thus allowing the doc to do his thing comfortably.

JeanMarie
02-01-2014, 09:58 AM
I'm with doing what the doc said--go get some oxygen

pberggren1
02-01-2014, 11:23 AM
My O2 Sats range from usually 92 to 97 at rest. Of course when I am active, especially climbing stairs, it goes below 90, even below 80 sometimes. The lowest I have ever seen it was 50, but that is when I had a bad lung infection and had just come off a bad coughing spell.

Debbie C
02-01-2014, 11:32 AM
Rebekah,are u having a hard time breathing, do u use an inhaler or anything like that for your lungs ?
I have one of those machines they put on your finger to measure your h2o and heartrate. Mine usuasllt measures around 98 but my heartrate is mostly around 103 ( too high ). If your doc. thinks you need it before you get the test,I think you should get it.
It's that great cold Ohio air you are breathing now:thumbdn:

Debbie C
02-01-2014, 11:33 AM
Nice pic Don !!!

windchime
02-01-2014, 11:35 AM
Hi Rebekah,

I currently have low oxygen stats also. They became more noticeable after my bronchoscopy in November. My resting O2 levels are 92-93, but it I walk to the kitchen or do ANY activity it drops to 85 and I then pant. I recently had the Pulmonary Hypertension work up and it isn't that so it's back in my Pulmonary Doc's court. They have ordered oxygen for me (a concentrator for home and portable bottles for on the go) and it helps a lot. This is not where I wanted to go, but I also like breathing so it was a reasonable choice for me. If the Pulm doc comes up with anything at my appt on the 12th I'll let you know. Have you had shortness of breath? Do you have a pulm doc? If so I would make an appt with them as they will be the ones to monitor this situation. Good luck and keep us posted.

mishb
02-01-2014, 12:52 PM
Breathing is a particularly good idea - great even. :tongue1:

I'm with the others.........if things are feeling right, and you need it, go and get it.

rebekah
02-01-2014, 12:53 PM
Oh, yes, I'm sure this cold Ohio air certainly isn't helping. I have been having fatigue and shortness of breath, but that's from my high HR and lung involvement. I go a few steps to the bathroom and my HR jumps up to 150... I've never had a problem with low O2 until this month. It's also weird all the pulse oximeter readings at the doctor's are low, but my blood work last week showed my CO2 was 25 (normal range is 22-30 mmol/L). I'm not sure what to believe. I bought 2 different pulse oximeters at the pharmacy and had to return both because neither worked properly so I'm shopping for one to keep track of it at home. My insurance doesn't cover portable oxygen unless my levels go below 90, and I don't want to find out how much it'll cost without insurance, but another hospital bill isn't ideal either. I don't know how long I'd have to stay there either.

windchime
02-01-2014, 04:00 PM
My resting HR lately is about 90 and it jumps to 120-130 with any activity. So putting two and two together I'd say they're related. I also have the fatigue which can be indicative of the low O2 levels. Before they would prescribe O2 for me I had to take the 6 minute walk test. Basically you have a pulse oximeter on your finger and you walk a predetermined route. They look at the Pulse Ox every 30 seconds and record it. If it falls too low you flunk, like me. Then insurance will pay for O2. It is usually covered under durable medical equipment. And you're right you don't want to pay cash. I have a pulse Ox for home and use it a lot. Mostly to confirm what I suspect and that is to get the oxygen on for a few minutes or use it when I'm doing thing around the house.

Usually when they take your O2 levels at the docs office you've had a minute to sit there and the O2 levels increase. I usually always come in at 92-93 at the docs office. I don't know what going to the hospital to get O2 entails. Does this mean a visit to the ER? That's a really pricey O2 tx if that's the case, however if you are ever in dire need don't hesitate. Your cardiologists can do the 6 minute walk test, mine did then referred me back to my Pulm doc. Hope some of this is helpful. Your best bet is talk to your pulm doc.

John
02-09-2014, 05:43 AM
Keep track of your co level. I can usually feel it when mine is low. Sometimes as low as 76 but not to often. I know it is time to relax and take some oxygen. I have been told by my son, which is an inhalation therapist, that as long as the first number is nine (9) it is pretty good. He said that he cannot get his up past 97 and he is in excellent shape. Fatigue and leg weakness is my cue for the oxygen. I use oxygen all night and have my portable with me when I am outside on the farm just in case I need it. Hate carrying it around esp. on the tractor or picking produce but it seems to be a necessary evil. I just finished my last of 4 RTS treatments. Hopefully this will put the WG in remission. I don't know if I am doing right but am trying to start a pick your own blackberry and red raspberry product, with the help of my great stepdaughter.
May God bless you and lets keep in contact to fight this disease

John

rebekah
02-09-2014, 10:48 AM
Thanks, I actually bought another oximeter to keep track of my oxygen levels and this one seems off too. I just took it and it said my O2 is 83 and HR is 36 bmp - I know my HR is not 36, I took it myself and it's 84 - so if my HR is off, I'm thinking O2 is also. I have had major fatigue today, woke up at 7am, studied a little and then watched the men's luge winter Olympics. By 11:00am I was tired and ended up falling asleep until 4:40pm. I'm still super tired, but I'm currently up watching basketball. I'm not sure if it's just because I've had a rough week or it's because my oxygen is still low. If I'm still feeling tired tomorrow, I'll go to the hospital and get oxygen.

I, too, hope you see improvement from the Rituxan soon and it keeps you in remission. :)

pberggren1
02-09-2014, 10:50 AM
I should look into an oximeter as well. I am usually curious as to what my O2 sats are.

windchime
02-10-2014, 03:04 AM
Thanks, I actually bought another oximeter to keep track of my oxygen levels and this one seems off too. I just took it and it said my O2 is 83 and HR is 36 bmp - I know my HR is not 36, I took it myself and it's 84 - so if my HR is off, I'm thinking O2 is also. I have had major fatigue today, woke up at 7am, studied a little and then watched the men's luge winter Olympics. By 11:00am I was tired and ended up falling asleep until 4:40pm. I'm still super tired, but I'm currently up watching basketball. I'm not sure if it's just because I've had a rough week or it's because my oxygen is still low. If I'm still feeling tired tomorrow, I'll go to the hospital and get oxygen.I, too, hope you see improvement from the Rituxan soon and it keeps you in remission. :)

Rebekah, you just don't seem to have good luck with pulse oximeters. Make sure your hands are warm and still while waiting for the reading. Also don't stick your finger in too far, if it's touching the end it's too far. See if that helps. I love mine and use it frequently when I start panting. Amazing little dodad. :rolleyes1:

Debbie C
02-10-2014, 04:30 AM
Also if you have dark nailpolish on ,that can throw it off.

windchime
02-10-2014, 04:43 AM
Also if you have dark nailpolish on ,that can throw it off.

Thanks Debra I didn't know that. Good info.

rebekah
02-10-2014, 04:58 AM
My goodness, have I had bad luck with oximeters, this was the 3rd one I've tried. Yeah, I took my nail polish off with the previous oximeter thinking my red nail polish could be the problem, but nope. I think it might just be my usually cold little fingers that give me readings that are way off. I'll run them under warm water to help warm my fingers up and that doesn't help. I saw my pcp on Monday and their oximeter didn't get a reading, even the expensive ones don't always work for me. I give up... lol

drz
02-14-2014, 04:32 PM
My O2 levels tend to run in the higher numbers. Last reading was 100 but 97 or 98 is my normal reading. When I had serious bleeding it would get down to low 90's so they started transfering me to ICU when ever it got under 95 cause they knew I was bleeding badly in my lungs. Almost all the machines yield same results from those in clinic or hospital to my drug store one I use at home.