Ordered on Oxygen full time, I think doctor is WRONG!

[Tiz]

I have advanced emphysema.CT shows 21.1mm mass.Broncoscopy shows nothing..Dr says looks like squamous cell.Spirometry FEV1 32% pred.I use no inhalers or meds.I do smoke.Spirometry says severe diffusion defect,some restriction (small ribcage),says maybe hypoxemia.Dr said no to exercise test.Didn't check pulse oxy in office.Said no to fungus test tho we found huge amounts of mold under wall panelling (after 3 months of constant asthma-like attacks mold was discovered & cleaned up 5 mo ago..breathing attacks way less often,less severe now).Dr ordered overnight home pulse oximetry.No one said 'don't smoke during test',no one said 'don't move around a lot'.No one asked about my chronic sinus probs & deviated septum.The hand w the oxi probe was on the arm  I sleep on all night,mornings arm is stiff,fingers are stiff,taped on probe hurt my finger,I pulled at probe often in the night.I barely slept.I cried during the test.I tossed all night.I got up & smoked.I sat up often.I have fairly low blood pressure,I read that can affect the test.A week after the test WITH NO DISCUSSION MY DOCTOR SENT MEDICAL SUPPLY PEOPLE WHO SAID HE ORDERED ME ON 2L OXYGEN,CONTINUOUS,24-7.Oximetry said 87.5% for 90% of the night,no exclusions for artefact.I emailed doc & asked him to explain,he didn't answer.I didn't call him cuz he never LISTENS to me.No inhalers yet can garden,walk up the block,get around my home easily tho sometimes still have mild asthma-like attacks tho less than when mold was in house.I HATE the 02 but afraid to NOT sleep w it NOW,am NOT using it days. How accurate is pulse oximetry?

[Tiz]

Hi Happy, thank you for your reply. I answered a lot of your questions in the email I just wrote to NJC (above).  

As far as I know there are no problems with my heart, I've never had tests done on it but doctors listen to it, they have always said it is "fine".  I don't have blue lips or fingertips, my legs don't swell (tho sometimes my feet tingle). I also don't have sleep apnea. I do have advanced bullous emphysema.

As I said above, "quality of life" for me is to be able to play on my computer, take photos, work in my gardens. I can still sing fairly well, on "good" days...some days are better than others. I'm not a physically active woman, even as I child I was never very active and, tho of course I'd love to have the lung function I had 10 years ago (or even the FEV1 44% pred I had last year before the mold got me), I'm not at all miserable with my quality of life.  This last spirometry was FEV1 32% pred..up from 29% 5 months ago..I know that doesn't count as an improvement but it can take a year to recover from chronic mold exposure and I'm still hoping I can come up some more.  

In order for my insurance company to pay for the oxygen the doctor was supposed to do a daytime "at rest" test, he didn't, but the other times I've had it it's always been over 90%, 97% I think but I don't really remember.  The last time I had one was around 5 months ago, it was ok then.

About the mass, I talked about it in the post to NJC.  I have pretty much refused the surgery at this point anyway, I may be a fool but I still think it's as likely to be a fungal infection as a cancer...Iowa is a good place to get a fungus infection and I've fed birds for years and swept up their droppings, gardened in the soil by the bird patio..and have two friends who are now blind from histoplasmosis.  My sister has a lung nodule that turned out to be MAC infection...they were positive it was cancer tho.  No one in my family has ever had lung cancer and tho I know I'm at very high risk for it, genetics do count.  I just don't believe I'll come out of a thoractomy/lobectomy in as good a shape as I am now, the surgeon wasn't at all optimistic.  I would have done the VATS and resection...but I can't make myself do the other, not yet..my sister's nodule grew to 3.5Cm, and then it stopped..the pulmo said squamous cell is very slow to grow and spread, I just have to give it another 6 months at least, re-scan and face that horrible decision again then. If I'm going to die soon then I want to do it sitting here at my computer, I'm happy here.

Don't apologize for your long response, I appreciate your warmth and advice...and, as you can tell...I don't know what the word "brief" means :S.  

Have a good day Happy :D........................Tiz.

[Tiz]

Hi NJC, thanks for your help.  I've researched this oxygen mess all week, I no longer believe that overnight pulse oximetry is valid and I will have it redone, by someone other than the Medical Supply people who supplied the oxygen. I found my insurance won't even pay for it if a daytime oximetry wasn't also done...none was done.  I have not had an ABG but the spirometer guy said, I THINK,that my severe diffusion defect of 31% pred meant that I am a Co2 retainer.   I didn't know what that was but the oxygen made me feel so sick..before I was prescribed the oxygen for sleep I almost NEVER had morning headaches, I almost NEVER had nausea,I don't think I felt confused about things..but I used the oxygen for 5 nights, each very early morning I woke up feeling frightened with a horrible headache, nausea, gas, bloating, trembling hands, confusion and extream anxiety...and it lasted, on and off, all thru each of the five days following use of oxygen at night (I just did not use it in the daytime at all).  I asked the Medical Supply People if the oxygen could make me sick, they said it couldn't, that 2 L was fine. But after 5 nights I just couldn't make myself use it again..and the headaches stopped, along with all the other sypmtoms I mentioned.  Before they put me on oxygen mornings were the times I felt BEST but I heard when you need nighttime o2 you would have the headaches, fatigue and confusion. I believe I was fine before they gave me the oxygen and I believe the oxygen made me sick all those days and nights.  I stopped using it but I'm afraid that if I'm wrong I might just not wake up some morning.  

I am often told I need to be on inhalers but I'm also told I need to strive for "quality of life"..my sister also has emphysema, she has used all the meds they have to offer, for 20 years...yes, she can walk a little faster than I do but she also has chronic thrush, often has lung infections, is often on antibiotics, has IBS and Gerd, has severe muscle cramps, arthritis and suspected osteroporosis now..I have none of those things. I have never been a physically active woman and have no desire to run a marathon, I love gardening and can do that for hours without breathing hard, I love my computer, I have no trouble getting around my home (now that the mold is gone and the asthma-like attacks happen only very rarely.).  I'm trying to say that for my own personal "quality of life" it is one where I can do the things I enjoy and not have all the side effects of the meds.  I do pursed lip breathing and abdominal breathing and am working hard on a better diet.

Thank you for saying I might have asthma caused by the mold, I am allergic to mold and I believed the severe breathing attacks were caused by the mold..my pulmonologist told me they were panic attacks.  Funny how the "panic" attacks stopped (mostly)after the mold was cleaned up.  

I did see a pulmonologist about the lung nodule, she has been following it for a year. I had agreed to a VATS and re-section but when the surgeon decided we'd do a thoractomy and upper lobectomy I was horrified, I did not believe I could come out of that major of a surgery and not be in worse shape I'm already in.  But I was frightened into agreeing to it...and then the surgeon decided I was a "marginal candidate" and said I had to get on a regular regime of inhalers, do rehab and, of course, stop smoking or he wouldn't do the surgery.  

I absolutely understand that smoking has nearly destroyed my lungs and will continue to do so but I am doing the best that I can do at this time, that's all I can say.

Three weeks ago, after my last CT Scan the pulmonologist called and said the nodule is still growing and told me it "acts" like squamous cell and said that is a very slow to grow, slow to spread cancer and since you'll be dead in 5 years from the emphysema the cancer will never get large enough to cause you any symptoms.  I was so shocked all I said was "are you saying I'll be dead in 5 years from the EMPHYSEMA??"...she just said nothing for a long time and then said "well, if you get pneumonia you don't have the reserves to fight it."  I got off the phone in a state of shock, then called her office, crying, and asked them to have her call me and explain WHY she thought that..she has never called me back.

I talked to the person who would have done a needle biopsy on me, after reading my CT Scan he said I had a 30-40% of pneumothorax.  I told him I didn't want to take that high of a risk (since, after all, I was told I'd be dead in 5 years anyway.)

Then I did the spirometry on Sept 22, when the spirometer guy explained it to me he said I might have hypoxemia and his report said I might try an exercise test to see.  But my MD said, no, we don't need to do an exercise test, I was fine. So I left but I had heard if I have hypoxemia I could die in my sleep and I was scared and asked my MD for the overnight pulse oximetry...now I've been told I'm going to die if I don't use that oxygen 24-7 and I HATE it, they all swear it'll make me feel BETTER but it doesn't, it makes me sick.

I'll admit I've had 3 weeks of major stress but I don't think it's "all in my mind" that the oxygen is making me sick.  I don't think my MD knows what he's doing and I have read that home oxygen therapy can not be decided by one overnight oximetry, and I've read that they NEED to know if I'm a Co2 retainer and they need to monitor that oxygen carefully til they get it right.  No one monitored me, they brought me the equipment, showed me how to use it and left.  

The question I most need answered in this very long email is... is it true that if I DO die in my sleep it would be during an exacerbation and not while I'm "stable"?  Other than the asthma-like attacks I've had one case of acute bronchitis that lasted 6 weeks, in the last 2 years.  I took antibiotics then, that's the first time I'd taken them in 5 or 6 years.  The only other meds I take is aspirin occassionally.  

Oh..I realized a couple months ago that I drink so much milk and eat so many tums that I was getting around 4000mg calcium per day and only 400mg magnesium, if that much...and I did that for 10 years.  My MD wouldn't order a blood test to check my levels for those things, he said I could get all I need from my diet.  I weight 103 pounds, does he think I look like I have a GOOD diet.  Since I stopped nearly all the milk and tums and started on a magnesium supplement nearly ALL of the year's long stomach cramps, bloating and pain has stopped.  

Oh...I'm writing too much, I'm sorry...but what do you think of "pseudomasses"??  I read that people with bullous emphysema can have what appears to be cancer but it's a mass caused by bullae squeezing the lung tissue.  I have a giant bullae directly above this lung nodule...the nodule is triangle shaped (it looks like an A) and it's spiculated, no calcium..things the article said a pseudomass can look like.  Oh, you asked if the nodule has spread to other areas, no, it appears to be a solitary nodule with no sign of spread.

I'm sorry this is so long...I really do appreciate you answering my last post.  Thank you......................Tiz.

[National Jewish]

Oximetry is usually deemed to be accurate to plus or minus 2% to 3%.  Given your description of the nocturnal study, it may not be valid.  That could be clarified by having it repeated.

The negative bronchoscopy does not rule out cancer.  Since the nature of the 21.1 mm mass remains unknown after having a CT scan and bronchoscopy, it should probably be removed.  You should request a second opinion from a lung specialist.

Sounds like you may have both asthma and emphysema.  The asthma may have been related in part to the mold you discovered and had cleaned up.  Also, you should be on one or more inhalers such as Advair

[HappyNeige]

Sounds like a frustrating situation.  I am sorry you have to go through this.  I hope you find the following helpful.

1. 'Adequate' oxygen therapy, along with smoking cessation are the only two interventions that prolong life in patients with COPD (aka emphysema).  The inhalers and rehab program will only make you feel better but they don't make you live longer.  Doctors still order these treatments because they have been shown to improve quality of life.

2. To define 'adequate oxygen treatment', the target of oxygen therapy depends on whether you have developed heart failure or pulmonary hypertension as the results of long-term emphysema.  In the presence of heart failure (leg swelling, engorged neck vein or echocardiogram showing insufficient pumping action of the heart) or pulmonary hypertension (echocardiogram showing high blood pressure in the lung or electrocardiogram showing enlarged right ventricle), SaO2 should be kept above or equal to 89%.  If you don't have heart failure or pulmonary hypertension, the target is >= 88%.  Based on your nighttime oxygen study (assuming that there are not a lot of 'noise' during the study) you should have oxygen treatment at least during the night.  You doctor should make sure that the 2 L/m he prescribed is enough and often a repeat nighttime oxygen study with oxygen treatment is needed.  Also, a resting SaO2 and exertional SaO2 should be measured.  Often, if your resting SaO2 is already < 88%, with exertion, you will need more oxygen flow.  It is always a good idea to make sure when oxygen is needed and how much flow you'll need in certain situations, i.e. sleep, exercise.  

3. To elaborate more on the need for oxygen at night, there are two main groups of patients who have decreased oxygen level during sleep.  First is the group with advanced lung disease.  These patients often have inadequate oxygen during the day as well and should have oxygen treatment according to their degree of hypoxemia (see above).  The second group is the people who only have nighttime decrease in oxygen and do fine during the day and even during exercise.  Sleep apnea and congestive heart failure are a few examples.  These people often need additional treatments, i.e. CPAP for sleep apnea and specific treatments for heart failure, and oxygen at night alone may not be enough.  My guess is that you belong to the first group and again, should have SaO2 measurement at rest and with exercise to see how much oxygen you really need to benefit from it.  (Remember that the life-prolonging benefit only shows if you have 'adequate' treatment.)

4. About the lung mass, was there any mentioning about lymph gland swelling in the chest or involvement of the liver or adrenal glands on the CT?  If there only one mass in the chest, a fair approach is to get a cardiopulmonary exercise test to see if you are a candidate for resective surgery of the mass.  The cardiopulmonary exercise test measures your ability to take up oxygen in time of stress (exercise) and it can predict how well you would do during/afer the surgery.  Your FEV1 of 32% is not encouraging but until you have completed the assessment with an exercise test, I don't think it is fair to deny you a chance to have a definitive management for a lung mass, especially when the doctor thinks that it could be a squamous cell cancer.

Sorry for the long response.  I hope this helps.

Good luck,
HappyNeige...