COPD

[sssoul]

hello ... Davy9's invitation to join this forum (thank you!) was really timely for me: i'm just now going through the process of having my COPD diagnosed. i'm very confused and anxious and i hope i can ask for help understanding what this all means.

the background:

1] i'm a 54-year-old woman; i'm American but i live in Poland, where the health care system is ... well, let's leave it at: some of the possibilities that might exist elsewhere aren't available here, or might be available only through private-care channels, which i can't readily afford.

2] i smoked for 38 years (one to two packs a day) but i stopped in november 2008. (www.quitnet.com was hugely helpful in that, so ... thank you quitnet!)

3] in 2001 i was hospitalized with acute respiratory failure that was attributed to repeated bouts of aspiration pneumonia (caused by Zenker's diverticulum, which has since been treated surgically). i was told then that i have irreversible lung damage (as in COPD although that's not the term they used) and that continuing to smoke was definitely not smart, but ... well, as noted above it took me until last november to actually stop.

4] i haven't been treated by a pulmonologist since that incident – since i was still smoking, there didn't seem to be any point to seeking that kind of help. i did get short of breath, of course, but was mostly functioning okay; i had a prescription for 150mg Theophylline tablets that i took sometimes, but not very regularly.

5] i live on the 5th floor of a building with no elevator, which certainly gives one something to think about. since that incident in 2001 i've increasingly needed to stop for breath on the way up; since last summer i most often have to stop twice, especially if i'm lugging groceries or something. i was feeling pretty lousy in other ways too – tiredness, aching lungs, sinus headaches, etc – all of which contributed to my choice to stop smoking, finally.

the current events:

i feel better in some ways since i stopped smoking – i'm not coughing and wheezing, my sinusses are happier, and on some days i seem to be less short of breath – and i asked for a referral to a pulmonologist just because i figured it would be good to get an assessment of my COPD now that i no longer smoke.

i had the appointment with the pulmonologist on monday evening. i was expecting to hear "COPD", but when he said it's stage 4 that really stunned me. he ordered some more tests and i'm supposed to see him again on february 23rd, which feels awfully far away: i'm having panic attacks, and feeling a major need for more information about what this means and what i need to expect. i spent most of yesterday having the tests done and looking for someone who can give me more detailed information and counselling, but this health-care system isn't set up for that.

so here i am, hoping very much that you can give me some idea of how to understand these test results and what kind of impact this is all going to have on my life.

the tests so far (apologies if the translations from Polish are weird-sounding – i'm not familiar with the terminology):

the pulse oximeter reading: Sa02 92%

the spirometry readings:
EVC: "base" 2.30 ... %pr 75
FEV1: "base" 0.77 ... %pr 29
FVC: "base" 1.34 ... %pr 43
FEV1/FVC: "base" 57.5 ... %pr 72
MEF75: "base" 0.76 ... %pr 13
MEF50: "base" 0.51 ... %pr 13
MEF25: "base" 0.32 ... %pr 21

the main capillary blood gas readings: pH 7.394 ... pC02 40.6 mmHg ... p02 51.8 mmHg

and my latest chest x-ray (january 2009) showed scarring in both lungs, which ... well, where did that come from?? there was nothing like that in my 2007 x-rays ...

the doctor prescribed Spiriva and Oxis inhalers but told me not to start using them until the next appointment; he changed my Theophylline prescription to a 300 mg dose. he said my lungs seem to be functioning fairly well despite the degree of damage, which ... well, i'm glad if something sounds good in all this, but it also confuses me.

thanks so very much for any insights you could offer into what this all means and what i can expect.

soul

[Davy9]

Hello and welcome... Davy9 here....

In looking at the pulmonary function data you do demonstrate a significant obstructive component. They had you take in a maximal breath and then blast it out as fast as possible and completely. That's a Forced Vital Capacity spirometry study. The data reflects that the air comes out slower and in less volume than normals for your age, gender, etc.... That reflects the obstruction.

I assume what they call a 'capillary blood gas' is akin to what we call an 'arterial blood gas'. It shows that you are not retaining CO2 but are low on O2. You have a normal pH, a normal CO2 and a low O2.

The scarring they note is probably a consequence of your aspiration lung infections.


Some thoughts:

1. They did not conduct the spirometry before and after the use of any medications
that may have improved your lung functions. That is usually done to determine how much reversibility there is when using bronchodilator medications. It helps in prescribing those.

2. Given the presence of the scarring and the obstruction you would benefit from a more comprehensive study of the lungs called body plethysmography or a 'body box' study. In that study they place you inside a closed chamber and have you conduct the same sort of breathing tests. But they will be able to assess your total lung volume, how much remains inside your lungs after full exhalation and more. That provides a clearer picture of your diagnosis.

3. They also need to measure how your oxygen level varies under exercise load. It is low at rest and you experience shortness of breath on exertion so it probably drops with exercise. Just wearing that pulse oximeter and doing some walking will accomplish that.

4. The drug theophyline has been shown to have a narrow index of therapeutic usage. In other words the dose has to maintain blood levels with a narrow range for the medication to work. If the level is not met it doesn't work well and too high it won't work well and can make things worse. It is not used much here anymore.

5. It seems that you should be using supplemental oxygen. Low oxygen levels put a strain on your heart and drives other compensatory measures you want to avoid. It is easy to supplement and will help with your dyspnea. It also should be used while you sleep as we all breath shallow while asleep.

6. Your lung function is limited but you are in fairly good physical condition because of your exertional normal daily routine. That is good.

7. You should also get your heart health checked as the heart is central to any bodily function and often is intrelated to lung problems.


What now? Well you need to idealize your lung function, minimize further lung problems and sustain your physical conditioning. Get your medications tailored to their best usage. Use supplemental oxygen to further your exercise range and to end hypoxic insults to the body. Avoid any illness. Stay away from sick people. Get your flu shots. Keep the air you breath warm (wear a snood). Stay away from fumes, smoke, dust and anything that can irritate your lungs or airways. If you have any allergies avoid stuff you're allergic to. Take care of yourself but do not baby yourself. That exercise is good for you. Not too much, not too little. Roughly speaking your aim is to achieve your maximal physical condition within your limits. You seem to be doing this already.

The studies they did not do will help them understand your situation more clearly. They do have enough to treat. But the more they know the better they can treat and the better they can evaluate how effective their treatment is and the progress of the situation.

I do not know how medical care is dispensed in Poland. I hope these measures are not outside of what they can offer. The sooner you going with this stuff the better. Feel free to ask questions and I'll do my best to get you answers.

Davy9

[sssoul]

thank you Davy9 - that's all very helpful, and you're very kind to take an interest.

can you tell me more about the need for supplemental oxygen? i'm not sure i understand what you mean: oxygen tanks and masks and so on? all the time?? are there alternatives that can be tried? and/or what are the "hypoxic insults" you mean?

and: do you know of any websites where i could find specific instructions for good exercises i could be doing? because i can't locate any COPD rehab/counselling services here - it seems this health-care system simply doesn't offer anything like that.

thank you again for taking an interest.

soul

[Davy9]

About oxygen. The tension of oxygen shown in your blood gas is 52 mmHg which is low. But the O2 saturation shown by your pulse oximeter is at 92% and that sounds pretty high.

If you increase your O2 tension to say 80 mmHg the saturation would increase only 3 or 4% to around 96%, but you would be carrying a lot more oxygen.

If the O2 tensions should drop by just a small amount say to 47mmHg the saturation would fall off dramatically perhaps as low as 70%.

Your O2 tension level at rest is at a point where a small decrease will really impact how much oxygen the body gets. Anything that lowers that O2 tension further means you will carry a lot less oxygen for the body to use.

Room air is comprised of 21% oxygen. That is not adequate for your lungs any longer. They need additional oxygen to get more oxygen into the body. That means the O2 tanks and the use of a nasal cannula. Their are several devices available for home oxygen usage including oxygen concentrators which take room air and concentrate the oxygen. There are the tanks and liquid oxygen storage systems.

When the body is faced with low oxygen (hypoxia) it reacts in ways to try and get more oxygen. The blood vessels in the lungs constrict trying to best match areas that have the best gas exchange. But when the best gas exchange is generally poor they all constrict worsening the situation and putting a huge strain on the right ventricle of the heart. The amount of red cells in the blood can rise in an effort to pick up and deliver more oxygen to the body. That increase the bloods viscosity which, in-turn, increases the hearts workload and so on.

Chronically low oxygen has a domino effect in the body but it really nails the heart in particular. All of that is prevented (and is somewhat correctible) by using supplemental oxygen. This is why I suggest that you get you heart checked and why they should check your O2 saturation under workload. They need to learn the health status of your heart and see how much you desaturate under load and how much supplemental oxygen you need to control that.

As to pulmonary rehabilitation. You already enjoy a good level of physical function. Using the additional O2 will improve that and you should enhance your activity level as tolerated. You would benefit from some breathing techniques. Research 'pursed lip' breathing and that will give you the best tip. They should have Physical Therapists or some similar discipline there. They should be able to provide you with some additional input in this regard.

I suspect that this all sounds complex and daunting. In many ways it is and I hope my explanations are clear enough for you to digest. In other ways it isn't. On the surface you are going to be instituting a care program tailored to improve your breathing, physical capabilities and lifestyle changes to maintain your health at its peak.

[sssoul]

thank you again, Davy9 - i'm working on digesting all this. your responses are very helpful - it's just that this is all so new to me, and i'm still in some shock over the whole scenario. i thought i was going to the pulmonologist just for a routine sort of check-up subsequent to ceasing smoking, and simply didn't expect to hear i'm in dire need of major changes like oxygen tanks and what-all.

if i'm not wearing out your generous patience with my questions ... you wrote: "Anything that lowers that O2 tension further ... " what sort of thing would lower it?

and: are there any particular forms of exercise that would help improve my condition? if there are resources on line where i could find specific exercises that would be great, because as i noted earlier it seems like respiratory rehab programs aren't part of what the health-care system here offers - at least i haven't yet located anyone who seems to know what i'm inquiring about.

thanks so much yet again for your wonderful patience and responsiveness.

soul

[sssoul]

er ... sorry, Davy9 - i don't mean to be repeating the same question about exercises over and over!
i've read some about diaphragmic breathing and pursed-lip breathing but i was hoping to learn about some calisthenic-type exercises that would be particularly helpful in my respiratory situation. if that's something a regular physiotherapist should be able to advise me on, i'll try to find one to ask.

thanks and sorry again for repeating myself. like i said, i'm still stunned by all this but i will get my head around it one of these days!

soul

[Davy9]

Exertion will lower you oxygen levels. While at rest your body uses a certain amount of oxygen from the blood. The blood then returns to the lungs and is reoxygenated. When you exercise your body uses more oxygen. The blood returns to the lungs with less oxygen in it and is reoxygenated to the same degree. But because it goes in lower in oxygen it comes away from the lungs with lower oxygen tensions. It then goes out to the body with lower oxygen tensions and if you are still exerting yourself you remove even more oxygen. The O2 level spirals downward until you are so short of breath you have to stop, rest and recuperate.

When we all go to sleep we breath shallower. When you breath shallower the level of oxygen drops because you are under ventilating. If I held my breath I would also lose oxygen. It is just magnified in your situation because of the oxygen uptake limitation.

Those are the 2 main ways your O2 would drop but they are 2 things you do quite frequently, like every day. It is quite likely that you desaturate with rigorous walking let alone stair climbing.

Respiratory Rehabilitation is a multidisciplinary type of a program. Much of what you can get from it comes from Physical Therapy which they should have in your area. Physical Therapists are used for a wide range of rehab and should be available where you live. Much of what people get from Resp Rehab you have already accomplished. It is very hard to motivate people to become active and increase their level of activity. You have and you do meet a high level of activity. PT can help you extend that especially if you employ supplemental oxygen. You should be able to find some publications on the subject as well. See if you can contact the Physical Therapy department at a hospital and discuss this with them.

[sssoul]

hello again - i just got out of the hospital and wanted to follow up here in case it's of interest or educational value.

the assorted tests done at the hospital led to the doctors assessing my COPD as "stage 2B"; i am not in need of supplemental oxygen. one source of confusion was the "capillary blood gas" reading - when they take the blood from my finger, the oxygen level looks direly low because my the circulation in my hands and feet happens to be extremely bad; when they checked the blood from an artery, the oxygen level is great. obviously i do have considerable obstruction but the "before and after" spirometry readings showed that bronchodilators can help me a lot; and my exertion test results were also a lot better than might be expected from the results i listed here earlier.

after reading what those first test results appeared to mean, i endured some dreadful panic attacks. so grateful as i am for the good information Davy9 provided (thank you!), i hope everyone reading this forum will understand that there are limits to what can be deduced without seeing the individual and the larger picture.

sssoul

[Davy9]

That is good news. Having a full study done helps you understand your status and how best to manage it. Now you understand how much reversal you get with your medications and it does sound substantial. I am glad you do not need to use O2. We use capillary gases here but more commonly in neonatal care.

[little raven]

Glad to hear I am not the only one confused and having anxiety attacks. I had flu tnis last January and also quit smoking after more than 40 years. I have been having respiratory problems ever since. Just don't know what to do most of the time. But we will keep on trying to learn and get better won't we. Have a Dr. appointment this morning. Hope to get more information. Wish I had info that would help you but stay confused myself. I am 68 year old female living in Texas. It must be ver7y scary in another country. Hope you do much better.