What's next?

[cz4806]

3 yrs. ago my wife was diagnosed with COPD and put on O2 part time. Within 3 mo. she was on 24/7 and is now at 3liters. She was told that she was at that time told she was a prime candidate for a transplant which she refused. She has also refused suggested in patient steroid treatments. This yr. at her pulmonologist appointment she was told she is stage 4 emphysema. She does not try to walk more to help her COPD. She says she will but we know she won't. 2 yrs. ago her pulse ox was 97 walking and this yr. it was 89 at rest. Her last lung capacity test was 18% and she won't have another because it's too stressful for her. She is house bound and won't leave the house except for Dr. appointments. We were told she could have resp. failure that would require a ventilator, which she won't have. We both have DNR or file. What do I look for next? How does her decline fit into the normal rate? What is your best guess on her life expectancy?  I know it's all guess work as far as that goes even her Dr. says she could go for quite a while yet but I think he said that for her benefit. I need to know about how much time I have to get her affairs ready and what I can expect next as the disease progresses.

[David Tinkelman, M.D.]

True dependency on oxygen is usually, but not always, associated with advanced COPD.  It is unclear what exactly measured when “her last lung capacity test was 18%” but a value of 18% of almost any valid measure of lung function, especially the forced vital capacity (FVC), the volume of air exhaled in one second (from full inspiration) called the FEV1 and the ratio of the two FEV1/FVC, is indicative of severe COPD.  For a long time it was assumed that there was a good correlation between measured pulmonary function (tests) and survival time/mortality but studies in recent years suggest a strong correlation between predicted length of survival and severity of shortness of breath.  The severity of shortness of breath worsens over time but also worsens secondary to physical inactivity.  

I am sorry but I cannot provide a “best guess” of your wife’s life expectancy, but the information you have provided suggests that her prognosis is poor; it also hints at unusually rapid progression.  This could be on the basis of accelerated loss of lung function, reduced oxygen levels out of proportion to measured lung function, or even to another condition, not directly related to COPD, a comorbid condition, such as heart disease.  Rapid progression of COPD is,not rarely, associated with a genetic abnormality called alpha-1 anti-trypsin deficiency.  You might want to ask her doctor about that.  With severe COPD, a person is at increased risk, not only from the loss of lung function, but also from complications associated with COPD, such as pneumonia or a severe exacerbation.

You should pose your questions to her wife’s pulmonologist and, if the answers do not satisfy you, consider seeking a 2nd opinion from another pulmonary specialist.  You should also find out if she is still a candidate for lung transplantation.  Finally, you indicate that she definitely does not want to be on a ventilator.  You should reaffirm this with her physicians and be prepared, when the question of ventilatory support arises, to take whatever action is necessary to ensure that her wishes are respected.

Good luck

[cz4806]

She is on steroids, 2 of them. One nebulizer and one emergency she uses as she needs. She was on Advair at the start of her treatment but that was stopped a long time ago. She uses as is on Ventolin, Asmanex and Xopenex. The only time she has any real bad anxiety is any time she has to leave the house. She says it takes her days to work herself up to do it. She doesn't became fatigued as much as she has a very difficult and lenghtly time to slow her breathing down and to relax. It seems like it takes longer for that to happen but it really hard to tell being with her all the time. She doesn't have any choking at all but she did suffer from pneumonia about 20 or so yrs.ago and they never did find out what type. Had the lab working on her 24 hrs. a day, samples were sent to Mayo and Center For Disease Control and never heard what, if anything, they found. It clesred up and she hasn't had trouble until now.

Thank you for taking the time to reply to my post, it was very thoughtful of you and it helped me look for something that might be also causing her more difficulty. Hope you are stable and don't get to my wifes stage. I wish you the best of luck and all the strength your husband needs.

[allmymarbles]

I understand what you are going through and I understand your wife. I have COPD. It is moderate at this point and I am not on oxygen. First let me say that you are a fine husband for the care you take of your wife. My husband is also fine, although I don't need as much care.

Now I will bring up a problem I had, with the thought that it might be your wife's problem as well. I was on inhaled steroids for some years. Over time I developed sever bronchitis, which seemed to be my worst problem. Then I became excessively fatigued - so fatigued that at times I could not walk across the room. I developed severe choking fits and I honestly thought I would not live through the past winter. I suffered anxiety that periodically led to panic attacks. I figured that at some point I would choke to death. Then I decided to take matters into my own hands.

I am a non-fiction writer/editor. My work entails a lot of research so I decided to research my symptoms. The conclusion I came to was that it was not COPD, but Adviar (an inhaled steroid) that was killing me. It also seemed that the steroid had affected my adrenal glands and that I was suffering adrenal fatigue. I had periods of anxiety that often resulted in panic attacks.

I went to my favorite doctor, not my HMO lung doctor (whom I really don't like) and he tested me for adrenal function. It looked like I was right on target. I stopped the Advair and he replaced it with natural anti-inflammatories and mucolytics. My lung health improved immediately. My severe bronchitis became mild. No more choking to death. My doctor also treated me for adrenal fatigue. I still get waves of it, but they are more mild. No more panic attacks. The only medications I take are nebulized Duoneb (albuterol and iprotropium) and an over-the-counter anti-histamine. My husband doesn't look so worried anymore.

If your wife is on inhaled steroids you may want to investigate if this is adding to her problem. Best of luck.

[sk8flo]

I am so sorry to read your update.  Have you been in touch with any of the lung associations in your area?  Sometimes people are more willing to talk with a stranger than someone close to them.  They are most familiar with all the reasons copd patients fear the future and know the questions to ask to explore her denial.  They may also be able to help you deal with your own feelings.  You might ask her doctor about Hospice.  I also wonder if she needs a change in her antidepressant.  Anxiety and fear are so common in copd patients when they are declining, but there are many ways to lesson these feelings.

Are you working and away from home during the day?  You said that she says she can do what needs to be done during the day when you aren't there.  Does she?  Has she been doing the housework, cooking, laundry?  That may be exhausting her.  

Instead of going for a ride, perhaps just taking a brief walk in the yard or outside to sit in a chair to rest awhile would help.  Those small steps add up!

I truly feel your pain and frustration and hope you can find some relief.  You obviously do care very much about your wife.

[cz4806]

She has been seeing our primary care Dr. for about 5 yrs and her specialist for 3. She is taking an anti-depressant now and it is also for her extreme anxiety which she has whenever she has to leave the house. At the outset she did say she had her reasons for refusing the transplants and told me that she won't say what they are. Her mood seems OK when I am here but I have no idea what she is like when I'm not. I have brought up repeatedly that it might be a good idea to have someone come in a few days a week to be here and help with whatever she needs and to help take care of her. She has steadfastly refused to consider it and just asks "well, what would she do? I care do what I need during the day when you're not here". I have tried everything I can think of to get her more active, just going for a drive but she is so afraid of running out of oxygen that she gets near panicky when she thinks about it. Only time she is out of the house is when she has her annual check-ups, that's it. I have honestly given up trying to help her improve and be more active. She will do what she wants and doesn't seem to care.

[sk8flo]

Do you have a primary care doctor who knows your wife well?  Depression is very common with COPD.  Loss of ability to do things she once did can be overwhelming and it is not unusual for patients to feel they are just waiting to die.  Nor it is unusual for patients to refuse all treatments - for a variety of reasons, which sadly doctors don't explore with the patient.  Have you tried to learn what her reasons are for refusing treatment?  Perhaps she would be willing to try some antidepressant in the meantime.  

[cz4806]

Thank you for your answer. I know that there is no best guess as to my wife's life expectancy but I had to ask. I really appreciate your taking the time to answer my question. She has been told again that she is a candidate for transplants but has again refused. Her activity level consists of bedroom to kitchen to bathroom and living room. She watches TV all day and hasn't shown any interest in walking more and being more active from the outset. Her weight has ballooned because of that. She is unable to walk from the bathroom to the couch in the living room, about 35 ft, without becoming short of breath and has to stop at the back of the couch to rest and recover before she will continue to the front and sit down. I will ask her pulmonologist about the test he was talking about. He is straight forward with his answers and I don't believe he is holding back anything. I knew she was in poor condition when she went from part time oxygen to 24/7 in less then 4 months. Thank you for your time and the additional information.