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Post by Kim0808 on Jul 2, 2018 21:42:42 GMT -5
My husband, who is now 60 years old, did his pulmonary function test last week. The result was 15%. Five years ago it was 49%. He has had pneumonia 3 times in the last 5 months. He has been a heavy smoker for 40+years. He is not on O2, his stats are good (they said he is retaining CO2) His blood pressure has been creeping up over the last few months as well as his resting pulse. He has always had pollutants in his workplace (welding, auto body work, machining, carpentry). Amazingly at 15% he is still working every day (I don’t understand how it’s possible) though sometimes he has to sleep in a chair because his mucus is just so bad. All too often he coughs until he gags or vomits. I am sick with fear and worry. What is he looking at time wise? What is our road from here? We only see our Dr next Monday. I am new to this place and am just looking for some guidance and comfort.
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Post by gerald on Jul 2, 2018 23:09:16 GMT -5
Have the prescribed any inhalers for him? Did they say what kind lung problem she has?
He should talk with his doctor about getting the Pnuemona shot and the flu shot.
He needs to take every effort to protect the lung function that he has and try and see if he can improve the lung function that he has now.
There is no preset road, or prediction.
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Post by gnott on Jul 2, 2018 23:56:07 GMT -5
Everything Gerald said.
There are various sites online for simple exercises to help with exhalation (Getting the CO2 out).
www.copdfoundation.org/Learn-More/I-am-a-Person-with-COPD/Breathing-Techniques.aspx
Just a few minutes an hour can bring major improvement.
I have had great success with Mucinex (over the counter supplement) in thinning mucus to make coughs more productive and dramatically decreasing coughing spells.
These are things you can do now while waiting for Monday.
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Post by kim0808 on Jul 3, 2018 6:59:40 GMT -5
I’m sorry. I forgot to mention that yes, he has emphysema. He has been on Ventolin and Advair puffers for quite a few years. They just recently added Atrovent. He does get a flu and pneumonia shot faithfully. When the did his function test last week they recommended that he has a “rescue pack” on order at the pharmacy (prednisone and an antibiotic). He drives a school bus and is constantly exposed to new viruses. He also builds lobster fishing boats where there is a lot of dust and fumes. He is actually there right now!! I find it mind boggling that he can function like this at that level. How is it possible? My husband also mentioned the Mucinrx and wondered if that would help. It’s good to hear that it has helped someone else. He was also given some breathing exercises and has been doing them faithfully as well. I am pleased to hear from someone that has found them very beneficial.
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Post by joany on Jul 3, 2018 8:17:22 GMT -5
So good you're here to receive some suggestions for your husband. I'm impressed regarding what he's able to do. Motivation, depression have a tendency to make matters worse for some of us. So the fact that he can do so much is a plus especially for outlook (critical for keeping us going). There are no time lines - COPD or not. Some doctors do mention longevity from a graph. We are all unique; likewise so is our longevity. You'll learn from this group that you need a bunch of "inputs" starting with healthcare professionals, judicious online research, and us. Maybe "us" should come before online research because there's a lot of garbage out there. We also need to be smart. (I don't know why my mind appears to be working today(smile.)
Hope to see you soon...
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Post by kim0808 on Jul 3, 2018 8:54:12 GMT -5
Thank you so much for your support. Any tips to maximize his function and improve his quality of life are so appreciated.
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Post by skate4life on Jul 3, 2018 9:22:25 GMT -5
Kim, we all appreciate your concern but as you have read above each person is different and there is no end time. Yes, it is truly impressive that your husband is able to do so much physical work. There are people who run marathons with 17% !
If not already done, you might ask the doctor for a Cat Scan for bronchiectasis and a BiPap machine to help him blow off some of the CO2. Has he been checked out by a cardiologist? The heart and lungs have to work together.
As others also mentioned, practicing breathing techniques every day - huff cough, purse lip breathing, etc. Do you have a respiratory nurse available to help him? I hope you have gotten the Rescue Pack of meds as things can happen quickly. Try the Mucinex to see if it helps.
Do keep coming here so we can offer support and learn what the doctor told you and any changes he made. There are lots of drugs now that can help him. If one is not working like you think it should, call your doc and try something else.
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Post by kim0808 on Jul 3, 2018 9:40:37 GMT -5
Thank you skate4life. I think the actual number “15” threw us for a loop. Neither of us were expecting that. We knew there was a decline but nether of us would have ever imagined it was to that point because he is so functional. He has an appointment Monday with our family Dr to review the results and go from there. A cardiologist is definitely on our list as well as a CT. We live in quite a remote area but we do have the COPD clinic and support there. Like you said, people at 17% have run marathons! Truly amazing!
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Post by gnott on Jul 3, 2018 11:26:37 GMT -5
No matter how elaborate the equipment or how highly qualified the technician - ALL results are calculated from a comparison of his numbers against the average (statistical mean) for his group, and also only a snapshot at that moment in time. In other words a best guess. A very educated, well-thought out, darn good best guess, but a guess just the same. The highest dot on a Bell Curve. However, his "dot" may actually be anywhere on that curve. Smile
A young RT once slipped up (probably just out of school) and confidently gave me 6 months based on my numbers. That was some two or three years ago. And while I was feeling very sorry for myself in rehab pedaling on a recumbent bike, many with numbers far less were literally walking rings around me on the indoor track.
Is it best he avoids snotty-nosed kids? Yes. Is it best he avoid unknown fumes and dust? Yes. Why do I say that? It is my best guess. Smile.
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Post by gerald on Jul 3, 2018 23:33:08 GMT -5
Be careful not to get too hung up over the numbers. They work for guidelines and how
things are progressing. They obviously can change one way or the other.
I am not sure if these items have come up or have already be done.
A couple of items you may want to talk to your doctor about
- is the possibility of getting a 24 hour holter monitor test for o2 levels.
That simply is a pulse oximeter they put on and record the blood oxygen
levels for 24 hours. It will let you know that the blood is carrying enough
oxygen to keep the internal organs health. It can also kidn of show the
health of the heart/lung exchange etc.
- if he has not already done the 6min walking test to have one done to
confirm that his levels stay healthy under a bit of walking stress.
Much of what he needs to do is to understand exactly where he stands and to protect
the capacity he has left. So his building boats needs to be done with dust collectors
dust masks etc.
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Post by kim0808 on Jul 3, 2018 23:57:43 GMT -5
Thanks for the advice. He has not done the 6 minute walking test yet. The holter monitor is a good idea. I ordered an SpO2 monitor from the pharmacy last week. Mine was broken and of course the pharmacy had just sold the only one they had. I am really trying to not get hung up on that number. I know it's just a guideline and everyone is different. I am a registered nurse but my area is palliative care and geriatrics. This is not my area of expertise. The drop from 49% to 15% in five years was pretty alarming to me as well. The sad thing is he continues to smoke. Definitely he has cut down but he is so stressed and a lifelong smoker. Everything else he follows perfectly. I really don't think the severity of it is sinking in to him.
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Post by John on Jul 4, 2018 6:37:49 GMT -5
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Post by skate4life on Jul 4, 2018 9:19:16 GMT -5
Kim, sounds like your husband is now going to have a more thorough evaluation of his heart and lung. Good for you to know some of the better testing. He needs to be prepared for the typical lectures about quitting smoking. Can you explain to him that working in such a dusty environment is compounding the insult to his lungs by not wearing a mask? Yes, many can't tolerate the mask. Lots of things to think about and making lifestyle changes too. Can't do it all at once...  expect lots of various emotions now, especially anger as he will be asked to do things he doesn't want to do.... Question - how was it determined that he is a CO2 retainer? Was he hospitalized? Was he rechecked when the pneumonia resolved? CO2 frequently rises during an exacerbation/illness. If he is truly a retainer, he might benefit from as BiPap machine. Re his current medications. Eventually you will learn the lingo and classifications. The Advair is a long acting medication that contains a BetaAgonist (LABA) called salmeterol + a steroid fluticasone. This is a bronchodilator. The Atrovent is a short acting anticholinergic (SAMA) called ipratropium. Its action is to relax the muscles that are around the airways. Ventolin is albuterol, a short acting BetaAgonist (bronchodilator). There is a 'theory' that if a person takes a short acting BetaAgonist like Ventolin within 2 hours of taking a LABA (Advair), the short one locks onto the B site in the lungs, there are reduced sites for the LABA to attach to. The person finds they need more frequent doses of a rescue inhaler (Ventolin) to get through the day. Because there are so many manufacturers of our various medications, and people frequently get confused, it is helpful if you try to learn the generic drug name. Exercise is probably the #1 helpful advice to offer. Perhaps the 2 of you together could go for a walk every day. Plan for a easy step, say 10 min. to start out and 10 min. to get back. It is the sustained exercise with gradual increase in time and distance that will train his muscles to use what oxygen his lungs can carry more efficiently. It may also motivate him to continue to lesson his smoking until he quits. If your community has a Pulmonary Rehabilitation program, do apply as soon as possible as many have long waiting lists. I too was a nurse and I really was at a loss when my copd symptomatic - people assumed I should know all about it just because I was a nurse - big mistake! If you don't understand what your doc says, please! speak up! Sorry if I got carried away - just wanted to shine some light in your darkness and offer support as you embark on the next journey with your husband. |
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Post by kim0808 on Jul 4, 2018 21:26:53 GMT -5
Thank you so much for your insight. I deal with a lot of puffers on a daily basis but there are still many out there that I have not come across. Definitely need to brush up on my knowledge in that area. He had an ABG done roughly 3 weeks ago. I think that was what they were referring to when he went for his function test last week (I was not able to go with him so I'm not sure). He is definitely not a man that asks enough questions either. It can be pretty frustrating sometimes. I can be sure I won't miss another of his appointments. He himself suggested going for walks which is a good sign. He was never a man to "exercise" but always worked hard. We are taking baby steps. I'm happy with any small changes that he is willing to make. I understand how overwhelming it could be to make so many sudden changes. He has also been doing the breathing exercises and finds this really helps to clear the mucus better.
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Post by skate4life on Jul 5, 2018 7:05:21 GMT -5
Kim - great post! Am happy for you both that husband is working to help himself. Keep walking but don't rush it too quickly in time or distance (do one or the other but not both at the same time.) Write down some questions for doc before your appt on Monday but limit it to top four I hope you will give us some progress reports and ask questions here when you need too. We are here for you! Glad you joined us. |
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Post by kim0808 on Jul 7, 2018 17:42:29 GMT -5
You guys have really given me perspective and hope. My husband and I were talking the other night. We are both (excuse the word because I just can’t seem to find the right one) fascinated at how well he functions with only 15% lung capacity. He works 50-60 hours a week, works on the renovations in our own home and helps friends in his spare time. We were discussing just how utterly amazing this is.
He has struggled with lung issues his whole life. He has had two spontaneous pneumothorax, each about 10 years apart. They said it was due to him being very tall and slim and also having a large growth spurt at one point. If you see his lungs on an x-Ray they look like the are wired up at the tops like spiral notebooks. Add on to that the roughly 45 years he has smoked at least a pack a day. I finally got my SpO2 monitor and he is consistently running 98-99. All this to say, his theory is that because he has struggled his whole life with lung issues perhaps his body has kind of “adapted”. Just throwing that out there for some feedback. 😋
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Post by joany on Jul 7, 2018 18:29:04 GMT -5
... He has struggled with lung issues his whole life. He has had two spontaneous pneumothorax, each about 10 years apart. They said it was due to him being very tall and slim and also having a large growth spurt at one point. ...got my SpO2 monitor and he is consistently running 98-99. All this to say, his theory is that because he has struggled his whole life with lung issues perhaps his body has kind of “adapted”. I bet there's some truth in your assessment of his lifetime of lung issues being a factor in his "active" functioning. (He's also had a lifetime of experience as a patient. Really I see that as significant when I think about my own life. How do you spell prescription? I use to go to the drug store just to get a strawberry milk shake(smile)) I'm sure that due to your posts, you've got to be a monumental influence on him. I and several more in this group must feel better just reading your posts!
I like the idea of taking the top four most significant concerns to the doctor's appointment. Not too many so it's overwhelming for everyone. And it forces your husband to evaluate/focus on the most significant questions so explanations aren't rushed.
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Post by gerald on Jul 7, 2018 19:22:17 GMT -5
He has struggled with lung issues his whole life. He has had two spontaneous pneumothorax, each about 10 years apart. They said it was due to him being very tall and slim and also having a large growth spurt at one point. If you see his lungs on an x-Ray they look like the are wired up at the tops like spiral notebooks. Add on to that the roughly 45 years he has smoked at least a pack a day. I finally got my SpO2 monitor and he is consistently running 98-99. All this to say, his theory is that because he has struggled his whole life with lung issues perhaps his body has kind of “adapted”. Just throwing that out there for some feedback. 😋 I suggest you start a list of questions that you want the doctor to answer. They should be able to identify the type of COPD involved, to confirm it is COPD, and whether Asthma is involved as well. If they have not tested is mucous for underlying infections you may want to talk with them about that. His physical fitness and activity will be helping with his endurance and health. His Sp02 numbers and activity levels look very good for his FEV numbers. |
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Post by kim0808 on Jul 8, 2018 7:33:05 GMT -5
He was diagnosed with emphysema 8-9 years ago. They warned him then of the road ahead but he never really took it seriously. He would take his puffers only when he was having trouble and not taking them as prescribed 😡 I kept on telling him but....you know🙄 He says he feels a big difference now that he’s actually taking them as prescribed.
I do like the idea of the “top 4” questions. I had a list of questions for tomorrow’s appointment but I like the idea of the top 4 so it’s not too overwhelming. I also like the idea of the mucus sample. He’s had multiple exasperations this year.
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Post by skate4life on Jul 8, 2018 8:11:03 GMT -5
What the good sats are telling you is that the regular use of his meds as prescribed is working.
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Post by barb7330 on Jul 8, 2018 20:33:45 GMT -5
 Kim... Just to let you know I have severe COPD and on oxygen at night and during day as needed. About the mucinex...I think it's doing a great job for me....Usually take one daily. I also think I have allergies so if need be I will take an allergy pill. Anyway good luck when you see the Dr... 
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Post by John on Jul 8, 2018 20:49:34 GMT -5
"Add on to that the roughly 45 years he has smoked at least a pack a day".  Kim I believe you said he was 60 years old . So being 60 and smoking for 45 years . If he started smoking at 15 that would mean he either just stopped smoking or is still smoking . That would explain the drastic drop in fev1. Kim stopping smoking is the best thing we can do to slow down this disease .Sounds like you both have a good attitude . Does he see a pulmonologist ?  |
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Post by kim0808 on Jul 9, 2018 6:32:37 GMT -5
John, sadly yes he is still smoking. When he was first diagnosed with emphysema years ago they warned him then. Needless to say he didn’t listen. Now that he has found out that his lung capacity is only at 15 he has drastically cut down but has not stopped. He has gone from a pack a day to 5-7 cigarettes a day. He has been on every smoking cessation product over the years but has never completely quit. He says this time he is tapering off to quit. We’ll see.
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Post by John on Jul 9, 2018 7:07:22 GMT -5
Kim I just had a hunch because because that's the only thing that would explain the rapid decline. Unfortunately the rapid decline will will continue the longer he smokes. Please keep in mind that we are not here to tell anyone what to do or what not to do. We just share our experiences , strength and Hope that he keeps an open mind to what has worked for us,will work for him.We are not Drs so always check with your doctor .He is fortunate to have you to care for him .  |
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Post by joany on Jul 9, 2018 7:30:23 GMT -5
Some of us, including me, surprised ourselves by quitting smoking. What I recommend is "Never quit quitting!" I really don't know what was the final straw for me so I can't say "If you did this and that..." I think 1000% is our mind i.e. what we subconsciously keep telling ourselves. For me, no outside force made a difference - I didn't even know I was quitting after years of trying. But I did find external forces annoying so I will not mention this to you again!
Take care...
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Post by gnott on Jul 9, 2018 11:04:16 GMT -5
And for some of us, it never ends.
My first words coming out of the anesthesia from my third angioplasty were, "Anyone got a cigarette?"
I was only partially kidding. Smile. |
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Post by kim0808 on Jul 13, 2018 0:12:09 GMT -5
My husband had his appointment with our family doctor on Monday to review his PFT results.I have to say it was a pretty disheartening day.We have had the same family doctor for about 6 years. He has always been pleasant and for the most part provided good medical care. On Monday he blew through the report very quickly and then proceeded to tell my husband that he had destroyed himself by smoking. He then went on to say that he was not a candidate for a lung transplant (which completely threw my husband because it had never even been mentioned). I asked him to pull his other PFT report to compare the results which was in 2011 and showed an fev1 of 43% and a fev1/fvc ratio of 40%. He is now fev1 15% and the ratio is 38%.
We said that the copd clinic had recommended a longer acting bronchodialator (he is currently on Ventolin, Atrovent and Advair) as well as as rescue pack at the pharmacy of prednisone and clavulin. He recommended Trelegy which is a new product or perhaps Breo (he really was leaning towards Trelegy). Being a nurse, I had just recently had that prescribed for one of my patients but it is not available at the pharmacies here yet. I told him this but he assured me that yes, it was available here. He wrote a prescription for the puffer and said "come back to see me in 3 months". That's it? That's all?
We went directly to the pharmacy with the prescription and........no.....it is not available at the pharmacies here. I called the pharmacist that I deal with at work and asked her how we were able to get the one for our patient. She said that it has to be ordered directly from the manufacturer by the doctor.We then brought the prescription back to the clinic and told the secretary that we would need a different long acting puffer and she said she would give it to the doctor. My husband texted me at work on Tuesday morning and said that the clinic had called and that they had faxed the pharmacy another order........for Ventolin.  ? Could I please pick it up on my way home from work. When I went to the pharmacy they said that they had not even received a fax from the clinic. I told the pharmacist the whole story and said "I should have just taken the Breo!".  She said that if I wanted the Breo she would send a request in that evening for it. God love her we had it the next day. My husband and I did not really discuss any of this for a couple of days. Wednesday evening I asked him how he felt at his appointment on Monday. I told him that I felt as if he was being treated as a "write off" and nothing was offered in the way of follow up, quality of life, education, nutrition etc. My husband said he also felt like that but he wasn't sure if it was because there is a language barrier of sorts (he is a Quebec Frenchman and we live in Nova Scotia, English is definitely not his strong suit). He says he not only struggles sometimes with the English but he said he also does not recognize the "tone" or "affect" often. Our doctor is also from Bangladesh so there is yet another accent in there for him.
All of this to say that we felt as if he was being "blamed" for his condition and written off as a lost cause. It really changed his mood and outlook which was really disheartening to me. He was being so positive and proud of his minimal smoking. I could see the change in him. This morning I called the copd clinic myself and set him up with a respiratory therapist and got him in to the rehab program at the copd clinic which has so much to offer. This seemed to have set him back in the right direction. I can understand all of the emotions that he must be feeling right now but I want to keep things as positive as possible. He is still working every day and enjoying life. I just don't feel that he should have been treated like a "write off". So sad. Sorry for the rant.
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Post by joany on Jul 13, 2018 7:32:24 GMT -5
I'm so sorry about the experience, but I don't think it's unique. Fairly recently, after a few years with the same doctor (primary, specializing in pulmonary - very convenient) at my last appointment with him, I just felt we had "grown" apart (plus I don't know what happened to his 2 assistants who were my "comforters"). Both of us needed a change. So I changed my primary doctor and added a pulmonologist. The pulmonologist is much farther away, but I really needed a different approach - mine and the doctors and even the surroundings. (I realize many patients don't have the option to make a change.)
Good to hear that there were some highlights - hang on. Have a good day!
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Post by John on Jul 14, 2018 6:42:26 GMT -5
Hang in there I I just changed my pulmonologist.My original one retired and and they Placed me with this new one. I have since changed to another one . THe last one had no bedside personaty .. |
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expect lots of various emotions now, especially anger as he will be asked to do things he doesn't want to do.... Question - how was it determined that he is a CO2 retainer? Was he hospitalized? Was he rechecked when the pneumonia resolved? CO2 frequently rises during an exacerbation/illness. If he is truly a retainer, he might benefit from as BiPap machine.
Kim...
Kim 
? Could I please pick it up on my way home from work. When I went to the pharmacy they said that they had not even received a fax from the clinic. I told the pharmacist the whole story and said "I should have just taken the Breo!". 
She said that if I wanted the Breo she would send a request in that evening for it. God love her we had it the next day.