As I sat in the doctor’s office this past Monday, the questions came at me fast and furious:
Have you ever smoked?
Were you ever exposed to a lot of second-hand smoke?
Have you been exposed to work-related chemicals or occupational or environmental pollutants?
Have you ever had a positive blood test for the AAT gene?
Although the pulmonologist’s face was different, the questions were the same ones I have been asked by various pulmonologists in the past. They’ve all seemed to be both intrigued and frustrated by a patient who doesn’t fit any of their criteria for COPD; in fact, I’ve seen them finally stop their barrage of questions long enough to say to me, “Well, then WHY in the world do you have COPD?”
And I want to say, “Well, isn’t that the question I should be asking YOU?”
It seems that I fit into a tiny percentage of people who have COPD but shouldn’t. And since COPD is the third leading cause of death in America and since is it is a disease that gets worse over time for which there is no cure—well, it’s not a disease I am overly thrilled to have.
And I’m also not thrilled about the fact that after a couple years of stability, this past appointment revealed that there has been a decrease in my lung function since last year’s appointment.
I am having more frequently occurring episodes of “air hunger” which basically means that I have to take frequent, really deep breaths in order to feel like I have enough air. The reason for this is that my lungs are not emptying out the way they should when I exhale and so when I inhale, the lungs are already partly full and my inhalation doesn’t provide for me all the oxygen I need.
The pulmonologist’s first instinct was to send me for a couple of high dollar heart and lung tests but since those costs would be out of pocket for us, I asked him if we could hold off on them and try something less expensive first and see where that takes us.
And so.
I was sent home with three inhalers and instructions to take the two “regular” inhalers concurrently. (The third inhaler on the right is a rescue inhaler.) In the past, I’ve only ever used one regular inhaler at any given time but the doctor wants to see if he can get my lungs to start emptying out better and is pulling out the “big guns” (medicine wise) to try and make that happen.
I’ll stay on this regimen for 8 weeks and then go back for a follow-up appointment; if things haven’t improved, then we may have to look at doing some more extensive testing.
The good news is that after being on these meds for a couple of days, I have seen a 20% increase on my peak flow meter! The bad news is that at least one of the meds (Advair) may not work for long term use, since it includes a steroid.
The other bad news is that some of the side effects of the medicines include throat irritation, hoarseness and voice changes.
And as it turns out, almost immediately after starting the meds, I got hoarse. I tried to sing a little this morning and produced nothing more than a croak. Which would be perfectly fine if I were a frog but I just happen to be a person who sings in public on a pretty regular basis. So croaking is not a good thing.
So. Having said all that, I will admit to you that I felt pretty discouraged (and exhausted) when I got up Tuesday morning after my long journey to Greenville (5 hours round trip) and the disheartening doctor’s visit. I did a little crying, ate a little chocolate (for therapeutic reasons, of course), and then went in to work reminding myself that my life and (and lungs) are in God’s hands.
He gave me my very first breath and has been unstintingly providing me with breath ever since. I don’t know how things will go for me over the coming years but I’m quite sure that God knows. And since He is most certainly not pacing back and forth in heaven, wringing His hands and saying, “Oh, I am so worried about Becky’s COPD” I guess there’s no reason for me to do any pacing or wringing down here, either.
I will keep breathing, smiling, living, singing.
(Or croaking, as the case may be.)
And to leave you on a happy note, here are a few pictures I took on the way to the doctor on Monday morning. I’ve always thought that a lovely sunrise is good for the soul and that is why I am sharing the soul goodness of these views with you.
Absolutely breathtaking photos (er… pun not intended. Seriously, they are stunning pics).
Ellen, well, maybe we have just discovered the root cause of my COPD. It’s all those “breath taking” pictures I shoot! 🙂
Blessings to you Becky for sharing your story. As a fellow believer I sense that you have learned to see challenges like this as another opportunity for dependance.
As a person who is knew to all this COPD (a story for another time), I was wondering the scope of options you’ve been given. For example, what nutritional lifestyles have they suggested? Or pulmonary rehab?
I’m in the process of developing a blog focused on the education, diagnosis and treatment of COPD and its related diseases. I would like to keep tabs on your story for possible inclusion as example of how one might journey with COPD, especially in a case when there “shouldn’t” be this diagnosis.
I’ll be praying with and for you as your journey. 🙂
Bobby, thanks so much for stopping by and leaving a comment. I went over to your website and was impressed by all that you are doing to help people with COPD; thank you for that!
I have not been given have nutritional guidelines to follow but I did go through pulmonary rehab about 4 years ago. As far as I can tell, I didn’t receive any benefit from it although I’m sure it was worth doing.
Thanks again for your encouragement and for your work with people who have COPD!
@Becky, I happened across this video today which ties in to our commentary:
It documents a recent study about the effects of diet on COPD.
I’m also trying to track down a COPD Eating Guidelines document that the Southwest chapter of the American Lung Association is supposed to have. If I can locate it, I’ll share the link. 🙂
Bobby, thanks so much for the video. Interesting info!
I am a long-time reader but have never commented. I just wanted to throw a note out there about oral meds that might be of use to you… I have taken advair for a long, long time and my pulmonologist tells me to brush my teeth and rinse out my mouth after I take it. It keeps the meds from building up and causing those nasty, painful spots on the inside of your mouth. Maybe this will help the hoarseness too if you gargle the mouthwash? I’ve never had a problem with hoarseness on the advair (or the other oral meds I’m on- proventil, albuterol, and singulair) but maybe this will help you. 🙂
Sarah, thanks so much for leaving a comment for the first time. Hooray! Thanks too, for weighing in on this rather unhappy topic. I knew to rinse out my mouth but hadn’t thought about brushing my teeth or gargling. I’m also glad to hear you haven’t had a problem with hoarseness; that’s encouraging.
Beautiful Pictures!..if it makes you feel any better, got two emails today one from the Scooter Store and one for a Walk-In Tub….I guess once you turn 60…funny things happen..hope your are feeling better fast!
Cece, well, since I haven’t yet heard from The Scooter Store, I guess I feel like I must be in pretty good shape! 🙂
“The Lord is my strength and my song.”
praying that your breaths are stronger, and your song is croackless.
Mrs Pam, a croakless song would lovely. And I love that verse!
Didnt one of those meds give you the same problems with your voice and you had to be taken off….have you looked into Fidelis as an insurance option?? i know here it is pretty cheap and gives great coverage.
Becky, you have a good memory–yes, I did have vocal problems with meds in the past but it’s been so long, I can’t remember which ones it was. Guess I’m finding out! I looked into the Fidelis option but it seems to be only for NY state residents.
That stinks. I’m sorry. Do the doctors think the Lyme disease may have something to do with it?
Love Deb
Deb, “That stinks” is a pretty good description! I’ve mentioned Lyme to several of the Pulmonologists but none have seemed to think it had much to do with my COPD.
Beautiful pics, as usual. You may find that after your system is on Spiriva for awhile, the croaking may dissipate somewhat. I found less throat irritation after I was on it for a time. (I couldn’t sing either, but then, I couldn’t sing before!) Did anyone inquire whether years of traveling might have contributed? I’m really dumb about vehicles and fuels, but I was thinking maybe inhaling the fumes for an extended period of time might be a factor.
Jan, Steve and I have mentioned to each other a couple times things like diesel fumes but honestly, I was rarely near the fuel tanks when he fueled up our trucks; if anybody has inhaled a bunch of fuel fumes, it would be Steve! But his lungs are churning away marvelously! 🙂 Glad to know the hoarseness might go away a little after some time has passed.
Sorry to hear this! I know what it’s like to have problems breathing-have had it for more than a year, off and on. That feeling of not getting enough oxygen is scary. Mine’s probably related to my heart valve congenital issue but the doctors don’t seem to think so, so I’m still waiting to see the geneticist in December. Take care of yourself!
Music Girl, the pulmonologist did say that all breathing problems are either lung or heart related so your heart valve congenital issue could certainly be causing yours. I know it’s a scary thing when lungs are compromised and that you must feel some anxiety waiting to see the geneticist and then waiting for any results from that appointment. Hugs to you.
Oh Becky…I am sorry to hear that the COPD is causing you trouble. I pray that everything will work out for you!
And thank you for sharing the beautiful pictures! I’m in Grand Forks, ND and we haven’t seen the sunrise or sunset in quite a few days…hopefully the sun will come out tomorrow! =)
Krista, here’s hoping a sunrise is in your life–SOON!!!
Hi Becky,
I am so very sorry to hear that you had such a discouraging appointment. I know what it is like to leave a Dr’s office and be so discouraged I could do nothing but cry. It is SO hard when our bodies fail us and when the things we once could do are hard to do now. A few things that have brought me comfort over the years that I’ve had my own health challenges: Most of all, I have learnt that God is faithful. I may not be able to do all the things I wish I could, and not have he health I wish I did, but God holds my life and health in his hands. And, “with God all things are possible.” Some amazing things have occured in my life that could only be because of God, my disabilities aside. I have also learnt that I am not a statistic. So even though many people with my disease do quite poorly, that doesn’t mean I will. And, maybe since you are an “atypical” person with COPD I also take hope that there are always medical research and advances occuring. So, even though there aren’t curative medical treatments for my condition today, and even though as you mentioned COPD is progressive and there isn’t a cure yet, maybe (hopefully) on the horizon there will be better treatments around the corner that could halt or even reverse COPD. Or at least I find it helpful to hold on to hope. Anyways, just want you to know I will be praying for you today. Take care of yourself. I find that things like warm tea and cozy blankets and a good book all really help on days when I am discouraged.
Hugs,
Jenna Hoff
Jenna, thanks for your sweet words. People who have been through difficult times like you have been seem to have an extra special gift for passing on encouragement. And yes I agree, hope is a very good thing to hold on to–and where there is life, there is hope. Glad to know that God is in our present and in our future.
Prayers are coming your way!
Elizabeth, prayers appreciated so very much!
So sorry to hear that ole COPD is rearing its head. But glad to hear your peak flow readings are better. I have a lot of residents where I work on Advair. They have been on it for years. I’m going to check and see if they have COPD, also. Spiriva is floating around too.
I, myself, am newly embarking on a ’cause of persistent wheezing’ expedition. The docs dont take these lung things lightly, so that’s good.
Lesley, “A cause of persistent wheezing” expedition does not sound like very much fun! Hope you get the reason nailed down quickly. Currently I am taking Advair AND Spiriva–don’t know which one is causing the hoarseness but glad to hear that people you know have taken Advair for years.
Hi, Becky!
Sorry to hear about your COPD getting worse, hope the new medication will work!
I also feel with you on the hoarseness. And in that regard, have you tried eating something directly after taking the med that causes it? I’ve had hoarseness issues when I started on my steroid inhaler 14 years ago for my asthma and had some hoarseness at the beginning. My doc recommended to eat something directly after the inhalation and for me it worked, I still have some issues with it, but tremendously less so.
best wishes Nadine from Germany
PS: Ha! Browser change actually lets me comment on here again.
Nadine, you may have already told me but remind me–which browser were you using when you couldn’t comment? And which browser did you use this time?
Eating something after using the inhaler is a good idea; the doctor told me to rinse my mouth with water after taking the Advair but that wouldn’t help with keeping the med away from my vocal cords. Maybe eating a little something would help. Thanks!
Hi, Becky!
I’ve been using Internet Explorer 7.0 with Maxthon 1.1 (pretty old combination, doubt many people use it still, if any, Maxthon is not a common browser to begin with) and deactivated JavaScript (which may have been the culprit, but with it active I wasn’t able to display the page at all, old rendering engine and new code sometimes don’t mix well) before, now I am using Maxthon 3.4.5.2000 with Ultra Mode active. Did the switch a couple of days ago. Loved the old Maxthon, used it for about ten years, but it was time to use something more modern. Hope the info helps.
Also hope the eating advice will help alleviate your issues with the Advair! Will keep you in my thoughts and prayers!
best wishes Nadine, from Germany
Ah, new Maxthon doesn’t work using Retro Mode, either, just tried. Just a box with “Enter your comment here…” and nothing to be done with it. So, I guess old rendering engines don’t go together with the code of the commenting system.
best wishes Nadine
Thanks, Nadine for the extra info!
Becky, So sorry that you’re feeling discouraged and experiencing problems with the COPD. Hopefully the inhalers will do the trick. I’ll say an extra prayer for you and your comfort and for healing as well. Oh, and the pictures are gorgeous. As usual! 🙂
LeeAnne, so happy you enjoyed the pictures. Thanks for the prayers and the encouraging words!
Becky,
I’m sorry that your appointment was so discouraging! This has been such a battle over the years! You mentioned lung transplant a few years ago? Is that still on the table down the line? Also, have you ever had an ECHO? I know it tests the heart but sometimes lung & heart issues can go hand & hand (& not something serious; everyone was very treatable) & be confused! And, I don’t know how helpful the is but I’ve been on Advair @ least 10 years & my dad @ least 5 (HFA not discus) I “think” we both are unscathed as far as that’s concerned! Maybe? Take care!
Jodi, yes, a Duke pulmonologist did mention a few years back that a transplant could be in my future but since I stayed pretty steady for a couple years, it hasn’t been brought up again. If it is in my future, I couldn’t see it happening for quite a while since I’m nowhere near to the point of even needing supplemental oxygen. Hopefully this recent change for the worst is not indicative of a downward trend.
Wow–Advair for 10 years? I guess I don’t need to worry too much then, about it being safe for the long haul. Sounds like it is!
Oh, dear, Becky. I will pray for your croaking to cease and your beautiful voice to return. However, you are so correct – God has this in His hands and they are very capable hands. Speaking of hands, those sunrise photos just invite me to dip my hand in the sea. Thank you for sharing all your gifts with us. We may have to start filling up that waiting room again with prayer-full folks. No need for you to wait alone!
Mary, thanks to you and other members of this wonderful Smithellaneous family, I ALWAYS know I have someone in the waiting room with me!
Hi Becky,
I am sorry that your appointment brought you disappointing news. 🙁 My dad had emphysema from years of smoking. One of the meds he used was Advair. My dad used it for a number of years. He also used Spirivia (sp?) too. HUGS to you! You are in my thoughts and prayers.
Kristi, well, your Dad and I are on the same page with medicine! I’m using Advair AND Spiriva at the moment although I don’t think the doubled up medicine is the plan for the long haul. At some point (soon) I’m hoping to just be assigned to one med or the other. Thanks for thinking of me and praying!