I’ve been putting off writing this doctor report for almost a week now, but I guess the best thing to do is to just sit down and do it.
As I mentioned earlier, I had four medical appointments last Tuesday, plus five hours on the road. The first appointment was for my monthly IV infusion of Orencia and a steroid. From there I had a scant 10 minutes to scoot on over to the ENT doctor. My pulmonologist (having seen my history of Vocal Cord Dysfunction) wanted me to be checked again since the vocal cords and the lungs have to work in cooperation to get all the air moved in and out efficiently.
I was not overly overjoyed about this particular appointment since I figured they would be doing what they euphemistically call, “taking a few pictures.” As a Nikon-carrying, picture-taking aficionado, you would think those words would make me happy. Alas, the pictures they were referring to had nothing to do with expanses of ocean or fields of flowers; they were wanting to take pictures of my vocal cords.
MY vocal cords. My very own personal vocal cords. And my very own personal,highly over reactive gag reflex which can’t tolerate even the sight of a doctor holding one of those dastardly tongue depressors. They freak. Me. Out.
Sure enough, I was led to a back room by a perky person who cheerily informed me that yes, their intent was to take pictures of my vocal cords. I would have bolted and run but since she was 20 years younger and 20 pounds lighter, I knew she could have chased me down and dragged me right back.
So I unhappily sat myself down and submitted my person to the picture-taking process. The last time I had this done (about 7 years ago) a camera on a wire was inserted up my nose and then down to the back of my throat which was not one of the most favorite experiences I’ve ever had.
This time however, the procedure was different. The technician grabbed my tongue, stuck a big. long thingie all the way to the back of my tongue and said, ‘Now please sing “Eeeee” up and down the scale.”
I thought, “You’re kidding, right? The only thing you MIGHT get me to do at this particular juncture is to vomit and I’m pretty sure I could do that for you with no trouble whatsoever–both up AND down the scale.”
Just so that you can get a full understanding of my delightsome experience, here are a few pictures I grabbed from the Internet.
I love how the technician in this particular picture is smiling so happily.
Atlanticearnosethroat,com
I can’t quite get over how calm and happy this patient looks. I’m thinking she must have taken a little nerve pill ahead of time.
wcupa.edu.com
To make a long story short, the overall experience did not go real well. After about five attempts to get a 30-second video, all of which ended with me flailing my arms, tearing up, and jerking my head back, my intrepid tech finally said, “Okay. Why don’t we try some throat numbing spray this time?”
Um. Hello? WHY didn’t we try that the first time around and save me all the trauma?
Once we got the spray on board, it was pretty easy from that point on. The test showed that I had a few smallish vocal cord issues but nothing that would have any impact on my breathing so that was good to know.
From there, I went to have my annual pulmonary function testing done and then I had an hour to wait before going back to the same office to meet with my pulmonologist to discuss the results.
And that was where the day took a turn for the worse.
It turns out that over the space of a year, my FEV1 values took a dive from 61% to 49%. (Normal function is anything over 80%, mild is 70-79%, moderate is 60-69% and severe is less than 60%.)
Here is a brief summation of what severe lung disease can mean:
Once the disease has advanced to GOLD Severe COPD, limitation of airflow significantly worsens, shortness of breath becomes more evident and COPD exacerbation is common. Your FEV1 will be between 30% and 49% predicted and your FEV1/FVC will be less than 70 percent. If you reach this stage, you may notice a decrease in your activity tolerance and an increase in fatigue-ability.
As you can imagine, this was not easy news to hear. I’ve been at a moderate level of disease ever since I was diagnosed about 8 years ago and I was feeling good about the fact that I have managed to stay at that level. To hear that I have suddenly taken such a significant drop was disheartening, to say the least.
After discussing the results with me, my pulmonologist also asked if I would consider having a high resolution CT scan of the chest sometime within the next 4-6 months. Although he’s hoping I might possibly regain a little ground by trying some new inhalers, he also wants to investigate the possibility of interstitial lung disease.
Here is a brief description:
Interstitial (in-tur-STISH-ul) lung disease describes a large group of disorders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung disease eventually affects your ability to breathe and get enough oxygen into your bloodstream. Interstitial lung disease (ILD) is a frequent manifestation of rheumatoid arthritis (RA). It is most often diagnosed in patients between the ages of 50 and 60.
Once lung scarring occurs, it’s generally irreversible. Medications may slow the damage of interstitial lung disease, but many people never regain full use of their lungs. Lung transplant is an option for some people who have interstitial lung disease.
Not real happy reading material . . .
Also, as it turns out (and I didn’t even realize this until the past few months), Rheumatoid Arthritis can have a strong negative effect on the lungs and unfortunately, the drugs used to treat RA (especially methotrexate) can cause lung problems or make them worse. I will definitely be in touch with my rheumatologist this week to let him know the results of my pulmonary function test.
So after all that–what’s next?
Well, after I cried over the fact that my health was taking steps backward instead of forward. I figured the best plan was just to keep putting one foot in front of another and keep taking one breath after another–over and over and over again.
And so I got up yesterday morning and sang with the worship team at church, even though my breath was short and my voice was weakened by the new inhaler the pulmonologist has put me on. As I sang I thought, “Take that, lung disease!”
And I got on my bike this morning (even though my bones and joints and fatigue and discouragement all told me not to) and I rode four miles in the crisp morning air. As I rode I thought, “Take that, lung disease!”
And every day I’ll continue to do everything I can to make sure that my life is not defined by a number, or a percentage, or a gloomy prognosis.
Yes, more tears will doubtlessly come (in fact I am crying as I write this) and yes discouragement will probably pay me a few more visits but the Bible says, “Let everything that has breath, praise the Lord.” Since I still have breath, I will keep praising. I will keep living,I will keep singing, I will keep hoping.
Take that, lung disease.
(I took this picture right as I finished writing this post–just so you could see that hope still shines!)
you, my friend, are the original braveheart….and I love you for it.
Carolyn,
If I am the original braveheart, YOU are the original bravest heart. Love you, too!
I hate to hear this news Becky. Hey, you and I beat cancer!! We are strong!! We are fighters! With God, you can get thru this and come out a winner! I will be praying everyday for you. Psalms 27:1, The Lord is the strength of my life….
Kaye
I love that verse.
We are fighters, indeed!
I’m sorry you got bad news at your appointment. Exercise is great and your attitude is even better. You will prove the statistics wrong..I’m sure of it. Prayers…
Michele,
Exercise and attitude . . . better than any fancy medicine! Thanks for your encouragement. 🙂
Take that indeed! So proud of you Becky.
Randy,
Thank you. You are so good at words of affirmation and I appreciate you!
We’ll walk thorough this together.
Steve,
Thanks for walking with me for thirty two years . . . so far.
Hi Becky,
My tears fell along with yours while reading this post. I wish that you could have been spared this news and my heart goes out to all of you. It’s wonderful to hear that you are cycling 4 miles and able to keep that up nicely. From your own journey with Sarah, you know that statistics are only that much. Keep up with the cycling, the singing and keep your wonderful attitude. With the love and support from family and friends, you’ll be cycling and singing and keeping up with that little grandson for a long time to come. Big hugs coming your way.
Sumathi,
Thanks for the reminder that statistics are only that much. Sarah certainly proved plenty of statistics wrong–I’ll do my best to follow her example. And thank you, too, for your tears.
Oh Beck, I HATE this for you. And I HATE this disease that is causing you so much difficulty. The unfairness of it all makes me so angry. But I have to trust the God who loves you more than I ever could and know He has a plan for your good. You’re looking beautiful in spite of it all–love your picture!
love deb
Deb,
You’ve always been one of my biggest cheerleaders and supporters and you getting indignant on my behalf means a lot! It’s nice to be so well loved. (And thanks for saying I looked beautiful.) 🙂
Becky, I’m so sorry to read all this. For years I’ve wished I could be more like you, but unfortunately it’s the other way around. This is not a good thing, because I’m a 70-year old who smoked heavily for many decades! You certainly don’t need more advice these days, so let me just present this as “information.” Exercise is the only thing that helps emphysema, but it’s hard to exercise when your breathing is compromised. Because of my arthritis, I find the only exercise I can do is in the water. And in the water, I have NO breathing problems. NONE! (Mind you, this is not swimming, but exercise.)
As always, you and your family are targeted in my prayers.
Jan,
Love the idea of you presenting advice as “information.” Too funny! 🙂
It’s so true what you said about needing to exercise and yet exercise being so difficult. I have heard other people say how much they like to exercise in the water; I’m glad you have found such success with it. I’m not real comfortable in the water but if it comes down to water being a means of getting in exercise, I guess I could GET comfortable!
Sweet Becky, I am so very sorry to hear this! I am praying for you and sending love and hugs! When you are feeling down, remember all of us lifting you up with prayer and love trying to carry you through! Your dear family has had more than your share of medical issues! Brings to mind the Mother Teresa quote: “I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.”
Take care Becky!
Holly,
Mother Teresa was a very wise and insightful woman, wasn’t she? I can certainly relate to that quote!
🙂
Thanks so very much for the love, hugs, and prayers; you’re so sweet!
I am sorry to hear of your lung troubles…You have a great attitude though, and i will tell you, working in the medical field… that does make a difference!! If I started complaining when I was growing up, my mom would always tell me that there were people that had things much worse… your attitude shows you are not complaining, but taking charge!! You go girl!!!! Prayers for you!!
Tiffany,
Sure trying to have a good attitude–thanks for the encouragement! 🙂
I’m so sorry Becky! Have the docs ever given you an explanation how someone whose never smoked & not been exposed to much (if any) second hand smoke developed COPD (aside from the standard idiopathic excuse) to begin with? I know you probably don’t want to even think about this…….but @ what FEV1 value do they start the process to determine candidacy & subsequently list one on the transplant list? Sending love & good thoughts your way! I know it won’t change things, but take a day or two to wallow; lots & lots of chocolate, mindless television, hours of reading & many naps! Loving thoughts heading your way! Love, Jodi
Jodi,
No, all the doctors I have seen have been totally puzzled as to why I have COPD and never smoked and was never around second-hand smoke. It’s one of those big mysteries.
I believe the FEV1 has to be in the 20’s or lower to to be put on a lung transplant waiting list. Thankfully, I am still a good ways from that point!
Praying for you that God may grant peace to you. Hugs from here and much love. Your positive attitude will be a big plus and you are an inspiration to so many.
Thanks so much, Ann. Your long distance hugs are being felt. 🙂
You have the best attitude. You will do well. I’ll pray with you.
Debbie,
Thanks for the prayers and the encouragement–both are needed!
I’m so sorry. I will be praying for you. Keep singing those praises, it’s the best medicine there is 🙂
Jessica,
I agree. I know they say laughter is the best medicine but I would put singing right up there beside it!
Saying some prayers for you, Becky! HUGS!!!
Thanks so very much, Kristi!
Becky. So hard it is for you to process all this disheartening information. I am trying to remember how this all began, but I can’t. Did it just come out of the blue 8 years ago? Or was there a trigger?
All we can do is just keep moving forward. Bit by bit. My thoughts are with you, I know you have a great group of support down there in NC, but I really wish I lived closer. Prayers for peace and prayers that this new inhaler works a little bit better after an adjustment period.
FYI- COPD often brings anxiety along with it, due to the breathlessness one may feel. It’s probably not warranted at this time but just wanted to share that anti-anxiety medication is often very helpful in helping one cope with this side-effect of the disease.
Hang in there, keep pedaling and photographing, girlie!
Awww Lesley, you made me tear up when you said, “I really wished I lived closer.” What a sweet sentiment!
As far as we know, there was no trigger. My health in general started taking a turn for the worse when I had Lyme Disease in 1995-1996 but I have no idea if that’s connected.
Good advice about dealing with the anxiety that feeling breathless can bring; I never would have thought of that.
And be assured that the pedaling and photographing will continue! 🙂
I am tearing up for you…. I am praying for you as you go through this. Thanks for sharing. I hope the new inhalers and maybe a changed in your RA treatment will help. Hugs from Iowa!
Marjie,
You are so sweet to care enough to cry–thank you! And hugs from Iowa (my home state) are always a good thing. 🙂
Wow!! So sorry to hear this. But you have God and that’s all you really need. He’s got this and you in his hands. Rest easy and don’t fear !! He loves you ! And well I do to !! Take care Catherine!!
Catherine,
You have such an encouraging heart–thank you for your prayers.
Well, that just plain stinks. I was hoping that no news was good news. 🙁
Anyway, I love your attitude and perseverance! I hope that new inhaler is just what you need. Hang in there.
LeeAnne,
Love the line, “That just plain stinks.” That sums it up really, really well. 🙂
Hugs to you. You will be in my prayers.
CJ–thank you for the words and the hugs. Both gratefully received.
Well, that just sucks. I am so sorry to hear about your worsening lung disease. Of course you are in my prayers.
Brooke,
Thanks for your words and for your prayers. They mean a lot!
Oh Becky, I am sorry to hear things aren’t moving in the right direction, health wise :-/ It must be extra hard for a singer to lose lung capacity… I’m hoping the new inhaler works and that you start to improve.
Sending healing vibes your way!
Renee,
Yes, I’ll have to agree that being a singer who can’t breathe well is not the most fun thing in the world. But I love doing it so much I can’t imagine ever stopping!
Dear Becky, I am so sorry to hear this news. I can imagine it is challenging and i wish I could give you a big hug! Your atttitude, tenacity, and courage are inspiring.
Know that it is okay to allow yourself to feel whatever emotions you are feeling. It is okay to grieve this situation. Healthy grieving can exist alongside optimism, hope and a never give up attitude.
One lesson I’ve learned is to not define myself by the statistics for my condition. We are unique human beings and while statistics can be useful in summarizing generalities over a population with a certain condition, as individuals (and with God) anything is possible. Take things day by day, breath by breath.
Never give up, but understand that it is okay to pace yourself and set realistic limits. I’ve had to learn to listen to my body and pace myself based on the messages it gives me. While I really wish I could do all the things a healthy person could, when my pain and fatigue are high I’ve learned to reign myself in. Ultimately, investing the time in caring for my health by saying no to things that truly are too much, can help me preserve my strength and energy for the activities and events of highest priority to me,
Please know that many people from all over the world really care about you and your family. We are all cheering you on from afar as you keep on pedaling, keep on singing, keep on taking one breath after another.
One thing. ..years ago when I was a physical therapy student (I was a physio until my health issues necessitated a career change), I completed a practicum in a pulmonary rehabilitation program in an hospital outpatient program geared towards people with lung diseases, the majority with copd. It was a combined patient education, medication, breathing techniques, and medically supervised exercise program. Perhaps there could be a similar program at a hospital near your home, or your copd specificalist may know of one.
Take care and I hope today goes well for you. Again, know that we all care deeply.
Jenna,
I am always blessed when you break away from your own physical challenges to send encouragement my way. Thank you for the time and thought you put into passing along your hard-earned wisdom.
I actually did pulmonary rehab about 7 years ago back when I was first diagnosed–a great program!
My prayers and thoughts are with you and am hoping things get better for you. Not easy feeling yucky all the time. I am having some problems with my lungs and they have run tests and found that I have the early stages of COPD and emphysema. I am glad that it is only in its early stages but still depressing.
I love your approach to all of your findings and wish you the best on getting better.
Take care Becky!
Shawn,
Well, I can truly say that I know how you feel when it comes to getting a COPD diagnosis; if you’re like me, it was probably a disease you’d barely even heard about until you found out that you had it.
But you and me? We’re both going to make it! Sending hugs.
Becky, those statistics and results do not know who they are dealing with! You are stronger and more confident and filled with more faith and God’s love than any doctor, technician or medical report could ever imagine. So, take THAT thought Becky and do exactly what you are doing because if we stop and don’t turn on our heels and face our problems and health issues directly in the eyes they will take everything they can from us and THAT will never happen to Becky Smith. No siree, THAT will never happen to you! Prayers and keep on pedaling and photographing (that is not a word) and singing – you have the right plan and it was God’s love that placed it in your heart and mind.
Mary,
Prayers from you. Pedaling and photographing from me. Sounds like a great plan!
Becky, I am so sorry to read this. My prayers will continue for your health to improve and for your amazing courage to stay the course.
Liz,
Staying the course is the thing, isn’t it? It’s the only way to go but some days, it’s sure more difficult than other days. Your encouragement means so much.
I just love you , Becky. You are almost as brave as your darling daughter. I promise to pray for you every day. Thank you for your faithfulness in praying for my family and so many others. You are a blessing. Thanks for letting us into your lives. With much love,
Kim Waggoner
Kim,
Being as brave as Sarah would certainly be a great accomplishment! 🙂 Thank you so much for your words and more importantly, for the heart behind those words. Blessings to you and your sweet family today.
I don’t really know what to say but i didn’t want to read and run. My thoughts are with you – I’m confident that if anyone can show lung disease a thing or two, it’s you.
Will be hoping and praying the new inhalers works a miracle!
Becky
Rebecca
It made me smile to know that you didn’t want to “read and run.” What a great way to put that.:-)