After spending half an hour getting some of my medical history, my new pulmonologist stood up from his stool and said, “Let me listen to your lungs and then I’ll tell you what I think is going on.”
For a lifelong wordsmith, sputtering, “WHAT?” was not terribly impressive. (Picture this inarticulate response accompanied by a dropped open mouth.)
Why did I have that kind of response? Well, for twenty long years, I have been waiting for some medical person to say those very words to me. Past pulmonologists have only said, “Why do you have this disease when there is absolutely no reason for you to have it?” (I.e., I have never smoked or been around smokers, have had no exposure to chemicals or other things that generally lead to obliterative bronchiolitis)
If I gaped at him when he told me he thought he knew what the problem was, I gaped even more when he gave me the answer.
Are you ready for this?
Acid reflux.
Yes, you read that right.
In a nutshell, he thinks that over the past two decades of lung problems, I’ve been experiencing chronic microaspiration which is the aspiration of small droplets of gastric contents or foreign particles into the lungs. In his words, this “changes the lungs’ architecture” and, in my case, he thinks it led to obliterative bronchiolitis.
For a little context, here is a brief description of the diseases’ causes and progression:
The very small airways of the lungs are called bronchioles. Bronchioles can become injured as a result of inhaling a harmful substance or due to an infection. Most of the time, the injury heals normally.
Occasionally the cellular repair process goes into overdrive, causing the build-up of scar tissue. The thick scar tissue blocks the bronchioles and prevents air from passing through to the alveoli, or air sacs. This impairs the body’s ability to absorb oxygen. The scarring and narrowing of the bronchioles may continue to worsen over time, eventually resulting in respiratory failure.
Now that we have a possible answer to this decades-long puzzle, the next step on this journey is for me to return to Chapel Hill and have a test. It is not a real fun test.
It will involve a sensor wire being threaded up my nose and down the back of my throat. Then I will take small sips of water to push the wire down the esophagus and into the stomach. (I have a strong gag reflex so I will probably not be their easiest patient.)
The sensor will stay in place for twenty-four hours and I will eat and drink normally as it tracks all the goings-on in my stomach and esophagus.
After its removal, if Dr. Lobo’s hypothesis is proven true, I would have a surgery where the top part of my stomach would be wound around the bottom part of the esophagus. It’s called Laparoscopic Nissen Fundoplication surgery and is 95% effective in dealing with reflux.
Once the reflux problem is solved, my lung disease should not progress any further and, with that irritant taken away in addition to a change in meds, Dr. Lobo said I might even be able to see some improvement.
Let me just add that I don’t think I have ever been as impressed with a doctor as much as I am with Dr. Lobo.
When he came into the room, he said that he had read all of my records and looked at my scans and I thought, “Well, yeah, you probably glanced through a few things.” I mean, I know how busy doctors are.
But then about fifteen minutes into the hour-long appointment, he rattled off from memory the names of several medicines I had taken a few years ago. I thought, “Wow. He really did read my records.”
He also did my favorite doctor thing which was to stop every 10 or 15 minutes and ask, “Do you have any questions?”
From reading my records, he was aware that I’ve also been having some muscle weakness over the past six months. In an effort to get all the possible info about my lungs as well as research the muscle issue, he ordered blood tests that required 12 tubes of blood to be taken. While the phlebotomist was drawing the blood she said that Dr. Lobo was very thorough and doesn’t stop till he gets an answer. Just the kind of doctor I want.
In addition to getting flu and pneumonia vaccines, I was feeling rather pin-cushiony when I left. But I was also feeling hopeful for the first time in a long time, so it was more than worth it.
And I have to add that I loved the place where my appointment was. How cool is it that they use the word “pods” instead of “exam rooms?” And the colors? Be still my heart.
I didn’t get out of the appointment till 5 p.m. and thankfully, I didn’t have to drive the four hours back home. I found a room on Priceline for $56 and very gratefully repaired there for a restful evening. It had been an eventful, tiring day.
When I got home the next day and told Steve what Dr. Lobo had said, he actually got teary-eyed. He’s walked this long road with me and knew as well as I did, that a lung transplant was probably somewhere in my future.
Although Dr. Lobo agreed that I have moderate/severe disease and a lung transplant could never be completely taken off the table, the chances of needing it have definitely receded much further into the distance.
And underlying the whole amazing appointment was the knowledge that I technically shouldn’t even have been at that appointment because Dr. Lobo is not accepting new patients. It was only because my Greenville pulmonologist had the humility to step back and say, “Your case has become too complicated and I don’t feel comfortable being your doctor anymore. I am going to call a colleague at Chapel Hill and see if he will take you on.”
The call was made and Dr. Lobo said yes.
And because he said yes, there is a little more hope in the Smith household today.
So thankful.
What about you? Have you ever had a difficult medical test you dreaded? What are some of the things you did to cope?
What is something hopeful or positive that is going on in your life right now?
Wow, that was surprising to hear, after all these years! Prayers that his diagnosis is correct. He sounds like the kind of doctor everyone would like to have. Just curious, have you ever taken anything for acid reflux or felt like you had heartburn? My husband and other friends have taken acid reflux meds for years even though it says on the information sheet that comes with the meds that they should only be used a certain amount of time.
Not much positive here, had another sewage/flooding incident (4th time now). Lost furnace, washer, dryer, water heater, 6 ft deep freeze filled with meat, salmon, perch, walleye, chicken, etc., treadmill, elliptical, clothing, paints, canvas and watercolor paper, and too much more. To add insult to injury, the power also went out for several days! Not a very good summer. Profession reconstruction cost 8658.00 and only had 10,000 insurance. That was in June, all walls had to be cut out a foot above the 36 inches of sewage, floor ripped out, etc. Been working on repairs to try to sell and move but no houses are available. This was after a fire at the storage building our boat was in, along with many others, caught fire and burned to the ground in December. The fire was so bad it took several days before the inspectors could even go in to determine how the fire started. Due to the fire being so bad they couldn’t even make a determination on the cause. My husband was lucky to find a new (used) boat in March of this year. Positive was that we had a lot of very good friends and family help us with the sewage disaster.
Kari,
Yes, I have taken prescription acid reflux medicine for about six months now and over the counter before that. Hopefully, if I have the surgery, I won’t need it anymore.
I can’t quite come up with the right words to reply to your (4th time) sewage flooding incident. Being flooded on the Outer Banks is pretty common but to have the flooding be done with sewage? Oh my. And then to be followed by no power AND a fire makes for a challenging summer, indeed. Thankful, with you, for the friends and family around you who chipped in to help. What a blessing!
I am crying tears of joy for you. You have been on such a roller coaster ride for so long. I am praying that God will use this doctor in your life. My husband was Wayne and Dotties pastor for many years. We are retired and living in Ellwood City now. We will continue prayers for you. I have followed your writings for many years. I have come to love you and your family.
Candy C.
Candy,
What a sweet comment; thank you so much for your words of encouragement, affirmation and especially, for your tears and prayers.
Thanks for hanging around with us all these years! 🙂
Wow! I mean…What!!!! What a wonderful answer it could be. I am incredibly happy for you that it could be acid reflux and have a relatively easy fix or partial fix. Again…WOW!!
I do really like the color of the pods as well.
Plus, you found an awesome deal on a motel. Yay!
Wendy,
Colored pods and good deals and reflux fixes. A good day, indeed!
What?!?! is right! I will continue to hold you close in prayer for the answers and a correct regimen to get you better!
Also, i love the pods, too. What a fun space.
Krista,
I’m glad someone else was as impressed with the fun pods as I was. Such a refreshing change from normal corridors and exam rooms.
I very much hope this Dr. Lobo is right. This diagnosis sounds like it has a much better prognosis than what you previously thought. You deserve good news and some answers after suffering so long. A lot of doctors give the impression that they don’t really care what happens to you, glad you have found a good one.
I try to find joy in little things, but I don’t have anything positive or hopeful in my life.
Raquel,
Good for you in looking for the joy in small things. I know joy can be hard to find sometimes; I speak from experience. But please know you have a friend in Manteo who prayed for you this morning. I hope that brings a little joy to your day.
Thanks for your words about the better prognosis. So thankful for anything that makes a difference!
Great news on your new pulmonologist. Prayers for you regarding the test.
I had to have a COVID test yesterday morning. That is never fun. I’ve only had one other when I was having foot surgery. This time is was because my mom tested positive Monday afternoon. I had been to see them Saturday outside and all wearing masks. Thursday I had been to see them in their room with only me wearing a mask. My dad is negative so far and they have allowed them to remain in the same room. They said it would be more detrimental to separate them at this point. My dad would worry himself sick if he wasn’t in the same room. They cleared this with the health department. So prayers that my dad continues to be negative and that my results are also negative. Guess that positive isn’t exactly positive.
Phyllis,
So sorry about your mom testing positive but very grateful that they are not separating your dad and her. That would be so incredibly difficult for them both.
Yes, in that case, we’ll be glad to take a “negative” from you, rather than a “positive.” No COVID!
Praise God! Praying this is the answer you have been looking for.
Thanks so much, Lynn. Praying the same thing.
This is amazing news! What a blessing!
Suzanne,
Nice to at least have a ray of hope.
Love to hear this “Good News”…..continued healing ….
Judy,
Glad for good news and healing!
So glad that you connected with Dr. Lobo. He sounds like a very caring physician, ‘one in a million’. I will pray regarding the test in Chapel Hill.
Philippians 4:13
I can do all things through Christ who strengthens me.
Gloria,
Thanks for your prayers for that test; will be glad when it’s over!
How wonderful that you received such encouraging news from Dr. Lobo – he does sound like an amazing doctor. I agree the test you will have to undergo does NOT sound pleasant, but it could lead to some wonderful answers. I’m curious as to how small this wire is they plan to leave threaded into your stomach for 24 hours. But on a more pleasant note, your hotel room looks so restful. I hope y’all have a wonderful week!
Sue Ellen,
I believe he said the wire is about the size of a phone charging cord. Fun times!
Such wonderful news and what a great doctor – who wants to continue to look into things until he finds the answer. Not many doctors will do that. Have to believe the Lord brought him into your life. When you said “acid reflux” I thought – SAY WHAT? Don’t know if you slept much better after that report, but think a little weight might have left your shoulders. For $56.00 that is a beautiful room! Even though this was a great report, will continue to pray. Bless you Steve. You have been a warrior throughout this ordeal and a blessed helpmate.
Sharyn,
Yes, the acid reflux was definitely a huge surprise. But if it provides an answer then . . . great!
And Steve certainly has been a great support through all of this. Very thankful.
So thrilled you have an answer. And kuddos to your Greenville pulmonologist! He knew he was at a loss and smartly moved you on. I bow to him because not many will do that. I also like the BIG picture of Dr Lobo in your post 🙂 Thank goodness for his expertise and beside manner. You are in good hands.
The good is that we have moved to a much better home for us this past week. The bad is the endless unpacking and my aching back. Totally worth it though.
Sending prayers for that medical test, that it goes quickly and uneventfully. My mantra for a difficult test is: Next week at this time it will be over, then, tomorrow at this time it will be over. Other than that I am a worrier, an anxious mess, usually mixed in with nausea and a headache. And when it’s over and I feel relieved, I am suddenly starving and can’t stop talking 🙂 🙂 🙂
Lesley,
You’re right. There are not a lot of doctors that would admit they had a case too complicated for them. Very, very thankful.
Hooray for a home that is better for what you and Sarah need! I agree that moving is not much fun but once you get settled in, it will be such a great change for you.
I’ll have to try your Difficult Test Mantra. Makes sense to me.
Oh, how I love hearing this news!!! I know how it feels to find a doc that has the knowledge and bedside manner! Hallelujah!
Guerrina,
Let’s hear it for the rare combo of knowledge and bedside manner!
It really is rare (and I don’t mean to take a swipe at doctors; I realize they’re busy and under pressure from so many directions to be hasty) to find a doctor who can/will truly invest in a complicated case. Really put the brainpower and research time into it. It’s such a blessing you found him.
Ellen,
I truly don’t know how doctors do it with the bazillion pieces of info they have to keep at their fingertips all the time. Thankful for them. And yes, it IS rare, to find one who goes the extra mile for a patient. EXACTLY what I need.
Oh, I’m so happy that you had such an informative, positive experience with your new doctor. You must have felt like a huge weight had been lifted! I had a cardiology appt today and was given the all- clear after having some weird symptoms lately. It’s always nice to get good medical news. I hope you all got to celebrate!
Gayle,
All clear? Great news!
Glad for you!
This good, hopeful news makes my heart sing! Thank the Lord for Dr Lobo.
Deb,
My heart is singing right along with yours. (I’ll take the alto.) 🙂
Becky! What a wonderful report from you today! Praise God from whom all blessings flow!
I rejoice with you and all who love you at some positive news. I will pray regarding your test—that does not sound like fun! But God will give you grace.
I also will pray for blessings on Dr. Lobo; what a blessing he is to you. I will pray that he comes to know our Heavenly Father if he does not.
Positive news from me we have our precious five month old grandson staying with us overnight tonight. 🙂
DeLynn,
Oh what a joy to get to keep your little grandson overnight. I hope you had loads of loads of sweet snuggle time.
All I can do is pick my jaw up off the floor…. THIS is the kind of doctor appointment that one likes to hear all the medical terms roll off their tongues. Will continue to pray as you have more appointments coming….
Beth,
You and me, both. I couldn’t have been more shocked. Happily shocked though, because he seems to have found the solution!
I’m loco for Lobo… aren’t you?
This was my favorite line, “The sensor will stay in place for twenty-four hours and I will eat and drink normally as it tracks all the goings-on in my stomach and esophagus.” I’ve had an NG tube down my through throat, esophagus and into my stomach, and I was able to eat an drink, but there was nothing normal about it. (A lot of jammerloppen happened each time I took so much as a sip of water. <“Jammerloppen” is the newest German word I’ve learned, and it’s much more fun to say or write than “whining!”>)
On my positive side, I finally closed on the condo of my dreams this past Friday! That also means that no more constant emails for more info. from the loan arranger.
So happy you’ve found the reason “why,” but a tad angry that no one else has figured it out before now.
Jan,
Trust YOU to have some wordplay going on. 🙂 I am DEFINITELY Lobo Loco.
I will get my jammerloppen skills geared up for the 24 hours following the test!
Congrats on the condo closing. You probably don’t want to look at another email for a long, long time.
And yes, I too wonder why no one thought of this earlier, like 15 years ago. But at least they caught it now!
WOW!!!
Mrs. Pam,
Wow, indeed!
What hopeful news to hear. Sounds like Dr. Lobo is the right doctor for you.
I had a bone marrow biopsy not to long ago. I always heard they were horrible to go through. When my doctor suggested that I needed to have one in the future to try and figure out what was going on with me, I asked, “Can you do it today?” (I knew I didn’t want to go home and worry about having it done in the future.) He said, “yes.” So within 30 minutes I had the bone marrow biopsy. I have to say it was no ways as bad as I thought it would be. He numbed me up good! The waiting is always the hardest. Hopefully your procedure will not be too uncomfortable.
My positive news is that my daughter in law, who is pregnant, and my son both had Covid and they were both able to go back to work today after a few rough weeks. Neither one was hospitalized. God is so good. Their three year old son never got it. How amazing.
Take care of yourself Becky and I will be praying for more good news on your medical front.
Joy,
How smart of you to get the biopsy done immediately and it wasn’t as bad as you thought. There is a saying that says, “The dreading of it is worse than the doing of it.” Hoping you get good, good results!
Thankful right along with you that your daughter-in-law and son have recovered so well, especially that their son didn’t get it. Lots of thanksgivings
Sounds like the perfect Dr. So happy to hear hope is in the outlook. I had to have a few scans that would require me to lay still for over an hour. That always worries me as I don’t often sit still. I usually try deep breathing and counting to keep my mind off any other thoughts. Prayers that your test goes well. My hopeful/positive thing is that in 4 days I start medicare ins. This is huge as it will bring my insurance costs much lower and with much less deductable. I will finally be able to afford going to get some tests done that I have been putting off.
Patti,
Can’t wait till my medicare days since we are paying pretty good chunks for tests and such. Glad to know you will get it soon and can get done some of the things you have been putting off.
Lying still for an hour would be right in my comfort zone but I know for a lot of people it can be an anxious time. Hopefully, you won’t need any more of those scans.
What encouraging news for you! I know it can only be explained by two words, “…but God…”. Will continue to pray for you.
Reagan,
I love the thought of, ” . . . but God.” So very true.
Such fantastic news, so happy that Dr. Lobo said yes!! Praying for all of you!
Kathy,
Dr. Lobo is very high up on my list of favorite people at the moment. 🙂
What a promising appointment!! I am so glad to see this and can only imagine how relieved you must feel!
The positive in my/our life right now is that our son, who has had some very dark days and months (actually the entire last 16 months or so), is out of that bad emotional place. He made it. He has never lost hope and is finally, finally on the upswing and out of danger. Praise God! It is SO hard, as a parent, to watch your adult child struggle with the issues that he has had to deal with. We just spent the weekend with him and his two kids and it was fantastic!!
Happy Monday!!!
Lee Anne,
Happy rejoicings with you from Manteo for you and your son.I can’t say I completely understand what you’ve been through but I DO know that your mama heart is much lighter than it has been in sixteen months as you see renewed hope for his future.
So thankful!
Such fantastic and promising news!!!
Bridgette, thank you!
Fantastic and promising are two great words together.
How wonderful to read this news this morning! Praying for continued good news!
Cindy,
Thanks so much for the prayers and rejoicings.
Amazing news! Yay!
Buff,
Yaying, too!
So glad that you have some help and information to go forward on. May the Lord lead your days ahead on all this. Ruth
Ruth,
Amen and amen!