The high resolution chest C.T. results finally arrived and the short story is although I do have some nodules in my lungs, there doesn’t seem to be anything that needs immediate attention. There are a couple of issues that will need some follow-up, though. Since I have only read the report and not discussed it with a doctor, that’s the best summary I can come up with.
The arrival of the results on Thursday morning capped off a rather complicated and stressful back story. So strap into your seats because I am about to share a synopsis of what these past days have been like.
After having the chest C.T. on September 20, I figured that while I was at the medical complex I would drop by the records department and pick up my pulmonary records. During an office visit, it’s sometimes hard to fully take in everything that’s being said so I thought it would be helpful to have the printed info in front of me for leisurely perusal.
When I got back to the car, I opened the manilla envelope for a quick glance through its contents. The top sheet referenced the chest C.T. as my most recent medical happening and then went on to list two conditions that the pulmonologist was using the scan to test for–obliterative bronchiolitis and follicular bronchiolitis.
I had not heard of either one of these although I’ll have to say that seeing the word “obliterative” in a medical context didn’t sound real encouraging. And so I immediately did what all of us do when lacking key medical knowledge: I consulted Dr. Google.
Now I would be the first to say that this is not always a great idea when you have some random, bothersome symptoms and are trying to put together your own diagnosis. However, I was looking up two conditions that my doctor seemed to think were possibilities so I felt like it was a fairly reasonable course of action.
When I typed in “obliterative bronchiolitis” the first thing I read was, “Has a high probability of mortality.” Now I don’t know if you’ve ever sat alone in your car and read those kinds of words but I really don’t recommend it.
This was not a final diagnosis. I get that. But it was one of two conditions that appeared to be high on my doctor’s list of concerns.
If I hadn’t already been interested in the scan results at that point I was extra, extra anxious to hear them after what I’d read. Since I’d heard that the doctor usually calls the patient within 3 or 4 days after a C.T. scan, I started counting those days down.
That was Thursday, September 20th.
After spending the weekend shedding fretful tears and wrestling with worries, I drove back to Greenville for my monthly RA infusion and an office visit. My pulmonologist had asked me to talk with my rheumatologist about possibly getting more aggressive with my treatment since he was concerned that the RA was starting to infiltrate my lungs.
I sat down in Dr. Oglesby’s office, got an injection in my finger joint (such great fun) and then told him what the pulmonologist had said about treatment changes. I also mentioned that I’d had a chest C.T. the Thursday before and was anxiously waiting on results.
He said, “Well, since you had the scan in our health system, I can probably just look up the results myself.” (And since the RA was possibly linked to the lung problems, it was a reasonable thing for him to do.)
I tried to be nonchalant about this sudden turn of events, even though my heart immediately sped up a few extra beats. Dr. Oglesby clacked around on his computer for a few minutes, finding the right web address, and trying to remember his password. Finally he said, “Ok, here it is!”
My first thought was, “The results are available online but they haven’t been sent to me yet? Really?”
And my second thought was, “Well, what in the world do they say?”
He read quietly for a while, hmmmed to himself, wrote a few things down on a piece of paper, and hmmmed to himself again.
My attempt at nonchalance was speedily fizzling and I finally blurted out, “So what’s the bottom line?”
He said, “Well, you don’t have interstitial lung disease, which is very good. (This fatal disease can sometimes be caused by RA.)
I asked him if either of the two conditions I had been worried about were mentioned anywhere and he said he didn’t see them.
Big sigh of relief. But then he went on to say, “You do have a 6 mm nodule in your lungs and an 8 mm lesion on your liver.”
I was trying to process what all that could mean when he added, “Oh, and you also have a fatty liver.”
Well, in the middle of all the seriousness, those words just struck me as hilarious. I thought, “Why must I have a medical condition that has the word “fatty” in it? Couldn’t they have at least called it a pleasantly plump liver or a big-boned liver?
But no. I have to have a fatty liver. Sigh. (I guarantee a man named that condition because you know a woman would never have described it that way.)
I’d had a chest x-ray back in February and no nodules were mentioned so these were obviously newly formed or too small to be seen on the x-ray. So that would logically seem like they were growing. Another thing to add to my worry list.
The report was quite a bit longer but Dr. Oglesby told me my pulmonologist would discuss the rest of the results with me.
When I asked if I could have a copy of the report he told me it should be in my online MyChart. Back out in the car again, I went online on my phone so that I could read the report in its entirety. When discovering that it wasn’t there, I figured it must have been posted in an area that only doctors could access.
But at least the results were in existence. They were printed up. They were ready to be shared. Therefore, I should get an email or a call at any moment explaining the scan in all of its complexities.
Right? Wrong.
Monday, Tuesday, Wednesday, Thursday, and Friday came and went with no contact from the doctor. I emailed three times. I got one email saying the doctor would call. On Friday morning (8 days after scan) I called the office and asked when I might hear something. The woman said she would pass on my message to the nurse and someone would be in touch.
By closing time Friday afternoon, there had been no word. I can’t begin to express how much worse this delay made the situation. If there is bad news to be told, I would much rather hear it rather imagine the worst.
If there is good news? Well, that’s okay, too. But the not knowing is terrible, especially since I had some fairly disquieting information from the printed records and from the R.A.’s reading of the report.
The day after seeing my rheumatologist, I had a royal meltdown while talking with Steve about all the things I am worried about–not just the medical tests and potential scary results but the financial worries that go along with it all since high res scan was not covered by insurance.
He handled my tears and questions with his patented blend of calmness and love. He didn’t try to fix me; instead, he listened to me, hugged me, cried with me, and prayed for me. He kept saying, “We will get through this together.”
Very sweet words to hear in an uncertain time of life.
I pulled out my newly acquired pulmonology records to read a little more and try to get a better handle on where things stood for me since my pulmonologist had told me at the last visit that things had taken a bit of a dive.
I discovered that one of the main categories (FEV1) of my Pulmonary Function testing has put me in the severe category of COPD; up until now, I have always been in the moderate category. Overall, I am still in the moderate category; it’s just that one factor has dipped lower than it’s ever been.
And it wasn’t just the words on the pieces of paper that had been bothering me. I had also been noticing increased shortness of breath so I felt like there was definitely something going on in there. I was just waiting for the final scan results to find out what.
I carried my phone with me every day, at every moment, worried that it wouldn’t ever ring and then even more worried that it would ring and it would be bad news. If you’ve ever waited on medical results, you know exactly what I’m talking about.
More days crept by and I sent a few more reminder emails. Almost two weeks after the scan, I went to see a nutritionist and was telling her about waiting on the results. She flipped on her computer and within ten seconds was reading the results out loud to me, although there was so much medical-ese I wasn’t sure what all she was saying. Once again, I was annoyed that other people could access the results, but I couldn’t. I asked her if I could have a copy and she said she couldn’t legally print it for me because she hadn’t ordered the test.
(The visit to the nutritionist will be fodder for another post; suffice it to say I cried all the way home from that particular appointment.)
I continued to wait for a call (and send reminder emails) until finally on Thursday morning, October 4 (two weeks after the scan) the results finally dropped into my inbox. I had been told all along the doctor would call to discuss them but nope–just the results.
So now I am left with the task of trying to understand it all. Here are just a few of the phrases I have been puzzling over:
As you can imagine, I have googled these mysterious words and phrases trying to get some understanding and from what I can ascertain, nothing seems horribly serious although a few things will need to be followed up on.
But then I am left with the question as to why I am having more breathing issues than normal. I was thinking that this scan would give a definitive answer on that but I don’t guess it has. I am scheduled to see the doctor who can answer all these questions but the appointment isn’t for three more weeks so I will have plenty of time to wait and wonder.
At first we kept all this information pretty much to ourselves, beyond the fact that I was waiting on results from a chest C.T. We didn’t want people to worry needlessly.
But then about ten days after the scan, Sarah came home for the weekend. As I sat chatting with her–my strong, brave daughter who has soldiered her way through countless medical hardships–I decided to tell her “the rest of the story,” including all those worrisome, fretful things I’d been thinking about over the previous few days. She listened well and was so compassionate; most importantly, she didn’t toss any one-size-fits-all platitudes at me. I’ve found that people who have been through really tough times are not real big on platitudes. (Sarah has been through many waiting periods of her own; here is one of the hardest.)
And then, since I’d told Sarah (which was a big relief) I also went ahead and shared the details with Nathan and Meagan. That meant that I had them all waiting along with me, which was truly a comfort. It’s wonderful to not have to wait alone.
So there it is. The last few weeks of our lives in a (very large) nutshell.
Thank you for taking the time (and having the patience) to read through all of this. It’s such a comfort to be able to share both the good and hard times with our wonderful Smithellaneous family.
And since this post was all about stressful things, I thought it would be nice to close with a peaceful Wisconsin landscape shot. It’s hard to be stressed when looking at a country road.
Kudos to the Smithellany-ites (not an ancient middle-easter tribe, but followers of Smithellaneous) for your love and prayers for my lady.
Steve,
They are truly some wonderful people!
Becky,
Would you mind sharing a little more about this doctor. When you see him, are you able to communicate with him? I believe communication is the key to a successful doctor patient relationship. And it must be a partnership.
Why are you seeing this particular doctor? Is there no one else you can see? For me finding the right doctor(#3) has made all the difference in the world. My severe COPD has actually improved on the last test. Doctors #1 and #2 offered no hope at all.
Best of luck to you, Becky. I know how frustrating this can all be.
Judy,
That’s the crazy thing. I’ve been going to this doctor for 4 years or so and have really liked him in person; we have communicated well all along. So this whole incident has come an unwelcome surprise.
He is actually the 3rd or 4th doctor I have seen over the past 12 years or so after being diagnosed. I don’t know . . . it may be time for a change.
Thanks for your compassion and empathy!
Been there with you on waiting for test results! Our minds are not kind to us at that time! Praying for Sarah, also. Why do the rest of us gain those pounds without even trying?? And so thankful that Summer is going to be OK. I have a lap dog that I can’t imagine life without. Prayers also for your support system!!! It is hard to be on that end sometimes, too. And as always prayers!
Vicky,
That’s very insightful of you to mention the support system needing prayer as well. That is so very true–it’s tough on patient and supporters alike.
And yes, I was wondering why most of gain weight so easily and Sarah is at the opposite end of the spectrum. I just can’t quite relate. 🙂
Thanks again for your sweet words and your prayers.
Shame on that doc for not calling you back before your results posted! The nodules could be infection too! Maybe you’ll need a bronchoscopy to see in fact if the spots are just’that. Instill believe if he hasn’t called you, he’s not worried?????
As for Sarah, perhaps you can make us a list of her topm10-15 favorite munchies and a few local eateries that will deliver on campus and we’ll help her gain back those 10 pounds and more. I’m sure there are other readers that would join me??? Love ya guys, Jodi
Jodi,
Yes, a bronchoscopy sounds a little better to me than something like an open lung biopsy. We’ll see what he says about it all.
That is so sweet of you to want to do something for Sarah. If you (or anyone else) wanted to email me, I could give you information.
Thanks for being indignant on my behalf and all your support through the years. 🙂
I have enjoyed reading your blog for many years but have never commented. I am so sorry you are going through all the worry and anxiety. I’m praying for you!
Becky,
First time commenters always make my day! 🙂
Thank you for the prayer and concern; I so appreciate it.
Becky, I’m so sorry you’ve had such a stressful time; You and your family are always in my thoughts and prayers. I hope Sarah is able to gain some weight, worrying about our babies (no matter how old) is even worse than worrying about ourselves. I know my mind comes up with worst case scenarios on steroids; I hope you are able to find peace as you wait for your appointment.
Sue Ellen,
Worst case scenarios on steroids. A perfect way to put it.
Thank you for the prayers!
I can’t imagine the stress you have gone through waiting on the results and then the doctor just “dropping” them in your inbox. Doesn’t make sense that he wouldn’t have called and explained them to you. Prayers for peace until your appointment in 3 weeks.
Hope that the extra protein and other weight gaining items put some weight on Sarah.
Over 25 years ago, I was scheduled for surgery. The day before they called and said it might need to be canceled as my ALT (liver count) was elevated. They determined it was okay to go ahead with but wanted me to follow up with a GI doctor after the surgery and recovery. I did and he ran all kinds of tests. Final diagnosis – Fatty Liver!
Phyllis,
I guess I can start referring to you as my Fatty Liver Friend. 🙂 Glad they finally found out what was wrong with you!
Oh gosh Becky, how incredibly difficult these weeks have been for you. Your smithellaneous family are definitely here for you. I have found that sharing these kinds of things with the kids, family and friends somehow lightens the load. I agree with your final determination, things don’t sound drastic from the report, although time and followup will be more clarifying. It must be a wee bit troubling to feel so out of breath with no specific answer as of yet. Uggh.
I just want to express my dismay at the lack of followup with you from this ordering physician. There is NO excuse for this ridiculous delay and lack of a phone call.
And Miss Sarah, hopefully her weight will bounce back up like it did the last time and the paleness will resolve. She is a delicate flower 🙂
Hugs to you and you are in my thoughts.
Lesley,
Sarah, the delicate flower. I love that!
As a nurse yourself, I know you are extra aware of procedures for following up after tests and scans and agree– this follow up procedure definitely left something to be desired.
Becky I’m so sorry it has been such a hard time; you’ve gone through some incredibly stressful and heavy things in a short period of time. I wish that there was something I could do to help or reduce your load a little. I hope that the coming months are less difficult and trying and that they bring with them days of peace and rest and rejuvenation. I am praying for you.
Jenna,
Coming from someone like you who has been through so much, your words mean a lot.
Thank you for your prayers for peace, rest, and rejuvenation. That is my prayer for you, as well.
I well remember last summer waiting for biopsy results after the initial breast cancer diagnosis. I made many calls, too. Prayers for you, Becky, that God will grant peace and calmness to you. Pray Sarah gains weight and glad Summer is better. We have been dealing with medical issues with our Luci who was Mama’s pup til her death and then she became ours. May God bless you my Pink Sister and give the strength you need. Prayers for Steve, too. Hugs.
Ann,
Yes, I know you’ve had extra, EXTRA experience in waiting. It’s never any fun, is it?
And dealing with our fur baby’s medical issues is traumatizing, too. Love those doggies of ours!
Waiting for test results are horrific. Especially when they reference it could be something majorly wrong. Praying Sarah is on the gaining end now, If only I could give her about 25 pounds I would be sooo happy to! 🙂
Wendy,
You give her some pounds; I’ll give her some pounds. She’ll be good to go! 🙂
I am so sorry, Becki. I stink with waiting to know the unknown. How can I help?
Guerrina,
Just using the word “stink” in a comment is help enough. It made me smile. 🙂
Prayers for you and your family! And I would certainly mention the lack of response when you finally get to meet with the doctor.
drmt,
Yes, at some point I will definitely me mentioning this whole situation to either the doctor himself or to management. It’s too late to make a difference for me but maybe they will get some guidelines in place to help future patients.
Hang in there! The Lord will take care of everything. My prayers are for you to find calming in mind and soul!
Jim,
Thank you, Jim. You have been through enough to know exactly what it’s all about. I appreciate your prayers so much.
Beck, you really need to make it clear to your medical team that they messed up big time and they need to make sure that doesn’t happen again. That kind of non-communication about a serious medical issue is unacceptable. Grrr!
Praying that God will send you some sunshiney days now to replace the stormy ones you have endured.
So glad Summer was ok. Love to you and Steve!
Love, Deb
Deb,
Sunshiney days are always a lovely thing! Although we have tropical storms arriving tomorrow with 40-50 mph winds and rain so the sunshiney-ness may have to wait a day or two. 🙂
Thanks for your continual support.
My goodness….your frustrations and situation just make me want to scream and then cry for you. It angers me that your doctor didn’t deem it important enough to call you and discuss the results with you. Praying for you and for peace for you as you wait for this next appointment. I’ll also throw a few in for Sarah as well.
LeeAnne,
Thank you for being frustrated on my behalf; I appreciate you caring enough to be upset!
I’ll be able to talk with that doctor before it’s all over and get the WHOLE scoop!
Oh, my, yes, the waiting for results. And to wait for a call that never came. The test results could have stated, “at the bottom please see clarity in laymen’s terms which will be easier for you to understand. We are terribly sorry for the delay in getting back to you the results of your scan.” You certainly don’t need any more stress in your life. So glad to hear that Summer is doing okay. Thank you so much for keeping us informed.
Sharyn,
What polite, diplomatic wording you came up with; they need to put you on their staff!
And you’re right–that would be the perfect way to handle it. A simple apology and an explanation.
Oh. My. Goodness.
Such a LOT on your plate right now.
Sending you much love and light and hopefulness and healing thoughts.
Stefanie,
Thanks for your concern and compassion and healing thoughts. I appreciate you!
When you finally do get to talk to the doctor, I think you should bring up the fact that two other healthcare professionals were able to view and discuss the results with you and despite many attempts on your part, you had still not heard from his office. I know confrontation really isn’t your thing, but the length of time you have had to wait (and continue to wait) is inexcusable. We all have to be our own advocate, as you are well aware with all of the experiences you and Sarah have had. Think of it this way, if these test results were Sarah’s, would you accept this lack of response from the doctor’s office? I am just furious for you that this is the level of care your getting, when you are one of the nicest, caring people I “know”. I will continue to keep you and Sarah and the rest of your family in my prayers and I hope your appointment gets you all the answers you need.
Mary,
I am touched and amazed by the fact that my blog readers, who haven’t even met us, take our hard times and challenges to heart.
Thank you so much for your your concern, your compassion, and for your wise words of advice. I will DEFINITELY be saying something.
Waiting on test results are the absolute worst thing! Praying, praying, praying for peace for you while you wait for your next appointment.
Mary,
Peace. Prayers. Both welcomed and needed. Thank you!