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  • CT Scan results questions

    Posted by Pamela on June 6, 2024 at 12:39 pm

    Hello Everyone!

    I don’t know anyone with my condition outside of this forum so I am coming to this wonderful place to ask some questions about my recent CT Scan. Thanks in advance for anyone who is reading this and can lend some insight.

    I was diagnosed with ILD due to Scleroderma in July of 2021. I also have Sjogrens and GERD. I am 49 years old.

    My last CT a year ago had mild opacities, no bronchiestasis, no granulomas, no coronary calcifications or fractured ribs. This year I received my findings and its looks worse. I am trying not to be too freaked out about this, I am still pretty active, walk 4-5 miles a day. I have had several bouts with colds/pneumonia since last year.

    My question surrounds the fact that my diagnosis went from mild to moderate opacities, what does this mean exactly? Should Ofev help stop the opacity progression?

    Does anyone else have mild coronary calcification, calcified right hilar lymph nodes, or splenic granulomas, and is there anything to do about this? Why does this happen?

    Also, has anyone dealt with fractured ribs? I have not had any falls or trauma I can think of, I do jog a bit for short distances, had coughing fits with all the colds I had this past year.

    Admittedly I am not the best about taking my medication which are Ofev and Mycophenolic Acid for the fibrosis, I get tired of taking up to 12 pills a day. I just got married a few months ago for the first time and I have been trying to live my life happily, but these findings have scared me and I was hoping for some feedback from anyone who has had a similar diagnosis or experience or knowledge with what was found below.

    Here is the CT scan findings:

    1. No suspicious pulmonary nodule or mass or acute opacity is detected

    2. Basal subpleural predominant moderate reticular opacities with mild traction bronchiectasis, stable. No definite honeycombing is detected. Calcified granulomas. Lungs are otherwise clear


    3. No axillary lymphadenopathy. Upper normal mediastinal nodes are likely reactive, similar to the prior. No axillary, mediastinal or definite hilar lymphadenopathy identified on this limited noncontrast exam. Calcified right hilar lymph nodes.

    4. Heart is not enlarged. No pericardial or pleural effusion

    5. Minimal coronary calcifications. The great vessels are normal caliber.

    6. Calcified splenic granulomas.

    7. Healed rib fractures. Visualized bones show no suspicious lesion.

    IMPRESSION:

    Stable moderate degree of possible UIP pattern chronic ILD. No acute or suspicious findings detected.

    —————————————-

    Thank you in advance for your time and kindness, I greatly appreciate your help!

    Pamela

    Pamela replied 8 months ago 9 Members · 9 Replies
  • 9 Replies
  • Terri

    Member
    June 6, 2024 at 2:52 pm

    Hi Pamela – I have ILD secondary to Sjogren’s. I’m on Ofev and mycophenolate. It is my understanding that Ofev is intended to slow the progression of the scarring, and mycophenolate is intended to control the coughing and shortness of breath. Both drugs cause bowel issues for me, but my pulmonary doctor, at my request, lowered the Ofev dosage from 150mg 2x day to 100mg 2x day, and that has helped. Also remembering to take it with protein and fat helps control the bowel issues. Mycophenolate is another story. I sometimes skip one of two prescribed daily dosages of it due to bowel issues, but then I’m coughing more and even shorter of breath. It’s such a vicious cycle!

    My ILD is considered progressive. My doctor said I’m at risk for developing end-stage pulmonary fibrosis. I can’t walk more than a half block without being breathless. I use supplemental oxygen when exercising or walking outside.

    You have some great questions, but I’d suggest asking your pulmonary doctor, not this forum. We’re patients just like you and most of us don’t have a medical degree or medical background. I never look at my CT scan results. I ask my doctor what they mean and what needs to be done next. He’s GREAT about answering all my questions. If you don’t have a doctor like this, I’d suggest you find a new doctor.

  • pastordan

    Member
    June 6, 2024 at 3:00 pm

    Hi, Pamela! Thanks for sharing this level of detail. I am pretty sure that radiologists choose their words carefully, so you never want to panic before asking your pulmonologist about something you read. He’s usually read it by the time you have, so he’s (or she’s) already started thinking about any changes that might seem wise for you. Please let all of that sink in.

    I am 67, and I don’t come from families that display much longevity. I think I might want to swap your CT report for my own, because I have the things you don’t (cardiac calcification, issues with kidneys, spleen, etc., among other things), and some of yours sounds better than mine. Of course, I must confess that I’m a newbie to this particular ailment, but I am going to acknowledge the first anniversary of my diagnosis in a couple of months. Anyway, gotta run,but I will be back. I will urge you to write out your questions as they come to mind, so you can recall it all for your next doctor’s appointment. I will also urge you (and everyone) to talk these things over with your spouse, and/or caregiver. They MIGHT know how to respond to your current concerns. They might have questions about this illness that you could answer, or pledge to ask your medical team for the answers.

    Peace and blessings to you and yours.

  • Sandyman

    Member
    June 6, 2024 at 3:07 pm

    I agree with the other post in that your Doctor that ordered the CT Scan should tell you what those diagnosis mean and how they pertain to you and your particular situation. From my laymen knowledge I think your results look good, but what do I know? Can’t give you a pass for the not taking meds. You walking those miles every day and you can’t handle the pills? Take those pill as directed and then you know you are doing all you can to help yourself. Let us know what the Dr. says about your scan. Good luck. Sandy

  • jonathan-poland

    Member
    June 6, 2024 at 4:18 pm

    Hi Pamela,

    I am not a doctor. I am especially not a radiologist! I think I understand a little about how doctors communicate. Your quoted radiology report was written by a radiologist to the doctor who ordered the test, not to you or any other lay person. They use a very precise language and have very specific guidelines about how to describe what they see – and those words don’t generally fit into the common way a non-doctor would use them.

    My advise:

    1. See your pulmonologist and endocrinologist and ask them to interpret the findings in light of your conditions. Write your questions in advance so that you can remember them. Write their answers down too, so that you can remember them afterwards. If possible have your spouse or close friend go with you to help you remember what was said.

    2. Until that visit, concentrate on the positive notes in the report. I read it as saying that they are looking at everything and not seeing much that is causing a problem and not significantly worse than in the past. You definitely don’t have IPF because there is no “honeycombing” or “ground-glass opacity”. The tests show no significant coronary disease or other heart issues either. Etc.

    3. Coughing is one of the most common ways to break a rib! They have healed, so don’t be concerned except to ask your doctor (or her nurse) how to properly cough (yes, there is a proper way to cough so you don’t break ribs) so you don’t repeat the breaks in the future.

    4. Take your medicine!

    I’m wishing you all the best!

    jon

  • Adele Friedman

    Member
    June 6, 2024 at 6:09 pm

    Mycophenolate reduces inflammation and prevents new inflammation from forming. Ofev is to slow the progression of fibrosis. If inflammation remains unchecked, Ofev has a harder job. Please take your meds and make sure you use oxygen as needed.

  • Babe

    Member
    June 6, 2024 at 6:41 pm

    Pamela, I encourage you to take the medicine as prescribed. My doctor said Ofev works best in the early stages. Pay attention to the timing of your medications. Take care to prevent Covid and also viral infections. Continue aerobic exercise. These things should pay off. You are young and should have the choice of a lung transplant if the disease gets that bad. Research is being done and there are high hopes there will be more efficient medications coming up. I don’t know where you live but if possible go to a hospital that is rated as a Center of Excellence.

    Congratulations on your marriage. Happiness is good medicine!

  • CArol Madara

    Member
    June 6, 2024 at 7:47 pm

    I am now 77 and was diagnosed in 2022. I have ILD caused in part by Scleroderma and have been on Ofev for the last 2 years, and have raging diarrhea partially controlled with Cholestyramine. packets. My last Pulmonary Function test and x rays showed my disease is now moderate scarring. I have been told I am probably too old for a transplant. It took at least two years prior to my diagnosis to identify that the coughing and Shortness of breath (sob) was due to ILD

    I would have your Pulmonologist sit down and explain your test results, plans for your treatment or transplant and live your life to the fullest. There are new drugs coming along and I’m trying to get into a trial. Look for any and all medications you can take right now to try to slow the disease now and be proactive.

    No one can predict how we will do, or how long we will live. I try not to dwell on the disease and make the most of every day. That may sound like “little miss sunshine” but for me it’s the only way to deal.

    Good luck.

  • Mary Elizabeth Petrucha

    Member
    June 7, 2024 at 7:04 am

    I too am pretty much overwhelmed with all of this. Many of the same issues of others here but many calcification and also granulomas, plus other stuff, RA, lupus vasculitis , etc. I am at times so so overwhelmed that if not for my pets I would not want to be here. I think ppl who don’t experience this really don’t know. It is good to see others and issues that I can relate to. Bless you all.

  • Pamela

    Member
    June 8, 2024 at 1:12 pm

    Hello Everyone!

    It’s been a busy week at work so apologies for the later response. THANK YOU for the information from all of you. I do speak with a great doctor who is the head of their department here in Houston, but they don’t have ILD and don’t deal with it day to day, a lot of the people on this forum do, so I learn a lot from reading different post and suggestions so I appreciate the feedback!

    Terrig, I will write out my questions for sure, great idea. You are the first other person I’ve ‘met’ with Sjogren’s and ILD together, looks like we are taking the same meds so that is comforting.

    Pastordan, I appreciate the advice to not panic, realize there are many with similar or worse symptoms still living their lives. Congratulations on your first anniversary, I think I am coming up on my third.

    Sandyman, I needed a swift kick in the arse for not taking my meds. I started to take them now, let’s see how this goes, will report back if the doc says anything new or if I need to change any habits.

    Jon, I appreciate the info and the positive thoughts. I looked up how to cough properly, thank you for that advice.

    Adele-friedman, I never thought about the correlation between Ofev having to work harder because I wasn’t taking my Mycophenolic, and vice versa, thank you.

    Babe, I had heard about ‘Centers of Excellence’, started reading more on these centers, I think this is a great idea and will connect with the closest one in my area thank you.

    CArol Madara, I’m sorry to hear Ofev does mean things to you. I know it used to for me, but I took it for a few months along with Mycophenolic Acid, and I realized that if I didn’t take the two meds together, spaced the doses out a couple of hours apart and I took them with food, my insides did a lot better. I appreciate a little miss sunshine. My husband and I just got back from our honeymoon in Bora Bora, I promise to do my best to live life to the fullest.

    Mary-elizabeth-petrucha, I couldn’t agree with you more, it is wonderful to have a community that is able to relate, for that I am grateful.

    Blessings to all and thank you so much for your help,

    Pamela

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