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C Scan timing and scheduling
Has anyone heard of a standard scheduling for follow up C Scans to show what is or is not happening in the lungs.?
Has anyone been told by their BE pulmonologist doctor how often one should have a C Scan as a follow up to show what is or is not happening in the lungs?
I ask because I sure would like to know, since October of 2024 was my last C Scan, what is and is not going on in my lungs.....improvement, worse, stable etc.?
With all the work we must do for ourselves in hopes of improvement is why I ask and as well because of what they are saying medically about having too many C Scans due to possibly causing the big C.
I guess most of the times in between C Scans to know how we are doing it is based on is our symptoms, the doctors stethoscope and sputum submission????? Any thoughts or information?
Barbara
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@blm1007blm1007, My last CT was in December 2023, previous one in October 2021. Dec 23 showed that the biggest module I had in 2021 was no longer there. I have met every 6 months with my pulmologist after that. Last time was this past week. I rarely produce sputum, even after using the Aerobika instead of the Acapella. (I do prefer the Acapella, I think I will go back to it). My PFT is checked at each visit. It is in the normal range for my age. I rarely cough. I exercise daily, do my airway clearance (1 hour and a half morning and evening). I eat very well. My doctor says I am doing well, no flare up, no exacerbation. My grandkids visited on several occasions, while incubating something or being overtly sick: my husband got sick, I did not. My doctor says there is no reason to do a CT scan at this point. He emphasizes that CTS are not benign.
He told me last week that if I have an exacerbation or flare up, he will have me nebulize NAC. I have never heard of that. I was a bit surprised. But hopefully I won't have a flare-up or an exacerbation. I am working hard to avoid that.
Sometimes I do wonder if indeed there is any change in my lungs. I have been using the Acapella for over a year, the first 6 months I was able to cough up some sputum and a few plugs. Did it clear it all? Or are all those bacteria peacefully colonizing my lungs before triggering an exacerbation? I don't know. But since I cannot tolerate antibiotics, I have to focus on airway clearance and exercise. Nothing else I can do.
Best wishes of great health to all of us!
Googled: NAC "N-acetylcysteine (NAC) is a medication and dietary supplement with anti-inflammatory and antioxidant properties. NAC-based drugs can also break up mucus in the lungs and airways. This helps people with chronic respiratory diseases breathe easier."
If this is what your doctor was referring to. Many others mention using NAC on the Mayo Connect, that they do use often or just as needed or required.
I cough up sputum and plugs nearly every day. Tiring to say the least since I nearly have to clear what comes up to my throat all day long. We all are so different.
PFT is off the scale in the right direction but CT's and sputum test say MAC/MAI infection.
I feel fine, no flare up or exacerbation either, as yet.
Curious for clarification.....what did he mean by, " He emphasizes that CTS are not benign."
Thanks for your reply.
Barbara
@blm1007blm1007, yes I am familiar with NAC, however I have never heard before of nebulizing it. But he was very firm and confident about it. I told him that on MayoConnect, quite a few people state that they take NAC pills, but I don't remember reading about nebulizing it.
He means that CTs expose the lungs to a fair amount of radiation, which in X years could trigger cancer. I am not completely at ease with not having a CT this year, however since I can't take antibiotics, even if the CT were to say ALARM, you are SCr.., I would still be doing my airway clearance and exercise fingers crossed, nothing else. So in all fairness, it would just worry me more.He mentionned that new BE drugs are coming up. He said the criteria for the Arina-1 trial are very specific and I do not qualify for it. And that most likely the criteria for prescribing it would be the same as for the clinical trial. He said that is generally how it goes.
I am nebbing 3% twice daily, I asked my pulmonologist to prescribe PulmoSal 7% and he agreed, but he added: if it makes you bleed, stop right there, wait 2 days then go back to 3%.
I am looking forward to trying the PulmoSal, hopefully it will help me get rid of the colonies.
I still work full time and my full time is a big full time. There are so many hours in a day. I do all I can to take care of my lungs. (3 hours a day on clearance plus 45 minutes exercise) My pulmonologist is a good doctor. We talked for over an hour last visit. He told me "some people do better when they are on a lot of meds. You are the opposite.". It is true. I take a few supplements and I work hard. And I pray hard that it all continues to feel stable as it does now.
best wishes of great health to all of us!
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4 ReactionsSounds like you are doing a great job. I like your pulmonologist! Great that you have found one who is knowledgable and attentive to your particular situation.
Anna
@annagh. Yes, he is very nice. He really listens, tries hard not to overtax the body of his patients with toxic meds and tests unless it is absolutely necessary. I feel he cares and he is in my corner, that matters a lot. I have not met other doctors like him. I work hard. I don't know if I do a great job but I try hard and I try things, like supplements, red light therapy, etc. I want to do all I can to prevent degeneration, I might be naïve, time will tell.
Best wishes of great health to all of us!
@gigiv My local pulmonologist prescribed Acetylcysteine (nebulized). I filled the order but the product is not at all user friendly. After talking to the pharmacist and a bunch of emails back and forth with the doctor, I just didn't have confidence in it. It is too long a story for now but basically it comes in these big bottles, you use only small amounts, that you have to measure out of the big bottle, there is no way to keep everything sterile, you refrigerate the drug bottle but it can only be refrigerated for a few days and then needs to be tossed long before it is used up (due to contamination concerns). I just felt like there was a high potential for contamination across the board. Since neither my local pulmonologist or the pharmacist seemed to know much about how to actually use/store the drug, I am holding off on starting it until I talk to NJH in June. One more question for the list!
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1 Reaction@bayarea58, please let me know what NJH says about it when you meet with them. It does not make sense that it does not come in individual sterile vials. Hopefully I will not need it. I would rather take the NAC pills than nebulize it. Thank you for sharing this. If my pulmonologist orders it at any point, I will ask him to get it in individual vials or prescribe something different.
Best wishes of great health to all of us!
I agree with you on the nenuluzed NAC. I started on it in January. Fairly expensive as well. Once the bottles are opened they need to be refrigerated and used within I believe 96 hours. And yes, each dose has to be measured out. They gave me a plastic eyedropper so cross contamination is definitely a concern. It also has a sulpher component to it so smells/tastes like rotten eggs. Watch for the side effects as well. It can cause tiredness and mouth sores. Also not indicated for patients with low blood pressure. I discontinued it after two weeks.
I asked to be prescribed Acetylcysteine to be used in the nebulizer. Mine came in individual single-dose glass vials. Perhaps you could ask your pharmacist for this?
@oaktree, did the nebulized Acetylcysteine help you? Was the rotten eggs smell tolerable?
Best wishes of great health to all of us!