Ayla's CT revealed 3 Cysts in her lungs. When the nurse called she said the Dr. wasn't worried about them and there was no plan to treat them. Just to watch them.
4 years old and has lung damage after only culturing psuedo one other time (other than now) in her life and no hospitalizations related to her lungs?? I just don't get it!!
The nurse said I would never have known how long these cysts have been there since she has never had a CT of her lungs before yesterday.
I called the Dr. and spoke with her directly. I felt much better after this. She told me that she has seen Cysts with CF & without. That most cysts go away on their own or with treatment like she's on (rx)-she will want to do another CT in about a year. She told me about treatment for these if they got bigger and what signs to watch for. Knowledge is definitely power when it comes to all things related to health.
The Dr. impresses me with her kind and gentle demeanor, I was very worried and thinking about all kinds of scenarios. She really put my mind at ease. I told her that I felt like we had missed something just relying on chest X-rays all these years, that maybe this damage (cysts are signs of damage) could have been avoided.
She just plainly said that ALL Dr's do things differently, neither way is wrong or right. But for her she likes to really get a good picture of what's going on in the lungs. Ayla's lungs are tricky-they always sound so clear and healthy when that may not always be the case. And we definitely need to know about it so we can treat it!
I am just praying that these small cysts respond to treatment and go away on their own by the time we take another look.
Last week was full of CF reminders and if we can avoid it, I would like to have a normal week full of healthy reminders!
-krista
Im curious to know how many clinics rely solely on chest x-rays to view the lungs??
My New Treatment: O to the 2
8 years ago
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Hi krista sorry to hear about the cysts. My first initial thought was the cystic part of cystic fibrosis. I know that cysts and fibrosis form on the pancreas (hence the name) but maybe it can happen in the lungs too?
ReplyDeleteAny extra info you have I would like to know as this is unknown to us too. What treatment would be the next step if things change?
Hopefully it will all clear up swiftly though.
To answer your question, sophs clinic do annual cheat xrays and more often if needed. If soph were poorly and the xray was inconclusive or showed something then she would have a ct scan, but they aren't routine.
There has been talk of adding ct's to annual review but I guess from our point of view (uk) it's all about cost.
Please keep us posted and I hope things improve quickly.
Xxx
Hi Krista -
ReplyDeleteI'm so sorry to hear about Aylas cysts. I hope that with some rx treatment they will go away or at least continue to be a non-issue. I totally get what you're saying about "what-ifs" and it's hard not to think about everything that you maybe could have prevented or done differently or whatever, but the reality for me was that all of that wonder and worry and frustration wasn't getting me anywhere because it was in the past.
Drew has had 2 CT scans and he is scheduled for a hi-res one in the fall, but I don't think that is the norm for our clinic (his malacia and airway abnormalities are the real reason they are doing it). When I attended the Thomas Boat research symposium there was a lot of discussion about implementing regular hi-res CT scans starting very early on to catch things before the damage is done, but that's all being weighed against the amount of radiation a person would receive if they got a CT scan once a year for as long as they lived.
I'll ask some more questions about it at our clinic next time im there and let you know what the "norm" is for Cincinnati.
I hope that Ayla is feeling better and that you are feeling well!
thanks girls for the concern and info. Gemma- I will keep you updated as well. Our clinic does xray but if it doesn't show or is blurry she will do a CT. CT's are being implimented more and more on an annual basis at the clinic. If the cysts were to grow larger then they could possibly burst and cause shortness of breath there would be unwanted air in the lungs that would have to be removed. That's really all I know. Erin-thanks I am feeling good and ayla's doing good as well. it's really strange b/c she's not even sick and hardly ever coughs...I am glad to know about them and that's bc of the CT. You are right wondering about the past and what we could have done never gets us anywhere. I just always hope I am making the right decisions when it comes to her care. I began to have a feeling about changing clinics a few weeks b4 i posted about...thought it was a mom's intuition thing....and turns out changing clinics provided more of an understanding of the condition of her lungs and how to treat them...thank God for that!!!
ReplyDeleteI hope things clear up on their own with Ayla's cysts. We have been at our new clinic for a year and so far a chest x-ray is all the do- I wonder now if we all should do CT scans too to check for these things. Thinking of you...
ReplyDeleteAs far as I know our clinic only does x-rays once a year as standard. I'm not sure I'd be on board with annual CT scans without cause - too much radiation. Perhaps every 5 years or something like that. I could go for that.
ReplyDeleteI hope Ayla improves quickly and the cysts go away.
Hi
ReplyDeleteMy name is Jenna and I came across your blog. Ayla is an amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com I hope Ayla improves guickly and the cysts disapear. I will be keeping her in my thoughts.
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ReplyDeletethank you for all the comments on today's post!
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