Bronch...to do or not to do

[mojorisen]

interested in some feedback bout these procedures. im not going to go into detail about what is happening with my son, cause the last time I did that here, I was told by a fellow poster that im not doing all the right things for my son and he is going to die because of it. so, if this change in treatment doesn't work and we get the same result for the 3rd time. doctor said probably a bronch is needed and iv meds. now when I was disgussing this with the pt doctor she is against them. she says they are very dangerous and stir up things in the lungs, and doesn't even perform them on adults. so we went back and forth about this, cause I said that I know there is something in his lungs causing all this, and since my son doesn't cough up a sputum, they swab him, its hard to get a good sample. and I think he needs the bronch. he has had on years ago and recovered fine, it didn't damage anything, and we did find the source of the problem at that time.

so feedback please, of any kind. just as long as it not horrible like my son is going to die cause of my doings.
thank you so much
-------------------------------------------------------------------------------------
Elizabeth

 

[Printer]

Elizabeth:

I am very happy that you read my last post and took it to heart. No doubt that your son is better for it.

Almost everyone with CF has had at least a few bronchs. It is a necessary diagnostic tool and that is why the Doctors require them. They will also require X-rays, cat scans and even MRIs. All have a slight risk, but not as much risk as if they are not performed.

What is a "pt doctor"?

Bill

 

[Aboveallislove]

Dear mmomism so sorry for all the worry while you try to figure out the right course. I'm assuming the pt doctor is the primary physician? If so, I would not see her opinion based on her general practice. We haven't had one for son and I can imagine it will be scary having to do, but from all I've read here there are many cases where they find what's lurking in the test and then can treat and get good results....it isn't something routinely done because more pain and risks but sounds like this really is appropriate and needed now. Hang in there mom and please know ill keep you and your son n our prayers.
Love

 

[mojorisen]

the pt doctor is his respitory therapist...sorry bout the confussion. I was exhausted posting this. Bill I didn't take any of ur advice, cause you were the one who told me my son was going to die. no he is not doing better cause his pft is back down. please don't comment on any of my post please.

yes I agree that if we go back in 6 weeks and his pft is up, then go back in 3 months and its back down he needs the bronch. or if its still down in 6 weeks he needs it.

--------------------------------------------------------------------------------
Elizabeth

 

[Aboveallislove]

Hmmm, well I still think the rt advise is wrong, but maybe discuss with your cf doctor so she can reassure you....under the circumstances it sounds truly like the best course and that the risks from what our cf doctor had said early on aren't at all like what your rt said and many here have spoke of having good results after a broncos cope discovering what is lurking. Maybe search in the search box for the brionioscipe as a word and you can find some of the old posts to et a better feel ....hand in ther

 

[scrapper1264]

I am so sorry you are having to go through all this. My son just had a bronch last month and there was never a mention about things getting stirred up. I would definitely take the pulmonologist's advice over a pt. My son's pulmo recommended it because he has a problem coughing up a good sputum as well, and he has other issues as well. A bronch is an excellent way to see what kind of bacteria is lurking there. Of course I was a little nervous about it, but he did fine with the procedure. Hope this helps!

 

[Printer]

Elizabeth:

I don't need to comment you said it all "no he is not doing better". Willful neglect is a crime in all 50 States.

Bill

 

[RobinB29]

Printer

Elizabeth:

I don't need to comment you said it all "no he is not doing better". Willful neglect is a crime in all 50 States.

Bill

Printer, she asked you to stop posting on her threads and I think you should. You seem to thrive on bullying people on here. It needs to stop.

 

[ldevoti]

As an aside, you can put members on an "ignore" list. Then I don't think they will see your posts. You will see that they have posted, but will have to take them off of ignore when you are logged in to see what they said. Sometimes the best thing. None of us need the negative energy some people give off.

 

[RobinB29]

Thank you for that information Idevoti, I have seen some folks on here that just seem like nothing more than a wasted opportunity for organ harvesting. I will use this tool immediately on at least one individual. Thank you!

 

[keefer11]

Every doctor and hospital is different. I am a 31yo and have been on IV's several times and have never had a bronchoscopy. My doctor has never even brought up doing one(maybe I'll ask him why at my next appt). My sister didn't have bronch's until she had her transplant. BUT, I know other hospital's and doctors where having a bronch is totally normal and part of the routine to figure out what is going on with the lungs. My friend's daughter gets a bronch every time she has to go on IV's. So like I said every doctor/hospital is different.

If your gut is telling you to have him get a bronch, then get a bronch. You've been through it before so you know the process and it helped determine the cause last time, so hopefully it will this time. Follow your mother's intuition

 

[RobinB29]

I wondered about the bronc testing myself, not to sound like some conspiracy theory nut but I've wondered if the reason the CF clinics are pushing for these tests suddenly have anything to do with trying to determine how many of us might have a mycrobacterium infection as a direct result of the long term azithromycin therapy many of us have been on for years. I don't really think it's about what the test has to offer us so much as we are their lab rats and they are trying to figure out how big of a mistake they have made. Read the article here:
http://www.ncbi.nlm.nih.gov/pubmed/21804191

Sometimes I feel like CF docs aren't there to help us so much as study us? I get it, all medicine comes with a price and the work they are doing has improved our lives, but I'm also the type to question and research for myself.

 

[nmw0615]

I've had many bronchs. They aren't my favorite things and if there's an alternative idea, I like to try that first. That said, sometimes bronchs are a necessary evil. They can aid in loosening up the mucus and for getting an excellent sample to test. I think, given that this is his third go at treatment, if it doesn't help, there could be something going on that a bronch might help bring to light.

I'm not sure how old your son is, but ask him for his opinion. Even if he's only in his preteens or early teens, he likely has a good idea about what he wants to do.

 

[becabee]

Hello, sorry you are torn on this decision. Its so hard to know what is right to do for our kids. Every procedure is a scary one, having been through several with my grandson. However, I fully support the bronch. It can clean some of that crap out of his lungs instead of letting it sit there and grow more bacteria, and it can give you a much clearer picture of what is already there. My little guy is 8 and has a g-tube, a port and had a colostomy tube put in. Don't want any of them but if it lessens some of his pains, and allows him to breathe a little better, if only for a time then I'm for it. Hope you figure out whats best for you.

 

[mojorisen]

thank you all so much for your feedback. it has given me relief about the go around I had with his rt. im really hoping the switch to symbicort fixes this. cause his doctor thinks this time its asthma related. cause when he did the first test it was in the 70's low. then did his xoponex waited 20 min then did the test again and it raised to the 80's. now the last time when he did the test before and after xoponex it stayed the same. now my intuition cause I knw my son and past experiences with his lungs. I think when we go back in 6 weeks after starting the symbicort his function is going to be back up. then when we go back in 3 months for his regular clinic its going to be down again. im seeing the pattern here. his patterns have been consistant in the past. all iknow is im so scared. aidan has NEVER had this serious of a lung problem. its scary and unsure. I don't know why this is happening. im crying a lot. hard to keep it together.

again thank you all for your support! that is why I come on here. I have been holding back from our community cause of what was said to me last time. but I know there are good, caring, sincere people on here and I value that so much

oh and how do I block someone?

---------------------------------------------------------------------------------------------
Elizabeth
mama to Aidan 8 w/cf

 

[njlins]

I think a mom knows best. We all want what's best for our children. It is so difficult when your son has a life threatening disease. So listen to your doctors, follow your own intuition since you said that last time they got to the source of the infection. Actually I am having my first bronch tomorrow as I am fearful but know this is what is needed. My doctor asked for me to do it. Long story but best of luck and so so sad that you had such negative comments before. Sad indeed. Prayers

 

[2005CFmom]

Sorry I can't remember your first post so don't quite know the whole story. My daughter has had one bronch. She did well for many years (not hospitalized until she was 14) but then her lung function dropped ended up inpatient lung function came again and then dropped later that same year. 2nd hospitalization they ended up doing a bronchi to make sure they had a good sample of what was in her lungs. She had done well for so many years, no change in her cultures, and not was having problems they were concerned they weren't getting good sputum samples and wanted to make sure they were treating her appropriately. Yes bronchs do carry some risks, but if your son in struggling and the sputum cultures aren't accurate not having a bronch could be more damaging. Bottom line, I don't think bronchs should be done routinely just to take a look. Only if they think something is missing in the sputum cultures and treatment would change as a result of the bronch. Good Luck

 

[2005CFmom]

And to block someone...
Click on setting on the top right of the page.
Click on edit ignore list on the left hand side of the page
Type in use name you want to ignore then click Okay

 

[katethekid]

I am 27 and having my first bronch done soon. However, I know people who have them every ur or every 6 months. Some people cannot give a good sputum sample, some can. My issue with spiting in a cup is it only gives your doc a look at a small area, especially if the sample is small. For example, I have cultured MAC a couple times, but it doesn't always show up because my mucus is getting thicker and harder to get up. I have to bring my cups home to do with my hypersal and vest. All in all, if your cf doc recommends it, go for it! Good luck!

 

[sroeseler]

My 4 year just had his first wed. His o2 lvls never showed any decrease but he couldn't beat a cough and after a few antibiotics we got an xray to find one lung collapsed. Long story short. He had a bronch to see of we could help clear out and the lung inflate. We were told it's like a mud puddle, they go in suctioning but stir things up so it's possible to seem worse for a few days before getting better. But he did very well and shows immediate improvement, no extra cough or blood

interested in some feedback bout these procedures. im not going to go into detail about what is happening with my son, cause the last time I did that here, I was told by a fellow poster that im not doing all the right things for my son and he is going to die because of it. so, if this change in treatment doesn't work and we get the same result for the 3rd time. doctor said probably a bronch is needed and iv meds. now when I was disgussing this with the pt doctor she is against them. she says they are very dangerous and stir up things in the lungs, and doesn't even perform them on adults. so we went back and forth about this, cause I said that I know there is something in his lungs causing all this, and since my son doesn't cough up a sputum, they swab him, its hard to get a good sample. and I think he needs the bronch. he has had on years ago and recovered fine, it didn't damage anything, and we did find the source of the problem at that time.

so feedback please, of any kind. just as long as it not horrible like my son is going to die cause of my doings.
thank you so much
-------------------------------------------------------------------------------------
Elizabeth