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Velma
09-28-2014, 07:13 PM
I have asked this question in my introduction so please forgive me if you are seeing this for the second time but I am new to the site and just figuring out how to post a thread. Lol. Anyway I was diagnosed 20 years ago and have been told I have limited WG in that the flares over the years are usually in the ears, nose, and lungs. I am on Methotrexate and 20 mg Prednisone as I have had a recent flare with a few nodules in the right lung. Problem is that in the left main bronchial airway I have had scarring and it is closing off my breathing to the point of a collapsed lung. So docs thought lets do a stent to hold it open. BAD IDEA. 17 months later the stent is embedded and cannot come out. The scar tissue is now forming in and around the stent as well as other areas withing the airway. Solution: bronchoscopies every 4-6 weeks to lazer out any scar tissue and open me up to breath. Does anyone have any solutions to slow the scar tissue from forming? Is this a WG issue? My lung dr is useless and lets the thorasic surgeon call the shots in the treatment.. which is surgery and nothing else. I am looking for a different lung specialist that might have some form of research that will help slow the growth of scar tissue. Do I need to change WG meds? I am so confused at what to do and therefore do nothing. But now I feel as if you might be able to help me find a solution. Thank you in advance for any help or support.
Velma

gilders
09-28-2014, 11:49 PM
Hi Velma.
If scarring in lungs is anything like scarring in kidneys, then I'm afraid I don't think you can slow it down.
After one of my relapses I seemed to be heading in the right with some things (less nose bleeds and general improvement in ears and breathing issues), but kidney results were getting worse. After another kidney biopsy it became apparent that although I was in remission (i.e. no WG activity) the damaged caused by WG in the kidneys had stopped, but the scarring carried on spreading for a couple of months after I was in remission. I'm rather sure if there had been a way to stop/slow down this scarring my Dr would have done it. Admittedly I am under the care of the NHS and not all treatment is available, they also don't like to tell you if treatment is available by going private (I guess it looks bad on the NHS if they're basically telling you that we can help, but won't due to budgets). Therefore there still is a slim chance that there maybe a way of slowing down scarring.

Velma
09-29-2014, 11:27 AM
I agree that the doctors don't tell you everything and I think sometimes they are in it for the money whether it is for their own practice or a hospital they work. This is something that is new for me and I guess the scarring is not really a wg issue but just as bad as if it was a flare. At least with a flare the meds can be adjusted or changed but with this there are no answers it seems. I am praying for a miracle. I have messaged my WG doc and asked for him to refer me to a different lung doctor and I will let you all know how things are going as I find out more information. Lord knows I have tried herbal meds, changing diet, exercising more, anything and everything to reduce inflammation and slow the scarring process. Nothing seems to help make any difference. Just a loss for what to do next. The hardest part is that this has effected me personally but my 15 year old and 23 year old have had to adjust their lives for me because of my health issues. That is the worst part. Definitely a cruel disease. More news later as I get more information. Thanks everyone!

Psyborg
09-29-2014, 10:00 PM
I agree that the doctors don't tell you everything and I think sometimes they are in it for the money whether it is for their own practice or a hospital they work. This is something that is new for me and I guess the scarring is not really a wg issue but just as bad as if it was a flare. At least with a flare the meds can be adjusted or changed but with this there are no answers it seems. I am praying for a miracle. I have messaged my WG doc and asked for him to refer me to a different lung doctor and I will let you all know how things are going as I find out more information. Lord knows I have tried herbal meds, changing diet, exercising more, anything and everything to reduce inflammation and slow the scarring process. Nothing seems to help make any difference. Just a loss for what to do next. The hardest part is that this has effected me personally but my 15 year old and 23 year old have had to adjust their lives for me because of my health issues. That is the worst part. Definitely a cruel disease. More news later as I get more information. Thanks everyone!

Velma,

I also have stenosis in the Bronchial tube. My doctors do not want to do anything like a stent because of exactly what you are experiencing. Is there any way you could make it to Johns Hopkins in MD or Cleveland Clinic in Oh? They both have excellent specialists that may have options that we arent' aware of.

Thanks,
Bob

Velma
09-29-2014, 11:22 PM
Bob you are the reason why I joined this group.. no offense to anyone else out there.. but I was desperate to find someone.. anyone.. who was suffering the same things I am experiencing. Thank God. Okay first of all NEVER do a stent in the airway. I have cried every time I have to have it opened up and over the past 17 months it has been close to 20 times. It is so risky each time and my lung has collapsed afterward even. I live in central WV and could travel to either place if I thought they could help me. WVU hospital sent me to Pittsburgh who did this to me. My lung dr is useless and agrees with the throasic surgeon and even agreed to a SECOND stent. Which I pitched a fit and said it made no sense to put in a second stent when the same thing would happen or even worse. I am desperate to find any answers and will begin to contact their departments for help. Thank you sooo much for the information. What are they doing to help you? Are you doing routine bronchoscopies to open you up or using medications? I take Mucinex max strength twice a day to help with breaking it all up along with prednisone 20 mg. Again thank you so much. I will keep you posted.

Psyborg
09-30-2014, 01:15 AM
My breathing finally deteriorated to the point that they did an cryo-ablation last year. Basically they freeze the scar tissue so it drops out. I ended up with a closed off left Bronch as well and my lung was trying to collapse. With a quick trip to the ER I was able to get everything back open before it collapsed completely. The relief did last for a while. In Cleveland I see Dr Villa Forte (Rheumatology) and Dr Muchuzak (Pulmonology). I see Dr Allen at OSU for pulmonology locally in Columbus. If Cleveland is within a reasonable drive for you I'd contact their Rheumatology department, they can also set you up to see a Pulmonologist.

I'm not sure what they can do once you've been stented, but they have great Doctors who can answer that question way better than me.

mrtmeo
09-30-2014, 10:50 AM
Hi Velma,
I found this NIH study showing that all metal stents were removed successfully.
Removal of covered self-expandable metallic airway ste... [Chest. 2005] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/15705985)

Velma
09-30-2014, 11:14 AM
I called the Cleveland Clinic today and the fella left me a message saying he would call me again tomorrow..( I had to run a few errands and was not home at the time.) Anyhow I wrote down the names that you mentioned at the Cleveland Clinic and will ask specifically for them. I have a good dr at UPMC in Pittsburgh who is the head of the Arthritis and Autoimmune clinic. He seems to know his WG stuff but the lung department is ridiculous. It is about 4 hours for me to drive one way to OH but I will do what I have to do to get this fixed. Thanks again for all your help. I will keep you posted! :)

Velma
09-30-2014, 11:16 AM
The thorasic surgeon I have said that it is too embedded to remove and that it would be easier and less risky to remove the lung then the stent. Bob has offered me some great advice and leads at the Cleavland Clinic and I am trying to get in there. I will mention this to them though and see what they say.
Thank you for your help.

mrtmeo
09-30-2014, 11:49 AM
Good luck, Velma and I will be praying for you!

Psyborg
09-30-2014, 09:57 PM
Good Luck Velma, Hopefully they can do something for you. It's too bad the doctor you had went the stent route. Unfortunately sometimes they don't realize what they don't know regarding Vasculitis. :(

drz
10-02-2014, 02:22 AM
The thorasic surgeon I have said that it is too embedded to remove and that it would be easier and less risky to remove the lung then the stent. Bob has offered me some great advice and leads at the Cleavland Clinic and I am trying to get in there. I will mention this to them though and see what they say.
Thank you for your help.

I agree you need to see a Weg expert that is a lung doctor. Each of the Weg centers should have a couple or more.

Psyborg
10-04-2014, 09:17 AM
Velma,

I saw Dr Muchuzak today for a Bronchoscopy, and took the liberty of talking to him about your situation.

THanks,
Bob