new member and bronchial issues

[Velma]

Although I am a new member to this site I have had WG for 20 years now and have had flares off and on throughout the years. Right now I am taking the shot form of Methotrexate and 20 mg prednisone while also doing Rituxan every 6 months. I have had a few nodules appear in the lungs but it is manageable and somewhat quiet. Issue is that there was scar tissue closing off the left main bronchial airway. Doctors decided to do a stent to open it up. BAD IDEA. The stent is embedded and cannot be removed and was placed in me 17 months ago. I have had 19 bronchoscopies to open up the stent that is now closing off with scar tissue and lazering other areas within the airway that are now forming scar tissue as well. These surgeries occur about 6-8 weeks apart and have had me have a collapsed lung twice. The doctors do not offer any solutions and I am soooooo sick of constant surgeries. Has anyone else had this issue and if not what can I do to slow the scar tissue from forming? Is this a WG issue? Do I need to change meds? I am so lost as what to do to end this nightmare. Thanks for your help. Velma.

[Dirty Don]

Welcome Velma, glad you found us. Share, ask, rant, whatever...this is a great site to get info and caring on top of what we already have. As for the scar tissue, meds, etc. - really sounds like you need docs who know what they're doing and not just guessing and hoping and reading out of a book. Best to you.

[mrtmeo]

Hi Velma,
I watched a video of a laryngologist, Dr Robert Lentz who mentioned that the stents are very difficult to remove, but I don't believe it is impossible.
https://www.youtube.com/watch?v=BifdvorrUJ8

Scar tissue is always a problem, but i'm sure there is a way.
Can you contact someone from the Vasculitis foundation for someone who specializes in this?
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[Velma]

Thanks for the support I greatly appreciate all the help I can get. They said the stent that was placed in April of 2013 was by a doctor who left the hospital and now the new thorasic surgeon said the first surgeon used the wrong size and/or type. It is too dangerous to try to remove and is stuck for life. So his idea was to put in a second stent to help with the scar tissue forming below the stent. I would not let them because I said if my body is rejecting the first and forming scar tissue on it what would it do with another one. He was not happy but I refused a second stent. I am still fighting.. it has been 20 years and this is yet another battle to put under the win column. Lord willing.

[mishb]

20 years Velma - you can certainly teach us a thing or two about this horrible condition.

Welcome to the forum and I hope you continue putting up a great fight

[Velma]

I have often wondered "Why Me?" I think that those of us are destined for greatness and we are born warriors and fighters. Lord knows we have to search for answers, scream till someone listens, defend our decisions, and be vicious with our beliefs when it comes to treatment and answers to our questions. I know I am stronger than I ever thought I would be and so are all of you. So lets fight, fight, fight!!! (gonna kick some pulmonary butt today.. already made a call or two!) We can do this! okay update later.

[morningsunshine]

I like your attitude, Velma! :-) It sounds like you are a fighter, especially after dealing with WG for 20 years. Best of luck with your calls today!

[Psyborg]

Welcome to the website...I'm sure we have plenty to learn from you.

[annekat]

Welcome, Velma! I have no experience or knowledge in the areas that concern you right now, but am glad you have found us after all this time with WG. This is a great group and has made my life with WG easier beyond measure! It is nice to know that one is not alone and can always talk to someone who is going through similar stuff. I hope you get your answers about the bronchial issues, and would encourage you to find a WG specialist who is in the pulmonary field. One place to look is here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . These docs are available to consult with your docs for free if you can't make a trip to see them. Good luck, and I hope we keep hearing from you!

[kaysee]

Welcome to the group Velma. Hearing that you have had this for 20 years gives me hope. I am in awe of your fighting attitude and pray that I too can be the warrior against this disease that you are. Keep up the fighting attitude.

Karen, dx'ed April 2014

[kmac14]

Hi Velma, just been reading this and you are similar to me with the length of time living with wg and the lung/scarring/stenoses issue. I had the lazer burning too but when I moved home, they cut off my specialist care. Never had stents. I am UK. Seems simple but if you can swim then swim and do it every day. It is the best thing for my lungs - better than the lazer burning and has perhaps not halted but definitely vastly slowed deterioration.