COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
Hello, I'm new to the support group and am looking forward to getting to know you all. They told me I had a giant bulla in my upper right lung about 7 months ago after a bout of bronchitis. Up to that point I had no problems other than a little shortness of breath when going upstairs or working hard so you can imagine my surprise even though I am a long term smoker.
I was so scared and felt like I wasn't getting much in the way of answers or encouragement from the doctors. I have come a long way since then but would love to chat with people who are going through the same thing.
I was so scared and felt like I wasn't getting much in the way of answers or encouragement from the doctors. I have come a long way since then but would love to chat with people who are going through the same thing.
The St. Lukes hospital is in Houston Texas but yes they are in MO also. You are the first one I have talked to that knows about this :) My Pulmo doctor is the one who did the footwork and found out about it. We sent my scan results to them and I did not qualify for the because mine is too big so we did not have any other tests done. If I had qualified we would have dug deeper. It looks like a promising alternative to LVR :) Maybe it is in my future?
When I was first diagnosed I had no idea how to find a pulmo so asked my gp and he sent me to the first one. He has a very good track record but wanted me to immediately have LVR. At that time I was still trying to get my head around what was happening to me,,,,still getting over bronchitis.....and didn't even know what questions to ask. So I went for a second opinion.
The second doc is at the same hospital but not in a pulmo group. He is the one who said "let's slow down a bit and do a little research" He called some colleagues while I was there and that is what started us down the road of finding out about the other procedures. He has a good bedside manner and is very encouraging. One of the first things he told me was "don't be scared,you have many years left to live, we can do this together. Let's be sure we are doing the right thing"
That was probably the first time I took a breath and relaxed a little since this whole thing started.
Not scared or discouraged at all, just soaking up as much info as I can find.
I hope you are doing well :)
Keep doing yr research, sounds like you are going in the right direction.
Found a few sites that may be helpful:
1) Bullous Emphysema
2) BLVR
3) Endobronchial coils/r j criner
4) Endobronchial valves/ Librate Study
You might want to check this site just for some general info: This doc has a lot going on. If it's happening in my area, then bet you can find it in yr region.
Emphysema/COPD Clinical Trials- Temple Lung Center
I am fortunate to live near several major med universities... Hope it's like that for you.
Good luck w/your research.
Really like yr 2nd doc's comment..."Let's be sure we do the right thing".
Thanks for your suggestions and the info you have given me.
Is it allowed to ask if you use any herbal remedies? I take tumeric and ginger and it keeps inflammation in check :)
No special herbs./.I am on a seafood diet../..Everything I see / I eat !!
Trying to gain back some weight.
PF stands for Pulmonary Fibrosis (which has several confusing abbreviations; PF is the actual scarring of the lungs)---PF is in the restrictive disease class labeled under "Interstitial lung disease" ILD.
I was Dx'd with COPD/emphysema in 2010 by my GP (general practitioner). She said she could handle it so I never had any further tests than a spirometry, walk test & a sleep test.
In 2012 I had a severe exacerbation that about killed me. at that time I insisted on seeing a pulm---who did an HRCT & 'in chamber' PFT test. I was then told I had the PF/ILD.
I'll never know if the scarring (PF) was caused by improper care.
So I am a firm believer in being seen by "specialists" and having the correct testing done from the start.
and getting second opinions....I think you are very wise to have gotten another opinion & join this board to learn all you can. (i joined this board AFTER that exacerbation---wow, did i learn a lot fast!)
your posting about the dr telling you that the bullae could burst is the first time i've heard that since my pulm warned me of that when I had the surgery---so that comment really drew me to this post
:)
Also I am in Beaumont near Houston. Sounds like we have some Texans in here, y'all.
Bringing back memories, One of my daughters was a nurse's aide at our local hospital when she was in high school. Now-a-days this job requires certification,with something like 80 hrs of classroom training.
She loved it and eventually became a RN.
My GP jumped on this like a duck on a june bug. Had me scheduled for a ct scan that day and sent right me to a pulmo. I can't imagine what would have happened had he just sent me home with meds with no followup. I am going to talk with him more in depth about the risk of bursting. I'm glad you finally got the care you needed!
Well, now that I've rambled a bit I want to wish you well ASmith. Hope it all works out for the best for you whatever is decided. I think you'll be fine, "fine as frogs hair" you could say.
A smith,, Houston seems to have a plethora of medical facilities. I like to stay here if I can. But then I didn't swallow a balloon or whatever you're dealing with. : ). Hoping you still have a sense of humor.
Zigzag - No worries! My cell phone kicks my butt about once a day haha! Thanks and I think I will be fine also. The doc cleared me and I'm going for it. Have a trip planned for Sept :)
jh- Oh I don't go to town unless I have to but it's nice to know they are there :) Balloon is a good word for it, I might start using that! It's hard to explain sometimes. I hope to never loose my sense of humor :) You have to have one to get through life or it's no fun at all!!