Welcome!

Thank you!

Welcome! Whatever questions you have someone here will either have the answers or point you to the right place for answers. I'm not acquainted with giant bulla, but my quick search indicated a correlation to emphysema. Where are you in your treatment? We're all in different stages with different approaches so bare with us - there's always someone(s) to relate to.

Welcome again. Good to hear that you've "come a long way since."

Take care...

That's the thing.....until I got bronchitis for the first time in December I had no idea and neither did my reg doctor. I am 54 and have been very healthy till now. How it got this big with no symptoms is the mystery. I have been tested for Antitrypsin deficiency and it came back neg. Which would have explained the bulla but so glad I was neg! There is just not very much info that I can find on it. They put me on Antibiotics and steroid for 2 weeks plus 3 inhalers, 2 long lasting and one emergency. It took until almost March to get it all cleared up.

I did pulmonary rehab at the suggestion of my doctor and it was very helpful. They tell you not to fly or go scuba diving because it can burst. At that point I was scared to do anything but they helped me and even pushed me pretty hard. I don't do the inhalers like they told me to. I do if I feel like I need it but most times now I feel like I am breathing fine. Only after being outside if there is alot of dust like when I'm mowing do I use them before and after and all is well. One is a steriod and I don't like the idea of getting dependent on meds before I have to.

I started doing my own research on natural ways to help and found for me taking tumeric, ginger and echinacea daily keeps the inflammation down.

At this point I am living my life and refuse to let it slow me down. The big question is what now? One pulmonary doctor wants to do LVR right now and the other one wants to wait. I tried to get into a study at St Lukes were they are doing a study on a new procedure using coils that is much less invasive but I didn't qualify because mine is too big. Put it looks very promising and they are expecting it to go to market after the first of the year.

Sorry this is so long but that is pretty much my story :) I am still struggling with putting the cigarettes down for good. I know I have to and I'm working on it :)

Thank you CaitsMom and Joany for your welcome posts :)

Welcome to the group....you can get a lot of information from the good folks in here....so feel free to ask anything about this lousy disease and im sure you will get truthful answers. good luck with the trying to stop the cigs.

Thank you so much. Information is what I am always looking for :) Has anyone had lung surgery? In particular Lung volume reduction, and if so would you be willing to tell me about it?

welcome to the board asmith3.

I'm no medical professional, just a person with emphysema & PF. Much of this disease confuses me and I learn something new about it every day.
This support group is wonderful & I have learned so much here. We are all different individuals with different meds, but we are still all walking this COPD path together. I'm sorry you have to join, but happy to have you join our group.

anyway;
To quote Mayo Clinic description of Emphysema; "Emphysema damages the inner walls of the lungs' air sacs (alveoli), causing them to eventually rupture. This creates one larger air space instead of many small ones and reduces the surface area available for gas exchange."
Those "holes or spaces" are what a bullae is. If one of those "pop", it collapses that part of the lung. (I hear it hurts like hell) http://thoracics.org/2012/02/08/blebs-bullae-and-spontaneous-pneumothorax/

There are several "sub types" of emphysema. Bullous emphysema being one of the types.
I just found this really cool site (new to me) that tells about all the different types of emphysema, but also the right side of the page.has HRCT images of each type.
If you click on the HRCT image & move your mouse wheel, it will take you thru the whole scan.

I'm going to check this out closer! It's cool :)--I have all my HRCT on disc so this is a site that i can go into & see other what other types look like compared to my type.
http://radiopaedia.org/articles/pulmonary-emphysema

Do you scuba dive or fly a lot?
I had surgery on my neck a few years ago & a Bullae bursting was one of the worries....I asked my pulm if one burst when i was under, how would I know? he said I would have a tube coming out of my lung where they would re-inflate it.
So, my point is that all of us need to live & enjoy life to the fullest, but maybe not scuba dive or jump out of airplanes ;)

As I said, always something new to learn with this dx.
I am a firm believer in educating myself about "my dx" so I know, understand & active in my own life.
When I told my children that I had this dx my daughter was very upset. I told her nothing was different in 1 day other than I now knew it was time to start taking better care of myself.

As for the inhalers; we are all different & some work better than others on different people. I am allergic to steroids so I use a daily inhaler that doesn't have steroids in it. This is something to work out with your dr & if you don't want a steroid yet, speak to him about it, there are several inhalers that don't contain steroids.

Whew, sorry for the long post....my internet has been down all day so i guess i'm super chatty with pent up posts inside me ;)

ps. I used a lot of abbreviations; if you don't understand them please ask.
:)

Ive not had it done. I never qualified. However, everyone Ive been in contact with that has had it done have benefitted. Your specific form of emphysema often lends itself to lung reduction surgery providing positive results if you do qualify there is such a narrow window of opportunity my totally un-qualified medical opinion is to have the surgery ASAP. Normally, if you qualify the pulmonologist will usually suggest the option; if he/she has not - one can always ask for additional details.

It is NOT a cure and will not substantially bring back any functionality, but will reduce the risk of further complications (inflammation/infection), generally improve the quality of life via fewer medications and treatments, and slow down the progression of the disease.

Hello Jarca :) it's very nice to meet you.

I'm new to all this so my first question is what is pf and dx? I'm still learning the lingo.
Thank you for the link, I will check it out. I am always looking for information. I do not scuba dive and have not flown in a couple years but would like to go on a vacation that requires getting on a plane. My fear is just as you said.....that this darn thing will pop! I really like my doctor and he says I can fly but I had another one tell me not to so I am scared to. I need to talk to him more about it. You are right about taking better care of ourselves :) I am learning everything I can and exercising and eating better.

LVR is an option for me but like everything else there are risks and horror stories as well as successful ones , they are working on a new procedure using coils that is much less invasive and we are hearing good things. I believe they are hoping to bring it out of the study stage and to market after the first of the year. If you haven't checked it out you might find it interesting. Just google LVRC. (Lung volume reduction coil) St. Lukes has a study going on right now but I did not qualify due to the size of my bulla. They have been doing it in Europe for several years.

I do use my inhalers when I need them but don't feel like I need them all the time yet :) this is a good thing right? I know I will get to that point and will deal with that when it gets here.

I'm so glad to have found this site :) It's nice to know there is a place where people understand and are willing to talk through things. It helps alot.

gnott - Thank you so much for your reply. I have been to two pulmonary docs....one says do it the other says let's wait and see what this new procedure has to offer. The LVRC. He feels like we have the time to check out all the options. I go back and forth as to which way I want to go. I just don't want to make the wrong decision ya know?

It's good to hear you have heard positive feed back about it. That makes me feel better :)

I do have one more question please? How often do you get ct scans? I have had one when I was diagnosed.

Thanks for all your help :)

welcome to the group, sorry I'm not familiar with pulmonary bulla. hope you find the answers you need. hugs to you!

Michelle

Welcome !

Is that the hospital in MO? If so, it is one of the top 10 in the country for Plumo problems. Since they have LVRC trials going on,perhaps they are also doing studies for the valves (LVRV). I don't know the criteria for coils vs valves. I have learned that once coils are implanted they cannot be removed; but the valves can be removed. I have often wondered if the coils would then disqualify a patient for future corrective surgery (such as LVRS /LVRV).....Just wondered. Something you might want to check into.

Yes, the coils and, I think, even the valves have been used for awhile in Europe. I was hoping for the valves but doesn't look like it's going to happen, due to my age (cut off age is 75 / I'm about to be 76).

Have they done the routine work-up on you for the study .Believe it is usually PFTs/ HRCT/ EKG/ Blood work/ full med history / etc

Check w/your hospital and find out who is the Principal Investigator for each of these studies.

You did mention 2 diff Pulmo Docs......Did they both belong to that
same hospital?

Hope that I have not scared you or discouraged you any further.

Wish you the best..