Join Our Mailing List
Email:
Visit our blog  Find us on Google+  Find us on Pinterest  Like us on Facebook  Follow us on Twitter

 

Safe Eggs
Log Out | Topics | Edit Profile
Forum Archive
 

Constrictive bronchiolitis Log Out | Topics | Register | Edit Profile

TransplantBuddies.org Forums » Heart - Lung(s) » Constrictive bronchiolitis « Previous Next »
Author Message
Nancy
Member
Username: Nancyb01

Post Number: 2
Registered: 11-2013
Posted on Friday, November 08, 2013 - 07:49 pm:   Edit Post Delete Post Print Post

Hello,
I was diagnosed with COPD about three years ago. Had trouble after using a chemical for about a year. It was a germicide that made me cough and wheeze. In hindsight I see now. I had an open lung biopsy in June. The labs diagnosed me with constrictive bronchiolitis or bronchiolitis obliterans. It is rare. I found some old posts out there. I have found so few people for comparison and info. Any assistance welcomed. It seems that this usually ends with transplants. I am 46 so I figure eventually... Being evaluated at Duke in December. FEV! has gone from 39 to around 30. I hit 27 once but was getting sick I think. Anyone else out there?
Carole
Member
Username: Cjg208

Post Number: 1
Registered: 11-2013
Posted on Friday, November 08, 2013 - 08:33 pm:   Edit Post Delete Post Print Post

Nancy,
I have (had?) idiopathic Bronchiolitis Obliterans (also known as BO, different from BOS). Idiopathic means that they could not find a cause. I had an open lung biopsy in January 2011 to confirm the physician's suspicions.

My physician explained that I had an unusual presentation of BO; most people experiencing it are doing so as a complication of another transplant (organ or Bone Marrow). Nevertheless, transplant was my only treatment option.

The good news was that I was listed in April and two weeks later I got new lungs! I was out of the hospital in nine days, and have been doing fairly well, although I recently was told I am in chronic rejection with BOS. Once again my only treatment option will be another lung transplant, My lung function is fairly good and remaining stable for now.

In the meantime, I remain committed to living a full and active life. I am 57 years old, am 2.5 years post-transplant, work full-time and do a lot of volunteer work. I love being busy and using this incredible gift.

Feel free to contact me talk more, if you like.
Nancy
Member
Username: Nancyb01

Post Number: 3
Registered: 11-2013
Posted on Tuesday, November 12, 2013 - 06:30 pm:   Edit Post Delete Post Print Post

What was your physical condition(Fev1, were you on oxygen, physical limitations)? It sounds like things progressed fast for you. So glad to find another person out there. I had one doctor at Duke say the damage is probably done and that further would be from aging. He is a "fellow physician". He came back after talking with his attending and said that he was going to refer me to the transplant team. Hopefully things will get clearer. The info is so limited and the docs only know so much. My pulmonary doc said he had seen three cases including me and Duke doc said 2. Any info would not be boring to me. Feel free to share!!!
ajs
Forum Leader
Username: Ajs

Post Number: 805
Registered: 03-2008


Posted on Friday, November 15, 2013 - 04:07 pm:   Edit Post Delete Post Print Post

Hi Nancy,

Sorry you ended up here with us! I had pulmonary fibrosis, but was transplanted at Duke. You are in one of the best places in the world, so take comfort in that. I had tiny bumps in the road, but overall have been one of the lucky ones. I feel better than I did 20 years ago.

One thing I would do, if I were you and knew then what I know now, is take all the anti-inflammatory supplements you can get your hands on.

NAC
81 mgs aspirin
high dose fish oil (like 750 DHA and 750 EPA)
Astaxanthin 12 mgs a day
ask to be on a statin, high cholesterol or not
azithromycin 3 times a week
if you have reflux, be sure to treat it
exercise as much as you possibly can be consistent with

I doubt any of this will do more than buy you time, but that's enough. If you have to have a transplant, you want to stave it off as long as possible.

Good luck, and ask Duke about their pulmonary rehab program.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis

http://healthierlungs.com

Live each day as if you were living forever, and live each moment as if it were your last.

Carole
Member
Username: Cjg208

Post Number: 4
Registered: 11-2013
Posted on Tuesday, January 21, 2014 - 01:46 pm:   Edit Post Delete Post Print Post

Nancy,
Sorry to be such a slow responder. The holidays were crazy and then I just procrastinated.
I was completely well in July 2010. All my lung problems started in August 2010.

When I was first seen, my FEV1 was .58. It went as low as .39 before surgery, and was up to 2.05 two months after surgery (07/11). It has gradually been decreasing and is now 1.65 (65% of predicted score). It is this drop in the FEV1 that has made the docs diagnose me as having CLAD (the docs changed my diagnosis from BOS to CLAD - does not seem like a big difference to me).

I was on Oxygen about 2 months before surgery when my FEV1 was .56. I have not been on Oxygen since surgery, I work full time and involved with several volunteer activities. While I feel well, I do fight a chronic fatigue feeling, and I find that 9-10 hours sleep per night are needed to feel good..

I hope you are doing better and t

Add Your Message Here
Post:
Bold text Italics Underline Create a hyperlink Insert a clipart image

Username: Posting Information:
This is a private posting area. Only registered users and moderators may post messages here.
Password:
Options: Automatically activate URLs in message
Action:
Topics | Last Day | Last Week | Tree View | User List | Help/Instructions | Program Credits Administration
 
Contact Us
Established 2000 © TransplantBuddies.org