Adina's Story - Biologic Lung Volume Reduction - BLVR

I was diagnosed with COPD (emphysema) on March 16, 2006. I was fighting a cold and couldn’t sleep. In the middle of the night, my breathing became worse and worse until I finally felt like I couldn’t take a breath at all. I dialed 911. After a four-day hospital stay I came home on 4 lpm of oxygen and unable to walk even a few feet without getting extremely short of breath. It’s been a long process to rebuild myself since then, and at the advice of my pulmonologist I explored lung transplant, lung volume reduction surgery (LVRS), and finally biologic lung volume reduction (BLVR), a much less invasive procedure to reduce the size of the lungs and increase breathing capacity.

On Wednesday, Dec. 19, 2007, I had Biologic Lung Volume Reduction as part of an Aeris Therapeutics’ clinical trial BLVRS Trials. I participated in Phase II of the trials in which 20ml of their proprietary biological gel is applied to a total of eight of the worst places in the lungs – four places in each lung. I was the first one in Northeast Ohio to have this procedure, and it was performed at Akron General Medical Center in Akron, OH, by world renowned Dr. Sanjiv Tewari, who is a specialist in pulmonology and an absolutely fabulous physician. Also in special attendance were Whitney, a representative and trial coordinator from Aeris and Dr. Larry Tsai from Harvard Medical School and Brigham and Women’s Hospital in Boston to assist, if needed . He has done the procedure before; this was my pulmo's first time, but he's such an expert at bronchs that he didn’t need to have any assistance.

Since this was Dr. Tewari’s first time for this particular procedure, he had me totally sedated and put on a vent so that he could take his time because, as he put it, he wanted it done, “perfectly.” I understand that others have had this procedure done under “conscious sedation.”

After the procedure, I was kept for 24 hours in the intensive care unit, which was just a matter of precaution, as well as more individualized care, as my FEV1 is about 23% (0.6 liters), and my DLCO is very low: 16 to 17%. I did very well and came home on Dec. 20. I did have a sore throat for a few days, as well as a very sore chest and back. I also ended up having a COPD exacerbation, which isn’t unusual because of all the poking around in the lungs as well as the placement of a “foreign” material. The exacerbation, though, was not nearly as bad as some I’ve had, and the only treatment I needed was a Z-pak and five days of prednisone.

It’s been five weeks since the procedure now, and I am beginning to see some results. I am tickled pink! I am starting to be less SOB and breathing easier in general. Each day is a tad better than the one before, and I understand right now that I can continue to experience increasing benefits for many months to come.

Prior to BLVR I had to use 4-5 lpm of O2 for exercise, esp. on the TM, to maintain my sats at about 90-92%. Now I can walk on the TM with only 3lpm and my sats stay at about 94-95%. I'm still waiting to see more improvement like that when I'm just walking around the house, etc. I have noticed that I can either walk faster than I used to and not get AS SOB, OR I can walk slowly and not get SOB at ALL!

Also, the other day I bent over to put on my socks - trouser socks, at that - so there was more pulling and tugging. When I was done with an activity that used to make me SOB, I was breathing absolutely normally, and tears ran down my cheeks as I realized that I'd forgotten what it's even like to breathe 'normally.' I can also take much deeper breaths than I used to. And, I'm so used to using PLB that I find myself doing that pretty consistently and then realize that sometimes I don't NEED to!

I have an appointment with my pulmonologist next week, and I have a PFT and other tests scheduled for Feb. 1

I still have a long way to go, but the benefits I'm experiencing so far are terrific. If anyone has a chance to participate in this phase or the next one, which will include about 400 people (I think), I'd encourage you to go for it!

We won’t really know for about six weeks after the procedure if or how much it will help. I’ve had one PFT since the procedure – just 12 days after it – which showed no improvement in my FEV1, but some small improvement in my DLCO. But I’m already getting around better and not desaturating as quickly as I used to.

You can check out how it's done at BLVRS Trials. Just click on the picture or text and a short "video" presentation will appear. I've been told that it takes about six weeks to notice any difference, IF there is a difference. I understand that one of our local newspapers (Akron Beacon Journal) is going to do a big story on it as I am the first person in NE Ohio to have it done - about 39 others have been part of this Phase II of the trials. So I'll keep you all posted