Treating Severe Emphysema: One Family’s Journey with Bronchoscopic Lung Volume Reduction (BLVR)

Posted on October 29, 2020 |

This article was reviewed by Kristen Willard, MS

This post is based upon the real-life experiences of Chris, a person with COPD.

Emphysema – one of the forms of Chronic Obstructive Pulmonary Disease (COPD) – is a disease that affects the person with COPD as well as their family and caregivers who watch them deal with the frustration and fear of having difficulty breathing. Before emphysema affected Chris’s lifestyle, he enjoyed everything about the outdoors. He spent hours working in his garden and went hunting with friends. He absolutely loved fishing with his two grandsons, which involved a long walk through the woods to get to the river. As Chris’s symptoms progressed, he no longer found that long walk easy to do. He also had to pick and choose what he could do, as everyday activities became difficult for him to finish. Chris would have to form a plan to do just about anything, so that if he was out of breath, he knew there was somewhere for him to sit down and take a rest. He found this to be disruptive and embarrassing.

His wife, Jody, watched him struggle for years, which fueled her search for treatments that could help them get back some normalcy in their lives. She also felt a divide between their family and the rest of the world. Jody was devastated knowing that Chris felt that his problems became his family’s problems too. Chris was very good about using all his therapies and keeping up with the activities he learned at pulmonary rehabilitation. They wondered if there was more that could be done.

Chris’s medical care team agreed with Chris and Jody that it was time for him to be seen by a pulmonologist. The pulmonologist agreed with Chris’s COPD and emphysema diagnosis. Going further, he ordered more tests to get information on the location, type, and extent of Chris’s emphysema and found that he might benefit from a procedure called bronchoscopic lung volume reduction (or BLVR). During BLVR, valves are placed within the lungs that can help to move the air you breathe away from the more damaged parts of the lungs to healthier parts. This is done during a minimally invasive procedure called a bronchoscopy. Either of two FDA-approved types of valves can be used in the procedure by the treating physician.

On the day of the procedure, Chris was sedated (made sleepy). The physician placed a bronchoscope (thin tube with a camera) into Chris’s airways through his mouth. Then he could see the portion of Chris’s lung most affected by disease and place the small valves. After an overnight stay, Chris left the hospital with instructions on what he should do for the next few days and plans for follow-up.

Since Chris’s procedure, he and his family describe a changed world. Chris states, "The term life-changing comes to mind for me when I think about what this procedure gave me; I've gotten a lot back--I am even planning our first vacation in years and I am not having to plan out my breathing breaks." Chris has been able to maintain his growing garden with beautiful heirloom tomatoes and blooming flowers. He is able to spend time with his grandsons again and enjoy his life with Jody. The procedure brought an improvement in Chris’s quality of life, as well as Jody’s life and relationship, by relieving a lot of the concern, worry, and fear. Chris no longer had to have emphysema play such a large role in his life and is able to do certain things he loves to do again.

To learn more about Chris and Jody’s story, watch the full video and visit https://svs.olympusamerica.com/prescriptive-information to learn more about this endobronchial valve.

This post was sponsored by Olympus.

17 Comments

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Norso

Is this the same more or less as zephyr valves? I'm not sure how easy it would be to get this done on the NHS in the uk and privately it's very expensive.

But these treatments do sound brilliant for those that can get them done.
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- Kristen Willard
  
  Thanks for reading, Norso! There are two FDA-approved types of valves: the Spiration Valve System and Zephyr Valves. Your physician is the best person to discuss this with to see if you are a candidate and to learn more.
  Reply
Jane M. Martin

Such a great story! Thank you for bringing this to us, Kristen!

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SuzySassella

Heck, that's a lovely story with a great outcome?

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Norso

I enjoyed the article Kristen....You can almost feel the joy... Its obviously a fantastic treatment and a very uplifting story. You've changed profile pic I think.

Sadly being in UK FDA doesnt mean much here I don't think. Ive looked on NHS website and it does mention lung reduction surgery with valves inserted. I'm assuming it's the same thing?
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Mr. Coffee

I know my doctor will be a source, but can somebody give me an idea what conditions might make this procedure one that could be neccessary? At this time I have private health insurance with Medicare as my secondary insurer.
Thanks gor thoughts
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Norso

I think you have to be severe stage. It's offered as an alternative to invasive old style cutting chopping surgery
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- Netnotes
  
  Norso,
  You are correct! Zephyr Valve is offered to those in severe stage. I don't want to wait until I get to that point. I'm going to check with my Dr.
  
  Reply
Jean IA State Captain

Norso, I think surgery with valves inserted as you said is how it's referred to in the UK. Just FYI, it's been available in the UK for much longer than in the US.....your regulatory group equivalent to the FDA approved the valves about 10 years ago, I think. They do pay a lot of attention to the FDA, but mostly, it seems to be to approve it first!

Mr. Coffee, getting the valves is kind of a combination of "you need help" and "if you qualify". We know from lots of experience, both with lots of clinical trials here and the experience they've had in the UK and Europe over the past 10-15 years that there are criteria you must meet if the valves are to be successful. If you don't meet the criteria, there's no point in doing the procedure because you won't get a good outcome. So it's quite possible that you may need help, but this won't work for you and unfortunately, we don't have alternatives except a transplant that will work.
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Norso

Hooray!!! Thanks Jean! I saw on pulmonx site a list of NHS hospitals that perform it!!!
... And it's nice to know UK is ahead of the USA!!!
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GinaW

Chris is very lucky to have survived that surgery. My husband asked his lung specialist about it, and the specialist took a lot of time to show Ken the Xrays of his lungs, and explained why the valve wouldn't work with Ken. His lungs are so severely damaged that if the surgeon attempted the surgery and his bronchoscope slipped out of place even 1 millimetre, it would be enough to cause enough damage to deflate the lungs and kill him.
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- Norso
  
  Bloody hell. It must be awful. I wish you both as much best as you can get.
  
  How are you bearing up Gina? My mum was terminally ill and I found sometimes it was hard to cope with to say the least. Those around you get affected and that isn't always appreciated. I know I give people close to me hell at times. I don't mean to.
  Reply
Jean IA State Captain

Gina, I would say that Chris isn't "lucky" he survived the surgery. He was vetted completely BEFORE the surgery to be sure he had a very good chance of coming through the surgery without problems. The two major side effects of the surgery are pneumonia and a pneumothorax (lung collapse). Both are serious, but treatable and the rate of survival for people who were cleared for the procedure and then had either or both is excellent. Your husband might not be able to have the surgery because of the condition of his lungs, but the surgery isn't done just because you want it done. You can only get it if you complete the evaluation and are cleared for it: not everyone qualifies.

Like everyone, I'm certainly glad that he did as well as he did. But his "luck" was bolstered by a lot of good preparation and vetting.
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- Stephanie Williams, RRT (COPDF VP of Education and Engagement)
  
  Thank you for this, Jean, This is absolutely correct. The valve procedure, though less invasive than the LVRS (lung volume reduction surgery) that provides similar results, is still not done for everyone. Certain criteria must be met, including the type of emphysema, location of the disease, etc. We in the medical field prefer to have as much information as we can before any procedures are done - especially if there is time to do the proper screening and evaluation. Most patients even have to complete a certain number of visits to pulmonary rehab to ensure they have built up some stamina and will have strength to endure the procedure and perform well afterwards. We definitely prefer to have a lot of preparation which helps things to go as smoothly as possible.
  Reply
GinaW

Oops, sorry - I selected the wrong word when I said Chris was lucky. I know luck has nothing to do with his recovery! Jean and Stephanie are both right in when they say either operation needs a lot of screening and evaluation before going ahead with it . Ken's GP, cardiologist and lung specialist all talk to each other when it comes to making decisions about his health, so it was a joint decision by all of them to agree that he would not be a suitable candidate for the surgery.
Norso, thanks for your concern. Ken and I have been married for 42 years, and I've been his carer for the last 20, so I've had a long time to learn how to cope! I am by nature a positive person, so I tend to get on with my life as best I can, keeping up my own interests and hobbies, while looking after Ken, who is actually quite easy to care for at this stage, as he doesn't need help with getting dressed or personal grooming. I just have to make sure he takes his meds etc, eats properly, drinks enough, and so on. He doesn't make life difficult for me intentionally, so if he gets a bit grumpy from time to time I understand why.
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- peggy2875
  
  Hello,
  I am new to this group & greatly appreciate the opportunity to be a member. I agree with both Jean Stephanie, who obviously have specialized knowledge & expertise in this medical area & am grateful for the information you shared.
  
  My COPD is emphysema (quite severe) & 5 years ago my Pulmonologist referred me to the Mayo Clinic to be evaluated for a possible lung transplant. After 11 days of testing, I was determined not
  to qualify for a transplant, but I did qualify for LVRS (lung volume reduction surgery) in my right lung.
  At this juncture I had been on O2 for 2 months and in a pulmonary rehab program for several months. Four weeks later, I returned for the LVRS & was the 'poster senior citizen'.....no more 02
  except at night. And my life changed.
  
  Fast forward to 2020, 5 years later, & as projected my improvement had diminished. So off to the Mayo for the valve procedure evaluation in June 2020, for which I did not qualify. I requested another evaluation for LVRS in my left lung and I met the criteria (marginally). Early Oct. 2020 I
  had the surgery & the improvement is incredible. Pulmonary Rehab, walking etc are critical.
  However, please know, the tests & evaluations, etc to determine qualifications for surgery are extensive & intensive and a team of doctors determine whether a patient qualifies.
  
  At age 73, I am delighted with my improvement in quality of life, but as stated above, very specific criteria must be satisfied along with the medical team determining a high probability that the outcome will be a success.
  
  1 other item: INSURANCE (I note some questions). Again, I am not an expert, but I quickly experienced the 'disadvantages' of Medicare Advantage Programs. During an open enrollment period, I made Traditional Medicare my primary insurance & Supplemental Part F with United Healthcare AARP as my secondary. Medicare pays 80% & the Supplemental pays the 20% difference.
  
  I hope my story will be of some help.
  
  Happy holidays & be safe! Peggy
  
  Reply