I have posted briefly here before but I’m not sure if my post is still on the website….
Anyway, I was diagnosed with BHD last year after 2 collapses and a VATS on my right lung. We are a military family living in Germany and the docs thought it was best to send me to Bethesda (NNMC) for my surgery and lab work (I was diagnosed with BHD here in Germany though, after surgery). When I was flown home after surgery I developed another pneumothorax. It took about 5 months for the air to reabsorb, and then my doc wanted me to wait at least 3 months before flying again.
I ended up waiting more than a year before flying and then went to Italy (flying from Germany it is only about 1 1/2 hrs). It was a short flight, so a good “test” flight. I had an x-ray afterwards and all looked good. However, just 2 weeks ago, we flew to the states. While I was packing for the trip I had the old familiar sensation of an air bubble, and because it was a weekend, decided to go to the ER for an x-ray. I didn’t tell them to call my pulmonologist as I thought that if there was an air bubble, they would see it.
The ER doc and radiologist did NOT see my pneumothorax, so off we went to California! I felt the same all week, perhaps a little bit worse (I get sore in my back and I get a crackly feeling/sound in my throat with deep breaths). We had 3 flights to get back home to Germany and upon my return my pulmonologist (who had since seen my email about my ER visit) had me come in for a CT scan. The CT showed about a 1/3 collapse in my right lung. He was pretty upset to say the least, because when he looked up my x-ray from my ER visit, he could see the collapse!! If he’d had a chance to see that, he would have kept me off the plane!!
The trip was great, I’m glad I made it, and at least now we know that the collapse was likely caused by exertion and not from my Italy plane trip. However the international flight definitely aggravated the condition and now I’m on orders to stay home and rest and have an adult with me at all times. I’ll have a follow up on Monday to see if the air is starting to reabsorb on it’s own. Doc doesn’t want to insert another chest tube right away as that is only a short term solution but long term could lead to a constant air leak. So we will hope that the air starts to reabsorb on it’s own (but like I said, it took about 5 months last time!)
My dad and uncle also have BHD though haven’t been tested. My uncle had one VATS on the right and has the facial tumors. My dad and I don’t have many bumps (1 or 2), but my dad has had 3 lung surgeries. He says that exertion seems to aggravate/start the air bubbles.
This is very frustrating for me. I’m 34, mom to 3 small kids and of course, I want to be in my best shape! I am not terribly overweight – maybe 15-20 lbs, but it has been very frustrating to try to lose the “baby weight” – my lung collapsed when my 3rd baby was about 8 months old and since then with dealing with surgery, recovery, and now time to let 2 collapses reabsorb on their own, I wonder if I will never truly be able to exercise and lose this weight the normal way. (my vanity is leading me to think about a mini tummy tuck but I am not sure if that is even safe with my lung condition!)
I mostly see posts about people dealing with the kidney cancer aspect of BHD. I am so grateful that hasn’t shown up in our family, but the lung blebs are not fun either. If there is anyone who has dealt with lung issues and can attest to the exertion/exercise aspect of it, please let me know! I had helped my husband put together bunk beds for our kids, so that could have started it, and then getting luggage down from the attic to pack for our trip (it was during packing that I felt that sensation).
Thanks!
Jocelyn
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Hi Jocelyn,
Like you I have BHD. Over the years I’ve had pneumothoraxes in both lungs, and have ended up having the pluerodesis operation on both lungs too. I’m a keen cyclist and regular gym attendee.
I do think the pleurodesis has slightly taken the edge off my ultimate cardiovascular fitness – I just don’t seem to have exactly the lung capacity that I used to have, and I do wonder sometimes if another effect of gluing the lung to the side of your chest is that it might restrict your ability to take rapid breaths (?). But, that said, the differences are relatively minor and I’d have to say ageing probably has just as big an effect on my fitness potential.
What I did find though is that the pleurodesis “reset” my cardiovascular fitness back to zero. Before each of my pleurodesis I was really fit – my resting heart rate in my hospital bed leading up to my last operation was about 48bpm. But each operation took that fitness back to zip and it was frustrating to have to start from scratch again and slowly rebuild my base fitness. I went from that resting heart rate in the 40s to having to take the stairs to the upper level in our house in two stages because my lungs were hurting so much and I couldn’t breath fast enough.
So my take is that once your pneumothorax is totally healed – and given your BHD diagnosis and your experiences with recurring problems I’m a little surprised you haven’t had a pleurodesis – there should be no impediment to getting back to a good level of fitness, apart from the frustration of having to start right from nothing and slowly build up. I’d say it took me about 6 months to get back to a level of fitness where I could walk around and climb stairs etc without getting a little pain in my chest and slight shortness of breath. And then it just took the “standard” time to build up to more rigourous exercise and building back to a high level of fitness. Now – 3 years after my second, and last, pleurodesis – I am riding 3-4 hours at a time and hammering up hills and so on without problems.
For my part too I suspect that the pneumothoraxes I’ve had have been stress related – that somehow the stress causes a bleb to burst. I don’t think mine have been exertion related.
Thank for you for this, it is encouraging. I have had the pleurodesis (VATs) on my right lung which is the one that is still partially collapsing. I think it’s interesting to read that you think it is stress related. I think in my case it probably was as well. It would be great to have more research done in this area.
I was packing for a trip to the states for me and my family and had alot on my mind. I had also just helped my husband put together bunk beds, then he had a vasectomy and so I was doing alot of the heavy lifting and running around taking care of everyone/everything in the house (3 young kids here and I homeschool). So perhaps it was stress related on top of maybe doing more than usual physically (except that I do normally do cardio 5-6 days/week and weights 2-3 days/week)
It is frustrating now, having to take it slow and feeling so flabby!! But very encouraging to hear about your 4 hour bicycling! Wow!
Another member of the BHD club here. I was a very avid weight lifter and cyclist until I had my first pneumo (right side) back in ’82. After that, I eliminated the heavy lifting and also the cycling. I had another pneumo with the same lung in ’87, which caused me to further reduce my exercise (of course, at the time, nobody had even heard of BHD). They stuck a chest tube in me for the ’87 pneumo and it has seemed to hold OK.
In ’97, my other lung collapsed and they could not get it to “stick” again. Had the chemical pluerodesis performed and it has held fine (but still no diagnosis of BHD). Over the years, I became more and more out-of-shape, mostly from fear of suffering another pneumo.
In 2007, I got the diagnosis of BHD as kind of a fluke–a dermatologist who was removing a mole noticed my white bumps and asked me out of the blue if I’d ever suffered from collapsed lungs. When I replied that I had, he connected the dots and told me to get myself in for an ultrasound of my kidneys. Sure enough, I had a big ugly mass hanging off my left kidney. Anyhoo, the threat of the upcoming kidney surgery was a strong catalyst for getting myself back into shape. I began “fast walking”, using a treadmill and also taking every opportunity to walk somewhere rather than drive, as well as becoming more careful with my diet. After six months, I found that I had shed 35-lbs. and brought my blood pressure down almost 20 points. I had the kidney removed in Dec. 2008 and bounced back pretty quickly. I’ve continued my 45 – 60 minute walks every day and I’ve also returned to push-ups and sit-ups. And now, at age 50, I’m in better shape than I’ve been since I was in my 20s.
I guess this is all to encourage you to get back on the excercise bandwagon. It certainly doesn’t have to be strenuous, just regular and persistent. I do things like walk around the mall when my wife & daughter are shopping, or walk to the library/movie rental/whatever rather than taking the bus or car. It’s amazing how many opportunities there are to get in a good walk, even if only for 15 minutes here and there.
Best wishes!
Drew
I was diagnosed with BHD 4 years ago – my dad and at least one aunt are also affected (77-year old dad has a slow-growing kidney “lesion” which is being monitored regularly.) I’ve had numerous partial lung collapses – most recently after 4 hour surgery to remove non-malignant uterine tumors. I’ve spoken with thoracic surgeons and have concluded that I don’t want medical intervention at this time. When I asked one in Boston whether alternative therapies might work – he suggested daily 500 mg vitamin C supplements (to build collagen) and exercise (to improve the general condition of the lungs.) While I don’t love living with the uncertainty of when the collapses will occur (mine have occured while biking, sailing (on a very stressful outing), after surgery (the anethesiolgists were very blase about my condition), while flying, after flying, after (ironically) a 45-miinute kidney ultrasound where I had to breath and hold many times, and while eating pizza!) they seem to be manageable – painful and life-changing for about a week (have to slow down), but so far, not life-threatening. Having said all that, I rode in the Boston-New York Aids Ride (263 miles), have run a half-marathon, and participated in a sprint Triathlon – all without incident. My hope (as a 46-year old mother of two) is that general good health – and whenever possible, a positive attitude (which is not how I felt when I was diagnosed!) will get me through. I also have hundreds (literally) of fibrofolliculomas over my upper chest, neck and face. They are getting worse and I am seeing a dermotologist in Boston who I hope can help. I wish good luck to all of us.