No cancer, but I have bronchiectasis..

[bee.louise]

Hello all, 

I am 25, and had part of my left lower lung removed last year in June. They told me they removed a baseball sized mass from my lung, and I was diagnosed with bronchiectasis. I have reacurrent (multiple times a year) pnemonia which affects my entire left side from the neck/left shoulder down. I know this is a forum for cancer, but finding help for my condition always brings me to lung cancer sites and I don't have anyone to talk to about this around me. I am currently in the military, and my pulmonologist says I am his youngest patient with this issue. I am very active and work almost 12 hour days, and I am an avid runner/hiker. I still have pain in my left side from shoulder down, and I've noticed some changes lately. My sternum is constantly popping, to the point its sharp pain takes my breath away. I started running a lot more and am trying for 100  miles this month. I'm on week two and I can't seem to stay awake. For lack of better description, I feel like I could sleep for weeks. I sleep about 8 hours a night, not on purpose, I try to stay awake but I start getting out of touch with reality a bit. Everything just seems to take a major toll on me. My lung function test recently was taken and I am at 71%. I do breathing exercises and use inhalers every day. No one around me really knows what to do with me since I am being medically separated from the military, so I'm often finding work out plans to do by myself to stay fit and healthy. I have been doing biofeedback and when I am hooked up to the moniters before anything starts, they read that my body is in 'fight' mode every time. The doctors here are always understaffed so they don't have time to sit down and figure everything out with me, so they gave me anxiety meds to help me 'calm down'. To better paint a picture of the medical I have here, when I had my surgery, on morning of day 2 they pulled the chest tube out and because they didn't have enough beds I was checked out and I literally got up from the bed on my own, packed my bags, and walked to the elevators and out to the parking lot until a friend picked me up. I was then on my own for several days and didn't eat for 3 days until someone checked on me and brought me soup. I then got enough strength to drive 5 hours to my mom's place so I had someone to watch me. I ended up in the ER with a high fever because the on base hospital here does not perscribe antibiotics after surgery unless they are needed. 

Does any one have any pointers that is actively doing fitness? Specifially cardio? I'm scared I'll do something to make myself worse, I'm only 25 and don't want to be hooked up to a breathing machine before I'm out of the military and free to be me again. I don't want to give the impression that I'm an idiot, its hard to explain how much my hands are tied when it comes to military medical. I'm honestly just very lost and alone through all this and want to talk to people who have been through this to see how they are handling it. Google only helps so much.

[Steff]

Welcome BeeLouise,

I'm sorry to hear about your struggles.  It can be tough to find a new "normal" after having a portion of your lung removed and dealing with a chronic condition.  I am a caregiver for my mom, who is currently fighting a recurrence of Non-Small Cell Lung Cancer (NSCLC).  She had her upper right lobe removed during her first bout with lung cancer and although she sounds the complete opposite of you physically and age-wise, maybe her experience can give you some insight.

First and foremost, my mom is not the ideal picture of good health, she is 63, obese and has multiple health issues, including COPD which affects her breathing.  My mom was a bit different in that she felt that she could breathe better after her surgery - the lobe they removed was filled with emphysema.  But her O2 levels regularly drop as she is walking and she has been on oxygen on and off for a few years.  She has oxygen piped into her CPAP at night as well.  A couple of thoughts come into my mind in thinking about your exhaustion.  1) Your body is probably still getting over major surgery, especially since it sounds like you didn't have the best aftercare from the hospital.  2) While running, your oxygen levels may drop enough to tire your body out (my mom gets really tired when your oxygen levels dip or if she doesn't have oxygen in her CPAP at night). 3) Have you had a sleep study? I don't know if sleep apnea is more likely after a lung lobe removal (my mom had it before surgery), but it may be something to look into - it could also be a reason for your exhaustion. 

Do me a favor, give yourself (and your body) a break!  Although you are young and sound quite healthy, your body still has to adjust to a huge change in smaller lung capacity and having a chronic condition.  Your new "normal" may be doing other types of exercise besides running.  I don't really have much for cardio suggestions - when my mom feels well enough to go, she does a pulmonary rehab exercise class at our local hospital (treadmill, elliptical, etc) and water aerobics and water walking.  She looks for low impact exercise because she had rheumatoid arthritis.

There are several folks on here that have a military background and can likely understand exactly what your are dealing with.  I am glad you found these forums.  I have been involved for a few months and it has really helped me cope in trying to find a new "normal" with my mom and dealing with her battle.  

I wish you the best.

[Tom Galli]

Bee,

Welcome here.  I am one of the several with a military background.

Bronchiectasis is nasty. It is normally associated with cystic fibrosis and or an autoimmune disease.  I know because I spent about a month in an Army hospital as a young officer with symptoms. In my case, it turned out to be a nasty virus but obviously yours is different.

While I understand your situation, I can't understand how the armed service could retain you on active duty.  While you report your superb fitness state, loss of portion of a lung normally results in medical retirement because you've become "non-deployable".  Are you being processed for military medical retirement?

Military medicine is outstanding in battlefield trauma (as one may suspect) but mediocre at almost everything else.  And, I understand how your hands are tied. I suspect you'll have a medical retirement board proceeding and will receive both a military retirement and veterans disability retirement along with life-long VA medical care.  I live near Dallas and find the VA hospital here provides excellent care.  The only problem with VA medicine is the bureaucratic shuffle getting into the system.  You'll be in the system from the start.

In my active duty time, we did a 5 mile run on MWF and 10 miles on Tuesday and Thursday and that routine may be too much for your condition. I'm not a physician so don't take my suggestion as medical advice.  If it were me, knowing the symptoms of bronchiectasis (I do) and the irritation that excessive physical fitness activities can cause the lungs (I do), I'd be very careful with your fitness routine. Keeping fit is fine; training for half marathons is likely not.  So I'd focus on fitness activities that do not overly stress lung function like weight lifting and static strength exercise.  

Stay the course.

Tom