Living With One Lung

[Guest]

Hello One Lungers: I have a few issues about living with one lung that my oncologists and pulmonary specialists are not answering. They seem to think I'm weird, and don't want to deal with my problems. Thought I'd run them by you all and see if you have the same problems. These have all occured after the pnuemonectomy...and I did have 3 rounds of Chemo (Taxol/Carbo) before the surgery to shrink my 5cm tumor. Was staged at 1B.

- When I bend over forward to pick somthing up from the floor, I nearly faint, and I begin gasping for air.

- After walking "briskly" for about 3 mintues, I get a very tight band across my middrift...it isn't painful, just annoying, and a little scary.

- Throughout the day and night, I experience an enormous explosion of gas from my intestines. First, there is a spasm (not painful) in my rectum, then Boom! Bombs away! It is nearly uncontrollable. A truck driver would blush. I'm told that it is my diet, but I'm eating like I have forever...this didn't happen until after the surgery.

- My large left colon and stomuch have moved up into my chest area where my left lung used to live. I don't have any problems associated with it, but I'm wondering if they will develop later on??? Hvenig the colon up high like that is weird...it is right under my left breast.

- Since surgery, I've had 3 choking spells while swallowing liquids. Each one has happened months apart...but I really get scared with these because I cough myself out of breath, and then seem to be suffocateing.

- Hot weather is a killer! I feel sick, very tired, and feel like I'm smothering.

- Altitude...when we fly into Denver airport (which we do several times a year) I have to have a wheel chair meet me and whisk me to connecting plane beause I am panting for air.

- I had atrial fibulation of my heart 4 months after surgery, and then 6 weeks after that, Ihad a-fib again....but never before. And it has now

been 18 months since the last one. I take no medication for it. Was hosptialized the first time, the second time, I laid down and "wished" it away.

- Weight gain....unbelievable! 20 pounds

Well, those are some of the issues I ahve with one lung that I can't seem to find any help for from the medical community. If anyone out there has teh same problem(s), I would appreciate hearing from you and what you are doing to over come it (them).

Meanwhile, given all the above, I would LEAP in that chemo chair and JUMP onto the surgeons table...I love my life! I am happy. I am ALIVE!

ONWARD! Ellen West Lilja[/b]

[norme]

Ellen,

my husband is a one lunger also. I can tell you that he has had horrible coughing spells at times when he would take a drink of anything, even water. You have only had three, he must of had 50 to 100 from the time he got involved with radiation. That is what I think it was from.. He hasn't had any for about two weeks now and I am so thankful. am hoping it has gone away. He was told to lower his chin down to his chest when he had liquid in his mouth and then swallow. Per a swallowing specialist, this keeps the liquid from going into the lung where you don't want it going to. Per her, that is what was making him cough so bad, going down the wrong tube.....of course he usually forgot to do that.....

I just went to ask him about any problems when he bends over but he just laid down to take a nap so didn't want to wake him. he never spoke of a problem. he does get out of breath when he climbs stairs or walks to fast.

He use to say if he could only belch, he would feel better but that was during the times he was taking treatments of chemo and radiation. He hasn't said that for some time.

Other then the above, he has not to my knowledge experienced anything else you are talking about..

[Tami]

I have also been asking many questions lately too. You don't say how long ago you had your lung removed-mine has been about 1 year. I think the left lung is kinda special or so they tell me-as your heart normally rests in between the two lobes of the left lung. Now it kinda just flops around in there. Which could be one of the reasons your noticing it. Mine has now come to rest just over the left breast (where it seems I fractured a rib a few months ago) and it beats so hard I can see it under the skin. At times my heart feels like it is racing-a creepy feeling at best. I also have lots of tenderness in that area (the rib below the broken one is the one they particially removed to get my lung out). As far as stomach stuff goes. My stomach and intestines also moved up-glorious isn't it. My intestines rumble and growl it sounds like I haven't eatten for years. My PCP also told me that having the intestines so high up in the chest can cause chest pain. So that may also influence how you are feeling. I also get the burping (etc ) problems you mentioned. If I roll over on my left side when I first go to bed at night I could win "the loudest burp contest" hands down. Also hot weather is a killer for me too. I think I have some lymphedema in my left arm and the heat/humidity kills me. It makes it more difficult to breathe and things in there just seem to ache (i'm hoping that's what I'm noticing more of lately) The cold air is also difficult-it kind of takes my breath away. I also get the winded/cramps feeling when I walk but I continue-hopefully it will go away. I talked with David on the message Boards and he shared his fun facts too You can find my post farther down. It sure does make you feel better to know what others go through. I've been getting really scared over the pain of this break. It really didn't bother me for a few months. Now it's driving me crazy off and on (more on than off) It's like why now? What did I do? Is it a met? Your mind just spins. I think this one lung business is kinda hard on the body and I think it takes some time for the brain to remember their is no lung there-so it needs to reroute things. But anytime you want to talk, let me know.

[bobmc]

Hello Ellen, good to hear from ya and hope all is well.

Thanks for the post, I had a good laugh over the gas and truck driver comment. I can relate. In fact, just yesterday, at Sunday dinner at moms one just let off like it was the 4th of July. Absolutely, no control and no idea when it will happen and I'm going on almost 2 1/2 years as a 1- lunger. Very, very grateful and yes I'm learning to laugh at myself these days.

I kind of came to the conclusion that we are weird and I suppose the only one that knows whats it like to live with 1-lung is us.

Also, have problems breathing when I bend over. I was told it is because we breath with our diaghram and it kind of gets pinched as we bend over. Used to really tick me off when trying to tie my shoe's. Better now, with time and also because I now wear loafers.

Altitude and stairs are also difficult for me. At 8 weeks after surgery, I was at 4200 ft. in Costa Rica and it was a killer. It became even difficult to eat. Just no energy at all. Stairs are difficult but like Dave P says " exercise rules" and Daves a 26 year 1- lunger, racing mountain bikes.

I also have alot of problems swimming or rather treading water. Again it's good for me to do but I was told by a nurse that without the lung we have lost some bouyancy. (sp)

Hot weather and very cold weather also bother me, except when I'm near the ocean, I breath better and can do much more when I'm breathing salt air. It's crazy, but I swear by it.

Alergies and sinus problems are killers. I always travel with sudafed and Robitussin DM. The dr.'s have prescibed all the meds out there but I find I can control sneezes and coughs with simple over the counter stuff. But I have to be carefull, at the first sign of a cough, I gotta start taking Robitussin. If it starts to get worse meaning a simple cold then I gotta see the doc.

Pain is actually worse for me the 2nd year. Don't know why? but I was told the plerul sac fills with fluid and then gets harder with time. It takes about a year to totally fill up. Don't know if its true but makes sense to me. I'm also alot more active, play golf and have a bit of arthritis. I also take vioxx for the pain which works just fine.

Any way, good to hear from ya again.

God bless, stay well and we should have a section on the page on living with 1-lung cause it is an experience.

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today"

[Gina D.]

Hi There! OK, I'll chime in, even tho I only lost part of a lung, not the whole thing. I have experienced a couple of these things, and I am told I am crazy too The "Exhaust" issue is one that started right after surgery, and your comment made me laff really hard!

I don't exhaust from "there", I belch tho. And several times a day. Spontaniously. Doesn't come from the stomach, it comes from the chest. I have never been a cronic belcher, but it started after surgery for me too! What YOU do, hey, I am italian and a pro at that (In an Italian family, that is considered a skill) and wouldn't notice a difference in it

The belching thing has been brought up with all my Docs, none of them have heard of such a thing. It might possibly be do to lack of smoking too, I don't know. If this is the worst that happens, I feel pretty lucky and can just laff at it.

Heat is a huge problem for me too, and I live in So. Cal. Altitude is not a problem tho. I have been as high as 7800 feet and not noticed any change. Might be the more capicity thing. My docs were concerned because I LIVEat 4600 ft, and they wouldn't let me come home after I got out of the hospital. I had to stay "down the hill" for a bit. I mentioned folks that live in Denver have this done too.. surgeon said "Oh yeah" and I was allowed to come back up. No problem.

OK, here is a dumb question: Beano????