karenb Posted April 22, 2004 Posted April 22, 2004 I want to know if any of you have had to have oxygen 24/7 or only on occassion or how does that work. My father just had surgery yesterday to do a medianstinoscopy and thorascopy in the plueral area because he had a pleural effusion last month and the doctor's attributed it to cancer but just couldn't actually prove that he indeed did have any cancer left in that area. If there was no evidence of cancer they were going to go in for a RL lobectomy. I might add that the doctor's were not prepared in the slightest for the actual lobectomy because they were completely convinced that they would find cancer once they were in there. Well, much to their suprise there was absolutely no evidence of cancer cells or tumors after they drained the fluid, plucked out some lymph nodes and did a wedge resection but what they did find was a severly beat up right lung that was damaged to the consistency of "applesauce and dust" in the surgeons words. It appears that the lung nearly crumbled to the touch and the the damage was well past the area that the tumor was. It appears that the radiation/chemo regiment must have beaten the snot out of the good and the bad part of the lung. After a lengthy conversation, while my dad was still under anethesia , to the pulmonologist, they agreed that it was best to take the entire lung. Well, none of my family and I were ready for that one I can tell you. I think our jaws were all on the floor when we were informed of that. We did know, however, that this surgery could of had a very different outcome had they found any residual cancer in there so although we were all completely stunned w/the news, we were grateful ultimately. The problem is that my dad has absolutely no clue what his situation is. He was so terrified when they took him for surgery because he thought they would deem him inoperable and that would be it for him. Well he is still on a respirator and heavily sedated so he does not know that he only has one lung left. I know the first thing he will ask is "will I have to be on O2 the rest of my life or what am I looking at??" So could any of you answer that question for me because I really don't know. Is it just a given?? Why was his lung so beat up after rad/chemo?? Did that happen to any of you. His tumor was only 5cm big so why is the whole lung defunct?? Radiation Pneumonitis?? Pulmonary Fibrosis perhaps??? Also, what will his healing process be like?? How long?? Please help if you can!!! Thanks so much!! Quote
Snowflake Posted April 22, 2004 Posted April 22, 2004 Karen, I work with a man that had his entire left lung removed when he was 14. I don't know WHY he had it removed, but that he is a functioning adult who is not on oxygen. There are many "one-lungers" on here, the BEST example of "active" would be DavidP, the biker - er, bicyclist... No oxygen tank strapped on HIS bike... Not sure on all your other questions, just thought I could give you a boost with the examples here. Becky Quote
mhutch1366 Posted April 22, 2004 Posted April 22, 2004 Karen, Your dad should be okay without oxygen if his other lung is basically okay. Tell him to use the incentive respirometer religiously, it's the best thing for him. When he gets home, try to have him increase his exercise to get the lung stronger and moving as much air as possible. By all means, pester the doctor and ask what they think. If that hit his lung so hard, there must have been either more cancer or something else going on, which thank goodness now you have avoided by having it removed. Think how crazy you would have gotten trying to get that lung functioning if it was so beat up yet cancer free? I hope your dad feels better and cheers up soon. XOXOX MaryAnn Quote
Frank Lamb Posted April 22, 2004 Posted April 22, 2004 KarenB,I had my left lung removed and didn't need o2.However after radiation and chemo Inow do need oxygen.I use it all night and during the day when ever doing any activities.(which are numerous-golf-fishing-yardwork-hunting etc.)My oxygen level at rest is good 95 to 97%.As soon as I walk 4 or 5 steps it drops to79 to 82%I was told that anything under 90 % is bad and could cause stroke.I hope someday I can get off it but if need be to stay alive and active I'll wear it.But it is a pain in the A--!!!!!!! The radiation & chemo was to the right lung after metastisis. Quote
Fay A. Posted April 23, 2004 Posted April 23, 2004 Had my right lung removed. Needed oxygen for a while because I developed a pleural effusion on the side of my remaining lung that caused the lower lobe to partially collapse. Once the effusion was gone and the lung re-expanded I was able to stay off oxygen for quite a while. I have to tell you that being on Oxygen is a real aggravation, but it I don't think it's the worst thing that can happen to a person. I named my big tank "Igor", and the mini-tank "Midge". I made a few costumes for Igor (a chicken suit, a space alien, a roman centurian, Thomas Jefferson-Do you have any idea how difficult it is to make a tricorner hat?-). I've been working on new costumes for possible future use: Cleopatra for one. Attitude, Attitude, Attitude. Square up the shoulders, hold the head up, slap on the nasal cannula and stare everyone straight in the eyes. Quote
Snowflake Posted April 23, 2004 Posted April 23, 2004 LOL - FAY! YOU are a hoot! Have you thought of a green suit for your tank with a lable of Perri-air?? Scratch that, it's a French thing and you live in cutting edge California - those PETA folks might toss some paint on you like they do those people that wear furs... (and an aside here, were I to wear a fur and someone tossed paint on me for it, I'd SKIN the bast--- well, ya know...by tossing the paint on the coat, they are ENSURING that those animals died for nothing...) ANYHOW, that was MY attitude sticking out there - go figure! Expecting a stream of hate mail, but I'll deal with THAT issue... How 'bout ET? Tried that? OR telling people that you breathe imported air from the Alps as it is far more healthy.... OR that it's a decompression tank and you dived too long for pearls in your youth and have been decompressing for five years now?? OR that it's scented air to get around the stench of pollution or wildfire smoke?? (Speaking of smoke, that brought GinaD to mind - heard from her lately??) Off to bed for me, my mind is beginning to wander.. Thanks for the happy visual, Fay! Quote
karenb Posted April 23, 2004 Author Posted April 23, 2004 Fay, you do indeed have an awesome and quirky way of looking at life!!!! Thanks for the amusing costume stories. Although I find them to be completely on beat w/my sense of humor, I'm afraid to say that right now my dad will not find it or anything else amusing to him because he can't get his pain under control post surgery. They want him to have a productive cough to get all that crud out but it nearly kills him to talk let alone cough. He used to comment that being on O2 would really just not be where he ever wants to find himself but in light of the fact that it may be a possibility for him verses having Stage 4 w/plueral effusion; I think he will now be changing his tune. For now we just need to take this post -surgery pain day by day because this is a real doozy!!! Holy cow; he looks like he has just been through the war. They obviously must of have dropped him or something during surgery because they busted his lower lip (three stitches) chipped his tooth and he has a cut on his head!!!!! Not only this but they struggled with the tube down his throat for 1 1/2 hrs so I'm sure his esophagus is feeling some pain too!!! What a nightmare, he looks so pathetic but nonetheless, he was blessed to even get the opportunity for surgery I'm so gratefulgratefulgratefulgratefulgrateful!!!!!!!!!!!!!! So thanks for the replies they really do help and humor me, in Fay's case!! Take care and I'll update on his progress as we go!! Quote
Snowflake Posted April 23, 2004 Posted April 23, 2004 Karen, I can relate and empathize with the post-surgical pain - I was in the hospital after my surgery for nine days as they tried to find ways to manage it (and a big bout with a Vicadin allergy scared the bejesus out of me). Time will help and it will be worse before it's better. The muscle heals on a timeline, the nerves heal on a different timeline (I'm 14 months out and STILL have nerve issues)... There's the sore, the itchy, the tingly, the numb... As long as he is honest about things that don't seem to be working and gets the RIGHT drugs, it should be bearable...soon...I hope... Everyone's pain tolerance is different - and let me tell ya, it sucks to be a "wimp"! Becky Quote
Connie B Posted April 23, 2004 Posted April 23, 2004 Hi Karen, Sorry to hear about your dad, but I'm glad you found us. I am a one lunger as well, and I don't have O2 either. I had my left lung removed 9 years ago and was on oxygen for about 3 to 4 weeks after surgery. Healing is different for everyone. I had NO PROBLEMS doing that either. I was 43 at the time. None the less, did your dad have emphysema by any chance before his chemo and radiation treatments. That can make our lungs pretty paper tissue like. Kind of like burnt paper would be the best way to discribe it. We one lungers live normal lives as well. We may do things a little different and a little slower, but LIFE IS GOOD! Treadmills help to bring back lung capacity. Slowly she goes, but it's very doable. Also, I was in the hospital for 5 days after my surgery and home I went. I did have pain for about 2 months, but the power of drugs helped me through that. This is and can be a very slow healing process. Not to get to concerned about the length of it at this point. Lung surgery is the WORST surgery we can go through. I also had open heart surgery this last year (twice within 10 weeks time) and I'm here to tell you that was a cake walk compared to having lung surgery. My doctor told me when I went into lung surgery, that when I came out, and if he told me he took my ENTIRE LUNG, that, that was a GOOD THING! My tumor was 3 to 4 cm's in size. I also had lymph nodes removed that were cancerous as well. I am cancer free and doing just FINE! I wish your dad all the best. Please let him know there are MANY of US ONE LUNGERS out HERE and we're doing JUST FINE!!!! Best wishes to you and your dad. Quote
Fay A. Posted April 23, 2004 Posted April 23, 2004 Karen, Busted lips, broken teeth, and a cut on the noggin is NOT normal side effects of thoracic surgery. I think if it were me I would be insisting upon an explanation for those injuries, and RIGHT NOW obtaining copies of the operative notes, etc. I'm sorry his pain isn't well controlled. I've been through that a few times and it's rough. But the pain does get better over time. He has to use the spirometer...has to breath and cough. He doesn't want pneumonia and it can happen if he can't breathe and cough that crud out. Can you bring him a small pillow to hold against his incision to help with the pain when he coughs? Here's hoping that they get his pain under control soon. Wishing him the good luck from this point on. Sounds like he's had a rough go of it. Quote
Terrie Posted April 24, 2004 Posted April 24, 2004 Karen - I am a one-lunger, too, and had to be on oxygen for several months following my surgery. I is a pain - but have been oxygen-free (so to speak) for a year and doing great! I am afraid I would be questioning the facial injuries as well - that just doesn't sound right!! Best wishes for your dad - lots of prayers for a speedy recovery!! Terrie Quote
karenb Posted April 25, 2004 Author Posted April 25, 2004 Thank you all so much for your replies, it has definitely been an encouragement; for sure!!! If any of you are still following this thread of posts. Can I ask if anybody experienced a little bit of swelling/fluid retention in the legs and/or arms or both as well as a little swelling in the neck?? Also there now seems to be something irregular on his EKG since the surgery I'm not sure if it involves fluid or what. They don't seem to be really that freaked out about it but I'm of course a little uncomfortable w/this. Any insight would be greatly appreciated. Also, w/regards to the operating room incident, we are looking into that presently. His neck hurts now too probably because they dropped him!!! Quote
Fay A. Posted April 25, 2004 Posted April 25, 2004 Karen, I had swelling in the neck (on the side where the lung was removed) for a while after the surgery. The swelling in my lower legs and forearms actually lessened after my lung was removed. Glad you are pursuing answers to the problems he encountered in the OR. I 'm just very sorry he is having to go through so much. The thoracotomy is rough under the best of circumstances... Quote
kimblanchard Posted April 26, 2004 Posted April 26, 2004 I am a one lunger, having had mine removed the day before my 69th birthday. I had surg on Tues and came home on Sat. The gave me a prescription for pain medicine which I used but did not find necessary to refill. I had COPD so breathing was already compromised and now have had radiation on the remaining lung. I sleep with O2 and use it when exercising and working in the yard which I enjoy and am thankful I am able to do. I don't do inclines well or stairs so use oxygen when walking outside and don't walk in strong wind. Funny thing tho' I can walk 2 mi at 2 1/2 mi. per hour on the treadmill without oxygen. Exercise is most important and if the is a pulmonary rehab program nearby I would recommend it. Mine they thought was 7 cm but it had infiltrated from upper to lower lung hence removal of entire lung. Do pursue the operating incident. Quote
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