kimmek Posted April 10, 2005 Share Posted April 10, 2005 This seems to be the latest problem, and nothing is making it better. Mom had been doing the nebulizer for about 2 yrs 4 times a day when her cancer was found. Almost from day one of starting chemo it got better, to the point she didnt need the nebulizer at all. For the first time in 2 yrs she could go to walmart, grocery store etc.without it almost killing her. Doc had put her on 20mg prednisone. But then they wanted her off, and s we would taper her off or down anyway. But when she was having all those issues with pain back in Nov, and had the minor back surgery, her breathing went back to the way it was if not worse even. We have told her pulmonoligist this as recently as 2 weeks ago. All he said was to get her off the 30 mgs of prednisone she had been taking. She has started pulmonary rehab and is pretty much unable to do it, she is so out of breath. On friday she was able to to 2 different machines for 2 minutes each, that was all she could do. That is not much. 4 minutes total. This is supossed to help her, but i dont know how if she cannot do it. She is on 20mgs prednisone now, but im thinkging she needs more maybe even 40. I dont know of anything else for her to do or take. She has her nebulizer with duoneb, advair diskus,albuterol inhaler and the prednisone for her breathing. I dont think really this is related to cancer, but more her COPD. Does anyone have any ideas suggestions of something we can do or medications to try that might help? If we go back to the pulmonoligist i would like to be armed with more than she cannot breath. oh and she takes Difil-g tabs for the mucus to help break it up. Yesterday we went for our weekly Walmart outing. I parked right up front, first space and by the time we got in to the buggys' she was having a very hard time. She sat down right in the front at the cafe while i got what we needed. So now she is unable to even walk thru Walmart. We took her to the GP doc friday and he said her lungs sounded OK, he had heard them much worse, but he went ahead and gave her a Kenalog shot as well as a week of antibiotics. This is about the 4th time we have done this bit of treatment for her shortness of breath. Its not working or if it does its not for long. Her breathing is very loud even when she is doing nothing. This scares the crap outta me. We get rid of the cancer and now it looks like the COPD is gonna get her. I dont think her doc is doing enough and actually its not the doc it his PA. And I am tired of seeing him. the only time Mom saw the actual doc was the very first time we went in. Is this normal? Seems like you would see the "real" doc at least on occasion, especially if the problem is not getting resolved. Anyway thanks for listening and I appreciate any thoughts on this. Take care all Kim Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 10, 2005 Share Posted April 10, 2005 Hi Kim, My dad had severe COPD and it sounds like your mom is getting similar things in her nebulizer that he did. You don't mention oxygen. Is she on oxygen? If not, I'm assuming her oxygen saturation is ok. I'm afraid I don't have anything else to offer, but I know that as bad as my dad's COPD was, he only had to take prednisone occasionally, and usually just a 6-day dose pack. He did get much worse and was later hospitalized and he was on some kind of steroids off and on, but not continually. Mostly, they had to keep increasing his oxygen. If she isn't strong enough to do the treatments and keeps getting worse, I would just take her to ER. Also, I don't know what a PA is, but I'm assuming it's a nurse or assistant of some sort. When you call to make an appointment, can't you ask specifically to see the doctor and not the assistant? If not, then I would be doctor shopping, if I were you. Any lung disease is very serious and needs the attention of a specialist. Lots of love and prayers, Peggy Quote Link to comment Share on other sites More sharing options...
kimmek Posted April 10, 2005 Author Share Posted April 10, 2005 Peggy Yes mom has Oxygen but she really does not need it all the time, when she exercises she wears it, she has tried these last few days using it, but there really seems to be no difference in the way she breaths. She has been on prednisone daily since July. And yes the PA is a Physicans Assistant. I really dont know how much school they must have or what the qualifications are to be a PA, only that he cannot write Rx's the doctor has to put his Jhn Henry on them. I think I will call in the morning and see if I can get her in to see the doctor, the real thing. This is no way of living. Thanks Peggy Quote Link to comment Share on other sites More sharing options...
Justakid Posted April 10, 2005 Share Posted April 10, 2005 Kim - I know about the breathing thing, few..... I am currently on 40mg prednisone and the nebulizer every 4hrs (since Friday with the nebulizer) and had awesome improvement, until today........the mold and pollen count here are very very high and may be affecting my breathing today. I see the Pulmonary Doc tomorrow and will let you know what he says. I can't take most breathing meds cause they increase your heart rate and I'm on heart meds. I'll post tomorrow and we'll see what he does for me. Quote Link to comment Share on other sites More sharing options...
paddy Posted April 11, 2005 Share Posted April 11, 2005 Are the doctors quite sure that your Mum doesn't have effusion in the lung. My husband was examined first by a GP and then the Pulmonary specialist and niether of them picked up the effusion. Only after I made a big fuss did they eventually have an xray done and found that the lung was completely full of fluid. The symptoms were difficulty in breathing and complete fatigue. I hope this isn't the case but I thought I would mention it anyway. . Good luck, Paddy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted April 11, 2005 Share Posted April 11, 2005 Good suggestions all. Kim. I would agree that your mom deserves to worked up by not only a real doctor, but also someone who is a good lung specialist. I had a dickens of a time until I found the one I am with now. Your Mom is very fortunate in that she has you for her advocate. Time to dust off your gloves and if you need help in being assertive, maybe you can call up Justakid's Mom and learn assertiveness from her. I sure wish I had her on my side! We try so hard to be good patients and not rock the boat, but it sounds like the patience is worn out and service is what is needed. The ability to breathe is basic to all of us. Your Mom deserves to breathe. Good luck with this Kim...you are doing and have done a remarkable job for your Mom. I just want to encourage you to get fiesty with someone! Go for it! Love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
karenl Posted April 11, 2005 Share Posted April 11, 2005 Kim Ditto what Cindi said. Hope everything gets sorted out. And don't forget to look after you too! Karen Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted April 14, 2005 Share Posted April 14, 2005 I just saw your post or I would have posted this earlier. Johnny had COPD and I know that he did very well while on the Prednizone when he was getting another drug with it. I just recently found this article that explains why. The drug he was taking was Theophylline and I'm sure stopping that was one of the things that led to his anxiety problem. It relaxes the air ways and makes it easier to breathe. This study I found may help you know what to ask for. I do know that the Theophylline worked. I'm not sure if it was just working on it's own or if it was because it broke that barrier and allowed the Prednizone to work. You can read about the research here http://news.bbc.co.uk/2/hi/health/4408107.stm Best of luck. I sure hope this works for your mom. Quote Link to comment Share on other sites More sharing options...
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