|
Post by maryaz on Jul 23, 2010 18:20:58 GMT -5
Went to the Pulmonary doctor today specifically about my breathing. He said that I could have gotten like this due to progression of disease. He feels that likely the Prednisone I had previously was not enough. He wrote me one starting with more and tapering off longer. He thinks the last one didn’t do it. I thought I had been struggling too long. He said there are people struggling all summer. He is not the one that prescribed the previous prednisone. X-ray taken and almost the same as the last one. It was a while since I had the last one. Didn’t see anything different and nothing wrong. This one was better than the one in 12-2005 which showed probably a little pneumonia. Xmas 2005 I missed. I was really sick then. I finally got something to treat my sore nose. I will share it with others if I find that it works. I am talking to those with scabs, not just sore. Gave me samples of Xopenex to Neb because I don’t feel the albuterol neb works. The neb might help too. He feels if the person’s MDI technique is not good, then the Nebulizer is a better one to use. Unless do not have a nebulizer for out and about. I asked about the duoneb and he said that they do feel that using atrovent/duoneb cancels out the spiriva. or vice versa. My husband told him how bad I use my MDI when I am struggling. Well, ya, I cannot inhale, as I am struggling to breath, so it doesn’t work.grrrr. He did suggest try using a Neti Pot. I told him I did it only once with Neil Med and it sort of grossed me out. He suggested the Neti Pot is a little easier to use if it bothers me. I thought it all went thru the same. I am off the sleep masks until I get my nose cleared up. That’s okay with me. If I get my breathing better, we will probably go back to rehab to be sure I workout. I need to lose weight again. I gained back on the second of my last two pred bursts. I don’t know how to stop it this time if I start eating, but we will try to watch it. I don't eat much normally anyway but it doesn't take much to gain for me. I get so sob so easy right now. I am okay sitting but gets difficult as I talk or eat too much. At the computer is okay, if no stress in the background. I barely made it thru the X-ray. I hit 70 just getting back to the room, which was close. He really seems to lean toward needing the more Prednisone. He doesn't beat around the bush with me. He was not my regular doctor when I was in the hospital but was in the same group and saw me and Joe then. We have been together thru a lot. When my other doctor left, I went with this one as I knew him. He would say what he really knew. I do plan to work out now but not over doing it. I couldn't overdo if I wanted. What a dumb statement. I am really tired right now.
|
|
|
Post by merryfl on Jul 24, 2010 6:06:36 GMT -5
Mary - he sounds like a knowlegeable and sensible doctor. I hope he can get you more comfortable. Eating and talking were the 2 hardest things for me. Both would get me very SOB and make me tired. I had to rest/nap after every meal. And my kids never did understand why I didn't like to talk to them on the phone. The neti pot from Neil Med is the same as all the others. Not sure what the doc meant unless he was talking about the stuff you put in the pot. I used one for a while. It didn't gross me out, but didn't help either. The best thing I ever found for sinus is swimming in the ocean. I guess the neti pot is supposed to be basically the same thing--but not to me I hope you can get back to rehab - I know you enjoy it.
|
|
|
Post by sue on Jul 24, 2010 9:23:51 GMT -5
Mary, this has been a hard summer for me too, all the heat and humidity is finally bothering me. I use my Neti, It came with a bunch of saline packets to mix with lukewarm water. It kinda reminds me of swimming and water goes up my nose, lol, then that feeling passes. Gotta keep your mouth open some or some will go down your throat. I think it helped my last sinus infection. To me, if gargling with salt water helps a sore throat, then a neti cant hurt sinus stuff.
|
|
|
Post by azbj on Jul 24, 2010 9:42:08 GMT -5
Mary, once again, we have similar problems. I'm another one your PD said was suffering all summer. You mentioned several times on the board you weren't feeling well and I assumed it was the weather, like it was bothering me.
My PCP added Duoneb last hospital stay but I quickly asked her to re-think it later. It made me really shaky. I still use the neb with albuterol and saline when feeling rotten.
I feel like I have learned how to do my rescue, even while panicking. You may have already tried it this way. While I'm trying to catch my breath, I'm shaking the med, when I can get a tiny space in gasping, I suck in the med and hold it for a minute, making sure I can feel the puff go in my back throat. It is hard to hold for a second. Then same with second dose.
Never could get a spacer fast enough. I have rescues all over the house, some without the caps, so I can grab them as needed.
I tried the Neti Pot and hated it. Made me gag. Don't know what Neil Med is. I use that OTC saline spray sometimes, but it barely works. Maybe it's the sleep masks that dried you nose. I still use Ayr. Sorry the sores have gotten so bad for you.
The only time I'm not sob is sitting. I have a potty next to my bed at night so after my 02 is turned down, I don't have to walk so far. Took me a long time to agree to it - it seems so old-lady-ish.
Still not sure if it's the humidity, or allergies, or whatever. My doc gave me Levaquin. She knows I don't want to take Pred unless absolutely necessary. It made me gain so much weight, I hate it. But I'm glad I took everyone's advice and called her. My chest is feeling soooo tight. It'll be okay now.
Sorry this is so long. Don't worry about working out until your breathing is better. Hope that won't take too long.
bj
|
|
|
Post by maryaz on Jul 24, 2010 12:49:09 GMT -5
Sue, which Neti Pot do you use. There are different ones. Walgreens has these showing. I want a good one because not thrilled at doing this but will do whatever might help: www.walgreens.com/search/results.jsp?Ntt=neti+pot&x=13&y=10Merry; I forgot how real important all the talking and eating was. I went thru all of that back in 2002 after couple weeks on the vent and being so seriously ill that I could not do one thing for a while. I just told Joe yesterday that I need to quite both. Even tho I said it, I didn’t take it as seriously as I am after seeing you write it. We used to have signs up and I told Joe yesterday we may have to get them back out. My son put one in my Bedroom where I was put and it said WE CAN HEAR YOU!! And had some cute threatening message like "Big Brother is Hearing you!. It was because they had gotten those baby monitors that you put in the baby’s room and the other where you are. Then they had a turtle plaque made of wood that said Turtle Xing, Go Slow! ;D I just realized last night after I left the dinner table early, that there are often 5 to 7 of us eating. No wonder I want air moving. Everyone talking. I probably lose some o2 there too. Didn’t realize that until last night. I do nap after dinner this summer. Some of the things to help us can be so simple, yet so easy to forget. I hope some of this might help some others that are having a rough time. What the doctor meant about the Neti Pot was that you don’t have to squeeze it like I did with the Neil Med squeeze bottle I had. Bj; I don’t think the OTC saline works too well either. It dries me out too. Watch leaving those inhalers laying around with no cover. Could be inhaling dust or whatever if not covered. I have to find a better way to cover my sleep mask while not using it. It is so full of lint and stuff. I put a towel over it but didn’t help much. I have barely been outside this summer. My husband and I disagree about the outdoor air sneaking indoors. (grin) When I get sob, it is like I am stacking breaths and my chest gets so tight. I just cannot seem to inhale. I keep working on it. I know I should be relaxing to breath and I don’t. I tense and shoulders up. I feel terrible and tell myself to relax but cannot do it. I need to spend hours working on this. I need to get my DVDs out and watch them again. My saturations have been going into the 70’s and that is bad for me. I have said for a long time that I think I could breath better if my nose got better. I am hoping. Hope it didn't go too long. My breathing is so bad and to use the ointment that I got from doctor yesterday to clear it up, I want to get the Prednisone to kick in first. Using the ointment, I am to be off my bipap. Yesterday my bipap was really helping me to breath, better than the nebulizer. I also would like to get the neti-pot to start using before I start with the ointment. Bj; The oxygen is very drying and then the medicines, etc. Just me. Been dried for years. For me, this has been a very humbling disease from the first diagnosis in 2002. I would never have felt I could feel embarrassed with my husband of 41 years but back in 2002 I was. I could do nothing for myself for a short time. Don’t be concerned with the long post. For me, I like comparing situations. Besides, I am the last one you need to apologize for that. I wouldn’t try to work out until I can keep my saturation up. I never know for sure if mine is allergy/sinus or weather or what. A lot of it is hard to tell. When I have been congested like with a cold, I have had to add a cough syrup to my meds to get the junk up. With a tight chest like from a cold. I need the prednisone to help me breath. There is not much air moving in my lungs again. Happened before. Hope it clears up. This is the closest to my 2002 experience that I have come. I was really tired and slept last night once I got to sleep. I think I was really afraid to sleep for fear of not breathing. I got up to take my meds and will take a nap after a while. Thanks to all of you for your input. Most of you know my story but for some that don’t, this is it from when I was diagnosed. I have shared it more often on CI. This is sure bringing back memories more than my other excerbations. inspired.freeservers.com/copd.htmlHere are some COPD links from one of my webpages if anyone is interested. inspired.freeservers.com/links.html
|
|
|
Post by Cherylmcc on Jul 24, 2010 15:00:33 GMT -5
Mary - it sounds like you're having a pretty rough time right now.I really hope that everything you're doing will get you back on track.
I can relate to not being able to breathe through your nose, but for a completely different reason. I used Otrivin nasal spray for about 10 years and of course got addicted to it. I finally weened myself almost off of it by gradually mixing in more and more saline with the Otrivin. I just couldn't seem to get off that last little bit. The Dr. prescribed another nasal spray (Beclo - something) (I'll have to look it up). He said it would help to heal the damage I had done to the inside of my nose, while helping to keep my breathing passages open.
|
|
|
Post by maryaz on Jul 24, 2010 17:37:08 GMT -5
I am having a bad time. I am okay staying still but don’t move. If I was sick sick, like a cold, then I would have to be in bed. Then you all would not have to read all my long posts. By the time I would get better, it would all be old hat. I am not sick, I just cannot breath. I hope I get better too and soon. I am taking a computer break in a bit. Been on too much today. Seen some interesting things though. Mine are like scabs in my nose. Just like if you skinned your knee and scab formed. Hard to leave it alone. It feels larger than it is and blocks the breathing, IMHO. There is steroid one called beconase. I am using the generic of Bactroban which is more for infection. It isn't an infection. Going to give it a try. I sure feel better today than yesterday. I was getting scared. I guess just some confirmation with the doctor probably helped and having some instructions and knowing I have this awful Prednisone. I have Pred on hand but will not use without doctors instructions, unless just to start it on a weekend. I would never self-medicate with it unless some real urgent need. I never want to use it unless necessary. Thanks for the encouragement.
|
|
|
Post by merryfl on Jul 24, 2010 18:43:47 GMT -5
Mary - I get those scabs in my nose, too....just the left nostril. Go figure. I use triple antibiotic ointment on it and it helps. Then it gets better so I stop using the ointment and it comes back again.....Sigh. No idea what causes it - but I've had it for years...way before I used O2, so I know that's not it. Let me know if the bactroban works.
|
|
|
Post by maryaz on Jul 24, 2010 21:49:56 GMT -5
Merry, I have to be very careful that I use a water based ointment. My doctor had to look it up for the name. He knew there was one. I don’t know either what would cause it for you. I did searching on and off for few years trying to find something. Slowly I was getting there.
I pinned the doctor down yesterday and took my Internet papers which I really don’t like to do. I respect my pulmo doctor. My right side is worse than the left. I get way too dried out and then the meds and the o2. Will let you know. I am going to use the ointment after I get a neti pot. Should get that tomorrow. I want to rinse also if I can. I don’t want to but feel I should. I want this nose cleared up if possible. I will know I tried.
When it would get dry at first and get hard it is hard not to be picking at it and thing that is how it all started. Just guessing. I don't remember. Will let you know.
|
|
|
Post by virginiaal on Jul 24, 2010 23:02:11 GMT -5
Oh Mary, your in so much misery right noe, wish I could help real bad , but I noticed BJ and Smilley are tell u whati would,, I use the nettie pot like you, thesaline mix and Aye. raelly helps but i can are just not gettting any breath, Seems you might need more to open u up, I use symbicort 160/ 4.5 and was on spiriva in the middle of day, but didn't do me anygood, sonow i just take three symbicort 3 times dailey, it feels better, not telling anyonr else to do it, but the preds are not helping me much right now, but still take tem, getting the moon face an big feet again. so in la la land right , can't think right, and very titred..see you all tomorrowe will go to bad ab will be praying for you..my special friend, I care so much for you. nite Virginia
|
|
|
Post by azbj on Jul 25, 2010 7:49:13 GMT -5
Mary, I saw on the other board where you were having problems getting your Neb meds under MediB. Try WalMart. They're usually pretty up on this stuff. I pay nothing for mine. You might have to remind them if they try to charge.
bj
|
|
|
Post by maryaz on Jul 25, 2010 12:59:18 GMT -5
I had this message all typed out to put here last night and could not get into the Proboards, here or Canada one. Had a message up from Proboards. Had to wait until now. I am leaving it typed as was last night. Message below was written on Saturday July 24th:Thanks Virginia; You take care of yourself. Don’t be worrying about me. I was really bad but things are coming together better. I think you are having more problem than I am now. You can read this in parts if you have to. I know it is very long but important stuff. It was not my regular pulmonary doctor that gave me my Prednisone the last two times. The lady I saw is a FNP-C whatever that is. I think a nurse like. She can write scripts. I never really noticed much relief those times. I already am improving today. I was really bad. I even scared myself and Joe. My regular Pulmonary Dr yesterday said that he doesn’t think the Prednisone burst was enough. I remember now faintly this happening once before. He scripts it a little higher and then tapers much longer. He goes down to 1 pill a day for week at the end and then ½ even for another week. He starts at 20mg twice day. It ends up lasting almost a month. I was really beginning to think I was not going to improve. He has been seeing a lot of people that have struggled all summer. He cannot say for sure but he felt pretty certain that this should work. I could not safely get to the bathroom the last two days. I am much better. Will take time. I am not that good. I am out of being scared. He did check with an x-ray. Joe asked about getting a scan. The X-ray is about the same as it was the last time and that has been a while. He also pulled one out from December of 2005. This one is better because then I was sick and he said probably had some pneumonia. I think it is the Pred that I need to open me up. At least my chest is not feeling as tight as it was. I felt like my ribs were going to come out of me. Pushing up very uncomfortable. I am using the Xopenex instead of the Albuterol. Still not sure if it is helping. Virginia, I also use Symbicort 160/4.5 and Spiriva everyday. Spiriva since it came on the market and Symbicort since it came out here in the USA. Sometimes I don’t exactly always space my Symbicort a full 12 hours apart. It didn’t seem to always last a full 12 hours. I started using a Spacer with it. Mine is from ADC and it fits well in the spacer and really seems worth the trouble. You can take your Spiriva in the morning. It is once a day and should last. Spiriva can take a few weeks to start working for someone just starting it. It took me into the fourth week before I noticed it. Once it worked, there is no way to know if it is still working unless you quit taking it and you get worse. Then you start again and see if it will kick in again. I know because I joined a study/trial and I had to stop my Spiriva. They let me replace it with Atrovent but it didn’t work for me and I had to drop out. Sure could tell that I quit using it. Virginia, Did you ever use Atrovent or Combivent. Spiriva is just a long acting Atrovent. When you use your Symbicort, how many puffs do you take each time of those three a day. How much Pred are you on Virginia. I thought it took a lot to swell like that. Are you on pills. Is your heart okay? Do you have an oximeter and can check your saturation. You sound like your saturation is low. I still don’t know if you saw your Pulmonary Dr or PCP. I wish you would go see your regular Pulmonary Dr. This is important when we are this bad. I like the assistants at my Pulmonary office but I wanted 'my actual doctor' this time because I felt I was really in trouble and if so, he would be the one to be able to help me and I feel confident in his treatment. You need a good Pulmonary Dr but they are more up on the disease than a general. Virginia, I am not totally thru thinking this but close. I was thinking that I pretty well was getting at the end of the road. I have a good doctor. When I made this appointment. I told the receptionist that I was having a real hard time breathing, which I was, but that gets you in, but because it was soo bad and my doctor knows me so well, I only wanted to see him. I was lucky he was even in yesterday. I called late Wednesday. I know this will now be very long but want to add some video for proper use of inhalers. We all need to re-check that our technique is correct. I have to because I get off track on my usage. I am also going to put this in a separate topic too. Here is a video that shows just how to inhale. I used this one as her’s seemed watched more than others. www.youtube.com/watch?v=51Zjwcx7ZbsHere is one for spacer. www.youtube.com/watch?v=CEUm--zy8xY&feature=relatedHere is Part 2 of spacers. The end is for a child but interesting. This blue spacer is the one I use and like for me. The first Part 1 shows how to do for the adult. This just adds what to be aware of with the Aero Chamber. www.youtube.com/watch?v=LScBYTATOnY&feature=relatedHere is a really good Video on use of Spiriva. www.youtube.com/watch?v=vDtOzRmI80kP.S. Thanks Bj too.
|
|
|
Post by maryaz on Aug 6, 2010 0:04:10 GMT -5
When I first started out with problems it was just ‘sob’. Of course, if you cannot breath, nothing else does matter. I was not sick too. I ended up this past week being sick too. Sinus/allergy issues. Therefore I had to change around some of what I was working on. My breathing is much better. Unless the prednisone is masking it, I should be okay. I sure didn’t think I was going to be after so long of struggling. I just don’t go into the 70’s.
I set clearing the nose up aside for a bit so I could use the Bipap. The bipap is great when really struggling to breath. Big comfort in having it. Never ever would have thought I would say that.
Azbj, how are you doing. Little update would be nice. You mention your chest being tight. Mine was too. Really tight. That is when the doctor says “I don’t hear any air moving”. I went in yesterday and he ‘heard a little air moving’. I always know too. When tight, the air is not moving. That is a bad thing. I remember too, in the beginning I was complaining that it felt like my ribs were trying to get out. It hurt.
I am eating more than I should but not gained yet. It will probably jump on me all at once. I hope to be working out by next week. Of course I have said that before. Reading thru my posts is a good thing because I can see some positive changes. I am not sleeping as much now as I was. I was sleeping often during the day. I was not swelling. My doctor always checks me. I questioned that I rarely retain fluid. I was told to stay away from the salt. I rarely use salt extra and don’t eat too many salty foods. I noticed I started to pee more after I started this last Pred. Don’t know what that was all about.
Since diagnosed in 2002 and spending a couple weeks on a ventilator at death’s door, I have only twice before this thought that maybe I would not make it thru an illness. I was barely able to be kept out of the hospital. I spent at least 2 weeks down in bed both times. Breathing was bad and along with cold or flu. I would lay so very still and wonder if I would ever be able to get around again. It takes us all longer to recoup after we get well but I made it back both times. This time, was the only time that it came on just as sob and I didn’t think I was going to get back to a normal again. We came as close to calling 911 and not doing it as you can.
My house is getting empty. Only have 4 of us living here now.
Cheryl, I just love your new sig. Wow,
|
|
|
Post by azbj on Aug 6, 2010 16:23:37 GMT -5
Mary,
Went to doc yesterday because still coughing up green goop. Didn't get in as she was over two hours behind. Went today.
Kinda glad I went. I had put it off because I thought hospital or Pred and dreaded both. However, she said my lungs were clear and it sounded like Sinus/allergy issues. I believe her cause that's what I thought.
She put me on a Z-pac which fortunately I just ordered a bunch from ADC.
We'll know in a week if she was right.
Hope you Pulmo give you more encouraging news. Mine suggested the Neti Pot but I declined, gags me. She said use my saline spray more and it should be fine.
thanks for asking, hope you feel better soon. (SOB but no chest tightness) Want you to feel the same (or better).
bj
|
|
|
Post by wendyco on Aug 6, 2010 19:54:40 GMT -5
Mary I am so glad you are feeling better....sometimes it just takes longer than others and each time one always wonders if this is it and you won't improve again........hip hip hurray you are getting it back!!!!
|
|