Sleepless in Seattle....NOT

[BookNut]

OK....it has been an interesting week or so. I just wrote a blog post on my recent unexpected hospital visit.

Sleepless in Seattle?..NOT « Wanderings? (http://wanderings.edublogs.org/2015/04/11/sleepless-in-seattle-not/)

[renidrag]

Are you okay? Love your writing style.
Dale

[BookNut]

Yes...feeling much better. SO looking forward to my own bed tonight!! Thanks for your concern and I am glad you enjoy my writing style. I always planned to write and do workshops on library issues when I retired....but have just been too sick to get anywhere. But I HAVE to write. It is my thing...along with reading!!

[annekat]

OK....it has been an interesting week or so. I just wrote a blog post on my recent unexpected hospital visit.

Sleepless in Seattle?..NOT « Wanderings? (http://wanderings.edublogs.org/2015/04/11/sleepless-in-seattle-not/) What happened? Too much excitement with the family visit? Allergies? I thought things were going OK with your great new med and wonder if any ideas were given as to why this happened. It is pretty scary! We will keep in touch. I agree with Dale, your writing style is great.... my mom was the same way, different style but very good writer and couldn't really not write. She also had some pretty severe breathing issues, coincidentally, which I think I've described to you before. Anyway, Darth Vader isn't good, and I hope it doesn't happen again!

[BookNut]

I started on the down hill road two or three weeks ago. It lasted only 1 day. that made me VERY happy as I took it as additional proof that the new shots are working. Then, a week later, it started again and got worse every day. Still thought I might get out of it. I made casseroles early in the week and some muffins for Easter. I froze the casseroles but had to do muffins last minute. Easter brunch was at someone else's house. We did have to do a fair amount of baby-proofing of the house, but once the gang arrived onThursday night, I did nothing but show them where to find the frozen casseroles. Kept to my chair so I could get through the extended family Easter. Monday I barely moved. It didn't seem to make sense to go to the dr. when I had an appt on Tuesday. I still have some hope for the shots, along with the addition of the saline inhalations. Need to do more research. That is one thing. When moving is not a realistic option, researching keeps my mind busy!

[annekat]

I started on the down hill road two or three weeks ago. It lasted only 1 day. that made me VERY happy as I took it as additional proof that the new shots are working. Then, a week later, it started again and got worse every day. Still thought I might get out of it. I made casseroles early in the week and some muffins for Easter. I froze the casseroles but had to do muffins last minute. Easter brunch was at someone else's house. We did have to do a fair amount of baby-proofing of the house, but once the gang arrived onThursday night, I did nothing but show them where to find the frozen casseroles. Kept to my chair so I could get through the extended family Easter. Monday I barely moved. It didn't seem to make sense to go to the dr. when I had an appt on Tuesday. I still have some hope for the shots, along with the addition of the saline inhalations. Need to do more research. That is one thing. When moving is not a realistic option, researching keeps my mind busy! Well, I wish there was more of an answer for you, even though the shots have been helping most of the time. Doesn't sound like a very good Easter for you, though maybe seeing the baby and everyone else made up for it to some extent. The saline inhalations.... do you mean through the nose or mouth, and delivered in what fashion? A special inhaler, a squeeze bottle.....? Or maybe your nebulizer. Just curious if it is something others of us might try. I've been using a steroid asthma inhaler the past week or so because of seasonal allergies, and it seems to help my "Wegs cough", too. My problems are not severe though, and nothing at all like yours. It's just that any feeling at all of trouble breathing is scary, and worrying about it can sometimes make it worse, for me, anyway! The steroid inhaler is helping me a lot.... I know you need something much more potent. I guess one of those things would be your nebulizer. My mom used that, but I never did except when overnight in the hospital right before WG diagnosis. Wishing you relief and freedom from these episodes!

[BookNut]

I plan to research the inhaled saline tomorrow. It is sterile saline solution that comes in ampules just like nebulized asthma meds. the idea as I understand it now is that the saline should be inhalledfirst. It is supposed to loosen the phlegm that has congealed in the lungs. Then you follow with an inhaled asthma nebulizer such as DuoNeb...not a hand held rescue inhaler...and that opens up the airways. My husband has never used the saline. That is new to both ofus. He DOES follow the DuoNeb however with a nebulized steroid, which acts to reduce and prevent inflammation. This works well for him...but the nebulized steroids just seem to tighten things up for me. I use Symbicort twice a day and use a spacer so as to breathe in a greater volume. It does seem to help some.

Ok..to bed with me. Saline might be worthwhile for Weggies to research if they suffer from respiratory issues. By the way...my roommate in the ER had been diagnosed with Sarcoidosis a few hours earlier. I liked her...but was not happy to discover she also had some serious respiratory infections. Hoping I did not catch them!

[Alysia]

Dear Jacquie,
I am glad that you are doing better. I saw what you wrote on facebook and it made me worried about you.
maybe it can a reaction (belated) to the shots ???
my sweet Phil used to nebulise saline and combivent. he had little ampulus of them. it helped him to breath better and cough out the staff, although sometimes he doubted it really helped.
take care and please update how are you doing.
your writing is beautiful. love it.

[annekat]

The hand-held inhaler I use is Flovent, contains steroids, is not considered a rescue inhaler, and is used twice a day, so it is like Symbicort in those respects. I also use a spacer, which I find makes it much more effective. The rescue inhalers I've had on hand, containing albuterol, I have not found to be very helpful, and they can cause problems from over-use. They made things worse for me when I was younger and that was all I had. Thanks for the explanation about the saline. Since I don't use a nebulizer, it wouldn't apply to me, but it something to keep in mind, for other people, or in case I ever do... strange that no one told you about it before. Asthma seems very complex and individualized in its severity and what it will respond to; it's sort of like Wegs in that way. I'm sorry that both you and Bob have had such trouble with it in your lives. It seems like another area that needs more research in order to prevent it and treat it, since some of the treatments just don't work so well for some people. I'm sorry your former hospital roommate has sarcoiditis, and will have to look that one up... it was mentioned elsewhere on the forum recently. I hope by now you have had a deep and restful sleep for as long as you want.

[BookNut]

Thanks Alysia! Feeling quite good after a solid 8.5 hours of sleep!!

It was actually a nurse who suggested the saline inhalation. I am glad she took the initiative to get the doc's approval. I have not heard of combivent....but I will bet it is an alternate name for DuoNeb....since duo and combi suggest a combination of two drugs. Lots of other inhalation solutions available...but DuoNeb is the only one that works for me. At home my script is for every 4-6 hours up to 6 times per day. Hospital had it as 4 times a day....period. That meant they stopped it at 6 pm and switched to another inhalant after that. They did not mention that, and I just assumed I was getting my DuoNeb...not the other inhalant which has always been ineffective for me. So....I was really scared when what I thought was my go-to medicine was not working. Thank goodness we got it worked out. At least i know that it is not all in my head that other inhalants don't work for me!

My suggestion to the hospital will be...don't come in and say "Here is your breathing treatment". Instead, come in and say "Here is your DuoNeb (or Xopanex or Albuterol etc)." And as a patient, I will now always ask for the name of the inhalant. Lesson well learned!

[BookNut]

The hand-held inhaler I use is Flovent, contains steroids, is not considered a rescue inhaler, and is used twice a day, so it is like Symbicort in those respects. I also use a spacer, which I find makes it much more effective. The rescue inhalers I've had on hand, containing albuterol, I have not found to be very helpful, and they can cause problems from over-use. They made things worse for me when I was younger and that was all I had. Thanks for the explanation about the saline. Since I don't use a nebulizer, it wouldn't apply to me, but it something to keep in mind, for other people, or in case I ever do... strange that no one told you about it before. Asthma seems very complex and individualized in its severity and what it will respond to; it's sort of like Wegs in that way. I'm sorry that both you and Bob have had such trouble with it in your lives. It seems like another area that needs more research in order to prevent it and treat it, since some of the treatments just don't work so well for some people. I'm sorry your former hospital roommate has sarcoiditis, and will have to look that one up... it was mentioned elsewhere on the forum recently. I hope by now you have had a deep and restful sleep for as long as you want.

Thanks Anne. Your well wishes for sleep definitely worked!

More research for me. I have never used Flovent. Will look into it. The pocket size rescue inhalers have never been of much use to me....though once I learned the trick of using a spacer, things got better. They give me about an hour of relief at best. a nebulizer is not horribly expensive and is often covered by insurance. They deliver the meds in a much more gentle and steady manner. Much more relaxing than a rescue inhaler. If your breathing and cough continue to be a problem, it might be worth thinking about. The hospital gave me anew mouthpiece for my home nebulizer. It is WAY more effective. So...there were some worthwhile outcomes.

I will see if i can find the new neb mouthpiece online and post a link in case it might be helpful to others on here.

[BookNut]

I did the research to find my new nebulizer mouthpiece set. Here is the info.


NebuTech Reusable High Density Nebulizer Set by Salter Labs (http://justnebulizers.com/nebutech-reusable-high-density-nebulizer-set.html)

[annekat]

Thanks Anne. Your well wishes for sleep definitely worked!

More research for me. I have never used Flovent. Will look into it. The pocket size rescue inhalers have never been of much use to me....though once I learned the trick of using a spacer, things got better. They give me about an hour of relief at best. a nebulizer is not horribly expensive and is often covered by insurance. They deliver the meds in a much more gentle and steady manner. Much more relaxing than a rescue inhaler. If your breathing and cough continue to be a problem, it might be worth thinking about. The hospital gave me anew mouthpiece for my home nebulizer. It is WAY more effective. So...there were some worthwhile outcomes.

I will see if i can find the new neb mouthpiece online and post a link in case it might be helpful to others on here. My hunch is that Flovent is a pretty common steroid inhaler for asthma cases that may not be as severe as yours and you might need something stronger. The med in it is fluticasone. I also just found out that is the same med as in Advair, which is also pretty commonly used. I think Symbicort uses budesonide, though I could be wrong and you would know... and am assuming it is used in more severe cases. I know I've never taken that. So anyway, I'm thinking you might not need to bother researching Flovent because I'm sure your docs know which inhalers should be right for you with your more severe issues. I agree about spacers.... funny how docs don't tell you these things, but the first steroid inhaler I used had a little spacer attached as part of the mechanism, and then when I was put on Flovent, there wasn't one, so I researched on my own and bought one online, because it just didn't feel like I was getting the med without it. It helps with albuterol, too, but I barely use that stuff and don't even have any right now, because I don't like it and it can get me in trouble. It is considered good for rescue situations, though, which Flovent is not intended for, so I should probably have some on hand. I'm open to other inhalers and also to nebulizers... I know my mom used one. It just seems like no one thinks my case is bad enough for that, and they may be right. I did use one in the hospital when I had escalating Wegs lung involvement, and am not at all sure it helped much, but that was undiagnosed Wegs, which is different.

[Jaha]

Here is a recipe that my Pulmy gave me for my nebulizer, I have COPD also.

Hypertonic Saline
1 Tbl of non-iodized table salt per cup water. Bring to boil. Once cools,
keep in container, in refrigerator. Discard left over after one week.
3ml or 1/2 tsp in nebulizer 2-4 times a day.
I haven't used it yet but will start this week. Best wishes to you.

[BookNut]

Ahh. I have tried both of them to no avail. As for a nebulizer...I think doctors might be unnecessarily reluctant to prescribe them for mild to moderate asthma. Seems like they might be useful ...and perhaps better ...for even mild asthma. They can be used for delivering most, if not all of the rescue inhalants...just at a much gentler and steadier rate. Although I suppose maybe more actual meds are delivered than the rescue inhalers. Then again, the nebulizer ampules do come in a variety of strengths. And of course, using one with a saline solution alone would mean no meds at all. I plan to talk to my doc and see what she thinks of using only saline solution once I am able to stop the inhalation meds. My hope is this might keep things in my lungs "loose" and prevent everything seizing up like it does. It helps so much to keep reading other people's ideas and suggestions. Gets my brain working. Prednisone seems to make me confused and fuzzy at times.

[BookNut]

Thanks Jana!! I am afraid this would TOTALLY freak out my husband. He freaks out that i have my own formula for my nasal rinse....let alone a home made lung inhalant! To keep him happy...I will buy the saline ampules. Nice that he is protective...but he sometimes goes overboard!

I will be VERY INTERESTED to find out how it goes for you. Please let me know. It really did loosen up my cough in the hospital. I also plan to do better at keeping track of my breathing with my peak flow meter. Maybe I will be able to predict and head off these exacerbations!!

My pulmonologist is adament that I do NOT have COPD. I personally think he is wrong. But asthma that is not well-controlled certainly has many of the same features. My oxygen level is not too bad. it was at 88 in the doctor's office before I went to the hospital....but leveled out to about 93-94 the last two days I was there. I have to get myself an oximeter.

Thanks for the recipe. Maybe he won't ask me what that pitcher of water is in the fridge?? :-)

[annekat]

Jacquie, you are probably right that docs are too reluctant about nebulizers with mild to moderate asthma. It makes me wonder if they are just lazy or aren't taking things seriously. What could be wrong with a gentler and steadier rate? Maybe people wouldn't have the problems with using too much albuterol, so that it doesn't work as well, if it was delivered more efficiently, in that way. And any of the other common meds. I think maybe what they gave me in the hospital via nebulizer was albuterol, though I'd have to find the old bill to know for sure. They didn't know what was wrong with me, just that my lungs were messed up in some way and I was having trouble breathing. So it was probably the most logical choice.

BTW, forgot to say how nice it was to hear about the great sleep you had! I hope it happens again tonight.

[BookNut]

My neb med of choice is DuoNeb, which is ipratr-bromide combined with albuterol. The Albuterol oart of it has some nasty side effects such as racing heart and shakiness. I am not much bothered. There is another inhaled med called Xopanex. It is much gentler on the heart...but insurance companies hate it because it is expensive. It does absolutely nothing for me, so i don't use it. that is what they gave me the night that they stopped my DuoNeb at 6 pm. i thought the ibreathing treatments that followed that night were DuoNebs, and when I found out they were Xopanex. I realized what the error was and why I was getting worse, not better.

I think sometimes that doctors are afraid people will react to a nebulizer with dismay as they sometimes do when prescribed oxygen. It is viewed as a scary medical device. On the contrary....as least as far as i am concerned. I was WAY less jittery on neb meds. I think the rescue inhalers have a propellant that can be bothersome

Ready to settle in for bed. Thanks for the good sleep wishes!

[annekat]

Thanks for the info! I'll keep DuoNeb in mind as something to mention if my docs and I ever get to the stage of talking about nebulizers. Nighty night!

[Alysia]

I did the research to find my new nebulizer mouthpiece set. Here is the info.


NebuTech Reusable High Density Nebulizer Set by Salter Labs (http://justnebulizers.com/nebutech-reusable-high-density-nebulizer-set.html)

Phil used 2 kinds of nebulizers, one with mouthpiece and the other with a mask. I will post picture on his thread of him with the mouthpiece nebulizer. the mask was easier when he was nebulizing and also chatting on the computer because the hands are free... I have a picture of him with the mask with me, so I will post it in my album at my profile...
how are you doing so far, Jacquie ?
praying for you and asking my sweet dr. Phil to take care of you from above....

[BookNut]

Feeling better, Alysia. I am hoping that the saline nebulizer might help avoid these flare ups. Had an exciting trip to the eye doctor today. Time for cataract surgery. WoHoo!! Retirement gets more thrilling every day! Thanks for the prayer request!

Jacquie

[Alysia]

Feeling better, Alysia. I am hoping that the saline nebulizer might help avoid these flare ups. Had an exciting trip to the eye doctor today. Time for cataract surgery. WoHoo!! Retirement gets more thrilling every day! Thanks for the prayer request!

Jacquie
sorry for the eye surgery but glad for the other improvement and that you are keeping your spirit high.
as for the improvement and the prayers, we can count on dr. Phil when he is in charge, and now he sure has more powers, being in the presence of God .....