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?

[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?

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!