Boy have I had a week. CAUTION: Emotional Drainage is inside

[lilmissdisney216]

Hello my fellow DISer's:

Well I had a doctors appointment this past Thursday as a follow up for me having asthma and its a long story.

I was first DX'd when I was 10 or 12 years old and at the time my pediatrician determined that my asthma was exercise induced due me having some issues if you will, during exercise. I was put on an Albuterol inhaler for before any sort of exercise and all went well. About a year later my symptoms moved to being a little worse and at that point I was diagnosed with mild/moderate asthma. They put me on Advair 100/50 ( I believe) and still on the rescue inhaler. Still had some difficulties that the 100/50 wasn't fixing quite right so I was given the up dosage, still no good. Was put on the highest dosage that you can get for Advair and all it did was make me sick and feel icky and not help me much at all ( in fact, Advair in general made me ill). Right when things got worse, my pediatrician retired and I was left transferring to a newer doctor who was a referral through my original DR. Started seeing the new pediatrician but at that time my asthma went into a little remission and wasn't causing much of a problem so it was untreated for many years.


Fast forward to about 6 years later (that puts me at about 19) I start having some asthmatic issues again. These related to exercise. See my new doctor that I have that specializes in family medicine and obtain a rescue inhaler and Advair (mind you it didn't work the last time so it didn't work this time). Same reaction as before. Go back to the doctor and let them know that the Advair isn't working. Doctor says that they find it hard to believe and they tell me that Advair works for everyone. Baloney, I know what works for me and what doesn't. A couple months later I go to a concert in a bar with DBF and there are heavy amounts of cigarette smoke. Coming from a mom who used to smoke and being around others who smoke, it never seemed to bother me. However this time it was bad. My chest was extremely tight, I was coughing excessively, I couldn't breathe, and it felt as though I was going to pass out and die. On top of that, I had an immense difficulty breathing at night. My chest would get very tight and I would spend half of my night coughing and as a result lost much sleep.

So in summary, got a new doctor and I love her. She took a breathing test at my initial visit with her about a month ago and my readings weren't good at all. My smaller airways were extremely constricted. Got a breathing treatment at the office and after the treatment they had opened up about 20% more after the treatment and had shown much improvement. Put me on Symbicort, Singulair, and Albuterol for a rescue inhaler and a steroid pill for the asthma After the visit I had on Thursday, things weren't getting any better for me. The rescue inhaler wasn't helping me very much and the steroids were but they weren't doing enough. So now I'm on Symbicort (the highest dose you can get), Singulair (highest dosage), Ventolin HFA rescue inhaler, and I have a perscription for premixed albuterol solution. In addition to all that lovely medicine mentioned above, I now have to start doing breathing treatments as needed persay. I have little experience with this and I have only had one done at the office and have NO idea what to do. Any info you guys would have would be a big help.


Just thought I needed some emotional drainage if you will. I feel so overwhelmed with all of this coming at me at once it feels like so much. However I felt most comfortable talking on the disABILITIES board about it.

Hugs,

Meredith

 

[pudge the fish]

 

[lilmissdisney216]

*sniffle* that was *sniff* so sweet... thank you!

 

[bidnow5]

Sorry to see you are going through this. I have had asthma for 15 or 20 years and it isn't bad but I can't take any of the preventative meds. I tried Advair and had a real bad asthma attack.

My doctor retired and I got a new doctor that tried other preventative meds always the same response. I just got another new Dr and guess what she want to try all the meds that didn't work. I think it's just the way they do things.

As long as I avoid my triggers I do ok the only thing I have no control over is people that use way too much perfume, people that smoke near me and the toughest one big weather changes.

Have you tried to isolate what causes your asthma it took me years to figure it out. In my case some foods, dust, mold and lots of other things like anything that smells good give me problems. My wife and daughters hate me at times because they can't wear perfume or use bath oils or scented hand creams or burn scented candles. I hope it gets better for you

 

[mechurchlady]

Big hugs and let it all out. I have a couple punching bags that you can paste doctor pictures on. Finally I am getting help and it is like pulling teeth. Come here any time and we all can commiserate and talk things out.

Hugs and chocolates
Laurie

 

[BeckyScott]

My son's asthma is "exercise induced" but having lived with it for a while, it's actually induced by several things. As bidnow mentioned, you might want to do some more investigation into all the possible triggers. It sounds like you already figured out that smoke is a problem, too, so really you know you're looking at more than one trigger.

Around here it's not just exercise or smoke or mold or pollen, you kinda have to get two of 'em going at once. But the pollen is a real problem and that seems to be around six months of the year, so it doesn't take much else. Playing outside= pollen plus exercise. And one thing we've noticed with DS specifically is that his eczema flares first, then the asthma probs start up. I've figured that out now, so it's like a warning to me.

He's on Singulair, and has an albuterol inhaler but we also still use the nebulizer. Depends on whether he's at home or not. For him the nebulizer works better than the inhaler. And we've done many many rounds of short-term steroids over the years.

As far as the breathing treatments at home, we don't have a problem with them. DS uses a mask instead of that t-shaped thingy you put in your mouth. They do make adult-size masks and honestly are probably easier to use than the t-thing. The cord on the nebulizer is about 15 feet long. It is permanently plugged in in our living room, and we just let him play on the computer. Some people the albuterol will make a little hoo-hoo loopy afterwards. You wanna take it apart every now and then and wash it (the face-part and the medicine-part and the tube), at minimum just soak them in hot water, otherwise the leftover medicine will crust up around the screw-top. Our albuterol box has 25 vials- 5 foil packs with 5 vials each- and our house rule is that when you rip open the last foil pack, you call in the refill that day and go pick it up. Our other house rule is that we do the nebulizer, do one vial, and if his lungs don't clear, we just go ahead and haul up to the ER. Or if he needs more than one vial in a 4-hour span. But you'd want to check with your dr to see what they recommend for that situation.

They do sell nebulizers that are battery-powered, so you could take it with you, but we don't have one and I don't know much about them. We do the inhaler when we're not at home, and the nebulizer when we are at home.

 

[lilmissdisney216]

Thanks Laurie I really do appreciate the hug. It made me giggle a bit to read about the punching bag


I'm in my Algebra lecture at the moment and only had a moment to post. I will respond to everyone else's posts sometime after my next class during my break. Thanks you guys for all the support so far. Love you all!!

Meredith

 

[mechurchlady]

Big hugs and Becky is right about hidden triggers. You may not even realize that you have allergies. I get asthma and breathing type problems from allergies. I got into dairy and soy and eggs last week and had to push mom. I could feel what I call railing and it is the feel of mucus in my lungs. The exertion after the big meal and stressful nervousness was enough but the dairy causes mucus build up in me. I was in the ESPN Zone a sick puppy trying to settle down enough to get mom home.

You might have to go to 1000 doctors before finding the right one especially if you have something unique or not run of the mill like my celiac leads to stomach damage which leads to malabsorbtion which leads to thyroid deficiencies, bad teeth, pancreas goes haywire, and a lot of other things. They can give me a ton of thyroid medicine but until they treat the malabsorbsion and teach me how to avoid celiac related triggers such as wheat then it aint going to help me much.

When you get bored with the punching bags I got a dart board and a quiver of arrows to send flying at pictures of idiots who do not know what they are doing, doctors. Nurses are not idiots thakfully, lol.

 

[lilmissdisney216]

Thank you everyone for the wonderful support.

Laurie and Becky: I totally agree with you guys on the hidden triggers. My doctor is going to be checking for those hidden things that may be setting me off. I was reading online and I think that my nebulizer can have a battery that you can purchase for it. I'll have to look into that as I'm going camping in July and want to make sure I have what is necessary for the trip. I'm pretty happy with my new doctor and she's been doing awesome at helping to get my asthma under control and I do feel at least a little bit better and I have been improving on my readings when they do the testing each visit.

Bidnow5: My doctor was thinking that mold could be a trigger for me as our basement gets water in it when it rains cause our drain in the basement will flood occasionally and some water will pool in the basement as a result but we clean it up not too long after it happens. In any case, she believes it could possibly be some underlying mold in some way shape or form that's in our home someplace causing me to feel a bit yucky.

 

[mechurchlady]

People with food allergies use diaries and you need one. Take a few days off in a dry place away from the house. Do you feel better when you are on vacation? I remember someone who would be fine until they went into the living room that has the Christmas tree. A trip to grandmother may mean no cherries or no sulfides to trigger allergies. Think about your good and bad days like I know my allergies are in full swing by nose sores, poor healing, dry skin, belly aches, gas, and blinding headaches as well as racing pulse.

 

[zumbergc]

I have to agree you need to look and see if you have allergies in addition to the asthma. My husband would get into trouble when we would go to my parents house (more dusty), then come back home to the cats. The result -> several nights heading to the er. At that time he wouldn't take his asthma meds because he didn't have problems all the time.

From someone who has had severe allergies for 25+ years. Doctors never told me that milk products, dairy can cause a ton of mucus production for some people. Well, 10 years ago i had that sinus sergery to make things larger in the sinus cavities, so i could breath thru my nose. Well, i finally did a test dairy free, and i can breathe much better now, and have less severe reactions.

 

[lilmissdisney216]

I'm officially the happiest I've been in a few days.

So I mentioned that my doctor prescribed a nebulizer for me to use as needed at home and what not and I've found that by using the nebulizer before bedtime it has really relieved the tightness in my chest that I get at night before and during bedtime. I'm on nebulized albuterol sulfate and its been working well so far. So far so good. I try only to use it on those nights that I feel the most tight (which has been lately cause the weather has really been flip flopping with temperatures going up and down and what not) and it's harder for me to breathe. But other than that its been going pretty well. I don't feel too great after the treatment (in fact, I don't feel too great now. just had a treatment done not too long ago and I feel kinda jittery and a bit drowsy but that's probably from me being tired over the entire day I had). Just thought I would give everyone a general update on my progress.

Meredith

P.S. for those of you DISer's who use nebulizers, which do you prefer the mask or the t-shaped wand? I'm trying to debate on whether or not I want to try for the mask or stick with the wand. I can't really compare comfort as my machine only came supplied with the t-shaped wand. any opinions and what not?

 

[BeckyScott]

I mentioned before that DS uses the mask.

He's used the t-thing before though.

One thing I like about the mask is that he doesn't have to hold it. I guess if you're coordinated you wouldn't have to hold the t-thing either, but it's a little awkward. Anyway, that leaves it hands-free, so he can do other things while it's running. If you have a long tube and the mask, you can move around quite a bit during your treatment.

Sometimes he plays on the computer. Sometimes he reads.

Last night though, wanted to share, it was really funny. I hooked him up before bedtime, he was on the computer. He found a music video with SpongeBob on YouTube, turned the speakers on full blast, and he and oldest DS started dancing to it. Since the "tether" was about 10 feet long, he could move around quite a bit, dancing with his mask on. However a couple times he sort of forgot and ended up winding himself up. (sort of like when the dog forgets it's tied up and winds itself around the tree)

I'll tell you, honestly, how we got most of our masks. We had one that came with the neb. But whenever DS would go to the ER, when he was all done I'd ask them if I could keep the mask and tubing. They will let us keep them, because normally they throw them away. We had a half dozen masks and a couple of the t-things. So if you are in that situation (and not wishing that for you, just as a note) or even at the doctor if they do a treatment, ask them for the stuff afterwards. It's handy to have the extra parts.

 

[mechurchlady]

lilmissdisney216 you need big hugs, prayers and warm wishes. I hope you can feel better soon.

Hugs and dole whips
Laurie

 

[lilmissdisney216]

i can rightfully say I have never had a Dole Whip lol.

 

[LindaBabe]

The other thing that you might find helpful, if you're going to a GP now, is a referral to a pulmonologist - That's a lung doc.