Sandy

[Guest guest]

Sandrs couldnt agree with you more, I have had the "dreaded" for over forty years now, and have only taken what I have been told. Ventolin and Atrovent, last time I went to the doctor he said dont worry about the Atrovent, whether this was from knowledge, or couldnt have cared less, or didnt know what to advise. I only asked what I could take to loosen things up a little.

But then again he also wanted to send me for a bone marrow test when my blood tests came back high, when I dehydrated..

RE: Sandy

Hi Sandy,

Atrovent is a bronchodilator, not a preventor, just so you are aware. It is longer acting than ventolin.

I loved your family pics, thanks for sharing..

Take care, Sandy, and keep well.

Love Bunny

-----Original Message-----From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sandy taylorSent: Saturday, 16 July 2005 11:26 PMTo: bronchiectasis Subject: Re: Sandy do you use atrovent, ventolin , saline etc?Atrovent is a preventor.As I say its the only one we can use, except when in hospital, they use those with IV drip with amminophilin( still spelt wrong) age , memory, eyes, BRAIN somethings just are slipping. LOLSandy( silly)

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[Guest guest]

Sandy, your grandaughters are darling.. Emailing: Picture 088

This is a pic of 2 of my grandaughters who now have a baby brother, this was

taken at Xmas time, Shantelle and Jacinta, 8 yrs and 6yrs

My youngest daughters children.

Hope you don,t mind sharing some pics of those I adore.

Sandy

Picture 088

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[Guest guest]

Sandy,

The weight right now is not the priority, though I wish I could loose weight. My asthma is out of control again, the throat is really sore, and I am so swollen I can't wear anthing but flip flops on my feet. I saw my asthma doctor yesterday and he says "you're a really sick puppy". I don't think he knows what to give me to help. He did put me back on AB's "Ceftin".

What you said about my asthma taking a different type is really what I think is happening. There are times when all of sudden I can't breathe. I do carry a rescue inhaler and have them all over the house, but even those only give some relief. I was in the ER for 4 hours a couple days ago and they got me breathing again, but I am so full of steriods I am miserable. What inhalers do you use? All I use is the albuterol. What's different for me too is a real tightness in the chest in addition to the constant wheeze. It's just like you said Sandy, just all of sudden. I wonder why this is? I keep trying to think of what I've done different?

I go to Denver to the National Jewish Research Center here in US on Sept 6th. We're leaving the end of the month cause we're driving from California. I hope they can put me on some kind of maintenance plan.

Better go for now, I've already had my yogurt and I think I'll make me some tea to try and ease the sore throat. Thanks so much again for all you share.. RE:

, you won,t have much hope of losing weight while on pred.

Keep up with the yoghurt, but do get the one with the acidophillis won,t you.

Peppermint and cammomile tea blended together are very helpful for the tummy as are gingerand chammomile.

Lavender tea is another good one to help tummy with meds etc.

Take good care,

Sandy

Are you sure its not that your asthma is taking on a different type, different triggers, or same triggers but a completely different asthma.

My asthma has totally changed over the last 4 years.

Before I coughed etc sometimes temps , always wheeze etc.

Now I get no warning sometimes, just air cut off, and all I can do not to panic.

happens anywhere any time, no need for triggers either.

Just on odd occassions, I suddenly get wheeze, really bad , really quickly then so breathless cannot breathe at all.

I could be driving the car, reading a book, watching birds in the garden, then bang- it hits me.

I carry puffers in bag, in my pockets , in the car and one in every room.

I always have a spare in the car, and now buy clothes with pockets so I have one with me all the time.

Could be what is happening.

Sandy

[Guest guest]

Hi Sandy, I'm going to see my new pulmonologist tomorrow and I hope he gives me something to help with all the fluid retention. Are you ever perscribed water pills? I'm going to ask Dr. tomorrow because it has gotten way out of hand. I do try the breathing excercises, but it's like you said, all of sudden I'm am wheezing and extremely tight and sometimes the nebulizer treatment is just not enough. I too am sometimes afraid to go to sleep because of the asthma.

Thank you for all the suggestions and sharing what works for you. I appreciate it.. Re:

Hello , sorry about youre not being so good.

I was mentioning the weight , only because as you know too many steroids can cause you more problems, especially with weight, fluid retension etc which really makes you wheezy and breathless.

I only use salbutamol puffer, and ventolin, atrovent and saline in nebs.

However I do do plenty of breathing excersises, as they really do help me with asthma, with the anxiety it brings and also with the evey day breathlessness that comes with any kind of physical activity no matter how small.

Just bed making, steps, walking etc.

I also use a hot pack on my back when really wheezy, it helps break up the tiniest bit of muccous( as thats all I get) unless have a big attack that causes a coughing fit, then I cough up and bring up phlegm.

I do breathing anywhere and everywhere, as I sometimes feel that real tight band around my chest, get hot etc, then I know I have time to knock it out quick, with a few puffs of ventolin and my breathing excersises, driving, walking even talking.

I sometimes wake and am desperate for breath, I break into sweat, and so tight I think I,m going to die.

I am too afraid to go back to sleep in case I cannot wake up.

This type of asthma is really dangerous.

As often you get no warning at all.

I have had a specialist listening to my chest, saying how lovely and clear it is, and before he sits back down, I am gasping for breath, hot etc, and he has come and listened to my lungs , and cannot believe how full of crackles and muccous there is, all in a matter of seconds.

Must go , will be posting again this week during the evenings ( OZ time)

Hugs to you. and just remember that its your life, your body, and its precious, so make sure you get it sorted out.

Even if there isn,t much more you can do , learn techniques that work and work quick.

The breathing works in 2 ways, it hepls relax you, your muscles etc especially try dropping the shoulders totally relax. and then concerntrate on in through the nose , deep diaphram out, then slowly like whistling or blowing out the candles, very slowly, letting air out till empty, keep holding the slow breath out as long as you can comfortably.

You will learn to do that without thinking and almost in your sleep as I have.

Must go,

Hang in there, thinking of you.

Sandy

[Guest guest]

Sandy,

I wonder why I seem to be more allergic to different things all the time. I used to be able to take anything and wasn't allergic to any meds. Now I'm so afraid to take anything new. While I was in ICU every time they came in with meds, I asked what is that and what is it for whether it was in the IV or pill form. I'm ordering the bracelet and that's a good idea about having them written down in your purse. I think I'll put the list with my insurance cards.

Thank you for your love and concern!

[Guest guest]

Sandy,

I feel so bad for you reading the weekend ordeal you've had. You give so much and keep on giving and it's not right for others to take advantage of you. You are a great example of forgiveness and love. You're an amazing person!!

I put the pictures in the photos link to share with all. That's a good idea making a bronch family folder. I really liked the profiles link and am so disappointed that someone deleted all that we took so much time inputting. It was great to refer to and update myself on where others were from and their diagnosis, meds, and be able to compare, ask questions, and just be more informed of the whole disease.

I've been on the pred. almost constantly for the past year. I usually start out on 60mg and tapper down. Everytime they've tried to take me totally off of it, I end up in the hospital unable to breathe, then they do the solumedral(iv steriods). I've had so many side effects, I just can't wait to somehow get off of it. Most recently, in addition to the vision problem, I've felt so bloaded. I think that's just another side effect. Have you ever experienced feeling your stomach bloaded from the pred? It's really uncomfortable.

It's great that you're able to get by with few asthma meds.

Take care..

Love,

[Guest guest]

Carl, breathing excercises, are by far the best choice, I will post later

today.

I really do deal with anxiety in many forma in many people, also my family

and myself, i have overcome that too, completely, yet I was almost a

vegetable myself for years and all kins of pills that became addictive.

You really don,t need them

Sandy

[Guest guest]

Thanks for the warm welcome. I am glad this group was formed where we

get together and share and help eachother out. My disability is not a

visual one (like a broken arm) and many people just dont understand. I

am glad to have found this group. Take caer.