to

[Guest guest]

In a message dated 00-07-03 12:38:48 EDT, you write:

<<

Don't you find the effects of glucose tablets shortlived? I do use them -

but have to follow them up with a snack.

>>

Absolutely not. Once I get BG to around 100 and I don't eat anything else it

stays just about there, give or take ten points... (unless I'm exercising,

etc.). Try it for yourself. Test 35 minutes after taking tabs...then test

again in another hour. and two hours after if you're still concerned.

Of course, maybe your body works differently than mine. We're all different.

And this is a very individual disease. As we've all learned. Vicki

[Guest guest]

In a message dated 6/23/01 10:04:59 PM Pacific Daylight Time, trudyjh@...

writes:

<< Of course, when stuff starts

happening, I still freak. Maybe like I will someday get calmer.

>>

Hi, Trudy,

used to freak, too! was the champion of freakers, as my brother

will attest. For the first thirteen years of afib, would suspend her

life during an afib episode and spend most of the time on the ceiling or on

the phone with her long-suffering brother, seeking comfort. Fortunately, the

sessions only lasted 24 hours or less in those days. Sometimes the phone

sessions with my encouraging, supportive brother would last three to four

hours because I was afraid that when I hung up, I would die and no one would

know! :-) I was sure in those days that death was imminent and was literally

afraid to breathe. I think I dimly suspected at that time that the problem

was afib, but I guess I postponed having a test while in afib because I

didn't really want to know. It's called denial. Also, the sessions were so

short and infrequent, there was barely time to have it checked out. During

regular doctor visits, my heart would always chug along in beautiful sinus

rhythm, and I don't think my doctor would even believe that I had a problem

until I wore the Holter monitor. My doctor treated me for tachycardia with

Atenolol eventually and that helped the afib but didn't stop it..

It's only in the past five years that I've known my problem is afib and I've

come to understand it that I no longer " freak out " when afib strikes. That's

why I like to share my experience with others who are new to afib. I figure

perhaps I can help them as my brother helped me to go through the initial

stages of afib with less fear and trembling than was my experience as a

beginner. As one experiences afib over a time, one gradually begins to

realize that it will not kill, but the initial stage before that realization

can be terrifying as the " mammal " flops around in the chest.

Regarding the long quotations in posts, I would say that they are often

helpful to me because for some strange reason which has investigated,

many of the posts, especially my own, do not appear in my e-mail. Frequently

I will get a series of " Re's " with no original to which the " re's " are

responding. It's enlightening to be able to read the original as quoted text

in the response post. must have done something good, however, because

more of my posts are appearing in my e-mail now since I told him about the

problem. Since I never go to the Website to read because that takes more

time than scrolling through a long message, I don't know if my posts were

actually posted to the board unless someone responds. Perhaps I am the only

one with this problem, though, because I haven't read any other complaints.

I am now in my seventh day of afib, and if I stay past tomorrow, I will beat

my own record of eight days in afib. Regarding Trudy's concern about

tachycardia producing cardiomyapathy, I think that is only a concern if one

actually has tachycardia along with the afib, which I do not because the

Atenolol and Verapamil prevent tachycardia. It's ironic that when I am in

sinus that I experience tachycardia more frequently. In fact, virtually

every one of my afib episodes starts with tachycardia which is regular and

then subsides to a slower, irregular beat. If afib is not properly

controlled by medications, it and the accompanying tachycardia could

certainly be very dangerous. In fact, if my brother had gone on for a longer

time with his resting pulse of 170 in afib and not sought treatment, he might

be dead today. As it is, his echocardiograms all show his heart to be

extremely healthy after possibly thirty years in afib with twenty of those

years uncontrolled by medication. (However, other factors such as a healthy

lifestyle with lots of exercise and good eating habits undoubtedly play a

role for him.) His doctor said that people can live as long in afib as in

sinus if the heart rate is controlled by meds. My cardiologist made exactly

the same statement, and the AFFIRM study which he told me about is testing

that theory. Medication is the key. Of course, an ablation that works can

accomplish the same goal by reducing the symptoms of afib, but after ablation

one is committed to staying in afib controlled by a pacemaker for the rest of

one's life. If new, effective treatments or that " cure " we're all waiting

for comes along, one would not be able to take advantage of them. Ablation

and the pacemaker are an irreversible option and, therefore, not for me. I

want to keep my options open. I also believe that the stress and

after-effects of cardioversion probably do more harm than good, especially

since the sinus rhythm produced through cardioversion is almost never

long-lasting. For this reason, I will not try cardioversion.

I guess I am just thinking aloud here and summarizing my reasons for my

choice of going with permanent afib if it has now become my lot. Since I

have only been in afib this long once before, the prospect of permanent afib

seems quite imminent. This morning when I thought for a time that I had

converted to sinus, I was, for the first time, almost disappointed! Usually

in the past, I would rejoice upon returning to sinus, but now I know that I

will probably just bounce back into afib again within 14 days and thereby

possibly increase my risk of stroke. There's a certain freedom that comes

with being in afib that is controlled. One doesn't have to worry about going

into afib by inadvertently drinking cold water or bending over, at least. My

primary care doctor even suggested that I stop the Atenolol and Verapamil and

let myself go into permanent afib. When I pointed out that without the

Atenolol and Verapamil my life in afib is unlivable because of dizziness, she

quickly retracted that suggestion. My cardiologist also thought stopping the

medication would not be a viable option. He believes that I will eventually

wind up in permanent afib no matter what we do, but believes in postponing it

as long as possible because he is quite optimistic about breakthrough cures

from current research.

Well, Trudy, this is certainly a long post, and I apologize for any

inconvenience. I think I am thinking aloud here in an effort to reconcile

the two conflicting factions within me as I face the prospect of, for the

first time, not returning to sinus spontaneously. Part of me welcomes afib,

but the other part wants to return to sinus and stay there! Writing about it

is therapeutic, I think. Thanks for bearing with me. Now you know what my

poor brother went through back in the early days of my afib. As he says, I

certainly can talk! :-)

Best wishes,

P.S. I just took my pulse and discovered that I am definitely back in sinus

rhythm! (72 beats per minute after 6 days and 17 hours of afib) I think

writing these rambling thoughts to you was as therapeutic as talking to my

brother was in the early days. I would frequently convert to sinus while

talking to him, and now I've converted to sinus while writing to all of you

wonderful, supportive people. Thank you for listening, and maybe I've gotten

it all out of my system now so that in fourteen days when I again think I am

in permanent afib, I won't be quite so long-winded. :-)

[Guest guest]

I think he must have meant drug trial. He said they might help me or someone else. It sounds too experimental but I will look into it further.Leanne Storch wrote: Hi , Does he mean drug trials?? What kind of program does he want you to look into? I go to U of C, started out at Loyola, but I see the lung tx doctor. I know they are running some drug studies. Glad he recommend pul

rehab. I hope you get as much benefit out of it as I did. The program I did was 3 years ago and I know they've improved since then. Leanne IL ipf 1/03 <edwardsd77> wrote: I went to the doc yesterday. He said my recent PF test was down from the last one in Feb. He suggested Pul. rehab which I will start as soon as the papers are filled out. He also seems to want me to look into programs at Loyola, Mayo Clinic or U of Chicago. Loyola and U of C are in my area. I think these are experimental programs. He said to get another opinion if I think it would help. I like this doctor and want to stay with him. Whatever I decide, my children will help me in any way they can such as going with me for an evaluation.

I am 72 so my "children" are in their 40's. My husband cannot help since he is too sick with Parkinnson's, diabetes and several other problems. The doc said to continue with NAC and Mucinex and did not put me on anything else. Let me know what some of you think about going into one of those programs. E. P/F 12/05. Thanks for listening. Stay in the know. Pulse on the new Yahoo.com. Check it out. Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

,

My doctor sent me in December to another pulmonologist for a consult. He said that he just wanted to know that he was not missing anything and if another doc might be able to supply information. I don't think it is an insult to your doctor if you seek another opinion. It is a good thing. Think about it. Like you are, I was tired of doctors, but I went. I also just went through the evaluation. A great work up. They found a heart blockage and repaired it. I didn't make the transplant list but it saved my life.

I don't know much about drug trials, but there are others online here that are involved in experimental programs. Just do your homework.

Hugs and Prayers,

Joyce pf 1997> I went to the doc yesterday. He said my recent PF test was down from the last one in Feb. He suggested Pul. rehab which I will start as soon as the papers are filled out. He also seems to want me to look into programs at Loyola, Mayo Clinic or U of Chicago. Loyola and U of C are in my area. I think these are experimental programs. He said to get another opinion if I think it would help. I like this doctor and want to stay with him. Whatever I decide, my children will help me in any way they can such as going with me for an evaluation. I am 72 so my "children" are in their 40's. My husband cannot help since he is too sick with Parkinnson's, diabetes and several other problems. The doc said to continue with NAC and Mucinex and did not put me on anything else. Let me know what some of you think about going into one of those programs. E. P/F 12/05. Thanks for listening. > ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out. > > > > > > ---------------------------------> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. > > > > > ---------------------------------> How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates.>

[Guest guest]

, if you ever visit your girl in Salem, let me know, I'll come there and meet you! Sher ipf 5-06

Scared snotless

Good morning everyone,

I'm leaving shortly to go to church but I wanted to check in and tell you all I survived having a very very drunk 18 year old hoodlum break in to my house through my bedroom window on Friday night/early Saturday morning. All while I was sleeping in my bed 3 feet from the window.

Fortunately he was so drunk he wasn't capable of doing me any real harm and he had no weapon on him but I don't know if I'll ever sleep with my windows unlocked again.

All he did was yell at me to give him money. (As you all remember I'm not working and have no income so this dope really picked the wrong dame to rob.) When I picked up the phone to call 911, he knocked the phone out of my hand so I grabbed my pocketbook and locked myself in my bathroom,dug my cell phone out of my bag and called 911 from my shower. When the police arrived the genius had thrown up all over my bedroom carpet and was crying.

This was about the longest 20 minutes of my life as you can imagine. I haven't slept since except for cat naps on the couch but I'm hoping I'll settle down soon.

, I'm glad you're home and I'm glad you're making a plan to enlist help. I'm somewhat older than you but I understand how hard it is to ask for help. Especially when you're like most of us and are used to being the helper not the helpee. I want to stay around for awhile yet but we have to take care of ourselves so that we can be here to torture our loved ones for years and years to come.

I'm off to church and will be praying for each and every one of us!

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

__________________________________________________

[Guest guest]

, I did as you suggested and now I'm posting direct from the board

vs. my email for a trial. So far, the mail that comes in still has the

little boxes in it. Any other suggestions?

Thanks again. Sher ipf 5-06

[Guest guest]

I think we are stuck with the blue boxes, that's advertising's but your messages should not run into the boxes now "I HOPE" PSher wrote: , I did as you suggested and now I'm posting direct from the board vs. my email for a trial. So far, the mail that comes in still has the little boxes in it. Any other suggestions?Thanks again. Sher ipf 5-06

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Oh, well glad we cleared that up!

I'd be busier than a one armed paper hanger with the itch getting all those books out.

It will be a couple of days. I was too pooped to stop at busy PO for mailers today....tomorrow!

Sher ipf 5-06

Kenny update> > > Here we go. Kenny had three boils come up, one on his knee, thigh and> Bottom. So they have put in a pic ( ???) line and he will have the strongest> antibiotic they have in it everyday for 42 days.. has to learn to do> that job.. She has a thing about needles but I keep telling her she can do> it. > The hole looks great almost level with his skin. I don't yet know how they> will close i! t. I'm hoping they don't have to do a skin graft. He hates the> pain meds he's on. > Please keep him in your prayers.> Love and Prayers...Peggy 9/04 ipf>

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

Don't stress....do the books as you can....we can wait. Joy 3/6Sher K Bauman wrote: Oh, well glad we cleared that up! I'd be busier than a one armed paper hanger with the itch getting all those books out. It will be a couple of days. I was too pooped to stop at busy PO for mailers today....tomorrow! Sher ipf 5-06 Kenny update> > > Here we go. Kenny had three boils come up, one on his knee, thigh and> Bottom. So they have put in a pic ( ???) line and he will have the strongest> antibiotic they have in it everyday for 42 days.. has to learn to do>

that job.. She has a thing about needles but I keep telling her she can do> it. > The hole looks great almost level with his skin. I don't yet know how they> will close i! t. I'm hoping they don't have to do a skin graft. He hates the> pain meds he's on. > Please keep him in your prayers.> Love and Prayers...Peggy 9/04 ipf> Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

Well, my usual duh! I just discovered it today, before you posted. Thanks. LOL. Sher

Nac -To Leanne Storch, Beth and members> > > To Leanne Storch, Beth and members Re: NAC> > Hi, my name is Lillian and I am a fairly new member although > I apparently have had fibrosis for a number of years. Just recently > got worse and I lost a lot of weight-down to a size 4. Also I am a > senior.> My questions are about Nac. Was told by a former pulmonary > doctor and my present doctor to try Nac 600 mg 3 times a day. But > when I took it 3 times a day had a very strange reaction. I could > not sleep and was up all night for days and also became very > hyperactive. When I reduced dosage of the Vitamin to 2 times a day I > was still somewhat hyperactive and maybe got 3 hours of sleep a > night. Reduced capsule to one a day and slept much better at night > but was back to being tired and not as active during the day.> My questions: Do you know of any members who had the same > reaction to Nac? Are all brands of the Vitamin so bad smelling and > bad tasting? Most important a) Is there somewhere I can get this > vitamin in a pill form (so I can cut it in half and take 1 and ½ > pills a day) or somewhere I can get a capsule of 300 mg c) are > there any other vitamins or supplements which are helpful? What is > this prednisome ? - also there seems to be conflicting medical > studies and opinions on medications that help. Would also like to > know if any members are in clinical trials and how they are doing. I > would love to participate in a trial and will investigate that > later. Thank you for any help you can give me on this and thank you > for setting up this Support Web site>

[Guest guest]

awww shucks ma'am it was nothing! glad it was some old tunes and

not some new ones though. lol those sounds a lil sketchy sometimes.

hehe

>

> ,

>

> You sweet, sweet thang.

>

> What a great way to start the day...with your beautiful voice.

Thank you so much for adding sunshine to my day by singing to us.

It makes me smile each time I think of it! You are such a sweet

soul. Thank you for being You!!

>

> Love,

> Leanne

>

>

> ---------------------------------

> Sponsored Link

>

> $200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home

equity - Click now for info

>

[Guest guest]

oooops! glad you enjoyed it. i hadn't had my hot tea yet so the

voice was still a lil on the scratchy side but not tooooooo bad.

remind me thursday, might do something for everyone. hehe

EG

>

> ,

>

> You sweet, sweet thang.

>

> What a great way to start the day...with your beautiful voice.

Thank you so much for adding sunshine to my day by singing to us.

It makes me smile each time I think of it! You are such a sweet

soul. Thank you for being You!!

>

> Love,

> Leanne

>

>

> ---------------------------------

> Sponsored Link

>

> $200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home

equity - Click now for info

>