New Member

[Guest guest]

Hi Mike -- it's hard to say whether taking magnesium has had a positive impact

since I've never had it measured, but I do take a Calcium 1000/Magnesium 400

supplement every day. I've been checked for potassium levels on several ER

visits with afib, and they were found to be quite low, so I eat a banana every

day. Otherwise, I have had good results with CoEnzyme Q-10, which I feel

reduces the skipped beats I've felt for years, even before the afib reared its

quirky head. There was some talk on the list a while back about the " L's " --

L-Caritine, for example, which I know nothing about but am very curious to look

into. I'd be interested to hear about anything you find helpful in the way of

natural supplements. Sandy P.S. I agree about the 2 lb. bass!

New member

Hello everyone. I am Mike Reid a new subscriber to the site. It has been

very comforting to find this site and listen to the candid inputs of other AF

folks. Mine is a long story that I won't bore you with, but suffice it to say I

have been through some interesting and difficult times. It especially pleases

me to hear some describe the " flopping " sensation I experience. I akin it to a

2 lb bass!!

I would appreciate knowing if anyone has had any positive impact from

magnesium and niacin specifically and also are there any other natural type

things I might look into.

Thanks!

Mike

[Guest guest]

Hi Kathy:

So nice to have you join us. Unfortunately, the *do's and don'ts* are just

that - *do's and don'ts*. We have approximately 225 members here in our

group and I would venture to say the only thing we have in common is the

diagnosis of AFib. We are all so different - different meds, different

symptoms, different procedures, different outlooks, yaddy yaddy yaddy! You

might want to check out ' database - and while you're there add your

own name to the list.

http://www.dialsolutions.com/af/

Speaking for myself, I have been on Dofetilide now for 9 months and I am

presently in NSR. If I do go into Afib, I have not been aware of it. I

joined a Gym a few months back and I work out about 2hrs - 3 sometimes 4

days a week. I originally bought a heart monitor wristwatch to wear, but

the darn thing made me nervous - I would rather not know (stupid, right?).

I do know that I have no problem exercising (I dance also) and I feel great

doing it and absolutely wonderful after it.

Of course, I do have my doctors blessing for all this stuff - and I

certainly would encourage you to do the same - insist upon an answer one way

or another. Some of our members are affected by exercising - but again - we

are all different!

It is a scary ailment - I know first hand! A really good doctor, proper

medication, attitude, time and prayer will ease your apprehensions. Hang in

there and visit us often!

Please be sure to take advantage of our Board's many great features. Check

out the topics lists in the left hand column of our Home Page and start

clicking away.........we need your input.

http://groups.yahoo.com/group/AFibsupport

Welcome - Welcome - Welcome

Ellen

*************************************

New Member

> I am a new member of this group (snip) My

> question is -is there any dos or don'ts for this af? I just started

> using a treadmill for about 15-20 mins a day (just starting) and I

> don't know if this is a good thing or a bad thing to be doing since

> it does raise your heart rate.(snip) Kathy

**************************************

[Guest guest]

- Welcome to our little group....we all wish we were welcoming

you to the " Millionaire's Club " or something...but unfortunately, it's

not. I'm happy to have another nurse here. I also am a critical care

nurse, but I am a pediatric nurse. This group is so supportive and I

try to pay that back by offering medical information when I can. It's

amazing to hear about how physicians have treated some of the people

here....although, I've experienced some of that myself. I have been

on disability for almost 2 years (August 12th) because I'm on 4-6

liters of oxygen. I'm a little different than most here because my

main problem is severe scoliosis....because of that, my breathing is

restricted to the point that I only have 38% of my lungs that

function. I also have pulmonary fibrosis, but the PF is caused by the

lung restriction.

I've been quieter lately because I've felt so down....I just started

seeing a psychologist and will see a psychiatrist to look at my

medication. I'm usually a very outgoing and energetic person, but

lately, I have no motivation. Feel free to ask any questions on this

list....we talk about everything...especially when Phred gets

started!!! (Sorry, honey!)

Diane Quinlan

dianequinlan@...

scoliosis/PF/8-04

>

> Hi folks,

>

> My name is and I was just diagnosed two weeks ago with IPF.

[Guest guest]

Hi , I'm Peggy Welcome to our group. this is the best place in the world to talk to about

this monster. I just had to tell you my smoke quitting success. I smoked for forty years. Tried to quit several times on my own. well I began to pray about it really fervently. I went to the Dr and after a lot of testing and all the stuff then THE DIAGNOSIS.. Well I knew it had to be. Prayed, so I bought boxes of the patches and gum.. I used two patches and chewed gum. for about a week or so. Prayed, I would light a cig. and one puff and put it out. More prayer, It took me about a month. but with God's help I did it.. You hang tough and " KNOW " within your " KNOWER " that you CAN do this.. I will be praying for you.. Take good care of you.

God Bless...Peggy 09/04 ipf

Hi folks,

My name is and I was just diagnosed two weeks ago with IPF. I

had been sick for about two weeks, really sick the second, and went to

the pulmonologist. (I'm an ICU RN, so I knew who I needed to see.)

By the time I went, I was getting better, so I expected him to let me

go to work. My sats on RA were 91% and he sent me straight to the

hospital.

I'm having a hard time accepting this diagnosis and quitting smoking.

Right now, I'm breathing well and back at work. I hate the combivent

inhaler because it gives me the tremors, but I can really tell a

difference when I do use it. I've only had a few cigarettes today,

big improvement, but I'm jonesing for one right now, LOL.

Anyway, thank you all for starting this group and giving me a chance

to join. It's good to know that there are others out there who've

been where I am and I hope I can help some of you as much as I'm sure

you'll be helping me.

, 7-06

[Guest guest]

Welcome newbie! Joyce said all I could say. Want to add my welcome as well.

I was diagnosed 5-06 and stunned to find online that ipf is a fatal disease! I have no idea how I got this. I had a suspicious chest x-ray and from there it went to Cscan to PFT and Pulmonologist and here I am too. Hugs to you. Sher

Re: new member

Janquart,

Welcome to our group. Tell us a little about you. We are here to help you and ready to accept help from you. We are all more or less in the same boat. Some of are us progressing faster than others in the journey through this disease. But we are all living with the terror and sadness. We are struggling to live good happy, productive lives. We are trying to make every day count. We are crying together, praying together and cheering each other up. We are silly, sad, upbeat, downcast, sick, not so sick, ........ just depends on the day. We are here...and we 'get it'. We will listen and try to help.

Come back often!

Joyce PF 1997

>> Hi,> I'm new to this group. A little nervous about it too. I was diagnosed > with UIP/IPF a few months ago. I've known for about 7 years that I've > had fibrosis in my lungs. But it wasn't until I had a SECOND biopsy > that I found out that I had IPF. It kind of blew me away when I was > told that I'd eventually require a lung transplant. I just turned 50 > so that was pretty scary. I've been through the evaluation process, > but am currently too healthy to list for transplant. I was VERY happy > when they told me that! I currently take Advair and recently started > taking NAC. I'm not on any steroids and don't want to be. I'm keeping > a positive attitude and moving on with my life. But, I'm also trying > to learn as much as I can so I know what to expect. I know that a > tr! ansplant is a big IF not WHEN. So, I want to prepare myself for the > loss of lung function that I know will happen. I'd really like to be a > part of this group because I think we can all help each other cope. > Thanks for listening!>

[Guest guest]

I guess its like chemo-for some people it kills ths cancer and for others it just kills them quicker. YIKES!!! LOL

kiss kiss,

~Ginger~

9/04 ipf

[Guest guest]

Hi everyone,

I've been lurking for the last few weeks reading all of your emails.

They have helped so much!

My Dad was diagnosed with Pulmonary Fibrosis in both lungs (24%

capacity left) and emphysema (COPD). He is 68 and is on o2 24/7.

When he is sitting he is at 4-5LPM without his mask, 9LPM with his

mask. If he does any movement, like walking outside, we put him at

7LPM.

I took a leave of absense from work to see what we can do. I live in

San Francisco and he lives in Florida. My Mom just passed as well so

he does have a lot of stress.

I have a few questions that I was wondering anyone can help us out on:

1. My Dad has had a few coughing fits that have caused him to pass

out and have what looked like seizures. His IPF doctor told us to

expect this.

2. I don't think my Dad should live alone at this time because he

has a hard time even taking a shower. If he gets up to even get a

snack he gets so out of breath. I have offered him my extra room but

several family members are pushing assisted living. He does not seem

to want assisted living because he is afraid of going into a nursing

home. If he comes and lives with me in San Francisco, what are any

suggestions anyone has to help both him and myself?

I am not married and I don't have kids, so on that side it's

realitively easy. My cat might have some issues with my Dad's dog,

but I'm assuming we can deal with that.

3. I still need to work, but he needs to have someone with him

during the day. I was looking at home nursing care and home rehab.

Any recommendations? And does Medicare pay for this?

4. At what point should he not be able to drive?

5. Are their airlines that are sympathetic towards IPF and high

oxygen needs?

6. Has anyone gone on a seapuffer cruise?

Geeze! A lot of questions. Any thoughts or help would be greatly

appreciated to both my Dad and my myself.

Prayers and good thoughts for you all,

Dawn

[Guest guest]

Dawn, Wish I could help you make a decision. Sounds like your Dad is mighty sick. Lost my mother 2 yrs ago. She spent 4 yrs in what they called assisted living. Not a good thing for me to see her there. She hated it and I think it hastened her death. Your decision depends on how much you love your father. His last days are going to be mighty rough. I am old and it would please me much if I had a daughter that would take me in and keep me out of a nursing home. You asked and I told you. It is a big burdon. My wife's mother lived with us for 30 yrs give or take a few months. The most gentle woman I have ever known. I loved her so much. She died in this room where my computer is now. You asked, Grey 10/05 IPF

New Member

Hi everyone,I've been lurking for the last few weeks reading all of your emails. They have helped so much!My Dad was diagnosed with Pulmonary Fibrosis in both lungs (24% capacity left) and emphysema (COPD). He is 68 and is on o2 24/7. When he is sitting he is at 4-5LPM without his mask, 9LPM with his mask. If he does any movement, like walking outside, we put him at 7LPM.I took a leave of absense from work to see what we can do. I live in San Francisco and he lives in Florida. My Mom just passed as well so he does have a lot of stress. I have a few questions that I was wondering anyone can help us out on:1. My Dad has had a few coughing fits that have caused him to pass out and have what looked like seizures. His IPF doctor told us to expect this.2. I don't think my Dad should live alone at this time because he has a hard time even taking a shower. If he gets up to even get a snack he gets so out of breath. I have offered him my extra room but several family members are pushing assisted living. He does not seem to want assisted living because he is afraid of going into a nursing home. If he comes and lives with me in San Francisco, what are any suggestions anyone has to help both him and myself?I am not married and I don't have kids, so on that side it's realitively easy. My cat might have some issues with my Dad's dog, but I'm assuming we can deal with that.3. I still need to work, but he needs to have someone with him during the day. I was looking at home nursing care and home rehab. Any recommendations? And does Medicare pay for this? 4. At what point should he not be able to drive?5. Are their airlines that are sympathetic towards IPF and high oxygen needs?6. Has anyone gone on a seapuffer cruise?Geeze! A lot of questions. Any thoughts or help would be greatly appreciated to both my Dad and my myself. Prayers and good thoughts for you all,Dawn