new member

[Guest guest]

Welcome to the forum!!

I hate it when doctors say " dont abuse the ER " ; Its time the medical

community showed a little empathy for AF patients!!

You have my prayers; Hang in there; There is hope;

Re: New Member

> Hi all, I have been lurking for a few days and have learned more in a wk

> than I have from my family doc or cardiologist in the four years I have

been

> been afibbing. My episodes occur at night when I am almost asleep. I

have

> always converted spontaneously after 8-12 hours. The episodes are

> increasing in frequency, now occurring aprox. 1 a month. I can't imagine

> not knowing you're in a-fib -- to me it feels like a big ol walleye pike

> flopping around in my chest. The first time it happened I thought I was

> history. Went to the ER, was treated in the ambulence with adenosin (sp?)

> wow, talk about the surge of darkness. Once in the ER, I received IV

> diltiazem, and eventually converted after ten hours on the umteenth trip

to

> the bathroom. Subsequent ultrasound showed no heart abnormalities, except

> for mitral valve prolapse, which I've had for at least 15 years, not a big

> deal. Referral to a cardiologist resulted in rx Cardizem 240mg & advice

to

> " stop abusing the ER " but rather to stay at home and see it through,

taking

> propanolol 1 every 2 hours (max of 3) -- if not converted in 12 hours to

> call. So far so good. I am in great physical shape, active 53 yr old,

> business owner, travel often to Latin America but am afraid to be in some

> remote area, have an episode and not convert. Am trying to discover what

> triggers the afib, have quit drinking entirely (hard to give up that

evening

> glass of wine) and eat very light meals at night, as I have gone into afib

> after dining extravagantly. I feel the afib is related to digestion, but

> had never even heard of vagal afib until this list. Won't go on anymore,

> but thanks to you all for the information and comradeship. Sandy Raichel

>

>

>

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>

[Guest guest]

Hi Mariette. Welcome to the group. We're starting to have a pretty good

international community here. I don't know when your fiance will go on

dialysis. It could be never. It's very unpredictable. Perhaps if you could

provide a little more information about his case, we could make some

educated guesses, since there are some patterns in the disease that help to

predict how it will likely progress. But, before I do anything else, since

you say he is starting his own business -- please tell him to make sure he

buys some kind of good disability insurance as soon as possible, while he

can. It is well-worth the expense if he ever needs to use it. You just never

know, and it's probably the most important advice I can give.

Pierre

Canada

new member

> Hello everybody

> I just discovered your site this afternoon. I have tried to read as

> many entries as possible to get aquainted to this group. A little

> about my background: My fiance has been diagnosed with igan last

> oktober. He's not ready yet to get more information about the

> illness. But I do. It's comforting to know there are people who know

> what you mean, when you have questions. My fiance is just starting

> his own business, and it brings a lot of complications. Is he going

> to be able to do hard work, why is he always tired, how long does it

> take before he has to go on dialysis, (if ever)? I'm glad that I can

> talk to someone about these things, it's a great relieve.

> I hope to hear from all of you in the future.

> Greetings from Mariette, The Netherlands

>

>

> eGroups Sponsor

>

>

>

[Guest guest]

Dear Mariette

Welcome from the UK, and a very warm welcome to our group.

Best wishes

new member

Hello everybody

I just discovered your site this afternoon. I have tried to read as

many entries as possible to get aquainted to this group. A little

about my background: My fiance has been diagnosed with igan last

oktober. He's not ready yet to get more information about the

illness. But I do. It's comforting to know there are people who know

what you mean, when you have questions. My fiance is just starting

his own business, and it brings a lot of complications. Is he going

to be able to do hard work, why is he always tired, how long does it

take before he has to go on dialysis, (if ever)? I'm glad that I can

talk to someone about these things, it's a great relieve.

I hope to hear from all of you in the future.

Greetings from Mariette, The Netherlands

[Guest guest]

Hi there,

New to this group, but have heard of it from both www.kidneypatient.org.uk

and it was discussed on the igan foundation email list. I have stopped being

on that list as I just couldn't deal with getting so many emails, it gets really

draining. But I still appreciate getting information from these kinds of things

just prefer the website. Hello Pierre, we emailed on that list about 18months

ago. Since then my IgA has progressed and looks like it will go all the way.

My neph has said many things to me which I haven't heard anywhere else, so

I was interested to share them and see what other people thought.

As back story, I have had Iga for 4 years now (confirmed by biopsy when I

was 26), and have had nephrotic range proteinuria that whole time. It has

consistently been over 4g/24hr. Prob got from streph throat whilst

backpacking in Turkey, recurred in UK, but only confirmed by GP/biopsy back in

Australia. I have had 2 courses of steroids with no effect. I have

microscopic

hemetura. Recently my protein dropped from a high of over 5gram last year

to 3.8g, but the creatine went from 0.8 to 1.3. My GP said this seemed good,

my neph was very concerned and I had a kidney function test which

suggested I have 56% kidney function. She, my neph, now believes I will

have somewhere between 5 and 10 years before I reach ESRF. She doesn't

know but it's the trend she is looking at. I am on Avapro to lower blood

pressure (usually 120/70 on the drugs), Lipitor to lower cholesterol (went

from 5ish to 4ish in 2 months thanks to drug), and usually I take a diaretic as

well, get occasional back pain - all the usuals.

Of interest - my neph described that the relationship between creatine and

kidney function is such that eg. in my case although its hard to know the

increase from 0.8 to 1.3 may have indicated a change of 70% to 56% KF.

while a change from creatine of 4 to 6 may be the diff between 25% and

20%. This is an exageration, but is just to point out that small changes in

creatine at the low end, may mean very big changes in kidney function and be

particularly indicative of change in the disease. BUT it is very difficult to

measure at that stage. By the time it gets to 4 or 5 it is easier to measure

but by then the trend is pretty clear.

I had hoped to be one of the IgA people for whom it didn't progress but she

now tells me that proteinuria consistently as high as I have had it is the most

likely symptom to suggest that ESKF will be the result, eg. more likely than

gross hemeaturia (mine has always been mirco).

The drop in my proteinuria and resulting increase in blood protein probably

suggested to my neph that more of my kidney has actually died/stopped and

hence isn't leaking anymore because it isn't doing anything.

I am seeing a hospital dietian next week to get advise on a moderately low

protein diet. My neph has suggested its worth a go, (push towards 10 rather

than 5 years), with a goal of 60g protein per day.

Finally, she isn't ruling out pregnancy although warning that there are lots of

risks and will probably result in bring my kidney failure on earlier but hey,

it's

going to happen anyway.

Anyway that's my world at the moment. I'd be interested to hear if anyone

else has been told similar things. I do trust my neph greatly and I believe

she is considered to be one of the main experts particular on renal problems

and pregnancy in Australia, but this sort of stuff is rarely mentioned in any

web info I've read.

[Guest guest]

Thanks for the response.

I've been some form of blood pressure tablet for about 3 years and the

Avapro for around a year so it hasn't changed in response to that.

I don't know what it would be without the medication anymore.

I'll let you know if there's anything interesting from the dietian

Thanks

Fiona

[Guest guest]

In a message dated 7/8/2001 11:16:36 AM Pacific Daylight Time,

redkat313@... writes:

<< 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.

My doctor never tells me anything about this-except that I will

probably have it forever.

I am on digoxin >>

Hi, Kathy,

As an afib sufferer for the past eighteen years, I have found plenty of do's

and don'ts for me, some of which are common to most afib sufferers and some

of which are individual to me. Afib can be very different for different

people. There are basically two kinds of afib, adrenergic and vagal; and

paying attention to what you were doing before an afib episode can tell you

what kind of afib you have and, more important, how to prevent afib episodes.

If your afib seems to be triggered by eating habits (certain foods, eating

too fast or too much, drinking cold liquids), if it happens in the early

morning while you are asleep, or if it happens when you are in certain

postures (slouching, bending over, lying down on a certain side, deep

breathing as for singing) you probably have predominantly vagal afib. If

your afib is triggered by exercise or stress, it probably tends to be

adrenergic. The important consideration, of course, is to avoid triggers

which you know to have caused afib for you.

Your doctor sounds like my former cardiologist who just retired. He did give

me much information about afib because I insisted on it, but his outlook

tended to be quite fatalistic: " No matter what we do, you will inevitably

wind up in permanent afib. "

My new, younger cardiologist is very optimistic, on the other hand, in

reasoning that I will not wind up in permanent afib, because after eighteen

years of afib it's likely that I would be in permanent afib by now if it were

destined to happen. (I am paroxysmal, as are you. That means I cardiovert

or switch back and forth between afib and sinus.) After experiencing the

uplifting effect of an optimistic doctor, I would suggest that you look for

one or at least get a second opinion on that digoxin. Digoxin is quite

controversial for a paroxysmal afib sufferer because it can actually

ENCOURAGE the development of permanent afib, according to most doctors with

whom I have spoken. That's not what you need as a beginning afibber. (My

older brother takes Digoxin, but he has been in permanent afib for at least

20-30 years. It's appropriate for him but not for me and you.)

The best medication for afib will prevent episodes and control the heart rate

along with symptoms while not encouraging permanent afib. That medication

seems to be different for different people. I have been doing very well for

the past ten years, for example, on Tenormin (a beta blocker like your

Toprol), but some people can't tolerate Tenormin at all because it makes them

lethargic and slows the heart rate too much when they exercise. I also take

Verapamil, a calcium channel blocker along with Coumadin. This combination

of meds would probably knock some people out, especially at the high dosages

that I take, but for me they control my symptoms so that I don't even know

that I'm in afib unless I take my pulse. I did not take Coumadin for the

first sixteen years of my afib and never had a stroke, the biggest possible

danger of afib which can cause blood clots due to inefficient blood pumping.

If you are young and otherwise have no stroke risk, as was my case, you may

get by with taking aspirin and no Coumadin, as I did, However, it sounds as

if you have high blood pressure, and that presents some stroke risk. You

might want to discuss the advisability of Coumadin with your doctor.

Regarding exercise, all the doctors with whom I have spoken say that exercise

is completely unlimited for me. Again this is an individual issue, depending

partially on whether other heart abnormalities are present. Afib in itself

does not necessarily mean one should not exercise, but I think each person

should get a doctor's advice on that. Some people are completely

incapacitated with shortness of breath, chest pain, and fatigue when they are

in afib, while others like my brother and me are very active and exercise

with no problem. (I did notice some shortness of breath during exercise when

I first started taking the higher doses of Tenormin and Verapamil, but that

has disappeared as I grew accustomed to the meds.) My brother and I believe

appropriate exercise is very important. (Yesterday, while I was in afib, I

went on a three hour bike ride in the morning and dug in my garden in the

afternoon. Today

I am happily back in sinus.) With exercise as all other lifestyle issues

relating to afib, I think it's important to check with your doctor AND to

LISTEN to your own body. Be aware of how activities affect you and don't

push beyond limits of endurance. I have to constantly remind myself of that

advice because I tend to get involved in an activity and just keep pushing

myself. The resulting over-tiredness has frequently triggered afib for me.

(My previous cardiologist told me that adequate sleep is very important in

preventing afib.)

Afib can be a very scary experience in the beginning. Because I remember

well how terrified I was for the first few years of my afib career, I like to

help other beginners to have an easier time than I did. After eighteen years

of paroxysmal afib, I now believe that afib, if it is correctly treated, is

not a killer. I figure my brother and I would be dead by now if afib were

fatal. I think it is important for you to remember that afib is not in

itself a life threatening disease and that it is possible to live an

absolutely normal and fulfilling life either in permanent or paroxysmal afib

as long as the attitude is positive and the afib is adequately controlled by

the right medication for you. Good luck and welcome to the afib club!

[Guest guest]

Hi, Kathy,

About the treadmill, I find that walking helps

me feel better (but not when I'm actually in afib),

but I haven't tried running yet, so I dunno

about that.

Can you post a bit more about your afib, like

is there anything that seems to precipitate

attacks, like stress or relaxation, do they

start during the day, at night? etc. Then folks

can post some suggestions.

Trudy

[Guest guest]

Hi Kathy! Welcome to AFIBsupport! I've had af since 1996. My dr. told me I

would always have it and that it would probably get worse. He was right about

one thing -- it did get worse, until I connected with this group and figured out

that my af is vagal. The dr. had me on beta blockers, which not only made my

vagal af worse but aggravated my asthma, too. Long story short, I found another

cardiologist, who took me off the beta blockers. Voila! The frequency of af is

now only a third of what it was, and the duration of each episode has been

reduced by 80%. I feel like that's a success story. It seems that everyone has

their own, unique " flavor " of af. I figured out mine was vagal af because it

always happened when I was resting or asleep, and seemed to be related to

digestive problems. Can you tell us a little more about your episodes? Do they

happen during exercise, or during periods of rest? Did you have high blood

pressure before the afib? I have found that exercise actually helps me, but of

course, it's not the same for everyone. Hope to hear from you again. Be well,

Sandy

New Member

Hi,

I am a new member of this group...My

question is -is there any dos or don'ts for this af?

[Guest guest]

Kathy - Welcome to the group. I wanted to tell you that I just went off Toprol

XL (under doctor's supervision and I did it slowly) and my AFib attacks are less

frequent and less severe. I also seem to be feeling stronger,especially in the

afternoon. It's been about a month and I'm looking forward to more improvement.

Sharon in El Paso

[Guest guest]

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

transplant 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]

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 > transplant 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!>