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Report post · February 18, 2004

Heck, I had mine in the garden. Took three tries to walk back to the

house (about 300 yards). I had to drop the weed whacker at one of

my 'rest' stops. I sat down in a recliner and tried to take my BP.

It was realllyyyy low, then unreadable. My heart rate was in the

200's but who can count that fast? Took my kids an hour to convince

me to go to the hospital. Of course, by the time I got there I was

recovering. My heart rate was in the 150's.

Bridget

> Daveed to you I feel like a faker. Ihad my V tach in a shopoping

mall

> not too far from the hospital, and after a few minutes Iknew I had

> problems, so I told my wife to get to the ER asap. She got lost

> trying to find a short cut. I had the tachycardia for only about 30

> minutes at a much lower rate, before they got it stopped. I never

> passed out, but I was really disoriented.

> Ralph

Report post · February 19, 2004

Welcome Dave, I am one of the older members here. I had my first icd when they were still in the experimental stage. I think I have been through some very difficult experience including my first icd shocking me 54 times in 4 hours as it was defective. At the time no one knew what to do so I had to be life flighted to Cleveland Clinic. If it weren't for this group I am not sure where I would be today. I was more than terrified and wanted to do with a icd but to get it out before it hurt me again.

I am now on my fourth unit and of course with my luck which is always bad each unit has misfired and I have had problems with the lead wires. I have had many necessary shocks and let me tell you they are quite different that those you receive when the unit is defective. I got a new unit this Sept after returning from a wonderful beach trip to S. Carolina. Where for the first time I just simple enjoyed the heck out of life and swam and played like a kid. On the way home I started having problems and by Monday unit started misfiring. They decided to give me new unit rather than repair the old.

Now I will have surgery again on the 25th to fix this unit. I had a Medtronic and now a Guidant which is much smaller then the other for some reason it will not stay in place. They thought that the pocket would shrink but of course it is not. When I saw the heart doctor he said oh no we can't have that those wires will get all twisted. So off I go, but this should be a piece of cake from all the others.

I suffer from V-Tach and have frequent episodes. Ask me now how I feel about having a icd, and I will tell you I am thankful. It has extended my life, which has allowed me the j oy of becoming a grandmother. I just found out there will be a new baby the last of September. Little Jessie will have a rival and Zack and Maya will have a new cousin. This is when life is at its best. Jessie is 27 months old and the apple of my eye. I have a little technique I use now When I get so down I made my self a scrap book of my grandchildren and my garden and I set down and take a good long look at the memories I have and then nothing seems that bad.

I will not tell you there are not bad days weeks or even months but I will tell you no matter what they are worth it. This group has given me love, support, comfort, humor, prayers and hugs and anything else I have ever needed.

S welcome to the best place you could ever hope to be and to the greatest group of people in the world.

Sharon in Ohio

Report post · February 20, 2004

Hello Dave,

Thank you for your replies and stories. Yes, at some point perhaps, I would

like to contact you off line and talk in more detail. I appreciate the

length and depth of your reply to me on the zap-list. I think the others

will indulge us.

Your account of first identifying your problem was indeed harrowing. Thank

God you are still among us. I do appreciate hearing your story of exercise

and how you have learned to be moderate. Strange how aerobic exercise is

recommended with most heart disease except ours. It sounds like you're

enjoying life even after lots of shocks -- very comforting for me to hear.

I know that this condition takes a different pace with everyone, so I (like

others) feel a bit like a phony being in this group really only having an

ICD on the authority of a doctor -- even a doctor who is ‘an authority’.

I was going along happily and needed an EKG a few years ago for some minor

day-surgery. It came back with a recommendation that I be screened for ARVD

or Brugada’s syndrome. That began the whole process that led to me first

seeing one EP Dr. Kirchoffer at Baystate in Springfield, a really great guy,

who diagnosed ARVD but couldn’t get me to convert in the EP study. He sent

me on my way, but when I began to have non-sustained runs of PVC’s he

referred me to Dr. Estes who, after an angiogram and a biopsy, said I should

have the ICD.

The worst part for me has been trying to get to know what this is all about.

It appears that with ARVD the heart doesn’t get better, you just hope for

better medicines and not to lose too much ground. Nevertheless I am grateful

for the good doctors I’ve had and have. The unhappy stories about some doc’s

are reminders of how good I have it. I am truly grateful.

Like most people I would love to find a supplement or regimen that would

enhance my health or arrest the disease. I spend time reading and

researching, but nothing has come along with a stamp of credibility. I do

take more vitamins, minerals, and fish oil now than before, switched to

decaf (boo-hoo), drink a small glass of wine or a beer only occasionally.

Maybe all of those things will help some. Things are very quiet right now,

although I notice that stress surely induces PVC’s. I’m a high-school

teacher and vacations are golden, quiet times for my heart. Too bad I’m not

near retirement.

I have a wonderful wife and 9-year-old daughter who keep me on the run.

Walks, easy paddling of our canoe (we live on a river), and light bike rides

…nothing strenuous… is my regimen for exercise, when I get it. I guess to be

48 and only now diagnosed with ARVD I’m doing ok. Since it’s familial, my

siblings are being checked… so far so good, although my brother has been

referred to Dr. Estes for a closer look. We’ll keep an eye on my daughter.

The responsible gene may be pinpointed before we ever see symptoms if she

has it.

Dr. Estes says that the gene is more likely to be a risk factor than the

actual cause. Kind of like being genetically predisposed to cancer. Some

folks get it some don’t. So knowledge is our friend.

Thank you Dave for joining up and being so communicative. God bless you and

all here as we muddle through. Take good care and stay in touch.

Ken

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Report post · February 20, 2004

Taniel!

Hiya! I'm just down the road a piece from you in Macedon Center (on 31F).

:-) We moved here about a 16 months ago from Seattle. I'm brand new to the

soaping thing and just got started this last year. :-)

Not much locally here, just found out about the olive house (olive tree?) in

Naples... want to go shopping!!!!!!!!

Welcome,

Kirstin

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I

live in Fairport, NY (outside of Rochester). We moved here 3 years ago from

Texas. About two years ago I severely fractured my left wrist, which left

me unable to do my soapmaking. For over a year I wasn't able to make

anything - it was horrible! But now I'm back in full swing making soaps and

lotions (I never used lotions much until I moved here and experienced what 6

months of having the heater on does to the skin!) I've been making soap and

cosmetics now for five years. I don't wholesale or do craft shows - just

for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some

information about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

Report post · February 20, 2004

Welcome, Taniel! I'm in Naples but come to Fairport occasionally as my husband's

Aunt lives there and I also sell my soaps from a local gift shop, Village Gifts.

As far as supplies go, Kirstin's right, Olive Tree is here in Naples

www.olivetreesoaps.com . I usually buy in bulk (pails) so get most of my oils

from Columbus Foods on the internet but check Olive Tree out. She's got a great

variety! As far as bulk lye goes, I was buying the cans (very frequently) until

another list member, , brought bags of it to our last gathering. I stocked

up then! Lizz referred me once to a chemical supply place in Caledonia called

Chemical. I haven't contacted them yet because I had bought the bags from

but I think they were very reasonable. Nice " meeting " you!

Katy

New Member

Hi all! I just wanted to introduce myself, my name is Taniel Leppla. I live

in Fairport, NY (outside of Rochester). We moved here 3 years ago from Texas.

About two years ago I severely fractured my left wrist, which left me unable to

do my soapmaking. For over a year I wasn't able to make anything - it was

horrible! But now I'm back in full swing making soaps and lotions (I never used

lotions much until I moved here and experienced what 6 months of having the

heater on does to the skin!) I've been making soap and cosmetics now for five

years. I don't wholesale or do craft shows - just for friends and family.

I'm desperately low on a lot of supplies, so I hope to glean some information

about suppliers and I also help others here, too!

Here's my first question: Where do you buy your bulk lye from in the

Rochester area?

Anyway, I look forward to chatting with everyone.

Taniel

Report post · February 20, 2004

Hi Taniel, I'm Shaye and I live little bit north of you in Ontario. I've

been Soaping for 6 years and have yet to find bulk lye in Rochester. I have

been getting it bulk from one of our members (H1 - Hey !) at our

annual gathering.

Other places for soap supplies, like said... Kae at

www.olivetreesoaps.com supplies some fantastic supplies, Other suppliers

in NY state are in the notes at the bottome of the posts. Bill at Saratoga

Scents has some great supplies and molds and of Creekside Soaps sells

some great molds. Also many times people are interested in going in

together for supplies from places further away.

Taniel, welcome to our group!

Shaye

The Soap Shack