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 Introducing myself as the new guy on the block

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blebs



Posts : 20
Join date : 2008-07-21
Age : 55
Location : North Canton, OH

PostSubject: Introducing myself as the new guy on the block   Mon Jul 21, 2008 11:19 am

Hello everyone.

I had my DVT as a result of a ruptured thoracic aortic aneurysm in 95, which caused me to be laid up in a bed for a couple of months with no activity. They removed the clot and implanted a Greenfield filter or IVC into me. I've since gone on to yet another open heart surgery to replace the aortic valve. I come to you from www.valvereplacement.com and I'm a friend of Al Lodwick from www.warfarinfo.com . I'm not a doctor, but I am a self doser and self tester of Coumadin and INR's. I'd be happy to work with some of you on INR issues. Far too many in the medical field haven't grasped how this drug works and I've seen some downright dangerous advice given from the Pro's that were supposed to rely on.

If this isn't something Dero welcomes, just let me know and I'll turn my mouth off. Just thought you might be able to use some help here and there.
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Introducing myself as the new guy on the block   Tue Jul 22, 2008 2:34 am

Hi Blebs,

Welcome to Life After DVT, contrary to some belief, we are wide open to other ways of thinking, we have been saying this from the very beginning, (December 2007) everything we talk about on this site, comes from OUR PERSONAL EXPERIENCES as DVT out-patients.
Like it says on the header, by and for DVT out-patient.
We do not push our beliefs onto people, we welcome other ways as long as they are of safe medical background.
As we keep on saying, anything that is suggested on the forum, be it by the "Life After DVT "crew or ANY REGISTERED MEMBER should verified by a qualified medical personal ( a doctor).
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blebs



Posts : 20
Join date : 2008-07-21
Age : 55
Location : North Canton, OH

PostSubject: Re: Introducing myself as the new guy on the block   Tue Jul 22, 2008 4:31 am

Thank you. Do you people have any self testing members that you know of? Probably not unless they bought their own machines. I get so fed up with those that manage Coumadin patients and do so wrong. It's not rocket science, but for some reason, the medical field has failed to educate themselves on how to properly manage patients. Case in point is one person here being told to hold 2 doses for an INR of 3.5. That is outrageous and it's no wonder the persons INR dropped out. The larger the dose they take to maintain the prescribed range, the faster they metabolize the drug.
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brendablackburn

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Posts : 150
Join date : 2008-06-24
Age : 50
Location : Vancouver, BC, Canada

PostSubject: Re: Introducing myself as the new guy on the block   Wed Jul 23, 2008 6:32 pm

Hi New Kid on the Block, but Warfarin veteran! Wink

Sorry to hear about your aneurysm and the valve work... wow... a lot happening there. (My Dad also had much heart surgery in years past and valve work.)

Look forward to reading posts on INR. (Thanks for the warfarinfo site... I will check it out next.) I am new to it all... only been diagnosed June 21st (2 wks. post symptom), but can't get my INR to stabilize yet. (Not self-administering.) Was at 3.6, then 8 days later, 1.7. Now 1.9... so at least it's close. Adjusting as per the Doc by 1/2mg. tonight, so hope that does the trick. It's a a pain in the butt, that's for sure. Especially since it takes 2-3 days for the results to reach the Dr.'s office from the lab.

So you have been on Warfarin since '95 then? Any words of advice? Any side effects for you?

Did you have any complications with your DVT or any recurrent since?

Hope you and your ticker are doing a-okay!
Welcome aboard and have a super day!
Brenda
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PostSubject: Re: Introducing myself as the new guy on the block   Thu Jul 24, 2008 3:07 am

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blebs



Posts : 20
Join date : 2008-07-21
Age : 55
Location : North Canton, OH

PostSubject: Re: Introducing myself as the new guy on the block   Thu Jul 24, 2008 8:05 am

brendablackburn wrote:
Hi New Kid on the Block, but Warfarin veteran! Wink

Sorry to hear about your aneurysm and the valve work... wow... a lot happening there. (My Dad also had much heart surgery in years past and valve work.)

Look forward to reading posts on INR. (Thanks for the warfarinfo site... I will check it out next.) I am new to it all... only been diagnosed June 21st (2 wks. post symptom), but can't get my INR to stabilize yet. (Not self-administering.) Was at 3.6, then 8 days later, 1.7. Now 1.9... so at least it's close. Adjusting as per the Doc by 1/2mg. tonight, so hope that does the trick. It's a a pain in the butt, that's for sure. Especially since it takes 2-3 days for the results to reach the Dr.'s office from the lab.

So you have been on Warfarin since '95 then? Any words of advice? Any side effects for you?

Did you have any complications with your DVT or any recurrent since?

Hope you and your ticker are doing a-okay!
Welcome aboard and have a super day!
Brenda

Hi Brenda

Actually I started Coumadin in 2001. I've never had another incident since the aneurysm rupture, but in 2001, they thought I had a clot in the apex or bottom of my heart, so they started me on it then. It turned out to be a cyst, but since having a mechanical valve implanted, it's required for life now.

No side effects to speak of. I have two friends that have been on Coumadin for over 30 years and same story for them also.

I'd be happy to make some suggestions to help you stabilize your INR but I'd need to know all the meds your on, your exact dosing schedule and how often your being tested and adjusted. 3 day waits on results are unacceptable. You need the number the same day otherwise how are they to know what to adjust to? I know I became very frustrated with the clinic I went to. I was getting needle sticks every 3 days, dose adjusted just as much and basically all that was happening was they had me chasing my tail. I started paying attention to Al Lodowick's philosophy and learned from him about Coumadin. It's not rocket science and in fact, is very easy to manage for most people. The biggest single problem is lack of understanding of the drug by the very people who manage us.

Mr. Lodwick has been traveling the country giving educational seminars to our professionals in the field. He was recently in my home town and I had the opportunity to have dinner with him one evening while he was here. Fascinating man to say the least.
Here is a pic of him and I at the restaurant:



That would be me with the hose in my nose and the Coumadin Yoda behind me. Smile


Last edited by blebs on Thu Jul 24, 2008 2:00 pm; edited 1 time in total
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RetiredNavy02

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Posts : 45
Join date : 2008-03-03
Age : 53
Location : Connecticut

PostSubject: Re: Introducing myself as the new guy on the block   Thu Jul 24, 2008 8:54 am

Blebs,

Welcome to the site!

By chance, did you attend the patient blood clot seminar in Columbus, OH in May 2006? The seminar was hosted by the National Alliance for Thrombosis and Thrombophilia (NATT).
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blebs



Posts : 20
Join date : 2008-07-21
Age : 55
Location : North Canton, OH

PostSubject: Re: Introducing myself as the new guy on the block   Thu Jul 24, 2008 1:59 pm

Hello RetiredNavy02, sorry no I didn't. I can't venture very far from my home oxygen unit. I stay pretty much within 10 miles of home.
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RetiredNavy02

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Posts : 45
Join date : 2008-03-03
Age : 53
Location : Connecticut

PostSubject: Re: Introducing myself as the new guy on the block   Fri Jul 25, 2008 8:58 am

Next time a seminar in held in Ohio, I'll keep you posted. NATT is working producing an on-line version of their seminar in an effort to reach more people. Once more information about this comes to light, I'll pass it on to you.
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brendablackburn

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Posts : 150
Join date : 2008-06-24
Age : 50
Location : Vancouver, BC, Canada

PostSubject: Re: Introducing myself as the new guy on the block   Fri Jul 25, 2008 6:45 pm

Hi Blebs Smile

I've been watching the posts... interesting information, thanks for sharing. Esp. the info you put on Gismo's page re: bleeding & INR under 5. Makes sense and matches what my Dr. says pretty much, and matches my Dad's thoughts right on. Basically I think the docs put a lot on emphasis on watching bleeding in the beginning, to see how our body responds, but sometimes that scare stays with us awhile. What a Face

As for me, I think I'm getting a handle on it. I'm starting to know now kind of what's happening with my doses. So on my last Dr. visit I suggested we only go up 1/2mg. so it doesn't go crazy again. I know what going up a full mg. did last time. Plus I know I have to keep my diet (ie. vegies) and exercise (i.e. walking) fairly consistent every day. Plus, having a couple glasses of wine may affect too hey?

Have a great weekend, I'm off for a 2 day getaway... first mini roadtrip, since this all happened. YAY!
Take care,
B

P.S. Still going to go through that warfarinfo site completely. Been taking a peek.
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