INR changes with the wind

[Ross]

Has anybody heard of Factor V Lieden? My sister just reminded me that she was diiagnosed with it a while back. If I also have it would it cause the yo-yo affect in the INR results? I am going to ask to be tested, Who knows if Kaiser will respond to this request.

Jackie

It is only present in about 5% of the population. Your yo yo effect is caused by the Yo Yo's managing your care. I'm 100% positive of it.

 

[Jackie]

Factor V Lieden

Factor V Lieden

It is only present in about 5% of the population. Your yo yo effect is caused by the Yo Yo's managing your care. I'm 100% positive of it.

Just thought I'd ask. Thought maybe since my father had many blood clots during his life and my sister has Factor V Lieden... She was told that it is genetic. Guess I will give that one up. Back to the drawing board until I find out it I will be receiving the monitor.

Jackie

 

[Jackie]

Just thought I'd ask. Thought maybe since my father had many blood clots during his life and my sister has Factor V Lieden... She was told that it is genetic. Guess I will give that one up. Back to the drawing board until I find out it I will be receiving the monitor.

Jackie

Do you think if I tell the YO YO's about the Factor V Lieden it would give me a chance to see a Hematologist?

Jackie

 

[ALCapshaw2]

Do you think if I tell the YO YO's about the Factor V Lieden it would give me a chance to see a Hematologist?

Jackie

That's an interesting question / idea. It might even work.
Why not give it a try. You've got nothing to loose except those Yo-Yo managers.

BTW, who exactly is managing your coumadin?
Nurses? Pharmacists?
Who is the lead Medical person?
Who is the head administrative person?
Are either of the TOP people aware of
your INR and Dose Swings?

There ought to be a way for you to find SOMEONE in the system who knows what they are doing and can help to see that your INR stabilizes.

Whatever you do, be sure to DOCUMENT
your Daily Dose, all INR test results,
and the Instructions and Date of those instructions.
Then show your log to your PCP and Cardio on your next appointment. Let them draw their own conclusions.
Hopefully that won't 'rock the boat' too severely.

'AL Capshaw'

 

[Jackie]

That's an interesting question / idea. It might even work.
Why not give it a try. You've got nothing to loose except those Yo-Yo managers.

BTW, who exactly is managing your coumadin?
Nurses? Pharmacists?
Who is the lead Medical person?
Who is the head administrative person?
Are either of the TOP people aware of
your INR and Dose Swings?

There ought to be a way for you to find SOMEONE in the system who knows what they are doing and can help to see that your INR stabilizes.

Whatever you do, be sure to DOCUMENT
your Daily Dose, all INR test results,
and the Instructions and Date of those instructions.
Then show your log to your PCP and Cardio on your next appointment. Let them draw their own conclusions.
Hopefully that won't 'rock the boat' too severely.

'AL Capshaw'

Pharmacists do some of the managing, but I know I have talked to some that are not, not sure who they are.

I plan to obtain the rest of the infor tomorrow as I go for another test and will be talking to someone from the clinic. I have a calander that I am documenting all daily dose, and all INR test results on. I did ask for their records on this info and I was told that she could not send that to me because it was part of my medical records.

Thank you for your continued input. I am sure everyone must be getting tired of my experances with Kaiser,

Jackie

 

[Guest]

Factor V Leiden does not cause fluctuations. It is a genetic disease that affects the natural anticoagulants. My understanding is that this effect is constant.

Antiphospholipid Antibody Syndrome and Lupus Anticoagulant cause wild fluctuations.

Whether or not someone should be tested for FVL if they have never had a clot is a question for serious debate. One person, whom I know, works for a well-known hematologist. She decided to be tested and was found to have it. When she went to purchase life insurance she was either denied or given such a high premium that she could not afford it. She has never had a clot only a tendency to clot. Had she known about it and not revealed it, her policy could have been canceled. I have never heard of anyone who had FVL being put on warfarin before having a clot - so what is the use in testing before the fact.

Genetic testing can also change the relationships among people. The genetic counselor at our hospital told about this family of 5 sisters whose mother and two aunts had died from breast cancer. They had this bond between them that whoever got it would be supported by the others. Then testing came along. They were all tested for the gene and one did not have it. It divided her from her sisters and she was never close to any of them again. She didn't have "what it takes" to be a member of the club.

Back in 1979 when the technology was rapidly developing for all sorts of genetic tests I gave testimony before a federal panel about the injustices that would surely develop because of genetic testing. It has largely come true.

 

[ALCapshaw2]

Pharmacists do some of the managing, but I know I have talked to some that are not, not sure who they are.

I plan to obtain the rest of the infor tomorrow as I go for another test and will be talking to someone from the clinic. I have a calander that I am documenting all daily dose, and all INR test results on. I did ask for their records on this info and I was told that she could not send that to me because it was part of my medical records.

Thank you for your continued input. I am sure everyone must be getting tired of my experances with Kaiser,

Jackie

I think we all feel your frustration and sympathize with your plight. Unfortunately, it is NOT an uncommon situation. There is a LOT of inertia and ignorance to overcome regarding Coumadin / INR management and many (medical) managers don't accept criticism / correction gracefully.

Any medical provider is REQUIRED by LAW to provide copies of your records. You will probably have to sign a release form and may be asked to pay for copying.

My local hospital will allow you to look over whatever records you desire and select which pages you want copied. Since going to electronic records, they actually print out whatever dates you select and then you only have to pay for the pages you keep. They shred the rest.

Good Luck in your quest to stabilize your INR!

'AL Capshaw'

 

[Jackie]

Qucik Update

Qucik Update

I went for the dreaded blood draw yesterday. It has raised to 3.7. The Manager seemed as though she had been reading Valve Replacement Fourm and Al"s Warfarin Institute. Said she had checked all my records to come up with the right dose, how much I was taking when in range the longest. Told me to come back in a WEEK. How about that? I am still waiting news on the monitor, maybe this good news can transfer to QAS and I will get my monitor soon.

Thanks for all your time and energy spent helping me.

Jackie

 

[aussigal]

Its good to see you smiling Jackie ...a 3.7 INR is close to perfect

 

[Guest]

I thought of the perfect comeback for the people who say that they don't want you to bleed.

"I take warfarin to prevent a clot. If I wanted to prevent bleeding I would not take warfarin."

 

[Ross]

I went for the dreaded blood draw yesterday. It has raised to 3.7. The Manager seemed as though she had been reading Valve Replacement Fourm and Al"s Warfarin Institute. Said she had checked all my records to come up with the right dose, how much I was taking when in range the longest. Told me to come back in a WEEK. How about that? I am still waiting news on the monitor, maybe this good news can transfer to QAS and I will get my monitor soon.

Thanks for all your time and energy spent helping me.

Jackie

Like I said, your in the house or the ball park. No need to change it as it's within tolerance level of testing. Next week it could be 3.4 or even 3.1, just so long as it's not climbing above 4.0.

I would rather spend a week trying to educate you then to have you being poked needlessly.

 

[Jackie]

Good One

Good One

I thought of the perfect comeback for the people who say that they don't want you to bleed.

"I take warfarin to prevent a clot. If I wanted to prevent bleeding I would not take warfarin."

I will use this when the YO-YO'S get to me again.

 

[Jackie]

Smile is gone

Smile is gone

Its good to see you smiling Jackie ...a 3.7 INR is close to perfect

I just found out yesterday that Medicare will not pay for the monitor because my Medicare is turned over to Kaiser for Senior Advantage. I know someone here warned me of this a while back. QAS told me that they would cover it,
and Medicare told me they would, who do you believe?

Jackie

 

[Kathleen]

Believe the one that writes the check. Perhaps others with the same health plan can let you know who they went through. I tried to get a monitor system and had all the doctors in agreement all the paperwork filled out but cannot find a distributor for my health plan. I finally gave up and have lab draws. They are good about calling back and also entering it into my online chart so I have all the records. It may take a bit but keep digging. I know there is Raytel to try.
Kathleen

 

[aussigal]

Sorry about the troubles with your Health-system, being an Aussi I am ignorant of how your USA ones work, but I do sympathise with you being given different stories from everyone...It doesnt help at all...

You can still learn how Coumadin works for you and then you will have a pretty good idea of when you have been given good doseage-instructions compared to instructions that will cause your levels to Yo-Yo...

Al's line is a good one hey!

 

[Jackie]

Sorry about the troubles with your Health-system, being an Aussi I am ignorant of how your USA ones work, but I do sympathise with you being given different stories from everyone...It doesnt help at all...

You can still learn how Coumadin works for you and then you will have a pretty good idea of when you have been given good doseage-instructions compared to instructions that will cause your levels to Yo-Yo...

Al's line is a good one hey!

Aussigal,

You are such a sweet girl. Thank you for all you encouragement. You have helped an old lady finally try to take charge of her life.

Jackie

 

[Ross]

Aussigal,

You are such a sweet girl.
Jackie

Yeah I kind of like her too.

 

[catwoman]

Jackie:

Why is your Medicare turned over to Kaiser? And what is Senior Advantage? Is that a California program?

Kathleen:
Does the clinic not use a CoaguChek so that you will know IMMEDIATELY what your INR is, rather than having to wait for a callback?

 

[Jackie]

Jackie:

Why is your Medicare turned over to Kaiser? And what is Senior Advantage? Is that a California program?

Kathleen:
Does the clinic not use a CoaguChek so that you will know IMMEDIATELY what your INR is, rather than having to wait for a callback?

My Medicare was turned over to Kaiser when I became 65. Senior advantage is the name of the insurance at Kaiser when you turn 65. The insurance is through my husbands retirement, so I don't have much choice, I pay, The Retirement pays, and Medicare pays premiums. What a DEAL.

The lab does the blood draw and then the results go to the Anti-Coagulation Clinic No CargoCheck.

Jackie

 

[aussigal]

Aussigal,

You are such a sweet girl. Thank you for all you encouragement. You have helped an old lady finally try to take charge of her life.

Jackie

awww thanks Jackie....and I dont think 66 is old at all, my mum is 70 and she isnt old either .

This is easy once you give it a try.,.