Your thoughts on dad's current dose....

[Ross]

Hon let it go. There is nothing to fear with Coumadin so long as a person is reasonably within range. There is quite a bit of play in the word reasonable too. INR would have to be 8 or above for me to start to get nervous and that's not going to happen when dad has a daughter like you watching his INR.

It's just another pill that has to be taken daily to stay alive. That's all.

Bleeding can occur with anything. I think many times it's reported only because the person also took Coumadin, though Coumadin may or may not have been the primary cause. I had a major GI bleed in 2006. My INR in the ER was 3.2, well within range. My stomach was irritated and started bleeding. Coumadin didn't cause it. Stomach acids did.

 

[Karlynn]

Jennie - I often get very irritated that so many people view Coumadin as being such a horrendous drug to have to take. In reality, it has very very few side effects, doesn't change the way you feel, doesn't require much (if any) life-style change and, is easy to manage when you know what you're doing.

The reality is that there are many many many more prescription drugs taken every day by more people than Coumadin that have the probability of doing much more damage than Coumadin, but because they don't involve bleeding, are not looked upon as being as horrible.

The majority of diabetics self-test and self-dose and mismanagement of insulin can be much more devastating, much more quickly than Coumadin yet I think more people would be less fearful if they found out they had to begin insulin injections than if they had to begin Coumadin.

Plain and simple - Coumadin does not deserve the scary reputation it has. And it's the attitude of the medical community that is at fault for this. They need to get their heads out of 20th century sand and start managing warfarin with 21st century information.

You are doing just fine. You know the basics already and can spot mismanagement easily. You've demonstrated a lot of common sense. You will start trusting yourself in this matter very soon. I've said this before and I'll say it again - Your Dad is so blessed to have you on his side!

 

[Blanche]

Jennie:
I think you are going to have nightmares and doubts about anticoagulation until you find a competent Coumadin manager for your dad. The provider you have is dangerous...She changes his dose when he's in range and piddles around with the dose when it drops. Now, instead of changing to 97.5, you have to pursuade her to increase it to 95.0

Dealing with her is like kissing a corpse. Nothing will change and you and your family will continue to suffer the needless stress and worry that this person is causing with her ignorance.

Your parents are in the San Francisco area. One of the top 25 Heart and Heart Surgery Centers, University of California-San Francisco Medical Centers is located in San Francisco. Have you considered calling them?
Perhaps they have a Anticoagulation Clinic there that your Dad might use. I would also guess that there are many Anticoagulation Clinics in an area like SanFrancisco. If you can't find them, you might do a search on this board. If you still can't find them, someone here will help you.

Then, there is also home monitoring. I know the monitors are expensive.
That way you would be in control. Try contacting QAS and see if they have any refurbished monitors, or if they have a payment plan. We got our monitor because my husband suffered a stroke due to anticoagulation mismanagement. A monitor would solve most of your problems. I would have mortgaged the house to get our monitor.

You and your family have to take action. This terrible, stressful situation is not going to go away and it could get worse.

Blanche

 

[Ross]

Honestly Jen, you know more now, then your coumadin nurse does. Trust yourself and the choices your making, because girl, your dead on right and if you'd trust yourself and your parents would trust you too, you'd all see just how simple this really is. You'll laugh and laugh when you know you've got it and the big bad pro's that get paid, don't.

 

[lance]

AAFP.org reference

AAFP.org reference

This is not meant to hijack this thread.

While reading through the otherwise excellent article--aafp.or I was dismayed to read the third paragraph under Fig. 1. According to a study done in the 80's Coumadin patients stayed in range 68% of the time while generic patients were in range 39% of the time requiring a greater number of adjustments.

Surprisingly it has not been updated since then and doubly surprising that incorrect management seems to be the norm while info like this is readily available to physicians.

 

[Ross]

This is not meant to hijack this thread.

While reading through the otherwise excellent article--aafp.or I was dismayed to read the third paragraph under Fig. 1. According to a study done in the 80's Coumadin patients stayed in range 68% of the time while generic patients were in range 39% of the time requiring a greater number of adjustments.

Surprisingly it has not been updated since then and doubly surprising that incorrect management seems to be the norm while info like this is readily available to physicians.

Yeah that's been bugging me since day one.
Wonder if advertising dollars got it kept there?

Funny though, Home testers are in range a whole lot more then clinics and to me, it's obvious to see why. I'm only now beginning to hear some new Docs starting to make some sense, but those that they trained under are clueless. I think that makes for clueless students too

 

[Blanche]

I did a Google search on "Anticoagulation Clinics and San Francisco." The following is a sample of the clinics found. There were dozens of other Anticoag Clinics listed.


Search Results Results 1 - 10 of about 11,900. Search took 0.16 seconds.



Stanford Anticoagulation Clinic - Stanford Hospital & Clinics ...
The Oral Anticoagulation Clinic at Stanford Hospital & Clinics offers a comprehensive
range of patient-focused pharmacy services.
http://www.stanfordhospital.com/clinicsmedServices/clinics/anticoagulati...


Pharmacy Services - Stanford Hospital & Clinics - Stanford ...
The Oral Anticoagulation Clinic (OAC) at SHC offers a comprehensive range ...
The goal of the clinic is to optimize patients? anticoagulation therapy with ...
http://www.stanfordhospital.com/clinicsmedServices/medicalServices/pharm...


Language, Literacy, and Communication Regarding Medication in an ...
anticoagulation clinic at San Francisco General Hospital (SFGH), the University.
of California?San Francisco (UCSF)-affiliated public hospital of the City ...
http://www.ahrq.gov/downloads/pub/advances/vol2/Schillinger.pdf


Language, Literacy, and Communication Regarding Medication in an ...
b University of California-San Francisco, Division of General Internal Medicine,
... We studied 220 diverse patients in an anticoagulation clinic to assess ...
http://www.informaworld.com/smpp/content~content=a759128753~db=all~jumpt...


Abstracts from the Anticoagulation Forum, San Francisco, CA, USA ...
Web Based Virtual Anticoagulation Clinic in a. Physician Practice .... Lisa Tong,
University of California San. Francisco Medical Center, San Francisco, ...
http://www.springerlink.com/index/KMN113X611625373.pdf


Anticoagulation Clinics and Patient Self-Testing for Patients on ...
Reward Health Sciences, San Francisco,. California, USA. Abstract. This study
was intended to evaluate the cost-. effectiveness of anticoagulation clinic ...
http://www.springerlink.com/index/H04L683N724VTP1L.pdf


Journal of Vascular Nursing : Upsetting the apple cart: A ...
The policy of the anticoagulation clinic is to accept new patients on the ...
was obtained from the University of California San Francisco nurse education ...
http://linkinghub.elsevier.com/retrieve/pii/S1062030305001007


IngentaConnect Anticoagulation Clinics and Patient Self-Testing ...
Anticoagulation Clinics and Patient Self-Testing for Patients on Chronic ...
Ann Arbor, Michigan 3: Reward Health Sciences, San Francisco, California ...
http://www.ingentaconnect.com/content/klu/thro/2000/00000009/90000001/00...


Specialty Clinics
The Anticoagulation Clinic is a specialty clinic organized for the purpose of
... Located at 333 Turk Street in San Francisco?s Tenderloin district, ...
http://www.ucsf.edu/clpharm/residency_specialty_clinics.htm


Nine-year experience with a pharmacist-managed anticoagulation ...
Since 1974, a pharmacist has managed an anticoagulation clinic for ambulatory
patients and inpatients at San Francisco General Hospital Medical Center. ...
http://www.ajhp.org/cgi/content/abstract/43/10/2460



Additional Sponsored Listings
Urgent Walk In Clinic
2600 Park Avenue suite 105
Concord, CA. 94520
www.ParkAveClinic.com
CoagCare® Software
Modernize Warfarin Clinic Mgmt
Supervise POC and Home-Testers
www.CoagCare.com

Sometimes you have to kiss a whole lot of frogs before you find your princess.

Hope this helps.
Blanche




--------------------------------------------------------------------------

 

[Jiddo]

Thank you all for your encouragement, reassurance and resources.

When my dad was going through his 3rd surgery, there were so many decisions to make. My family's first and foremost priority was makng sure my dad made it through surgery. I vowed I never wanted my dad or family to go through another ordeal like this ever again. At one point, my mom and dad were set on a tissue valve. Then, to play devil's advocate, I brought up how a mechanical valve might be better to reduce the chances of a 4th surgery. Although my parents already knew this, I think when I raised this with them, they started thinking about a mechanical valve more seriously. Ultimately, they made a decision to go mechanical. So, I deal with this constant battle inside my head that if anything happens to my dad as a result of the mechanical valve or coumadin, I'm the one to blame. I guess in a way I feel responsible for his fate. I think that's why I am so involved in his coumadin mgmt. I want to make sure nothing bad happens or else I will never forgive myself. I brought this up at one point to my parents and they assured me the decision they made was not because of me.....but I can't help but think I had a big part to play in it.

I also think that my parents should really be enjoying life to the utmost and travelling all over the world. Although coumadin is not stopping them from doing that, I feel that my dad has limitations that he constantly needs to be aware of. I often feel responsible for his limitations.

I know my thinking is probably not rationale but that's how I feel.

On another note, I did take my dad to another coumadin clinic and had him meet with a new PCP to determine if he wanted to switch insurances/doctors. However, to make a long story short, the new PCP told my dad to stay with Kaiser due to his medical history and long standing realtionships with his doctors. So, this makes it difficult for him to go to a different coumadin clinic because insurance won't cover it.

Sorry for the long post. Sometimes I think God is putting me in this postion to make me realize that no matter how much I try and control this situation with my dad.......I am really not the one in control....He is.

Jennie

 

[Blanche]

Jennie:
Your dad does not have to switch doctors or insurance coverage to get a different anticoagulation monitor. Many of the Clinics in San Francisco are Kaiser clinics. He may have to convince his current doctor that he needs different anticoagulation management. While that might be a bit uncomfortable for him, it certainly is possible, I would think. You just can't give up.

The problems that your dad is having are not your problems. He made the decision on his valve with full information and understanding. He really should have no limitations because of the Coumadin. The problem, and I will state it again is that he has an anticoagulation manager who does understand anticoagulation. This is his problem, not you.

There's no reason that he and your mom can't travel and enjoy life. We have people here on this board who have been all over the states and into various countries on a regular basis while fully anticoagulated.

There is a bright side here. Your dad is so much better. Please don't let an incompetent rain on the parade. In the meantime, keep checking for other options. A call to Kaiser might be a good start. Or perhaps his doctor might have some suggestions. I still think that home testing might be an option.

Where there is a will, there is a way,
Blanche

 

[warrenr]

a simple tool

a simple tool

Jiddo,

It is apparent that your dad's act manager dosn't use a computerized system for managing anticoagulation.

Go to the anticoagulation advisor website
http://www.anticoagulation-advisor.com/ckshop.php?category=1

order a anticoagulation advisor slide rule. One of the developers is Dr. Jack Ansell. He is one of the formost experts in the United States.

The slide rule is based on current guidelines from the American College of Chest Physicians and the American Heart Assoc. It is very easy to use and inexpensive. I think you should buy two of them and give one to his act manager and demand they use it for his anticoagulation management. If you can get them to use it your father will alway's be managed within the guidelines. If they won't use it then it is apparent that they don't want to follow current protocol.

 

[geebee]

Jennie,

You simply cannot take on the burden of the "what ifs" when it comes to you father getting the mechanical. Focus on right now and getting/keeping him in range and everything else should fall into place.

I think you should consider a new ACT manager. Someone who thinks going from 92.5 to 95 mg/week is going to make much of a difference has no clue what they are doing. Once AGAIN we have a person who thinks the risk of bleeding is far worse than the risk of a stroke - not true. Besides, with your dad under 3.0, the risk of bleeding is practically non-existent unless he seriously damages some internal organ and even someone not on coumadin would have issues in that scenario.

You helped make what you all felt was the right decision for your dad to avoid possibly losing him to a fourth surgery. Team up with an ACT manager who truly understands how coumadin works, how to alter it to get patients into range and keep them there, and realizes that a clot is worse than stopping a bleed. Once that happens, all will be smooth for a very long time.

 

[catwoman]

Jennie:

I agree with Gina and others. This was ultimately your dad's decision, even if you did offer some input into it. It may have been the right decision, based on his history of previous surgeries. (I'd say it was a no-brainer.)

Your dad may want to seriously consider getting a home monitoring machine, even if he has to pay for it 100% out pocket. It would give him peace of mind if he & your mom were to go on a trip for several weeks or more.

With time, your dad, mom and you should become more comfortable with living with warfarin. I certainly did. Seven weeks after my surgery, I flew to a cat show and freaked out when my cat scratched me. I just knew I was going to bleed to death. (This was before I discovered this website.) Heck, all I needed was a Band-Aid.
I've since realized that life goes on.
I travel with a little plastic compartmentalized box with my warfarin, Amoxi, triple antibiotic ointment and Band-Aids. When I get scratched or (heaven forbid!) bitten by a cat while judging at a cat show, I clean the wound and put on a Band-Aid, apologizing that I don't want any blood to discolor a cat's beautiful coat. I put the emphasis on protecting the cat's fur, rather than being on an anticoagulant and trying to stop bleeding.
This is just something I've graduated to in the last 4 years.
I'm sure your dad will go through this process too.

 

[Jiddo]

You guys are right. Life goes on and I just need to focus on the present and not the "what ifs" of the past. I also need to remind myself that 3 different doctors thought mechanical was the best choice for my dad. This also factored into his final decision.

In any case, today is a new day and I just need to be thankful that I got to celebrate my dad's 63rd birthday this weekend. He has made so much progress over the last few months and I am really proud of him for that.

At this point, I'll look into other anticoagulation clinic options or home testing. Warren, I'll also check out the site you sent to me.

Thanks again.

Jennie

 

[Rich]

Jennie,
You are doing a great job for your father.
It sure can be frustrating dealing with some of these 'experts' in some clinics.
Personally I think going mechanical was the right choice for your dad at his age. If he was older then maybe a tissue would have been OK.
Also I wanted to mention that in a few years if/when he goes on Medicare, all of his blood tests if done as a vein draw at a lab would be 100% covered.
Some would rather have a simple finger poke, but I have been doing it with a stick in the arm for well over eleven years now with absolutely no problem.
Your dad's INR is probably fluctulating also due to an increase in physical activity as he is feeling better.
Keep up the good work,
Rich

 

[geebee]

Jennie,

So happy about the birthday celebration. Isn't it great that these times are there to be celebrated?

Things will all get smoother - just hang in there.

Please wish your father a belated Happy Birthday.

 

[Ross]

Jen go for home testing if there is any way possible to do it!!!!!