I fired my coumadin manager (PCP)

[donnag131]

I need to vent to anyone who wants to listen.
I'm trying to take my coumadin management seriously without being too uptight about it, but this last incident yesterday with my PCP has me angered and stressed. And I've been very good lately about keeping my stress levels low, so I don't want to blow it now.

I take a high dose, and my dosing is usually around 130mg and 135mg weekly.(17.5mg/20mg on alternating days. Sometimes a little more, sometimes a little less, but nothing too drastic of a change.) My range is 2.5 - 3.5. My PCP's nurse called with my results one day last August and told me my INR was 3.2 (vein draw) and my new dose would be 17.5 and 10mg. on alternating days. I questioned this, and she told me that's what the doc wanted. Me, being naive at the time on dosing, (but not naive anymore!), assumed he knew what he was doing so I followed the instructions.

Well my following test plummeted to 1.5. The nurse called and told me he wanted me to continue on the same 17.5/10mg dosage!! I demanded he call me in person immediately, and when he did he said 'I'm told you have a problem with my dosing'. He said he would look into it and call me back, which he did in 30 minutes. He apologized and said this is why he hates computers. When I kept pressing for a better explanation, he said he couldn't give me one. He then promised that this would never happen again.

All was fine until yesterday's INR test. My new dosage instructions were 27.5/20! I questioned this and the PCP's nurse said 'oh, I bet he punched in a '2' instead of a '1'. She had me hold while she went to check with him. She then told me it should be 17.5/20. Aha! So that's what happened back in August! He punched in a '1' instead of a '2'!

I spoke to him personally, told him I no longer felt comfortable with him managing me. He is going to refer me to the local Coumadin Clinic. One other note, I performed my first test today on my new INRatio home monitor through Raytel, so I guess this is the beginning of ME taking charge of ME! Hopefully someday I will feel comfortable enough to manage myself!

 

[Gnusgal]

Hopefully someday I will feel comfortable enough to manage myself!

You can do it! You're already starting to see the patterns and recognized that something wasn't right with the PCP's dosing. You just have to trust yourself. You will get to the point where you know how your body reacts to things. Pretty soon you're going to wonder what all the fuss was about.

Good for you for taking the reigns into your own hands!

 

[Nancy]

Donald Trump would be proud of you!

 

[Bina]

Wow....good thing that you are becoming more educated in managing your own Coumadin. I am fortunate enough that my PCP has a good grasp of ACT. It is scary how many docs really don't know how to dose and they over-react. There really is nothing to it for the most part. It's helpful to keep track of your readings in an agenda book or on a calendar.
Congratulations for firing his a$$.

 

[ALCapshaw2]

I keep forgetting how to find the Guidelines for Family Practicioneers or whatever that table is called. It's been posted several times. Maybe Ross or somebody else can come up with the link. It should be a STICKY if it isn't already.

NEXT, I highly recommend that you Buy AL Lodwick's DOSING GUIDE ($5) through his website www.warfarinfo.com

Third, NEVER (or almost never) HOLD for 2 days or more. Many of us don't even like to hold for 1 day, using 1/2 dose instead.

There are several Self Dosers who have lots more experience than I so I will stop here. (Insurance pays for most of my Coumadin Clinic costs but does NOT pay for Home Testing under my plan...and the CRNP managers at my Coumadin Clinic know what they are doing).

'AL Capshaw'

 

[Blanche]

Donna:
Good for you. It is important to be pro-active in one's care.

Now, however, you may have two sticking points. First, you will need someone to write your prescriptions for Coumadin. Second, you might want to check with Raytel. It is my understanding, and I could be wrong, that Raytel's service requires that you test weekly and that you call in your INR results to them. They then provide the information on your INR to your anticoagulation monitor. Now that your doctor is no longer doing this, you may need assistance with this. I don't know what Raytel's policy is on self-monitoring.

Regards,
Blanche

 

[Magic8Ball]

Sorry you had to take this step but glad you have.

If they can't be bothered to check a typo then what chance do you have.

You will get the hang of it, its not that bad....check earlier posts from me during my early days...i posted for confirmation on the decisions i was making from day one...i never ever let my pcp dose me...i did it myself from day one with the help of everyone here. I think my pcp was happy to abdocate responsibility.

Home testing is the key....if you have a crisis you can test every day and get the response there and then....i had a mini blip on holiday and jumped to 3.5 which is my highest ever and with the knowlege i got here i just reduced my dose for a couple of days and then tested two days later to be 2.6.

You'll get the hang of it and there is always someone here to post a confirmation of any decision you are unsure of.

Regards.

 

[warrenr]

dosing guideline

dosing guideline

I keep forgetting how to find the Guidelines for Family Practicioneers or whatever that table is called. It's been posted several times. Maybe Ross or somebody else can come up with the link. It should be a STICKY if it isn't already.

NEXT, I highly recommend that you Buy AL Lodwick's DOSING GUIDE ($5) through his website www.warfarinfo.com

Third, NEVER (or almost never) HOLD for 2 days or more. Many of us don't even like to hold for 1 day, using 1/2 dose instead.

There are several Self Dosers who have lots more experience than I so I will stop here. (Insurance pays for most of my Coumadin Clinic costs but does NOT pay for Home Testing under my plan...and the CRNP managers at my Coumadin Clinic know what they are doing).

'AL Capshaw'

Al,
I think this is what you were looking for

http://www.aafp.org/afp/990201ap/635.html

 

[lance]

Congratulations on your Raytel

Congratulations on your Raytel

Donnagg131,

Thankfully you recognized poor ACT management and have corrected the situation. Soon you will wonder how you got along without your own monitor.

You will get excellent information on this site and vent as often as it takes to feel better.

Best wishes.

 

[donnag131]

Thanks for the support everyone. I never quite understood the way my PCP dosed me. For example, if my weekly dose was 132.5, and my INR was 3.6, he would change my dose to 130mg a week. Does this really make any difference? He was also testing me once or twice a week, always tweaking the dosage.

I recall a visit to the E.R. once after a minor traffic accident a couple years ago. They decided to do an INR check on me. The E.R. nurse whispered in my ear, "I'm on coumadin and I dose myself because most docs don't know what they are doing". At that time I thought that was quite risky of her. Now I know better!

 

[Ross]

Thanks for the support everyone. I never quite understood the way my PCP dosed me. For example, if my weekly dose was 132.5, and my INR was 3.6, he would change my dose to 130mg a week. Does this really make any difference? He was also testing me once or twice a week, always tweaking the dosage.

I recall a visit to the E.R. once after a minor traffic accident a couple years ago. They decided to do an INR check on me. The E.R. nurse whispered in my ear, "I'm on coumadin and I dose myself because most docs don't know what they are doing". At that time I thought that was quite risky of her. Now I know better!

For a 3.6 I wouldn't have changed a thing unless your trending upwards with each test. If your between 2.0 and 4.0, I won't touch the dosing.

 

[Gnusgal]

For a 3.6 I wouldn't have changed a thing unless your trending upwards with each test. If your between 2.0 and 4.0, I won't touch the dosing.

Same here! I just tested today and got a result of 3.6 (range is 2.5-3.5). I plan to do nothing. Maybe have an extra helping of salad, but that's just because I can. Not a dosing requirement. I generally don't change anything until it gets over 4.0.

 

[halleyg]

You did the right thing! I had a very similar experience with my PCP's office when they were monitoring me. At first, I didn't know what I was doing, but after a little while, I felt it was my doctor who had no clue about managing INR. Someone here suggested I find a coumadin clinic, which is what I did, and my coumadin manager is great and I feel like even when I do have drops, that someone is in control who knows what they're doing, and I'm quickly back on track. I am now going to look into getting myself a home monitor for back-up, but I know I'll be going to the clinic for a while. Anyhow, good for you, hope it's uphill from here!

 

[Ross]

You did the right thing! I had a very similar experience with my PCP's office when they were monitoring me. At first, I didn't know what I was doing, but after a little while, I felt it was my doctor who had no clue about managing INR. Someone here suggested I find a coumadin clinic, which is what I did, and my coumadin manager is great and I feel like even when I do have drops, that someone is in control who knows what they're doing, and I'm quickly back on track. I am now going to look into getting myself a home monitor for back-up, but I know I'll be going to the clinic for a while. Anyhow, good for you, hope it's uphill from here!

Your tough! I think you should be a home tester.

 

[halleyg]

Thanks for your vote of confidence Ross! I have been told I am a good candidate for home testing since I was in the hospital.. guess I'm also a procrastinator (and I really do like my coumadin mgr.) I am planning on asking her about getting the machine when I go in on Thursday.

 

[witzkeyman]

He punched in a '1' instead of a '2'!
THAT's INCOMPETENCE!

 

[afraidofsurgery]

I think you should've given him a punch in the nose...
What an idiot!
Patty

 

[zipper2]

Not something to misread

Not something to misread

To make a long story short i had surgery for a cyst removal in 1996
and they take you off coumadin for surgery and back on afterward,well complicated bleed situation they closed me up fast and never really accomplished what they set out to do. course starting me back on coumadin i guess was suppose to start 1mg daily will for five days they fed me 10mg daily and i was complaining of problems i couldnt go to bathroom and unexplained bruising i was swelling,turning very black on insision area and complaining i couldnot go to the bathroom,well the day i was to go home they ran me to icu and tore open my incision ,i threw up this yellow bile im sure the stain is still on their ceiling.But i was begging for a cathether to go pee it was almost 5 days after surgery and somebody help me noone would listen.till i found out an apology from the head surgeon that an error was made in the typing of coumadin amount was being given and instead of 1 mg 10 mg were given daily,they were so scared they ambulanced me back home where i was hospitalized a month on heperin shots and boy i sure do know how rats feel on warfarin your organs stop working and you slowly are dying.
Ishould have sued my husband was just devastated and what we went through was HELL and im not afraid to say they wont see me told me to go to the States where there is better equipment to keep me alive.Now today i wonder why my immune system is sooooooo low and i catch everything.Your sure not a name your a number and no i have never gone back there and no intentions too.Plus they sent me home guess who paid the ambulance bill and canada im really having problems with finding a good Dr. weve been travelling to Calgary alta.

Zipper2

 

[donnag131]

YIKES! I'm almost at a loss for words! That's got to be one of the scariest stories of incompetence that I have heard of. I'm so glad you came out of that alive. It makes me wonder how many others weren't so lucky. When I was much younger, I had a bumper sticker hanging on my wall that said 'Question Authority'. Well lately I've come to realize how true that saying is, especially when it directly impacts my life.

 

[zipper2]

Weary of Drs now

Weary of Drs now

My husband and I knew something was wrong and being a weekend you have different drs looking after you and nurses were told .....oh your naturallt gonna have bruising and swelling after removing a cyst the surgery had caused alot of bleeding they all said. my husband and i totally had no strenght left in us to even fight this kind of event ,i just wanted to get out and never to return,thank-God one intelligent nurse showed up and was aware what was happening. But yes im totallt withdrawn now when it comes to Drs my interviews dont end too soon and piles of questions and i want answers dont have any......see you,presently saw two in Calgary two years ago with my valve endocarditus but ive not been back too much travelling involved and i hate to travel and be away from family that far.Like i said in another post im sitting on all of this for now and know i cant sit too long......all the best to you too

Zipper2