Clinic strangeness?

[Protimenow]

I've been self-testing for three years. Before that, I'd get tested occasionally - my doctor had no good follow-up system and didn't seem to care how often I got tested. Before that, I'd get a blood draw.

Since I started testing, I've felt much more in control of my INR than I was with occasional testing. If I had a good supply of strips, I'd test weekly -- if not, the testing would be every two weeks. Even if my tests, week to week, were close, this was good confirmation that my dosing was correct and that I was 'stable.'

Last week, I had an event that called into question the accuracy of my meter. As a result, I wound up in the hospital, and with a referral to an anticoagulation clinic.

I went to the clinic today, and my experience was about as expected: I got there at around 8 AM, had a quick finger stick (surprising -- I thought that they'd do a blood draw and make me wait), and met with a physician's assistant to to over anticoagulation. I didn't really learn anything new -- except that it usually takes an hour or more out of my day; that I shouldn't travel without consulting with my primary care physician (who doesn't exist) and that, for this clinic, monthly testing is just fine. "We've been doing it this way for ten years and haven't had any problems." I wonder how many of these 'stable' patients may have died from strokes or other problems that the clinic didn't learn of.

I also learned that, if I wanted to self test, they may be able to have Alere-Philips handle this -- they didn't seem to care about the tremendous amount that this company charges for sending a meter and reminding the user to take the test - and then going through the extremely difficult task of calling the doctor or clinic with the result.

I'm tempted to do their tap dance a couple more times -- another blood draw next week -- while also testing with my new and old InRatio meters. It'll be interesting to see how the meter and lab values compare.

The inconvenience of going to this clinic. The time spent going to and coming from the clinic, and the wait AT the clinic all make self testing very attractive.

I'm wondering what experience others on this forum may have had with anticoagulation clinics or doctor offices that they'd like to share.

 

[catwoman]

1. I haven't used my family doctor's lab for an INR test (Coaguchek) since about November 2003. I've only gone there twice since then, when I got a new tester and only to demonstrate I could use it.
2. I haven't called in my INR results since about mid-2004. Previous to that, every time I called with my INR, I was told to adjust my dosage or hold the course, just like my algorithm chart said to do.
3. Why would anyone need to consult with their PCP before traveling? I'd be consulting my doctor's office all the time! I have flown 5 times in the last 7 weeks -- 4 of those were out of state, three to other time zones, one trip to Portland OR.
4. "We've been doing it this way for ten years and haven't had any problems." Hmmmmmmmmmmm. That doesn't mean it's the only way or the best way of monitoring INRs. More frequent tests certainly wouldn't hurt; might cost more, but sure wouldn't hurt.

 

[Bill B]

I understand the convenience and other benefits of home/self testing, but I haven't been motivated enough to get into that. I go to a local lab once a month, get a quick draw, and my cardiologist's nurse practitioner reports the result to me the next day and makes a recommendation if needed. I go in for the test at my leisure. I know when to go so there is no wait at all. If I am more than a week or so off "schedule", the nurse practitioner calls and chastises me. So, they do care. It's worked so well I haven't bothered to figure out how to get and pay for home testing.

 

[Protimenow]

This 'clinic' said something like 'no alcohol. Ever' Unless my liver is compromised by alcohol (it isn't), there's no good reason for forbidding me from taking a drink now and then.

And I DO NOT BELIEVE that testing once a month is enough. What if your INR should shoot up or drop between tests? How would they know?

And the claim that they haven't had any problems in the 10 years they've been in operation -- perhaps those who died of strokes because they were undercoagulated between tests and didn't know it didn't hit the clinic's radar. With meters readily available and tests relatively inexpensive, I don't really see any reason to trust once a month testing. There can be too much going on between tests to really trust this testing interval.

 

[Jkm7]

I don't believe there is any coumadin clinic that handles even a moderate number of patients that has had no negative events in ten years involving any of their patients. That defies common sense. We all know there are many non-compliant coumadin users and many who do not understand their need to avoid missing doses etc

If the clinic makes such a statement, I would feel uncomfortable being expected to accept it.

IMO

 

[Madsometimes]

My first experiences of the warfarin clinic were dreadful. Actually, my first experience was good.

The day after I was discharged from hospital, I had an appointment with a warfarin nurse. She took a finger stick sample, and tested me using a coaguchek machine. I watched a video about warfarin, and she answered my questions, and said to return the next week.

The next week, I didn't know what had hit me. There were about 50 people either queuing up to get pricked, or waiting for their results. I was too post-operative to stand in line, so I found one of the few remaining chairs and my husband queued. After I got pricked, I waited for my results and they were given to me in the waiting room by a health care assistant. My INR had dropped to 1.4, but I was told to go home (no bridging offered, and I was in no state to request it). I had a panic attack, and needed the hospital buggy to take me to the entrance because I couldn't walk the corridors. It is typical at my clinic that you do not speak to a qualified person, and that your results are given out in public.

In the first three months my INR was in range only 20% of the time. My maintenance dose is 9.5mg a day, but the clinic spent months trying out 5, 6, 7 and 8 mg doses. Eventually, I was offered bridging, and a nurse trained me in how to inject myself. I had several episodes of visual disturbances, and am under investigation to see if these were TIA's.

The one good thing about my clinic is that they support home testing. I now get to avoid the mammoth queues, and call in my results. Someone either calls or texts me back with my dose and next test date. Now I am stable, they are suggesting waiting 5 weeks between tests. I think that is high risk, so will only go 2 weeks, but only call in an out of range result. Home testing is also quite cheap for me. My coaguchek cost £300, and strips are heavily subsidised (£8 for 50).

The clinic has the same alcohol rules. Only one unit of alcohol per day. That is 125 ml of 8% wine. Can you even buy 8% wine??? I usually drink one 175 ml glass of 13% wine four times a week. Each glass has about 3 units of alcohol. In the early days when my INR was unstable, I didn't drink any alcohol.

 

[Protimenow]

This whole thing about alcohol is thoroughly misguided. Unless you have a severely compromised liver, SOME alcohol is okay. There is a component in the red wines that, if you have enough of it, can eventually have an effect on your INR. Other alcoholic drinks don't have that particular effect. But telling you to NEVER have ANY drink (or, say 125 ml of 8% wine) is nuts.

Also -- it would sure be nice if I could find some heavily subsidized strips for my InRatio. In the U.S., neither the government or the insurance companies care about monitoring -- they'd rather care for you if you bleed out or stroke out.

(I much prefer WEEKLY testing - and in my many years of testing, I don't think that there were many weeks when two results matched).

 

[catwoman]

I understand the convenience and other benefits of home/self testing, but I haven't been motivated enough to get into that. I go to a local lab once a month, get a quick draw, and my cardiologist's nurse practitioner reports the result to me the next day and makes a recommendation if needed. I go in for the test at my leisure. I know when to go so there is no wait at all. If I am more than a week or so off "schedule", the nurse practitioner calls and chastises me. So, they do care. It's worked so well I haven't bothered to figure out how to get and pay for home testing.

I can't go to my family doctor's practice for any type of lab work at my own "leisure." Must have an appointment -- between 8 a.m. and 4 p.m., which means I'd be out sick time 12 times a year (if testing monthly). They use CoaguCheks there.
If I chose to use the Coumadin clinic at my cardio's office, the test would be via CoaguChek.
Either way, I'd be having to miss a minimum of 1.5 days of sick time a year -- in addition to any other sick time lost due to illness, other doctor visits and time spent going to Dallas to take my dad to his neurology appts.
Good to have my own INR tester....

 

[Protimenow]

Here's the latest on my experience with an Anticoagulation Clinic. First, they INSIST that I stop testing my own INR -- apparently, they are the only ones qualified to do so.

Next, because my INRs were within range when tested once each week for the past three weeks, and I told the Nurse Practitioner that my diet was consistent, my INR will always be stable, so I only need a blood draw once a month. Oh, and because my INR is stable, unless something changes, they'll see me again in 3 1/2 months.

So -- I shouldn't test my blood at home. I should rely on once monthly testing by the lab, and everything is hunky dory. If something changes between tests (minor things, like strokes or nose bleeds, or hematuria or excessive bruising), I should give them a call. (She didn't even go into the 'minor' things that improper anticoagulation can cause).

I don't quite understand what's so terribly wrong about testing my blood at home, or why doing it more often than once a month is such a terrible sin. I'm concerned that lots of clinics are following this same standard of care -- and that the patients who they've been managing for ten years and never had a problem with just simply drop off their radar BECAUSE of anticoagulation-related issues that they never hear about.

(It kind of reminds me of an airplane mechanic with a perfect safety record. He never has a problem with any of the planes that he maintains. Of course, the ones that may have had problems never returned because they CRASHED, but the mechanic never learned about THOSE problems.)

 

[Scott]

I know exactly how you feel. I got my CoaguChek last week. The nurse came by and showed me how to use it. I told her I was so happy not to mis work and to be able to test every week. She said I would only be testing every week for the first month and then going to monthly. I tol her I would feel more comfertable testing weekly. She said its her job to make me feel more comfertable with the process. She said that I wouldn't have to wory about my strips expiring because she would make sure I only had what I needed. They come 6 strips to a package. I coul order 48 for what 18 cos buying them like that. I told her I would like to order the 48 and just call in when they want me too. She thaught I would self medicate and said that if I used a strip I need to call in. ( so she can get paid). I am so upset I could screem. So now I have to decide to have another talk with her and possibly her boss or just go on Amazon and buy them. If I buy them thru my nurse the cost goes against my deductable and the strips come from a real medical place. If I get them from amazon I can't be sure. One way or another I will be testing weekly. She even told me that If I didn't follow the rules she could have my CoaguChek removed from my house! I would like to see that happen. It's just really rediculous. It all comes down to money.

 

[Protimenow]

It comes down to money and crappy patient care. This stupid anticoagulation clinic that I 'go to' told me that if I wanted to self test, they may be arrange to have a service (Alere or Philips) take care of it. It didn't matter if I already have a meter. Apparently, it's better to have to pay the 'service' a lot more money than the strips cost, so that they can nag me to call them, and they can tell the doctor what the meter told me. This is a tremendous waste of money.

Your 'nurse' doesn't understand that it's certainly NOT hurting anything to test weekly, rather than monthly.

Buying your strips through Amazon (or eBay, which is where I sometimes get my strips) should be okay - the strips come with a code chip and have quality control built in, so if there's a problem with them, you should know as soon as you try to run a test.

These 'clinics' are truly amazing.

 

[texasmike]

I find it completely incredible that anyone or any doctor would be opposed to home testing. Let me make just two examples of why I say this:
1. When I visited with the surgeon at Mayo, and talked about whether I should go mechanical or porcine, he stated quite clearly that with the advent of home testing, any morbidity/mortality studies before 2000 should be disregarded. In other words, in his and Mayo's opinion, home testing on a weekly basis brings ACT problems to an extremely low level, and makes ACT a safe and effective method of resolving the clotting or bleeding issues that plagued it in the past. I think we can take Mayo's advice as credible.
2. My local cardiologist in Dallas has recently told his nurse that every patient on ACT (and he has hundreds) needs to be put on weekly home testing because of the favorable results that have been achieved using this protocol.
It is sad that so many local clinics and/or cardiologist offices seek to stay in business using outdated methods of monthly testing when it is clear that this approach is not only inefficient, but actually dangerous. My advice is, find another doctor!

 

[Protimenow]

Mike --

I am in absolute agreement with you. Papers have been published that show much high times in range for patients who do self testing than for those that rely on doctors or clinics to do it for them.

I've been self-testing for 3 years, and the only reason that I don't ALWAYS test weekly (and sometimes more often, if my diet, meds or activities change), is that I'm running out of strips and can't get more.

I am NOT relying on this coagulation clinic for management of my INR. I'll continue to self-test and manage -- but am considering going back to an older meter that isn't prone to possible errors that seemed to plague my current meters. I'm also taking advantage of a monthly blood draw to confirm that my meter is keeping me within range.

Certainly, any doctor or clinic that is content with testing once a month or less doesn't really have the patient's best interests in mind. Of course, the clinic I'm going to is probably overwhelmed with patients being managed, so they may not have the time or resources to give each patient the levels of service that they require -- UNLESS the testing (and subsequent dosing evaluations) is stretched out to monthly tests.