Help... INR changes making us nuts

[traig]

I've been lurking here for a couple of weeks ever since my wife's emergency surgery. I wanted to post her story when I had a chance to write it but now I feel like I have to post vent about our situation.

My wife had emergency mitral and aortic valve replacement surgery to correct heart failure that was the result of misdiagnosed septic endocarditis. She had an embolic stroke right before the surgery (vegetation broke away) and has spent two of the last three weeks since the surgery in a rehab hospital getting back movement in her hand and foot. All the while they have been monitoring her coumadin intake and coresponding INR.

Her mobility has been mostly restored and they were going to let her out yesterday, but held her back because her INR was 1.6, too low to go. This was after a 4.6 reading several days ago, the result of two days at a 5mg dosage. After the 4.6 reading they gave her 0 for two days followed by a 1mg dose Sunday night to let the level fall, and it went too low. Now, after dosages of 3 mg (Monday night) and 5 mg (last night), she's still at 1.7 and they're saying that in all likelihood she'll be there until the weekend. She's getting injections of Lovenox (sp??) in her belly each night now until her INR is "theraputic".

This is making us nuts, especially her, because we have 3 month-old twins and she misses them terribly. Is this kind of yo-yo common in the early going with Coumadin/Warfarin? I want to be able to tell her that it's not unusual, to give her some consolation...

Please help me, every night I see her and she is in tears over the fact that while she kicked ass to get out of the rehab early and get home to our kids, she's stuck because the coagulant levels just won't cooperate.

 

[Karlynn]

First of all Welcome! I am so sorry to hear of your wife's experiences. I can so relate to her sadness. My children were small when I was sick with valve troubles and I had to spend some time away from them. It's heart breaking. No pun intended.

You have come to the right place. I'd first like to recommend one of our member's website www.warfarinfo.com. This is Al Lodwicks site and he is a Coumadin expert. He travels the world speaking on warfarin and runs his own anticoagulation clinic. I'm sure he'll be along to weigh in on your questions, but his website has tons of information.

Yo Yo-ing can occur in new warfarin users (Coumadin). I hate to say this, but the BIG mistake was them holding your wife's Coumadin for 2 days with a 4.6 INR. 4.6 is not extremely high. Your wife's target range is most likely 2.5 to 3.5, and it may even be 3.0 - 4.0 given her history. Holding Coumadin for 2 days would send her INR into the cellar, and that's exactly what happened. Then starting her back up on such a small dose only made matters worse. It is a very good thing that they have her on Lovenox. But someone way over reacted to the 4.6. They should have just lowered her dose a bit, maybe 10% of her weekly dose, and test again in 3 to 4 days. We have found that the medical community tends to freak out when someone's INR is too high. But anything below 5 is not dangerous and many people have been above that with no complications (myself included).

If she is back on 5, her INR should increase. If her INR gets too high again, do not let them hold 2 doses again. Or even 1 dose unless it's way too high. Also, make sure they are not giving her any nutrition shakes. These can contain hidden vitamin K and cause her INR to stay low.

Many members have given themselves Lovenox shots at home when their INR either needs to be low (because of an invasive surgery approaching) or is too low for a lenghth of time. Would your wife be able to (or you possibly) give herself the shots? If so, ask if she can go home and administer her own Lovenox.

After she is home, start giving yourselves a crash course on Coumadin. It's not the big scary monster many people will lead you to believe and their are so many misconceptions. I would also highly encourage looking in to home testing.

I'm so sorry you've had to experience, right off the bat, how some medical professionals don't understand how to manage Coumadin. This is why it's such a good idea to educate yourself. Al and this site should be a big help on this.

Wishing you and your wife the very best. You are not alone in this any more.

 

[loretta]

Inr

Inr

Hi, after my valve replaced they couldn't regulate my coumadin in the hospt. I was in there for 12 days after my surgery & I was suppose to go home in 6 or 7days. Finaly they got it right , but I still have a problem with it. The home testing is good to have. Also this site has helped me so much . loretta

 

[geebee]

These are the times that try my temper. I cannot believe they held coumadin for 2 days for a 4.6 reading. This truly proves how little is still know about coumadin by many in the medical profession.

It is difficult to argue with doctors in a hospital setting and self-dosing is impossible when your meds come from the hospital pharmacy. However, I would try and sit down with the prescribing physician and try to explain info from Al's website.

I agree with Karlynn. If your wife is on 5mg/day, her INR should come back up. Unless the INR tests at over 5.0, the weekly dose should be lowered but I would not skip any doses especially with her history.

Also, do not let them test every couple of days and then adjust dosages. It takes 4 days for coumadin to fully register on the INR.

Please look at Al's website. Print out charts and take with you to the hospital.

Give our best to your wife and tell her things will get better. Be sure and take care of yourself too.

 

[Nancy]

Welcome-

Yes it can be difficult to regulate INRs after heart surgery, but from what you are posting, it seems she is at the mercy of a facility that hasn't a clue about her regulation of Coumadin. Holding for two days and then giving an extremely low dose brought her way too low. And here she is recovering from a stroke.

With her history, she should be in the range of 3.5-2.5 and probably on the high side of that, due to her dual valves.

They put her right back into stroke territory.

You'd better chew someone's head off BIG time and get her properly anticoagulated. If the doctors in the rehab don't have a clue, then call her cardiologist and if it was the cardiologist that did this then call her surgeon. The fortunate thing is that she is on Lovenox to help protect her.

She doesn't need any more problems.

INRs are very often different from day to day. That's the nature of the drug. But most doctors know what to do about things that start swinging around. It's easy small adjustments and it takes three days for what is dosed today till it shows up in her testing. So they are at least thinking about that when they give her Lovenox.

 

[terryj]

My husband was in hospital for 8 days because they could not regulate his INR. I asked if I could give him the shots at home and they were happy to teach me how. The only problem was the shots were paid for by insurance when the nurse was giving them. When I went to get prescription filled insurance wouldn't pay for them. $350.00 for 10 shots. We used 3 and his INR was finally high enough. 7 expensive shots left over. They come in packages of 10 and they would not split a package. But, I think it was worth it to get him home where he could sleep and eat better. I'm sure your wife would think its worth it to get home to newborn twins.

 

[Gemma]

Her mobility has been mostly restored and they were going to let her out yesterday, but held her back because her INR was 1.6, too low to go. This was after a 4.6 reading several days ago, the result of two days at a 5mg dosage. After the 4.6 reading they gave her 0 for two days followed by a 1mg dose Sunday night to let the level fall, and it went too low. Now, after dosages of 3 mg (Monday night) and 5 mg (last night), she's still at 1.7

Firstly, welcome! You've found a great place full of people who've been there, done that and in some cases, even bought the t-shirt! I think getting the INR regulated is one of the things that often slows up discharge from the hospital, so please tell your wife she's not alone and it will be sorted out soon.

Having said that, it sounds like her anti-coagulation is being badly managed to say the least. To get things straight in my head, am I correct in thinking her INR and dosage have been as follows? (Please correct me if I get any of it wrong):
Wednesday: 5mg
Thursday: 5mg
Friday: INR 4.6, 0mg coumadin/warfarin
Saturday: 0mg
Sunday: 1mg
Monday: 3mg
Tuesday: INR 1.6, 5mg
Wednesday:INR 1.7

As has been mentioned by others above, it takes 3-4 days for a change in dosage to show up in the INR result. So the 4.6 was as a result of whatever dosage your wife was taking before the 2 days on 5mg. Then yesterday's and today's results of 1.6 and 1.7 are more than likely due to the 0mg and 1mg she had over the weekend.Testing tomorrow or Friday, and assuming she's taking the same dosage each day now, should give a better idea of what her INR will be on her current dosage. If they try to change her dosage again without letting her INR "settle" your wife will be stuck on a see-saw of high/low INRs and decreasing/increasing the warfarin dosage.

It sounds to me like whoever is in charge of her dosage doesn't really know how warfarin (coumadin) works, and need to be told to stop being so reactionary in its handling.

Let us know what her next result is, and we'll all try to get her back home to her babies ASAP .

Also, once she is home, either find a coumadin clinic that understands warfarin management (ask your wife's cardio or PCP for a recommendation or perhaps someone here knows a good clinic in your area) or look into home testing. Either way, she will be much more likely to stay in range and have a lot less problems.

Gemma.

 

[FauxClaud]

I can relate!

I can relate!

But we are home....9 days post op and trying to get the "right" dose of Coumidin!
It is, because we are home, not too bad..and we are able to go local and get the blood test. Our cardilogist is having th regular ped do a standing order for the lab so we can get the INR level checked whenever we need it....so right now..it's like every oter day..pack up the kids and go get a stick done.
Garin's a 4.2 as of today..so tonight we try 4 mgs instead of the 5 we have been doing. Monday after days of 5mgs, he was a perfect 3!!
And tomorrow we go get tested again! Wheeeee!

 

[Gemma]

Claud,
I'm just wondering why you're getting Garin tested again tomorrow after only changing his dose today. It'll be probably Saturday before a change shows up based on 4mg starting today (because it takes about 3 or 4 days for the INR to show up dosage changes).
Gemma.

 

[Karlynn]

Claud,
I'm just wondering why you're getting Garin tested again tomorrow after only changing his dose today. It'll be probably Saturday before a change shows up based on 4mg starting today (because it takes about 3 or 4 days for the INR to show up dosage changes).
Gemma.

Our little Gemma has grown up so fast!!!

I hope Jim knows how lucky he is to have you by his side!

 

[Gemma]

Our little Gemma has grown up so fast!!!

I hope Jim knows how lucky he is to have you by his side!

LOL It's only because I have such great teachers . Besides, why get needles stuck in you if you don't need to?

 

[catwoman]

Traig:

Like others here have said, many medical professionals do not understand warfarin.
According to www.acforum.org, here are the certified anti-coagulation clincs in D.C.:

WASHINGTON HOSPITAL CENTER
Phone: (202)877-7509
110 IRVING STREET, NW, WASHINGTON, DC 20010-2975

HOWARD UNIVERSITY HOSPITAL ANTICOAGULATION MANAGEMENT SERVICE
Phone: (202)865-7802
2041 GEORGIA AVENUE, NW, WASHINGTON, DC 20060

WASHINGTON CANCER INSTITUTE(C2151)
Phone: (202)877-8864
110 IRVING STREET NW, WASHINGTON, DC 20010-2975

WALTER REED ARMY MEDICAL CENTER
Phone: (604)822-7275
6900 GEORGIA AVENUE NW, WASHINGTON, DC 20307

KAISER PERMANENTE COUMADIN SERVICE
Phone: (202)872-7389
2100 W. PENNSYLVANIA AVE NW, WASHINGTON, DC 20037

This list may not be 100% up to date. These folks should know their stuff about managing warfarin. If you're in a D.C. suburb, go to www.acforum.org and see if there's a place in MD or VA that may be closer.

Your wife will want to check out different anti-coagulation topics on this forum at valvereplacement.com. Tell her to post away with questions. We can help her or refer her to websites that can. (She can search topics by going to Search at the top of the screen.)
Al Lodwick, R. Ph., a certified anticoagulation care provider at a hospital in Pueblo CO, is a member here and answers many of our questions. We learn a lot from him. Karlyn posted his web address in one of her posts.

I'm sure you'll be helping your wife out a lot on her information quest, since you've got 3-month-old twins.

In time, your wife may want to begin home-testing for INR levels. More and more insurance companies are covering purchase, either full or partial coverage, of the testing machines. Right now, there are 2 on the market: INRatio and ProTime 3. I do my own tests, record them in a booklet and give my PCP my results at intervals. I have a dosage chart that I purchased from Al Lodwick that helps me determine how to adjust my warfarin dose if my INR were to be extremely high or low.

Give your wife a hug for all of us! Hope she is back at home pronto!

 

[Guest]

There is ABSOLUTELY NO WAY, NO HOW that an INR of 4.6 should have been held for two days in a hospitalized patient. This demonstrates total incompetence on the part of the person monitoring her warfarin. It does not matter what the docrtor's philosophy is for managing an outpatient - when you are in the hospital there is a very simple, cheap lab, easy to interpret test call the PT/INR that should be done every day. To hold someone's warfarin for two days without doing that test is malpractice. The Lovenox, as someone else pointed out, is very expensive and in addition to your grief and your wife's grief, the children missing their mother, the doctor cost the hospital a significant amount of money with this incompetent order. I think that you should ask to talk to the Patient Relations Manager and file a complaint. To make it really nasty, you could suggest that the doctor not be allowed to prescribe warfarin without another physician supervising him/her.

 

[FauxClaud]

Claud,
I'm just wondering why you're getting Garin tested again tomorrow after only changing his dose today. It'll be probably Saturday before a change shows up based on 4mg starting today (because it takes about 3 or 4 days for the INR to show up dosage changes).
Gemma.

You know..I was just thinking the same thing earlier today...kinda makes me wonder that in this short time span I already have a better understanding and handle on this Coumidin thing that his Cardiologist!! I'm keeping track of it all in a notebook so I can see the pattern and changes.

Needless to say, I expect an even higher reading tomorrow than the 4.2 based on the previous 5mgs......will see on Sat ( than God for the standing order at the lab and lot of hours in the day including Sat time..I'll take him in then even if the doc does not call for it!). Depending on how high tomorrow is, I hope I can see if he is still climbing, or if the 5mgs leveled off. If it has leveled than I think maybe I wil push for 4 mgs..so the next reading does not plummet based on the 3mgs he had tonight. I can see how one can see saw with this by over reacting.

The cardioloist is trying to get the Pediatricain to take over the Coumidin maintanence, but somehow I can see me telling them his correct dosage!

 

[twinmaker]

Hey Traig, Welcome to the site! Your wife's story sounds a little like mine, except our twins had just turned 3 when I had my valve replacement. I can relate to being hospitalized and away from your kids. I also had trouble with my Coumadin being regulated after the surgery. Of course this was 24 years ago. At that time the doctor was changing the dose with every little jump or dip that my Protime showed (they didn't have the INR at that time). I guess some doctors never learn as is evidenced with your wife's story....even after all this time. I finally started seeing a Hematologist at Johns Hopkins and he never changed my dosage unless my Protime was WAAAAAY off. The first thing he told me was that my cardiologist was playing around with the dosage too much. Keep us informed about how things are going and tell your wife to hang in there. Linda

 

[Guest]

Once your wife leaves the hospital, it will be very difficult if not impossible, to get her warfarin regulated if she tests more than once per week. The reason is that warfarin is a very slow acting drug. If you test too often and base the dosing on the last dosage change, the last dose will not have exerted its full effect. If she is tested more than once per week the dosing decision must be based on what she took over the past 7 days, not what she took since the last test. Few doctors grasp this concept. Try to find a warfarin management clinic.

 

[traig]

Thanks so much

Thanks so much

First, thanks to all of you who took the time to not only read my post but reply here as well. It was heartening to see such a quick reponse. This forum had helped me previously; when we were concerned about my wife's post-surgery tachycardia (120-130 resting rate), coming here and reading posts from others who had been through it was wonderful (she's now down to 100-110 bpm and slowly falling).

To Karlynn and Al and everyone else, thanks for your input. My wife's been in the care of the head of the cardiac program at the rehab hospital and he's been just terrific, so it's hard for me to swallow that he and the NP might simply be unable to manage the Coumadin administration properly, but my sense from you folks is that might be the case. My father-in-law has been at the hospital with my wife during daytimes since I have to work, and he's been in touch with the maker of Coumadin (BMSqibb?) and they seem to parrot what the doctor and NP are saying, that it's more art than science, but no one seems to be addressing this concept that there can be a significant delay between administration and INR response. Her level was 1.7 yesterday so they responded with a 7.5 mg dose last night in conjunction with the Lovenox injection.

GemmaJ, your summary is correct.%%

Al, your site is great -- I've only had a moment to skim it but I already bookmarked it and looked through the mech. valve interviews.

...

I just got word while writing this that today's INR is 2.5 so they're going to release her tomorrow... hallelujah. In the meantime, my father-in-law is trying to get her new cardiologist on the phone to discuss coumadin management, something his practice does for patients in Rebecca's position. We're also going to use some graph paper (or Excel) to plot her intake and coresponding INR to see if we can figure out her trends ourselves.

Frankly, I'm still somewhat concerned that the 7.5 dose from yesterday and the one coming tonight will cause a big uptick in her INR tomorrow and Saturday.

 

[Ross]

traig unfortunately, even the top surgeons and doctors may not have a grasp of the Coumadin issue. It really is disturbing. Your quickly going to learn that you need to know all you can about it and KNOW what to do because so few really understand it. I'd like to see this change in my lifetime, but so far, I'm not seeing this to be true.

They need to put her on a steady dose and get her through a week and retest. This 7.5 today, 5 tomorrow, 10 the next is never going to accomplish anything. For her sake and yours, find someone that understands how to manage it.

Yes her INR is going to go up with these doses, but not until Saturday and Sunday. Like I said, they need to give her an even dose and let it ride for a week. Even then, being fresh out of surgery, she's going to teeter totter for a bit.

 

[Nancy]

I won't go into the long sad tale, but Joe was in a rehab facility last Feb. for a fall he took AND this rehab facility does cardiac rehab.

They put him into between Class 3 and 4 congestive heart failure because they refused to keep him on his low sodium diet. Couldn't even do something as simple as that.

I chewed out the dietician, spoke with the dietary head and the nurses and everyone else I could get to. It took him about 5 months to get back into stability.

DO NOT COUNT ON THEM at all. Keep a careful eye on everything they do to her and don't hesitate to speak up and go to whomever you have to, even if you have to take the Coumadin management out of their hands and have another doctor come there or do it by phone.

This was said to me---, "Well, many people confuse a rehabilitation facility for a hospital. It's not a hospital."

So that's the mentality we were faced with. They were OK with ignoring his many other medical problems.

You are going to have to advocate for your wife, she is in a helpless condition right now.

And trust me, I'm not pleasant when I see incompetence in my husband's care. So, do not be whimpy where your wife is concerned. Some people just need a boot in the backside.

 

[EVELYN]

Hi Traig

I haven't had a chance to post because we've got so much going on here at our house, with a sick dog, and just in general being busy, but I'd like to welcome you to the site.....It truly is a great place, isn't it!!!

As far as the Coumadin issue is concerned, we have learned much more here than from our cardio or gp. We also do HOME TESTING....We test once weekly with our Coaguchek machine, and adjust Tyce's dosage accordingly. We don't get crazy if it's a bit high (over 3.5) and if it is quite high, we lower Tyce's coumadin usually by 10% for the week......thank you Al Lodwick!!!!!

I'm sure your cardio will not want you to have your own machine for about 6 months, but when that time comes, it's worth it's weight in gold. It gives you freedom. As I said, we check weekly and used to fax results to our cardio's office.....we don't do that anymore. Matter of fact, I just checked Tyce's INR about 5 minutes ago and it was 3.0....soooo odd for the summer, too.

I believe you will find many messages on this list about INR---IT'S NEVER RIGHT. You probably got a list of foods to eat or foods not to eat, instructions about NO alcohol, little alcohol, etc......If you stick to that list you're not going to be happy or realistic. Life has a way of getting in the way!!!

Coumadin is a very manageable situation, and you will get to that point. Rossman is right, she needs to be on a steady dose and then rechecked in a week. All the adjustments you're talking about will never get her regulated.

It will work out.......but I do feel it is VERY important to learn how to manage your own coumadin issues......there are too many healthcare "professionals" out there who are CLUELESS.

Good luck,

Evelyn