What would you do?

[cocoalab]

Last Wednesday Andrew's INR was 1.6. He is suppose to be 3.5 to 4. I did not know the results until Friday night and was told to have him double and for him to take 3 mg everyday. He had previously been high 4 something. We only gave him 1.5 x his dose and then continued his 3 mg daily- instead of 6x a week. He retested Monday and he is now at 1.4. I am very uncomfortable with him being so low for this long. What should I do? The nurse didn't seem overly concerned but I know last time he was this low they were talking of admiting him. How concerned should I be? Should I contact his cardio? This is a bad week for complications for us.

Thanks,
Wendy

 

[Bina]

First of all, if it was me at 1.4 that would send me to the doc or ER for a Lovenox shot.
Secondly, what was his daily doses last week and this week?

 

[njean]

Last Wednesday Andrew's INR was 1.6. He is suppose to be 3.5 to 4. I did not know the results until Friday night and was told to have him double and for him to take 3 mg everyday. He had previously been high 4 something. We only gave him 1.5 x his dose and then continued his 3 mg daily- instead of 6x a week. He retested Monday and he is now at 1.4. I am very uncomfortable with him being so low for this long. What should I do? The nurse didn't seem overly concerned but I know last time he was this low they were talking of admiting him. How concerned should I be? Should I contact his cardio? This is a bad week for complications for us.

Thanks,
Wendy

I too have to have my INR between 3.5 - 4.0 & when I've fallen that low, I have to inject myself w/Lovenox until I'm therapeutic(?) & I take my usual dose every day until I reach 2.0 or better.

I would call his cardio & ask him about the Lovenox until he's in range?

Best wishes & let us know!

 

[dick0236]

Your Monday test may have been to soon. If you didn't make the dosing change until late Friday or early Saturday and then retested on Monday, maybe enough time had not elapsed for the change to take effect. Also, the amount of the dosing adjustment may not have been enough to get from 1.6 to 3.5+. If he went from hi 4s' to 1.4/1.6 is anything else going on. I believe I would retest on Wed. If the number hasn't moved to 2+ I would call cardio. If it has moved up I would increase weekly dose by +10% and retest in a week.

 

[catwoman]

I'd contact his cardiologist or family doctor, whoever writes his Rxes for warfarin. He probably does need some Lovenox for the time being.

Was this a lab draw? It was done on Wednesday and you didn't get results until late Friday.

Sounds like y'all need a home-testing machine and Al Lodwick's dosing algorithm chart.

What do you think is causing the drop in his INR? Has he forgotten to take his pills?

 

[Karlynn]

Did they actually have him skipping a day in his weekly dose?

I would call for the Lovenox shots until he gets in-range. I'm not sure why they would want to admit him, unless they prefer to put him on a heparin drip.

Since his dose is still low - I'd do a 15 - 20% adjustment and test every 3 days to make sure it's not going the other way.

You should also be getting his INR results STAT - not 2 days later. They should have called you immediately when they saw the low INR - but even so - same day or they redo the test. (Years ago my cardio ripped the lab a "new one" for getting the PT to him a day late.) There are a few things you mentioned in your post that make my warning bells go off a bit on his management.

I'll echo Marcia's "home testing" question. It's the way to go, particularly for a busy family.

 

[perrypiratesdad]

I don't know, but I have been that low before, and I didn't really worry too much.

First question that I would ask myself, is why is it low? Did I change something (major diet change, new Rx, etc). Next would be, did I miss a dose?

If it were me, I would just double my next dose, and continue my regular dose schedule. I would not recheck any sooner than one week.

I'm sure Al Lodwick could be of help to you. Check out http://www.warfarinfo.com/ for more information.

 

[ALCapshaw2]

I recently read somewhere that with an INR below 1.5, there is NO anticoagulation protection.

Since your son has a St. Jude Mechanical Valve in the Aortic Position, I would be calling Doctors until I had a prescription for the appropriate (weight related) dose of LOVENOX, assuming you /he have been trained in Self Injection of Lovenox.

If you have NOT been trained to self inject Lovenox, the only solution this evening would be to go to an ER to get a shot. He will need Lovenox injections every 12 hours until his INR is back within his designated theraputic range.

I would also call his Cardiologist's office / answering service and ask for his Cardio (or the one on call) to call back within the hour.

I don't have a good feel for how long we Mechanical Valvers can go 'unprotected' without risking Clot Formation but 6 days is way longer than I would want to go unprotected! Call his cardio TONIGHT.

'AL Capshaw'

 

[cocoalab]

Thank you all,

actually we do have a home tester but we are out of strips and the insurance has been very slow to pay so we are waiting for more.

His previous dose was 3 mg 6 days and 1.5 1 day. He did inform me after I posted- and told him his results- that he thinks he forgot to take a dose Fri or sat night. that makes more sense. However I am really not happy at how long it takes to get results and to make changes. Andrew has not ever taken Lovenox. I am assuming they were thinking heparin.

I don't think there will significant change by tomorrow so I plan to retest Friday. Just think i should send his doc an inquiry about how long she is comfortable with him being below two. Thanks for your advice.

 

[ALCapshaw2]

Thank you all,

actually we do have a home tester but we are out of strips and the insurance has been very slow to pay so we are waiting for more.

His previous dose was 3 mg 6 days and 1.5 1 day. He did inform me after I posted- and told him his results- that he thinks he forgot to take a dose Fri or sat night. that makes more sense. However I am really not happy at how long it takes to get results and to make changes. Andrew has not ever taken Lovenox. I am assuming they were thinking heparin.

I don't think there will significant change by tomorrow so I plan to retest Friday. Just think i should send his doc an inquiry about how long she is comfortable with him being below two. Thanks for your advice.

Lovenox is Low Molecular Weight Heparin and comes in a syringe that patients can self inject. Whoever manages his Coumadin can teach you/him how to do the injections. Lovenox is Quick Acting with a short Half Life and therefore needs to be injected every 12 hours until his INR is back in his target range.

Heparin requires a Hospital Stay for an IV drip until his INR is back within his target range which could take several days. Talk about BOOOOR-ING (and Expensive)!

Are you saying you are NOT planning to make any changes (and NOT planning to protect your son with Lovenox or Heparin) until Friday? This 'carefree' attitude scares the H*** out of me after 6 days below 1.5 INR. The *reason* he is on Coumadin is because Mechanical Heart Valves can cause Clots to be formed which can break loose and cause a STROKE. Coumadin (and Heparin or Lovenox) helps to REDUCE that risk greatly.

PLEASE, contact his Cardiologist First Thing in the morning and let him know how long your son has been out of range. I would hope that the Cardio will urge you / him to get a Lovenox injection IMMEDIATELY to protect him from the possibility of Clot Formation and STROKE.

Personally, if I had been below an INR of 1.5 for 6 days, I'd be on the telephone NOW, or on my way to the ER to get a Lovenox shot.

IF your son shows ANY signs of stroke, you will need to get him to the ER within 3 hours of onset in order for the effects to *hopefully* be reversed. After that, any damage will be PERMANENT.

Call me an alarmist if you wish, but STROKES are nothing to play Russian Roulette with. If you are concerned about protecting that excellent BRAIN of his, get him a Lovenox Shot ASAP.

'AL Capshaw'

 

[Karlynn]

Since he's on a pretty low dose - I'm guessing he may have forgotten more than one day to arrive at that low of an INR. He is a teenager, after all.

 

[witzkeyman]

My INR was 1.4 yesterday. my cardio just increased my dosage for the weekend.

 

[Guest]

Probably the biggest factor here is that we are talking about a 17 year old male. Of course he is going to miss doses. He knows all of the answers. Almost every 17 year old diabetic goes into the hospital with keto-acidosis - a life threatening complication. Why, because the decide that insulin is stupid, boring, sucks or whatever the current popular word is. Unfortunately, at that age they also figure that they are supermen and nobody else understands. Also the factor that girls won't like him if takes routine medication. The sad truth is that he may be very close to turning himself into a vegetable if he continues to skip his warfarin. One of the saddest days of my life was to see one of my young male patients who admitted to "Not paying attention to my warfarin" in the hospital after a stroke. He was sitting on the side of the bed when both hios wife and the nurse let go of him at the same time. He fell over sideways just like a big stuffed toy. No attempt was made by him to stop his fall. He was an artist for a civil engineering firm. He could look at the plans for a building etc and drwn what it would look like when finished. After his rehab from a stroke he could barely keep a job as a dishwasher in a busy restaurant.

By saying that he may have missed a dose or two he is really admiting that he missed at least that many.

I think what Andrew needs right now is some tough love. He needs to have his warfarin given by his mother and his mouth checked to see that he really swallowed it. He needs to earn back the trust to take his own medications. He SERIOUSLY needs to be on Lovenox to prevent a stroke. He also needs to have the treat of a needle in the belly the next time that he misses warfarin. I think that he also needs to have a talk with his Mom about what girls will look for in a boyfriend. The girls that he is really going to have a relationship with are those that know about his condition and medication but will accept it. If he thinks it is hard to have a girlfriend because he is on warfarin, then he needs to think about how much harder it will be to attract a girl when she needs to come to the nursing home and feed him because he is paralyzed.

It won't be easy but I suspect that you are up to the task cocolab because I also suspect that nothing with Andrew has ever been easy.

 

[ALCapshaw2]

My INR was 1.4 yesterday. my cardio just increased my dosage for the weekend.

YES BUT, you haven't been under 1.5 for 6 DAYS as has Andrew.

AND, I would 'guess' your target INR is 2.0 to 3.0
which is the standard recommendation for AVR with
NO additional risk factors.

Andrew's Cardiologist recommended a Target Range of 3.5 to 4.0. Can you imagine his additional Risk Factors? Check out his Personal History page.

 

[cocoalab]

I wanted to let everyone know Andrew is back in range though I am pretty sure he has bounced the other way by now. We increased his dose and by Friday he was already 3.8.

Trust me he is not missing his doses on purpose. We now have a new system with his coumadin in the pill box with each days dose so we know that it wasn't forgotten. Andrew almost died last year. He has no illusions of immortality and taking coumadin is such a small part of his medical routine that I doubt he thinks too much about it- especially as far as girls.

What really frustrates me is the lack of follow up we have with his coumadin nurse. I had to find out at his cardiac rehab what his test results were. Things were a little crazy this week and I left a message with her to reach me at another number but have not yet heard from her.

I am just praying he gets more strips in so we can follow him at home. At least then I am not waiting days to find out where he is at.

 

[Guest]

I'm glad that he is in doing better.

 

[catwoman]

Wendy:

Glad that Andrew is doing better.

I agree that the time lag isn't workable. Are you locked in to using the Coumadin nurse? Is this through your cardiologist's office or your PCP's office? Are you able to switch to another location, if this is doable?

 

[ALCapshaw2]

YES, Home Testing (and Dosing) would be a Big Improvement over the situation you describe with his 'Coumadin Nurse'. Waiting for days to get INR
results is simply NOT acceptable. His Doc's need to know about this poor service.

Does this Nurse work for his Cardio? or GP? or ???

Another alternative might be to see if you can find (or get a referal to) a Real Coumadin Clinic, preferably one that uses Finger Stick Testers and gives you the results within 30 minutes or less.

Good Luck with the Pill Box!

I also use a 31 day chart to record when I take ALL of my medications each day, along with weight, symptoms, or test results. It hangs on a clipboard over the Kitchen Sink.

'AL Capshaw'

 

[Jkm7]

Very happy to hear he is doing better. He's been on my mind. Thank you for posting.
It would be wonderful if you could get the supplies you need to do his home testing. Seems the best method for most.

 

[cocoalab]

I don't know what Andrew's options are as far as follow up. He is followed by the nurses at the Children's hospital, Surgeon and cardiologists'. There are three of them and I have the direct line to one who has been following Andrew since he was 6.What really makes me nervous is his losing insurance at 19 which is only 4 months away. Then he will really be in a mess. He is of course very complex and has not only artificial valves but a defibrillator that need close monitoring and a complex heart defect that requires frequent follow up. He plans to attend college and work. I worry that he won't be able to do both but know he has no choice if he wants to go to school.