Update on Dad

[Jiddo]

Hello friends.

Well, my dad took his blood test yesterday and his Inr came back at 1.9 (just got the result this morning). I'm not surprised. His test last week was at 2.0 and he wanted to keep on the same dose to see what would happen this week. So, he told me that if he had a low INR this week he would consider raising it. I am going to call the pharmacist this morning and push an increase from 95 mg to either 100 mg or 102.5 mg (5-7% increase). I hope I don't talk to the same coumadin lady as last week, who was dead set against an increase with an INR of 2.0...we had a pretty long debate over this.

So, here's the deal. One of the main reasons my dad is hesitant about increasing his dose is because of a couple of minor bleeding episodes he had. To be honest, I don't know all the details because the bleeding seems to have been "male" in nature. One had to do with some sort of cyst or something where he bled through his pants. I think it was just a minor bleed but obviously, something that concerned him. He got an ultrasound and the doc said there is no internal bleeding and the bleed could have been attributed to the coumadin. The other episode seems to have been more private in nature (won't disclose details) but again, he got it checked out and again, the doc attributed it to either coumadin or one of those things that men get as they age.

Has anyone else experienced minor bleeding episodes even with a low INR? I understand my dad has to take an appropriate dose to be within his 2-3 range but again, he is taking more than the average person. Could the amount of the coumadin be attributed to these episodes? Logicially, I want to say no based on all the info I read on here but there seems to be some correlation because he never experienced these problems pre-coumadin.

Any thoughts/feedback is appreciated......as always.

Jennie

 

[Karlynn]

Coumadin can bring attention to a problem more quickly because of the bleeding. I get very annoyed when I hear doctors attribute bleeding to an INR that's in range or below range. Bleeding is not going to just start spontaneously for no reason other than they are on Coumadin. If your Dad was not on Coumadin, I'm betting he still would have had these issues. 2.0 isn't high. I hope the doctors are taking care of these issues and finding out the causes, rather than just chalking it up to Coumadin. Even if his INR was 4.0, I would still say that the bleeding was a result of something else that just started bleeding earlier due to a high INR. But at 2.0 - he's bleeding because he has a few problems that need to be addressed.

 

[Blanche]

My husband has had bleeding from his ear, bleeding from his mouth, bleeding from his rectum, bleeding from his esophagus, and the latest, bleeding in his eyes, nose, and face. He was hospitalized for 2 of these bleeding events.

But, and this is the big BUT, with or without Coumadin, he would have bled. Coumadin does not cause bleeding when the INR is in range or slightly higher. Coumadin does increase the level of bleeding.

Please know, my husband was never in danger from these bleeds. Please also know, the only danger he was in is the same danger your father might face and that is incompetent doctors who practice by myth and not by evidenced based medicine.

What I fear the most the incidence of stroke when the INR is less that 2.0.
Happened to my husband 3 times. One stroke was minor (TIA), the second was moderate, and the third one was major. All strokes happened when his INR was under 2.0.

We sometimes say here, "You can replace blood cells, but you can't replace brain cells.

Blanche

 

[geebee]

It has been my experience that coumadin does not usually cause bleeding if your INR is in range; it simply delays the time the blood takes to clot. If you have something happen that would cause bleeding, you are going to bleed, on or off coumadin. You may bleed longer or possibly a little more while on coumadin but spontaneous bleeding is very rare.

There are, of course, always exceptions and I may just not have had experience with coumadin causing bleeding. I just don't think it happens all that often when in range.

It sounds like your father might be a bit stubborn in his worries. It may be that only time will help his fears. Technically he is in range at 2.0 but I am never happy at the low end of my range. I have had way too many experiences with TIAs to take any chances.

 

[Jiddo]

Thanks again for your feedback and personal experiences. This is helpful. I spoke with the pharmacist a few minutes ago and she agreed to increase my dad's dose from 95 mg to 100 mg for the week and re-test next Wed. I'll keep you posted of his results. Jennie

 

[Jiddo]

oh, btw......I used the old saying, "I would rather my dad replace blood cells than brain cells," which stumped her a bit....but then she said she doesn't want my dad to have a bleeding stroke. What does that mean exactly?

 

[Lynlw]

oh, btw......I used the old saying, "I would rather my dad replace blood cells than brain cells," which stumped her a bit....but then she said she doesn't want my dad to have a bleeding stroke. What does that mean exactly?

A bleeding stroke is one caused by bleeding into the brain.

 

[Rich]

Jennie,
You are doing an amazing job for your dad.
I don't know either what may have caused some of his bleeding, but I doubt it was the Coumadin, that may have just made it last a little longer.
Personally I,m glad my cardiologist prefers a range of 2.5 to 3.5 for a mechanical aortic valve. I'v always felt a range of 2-3 was too low, because when you are low it may well be below 2.0 which I consider dangerous. When I'm low it usually is still above 2.0.
Good luck and keep up the great work,
Rich

 

[Ross]

I think you should have went with 102.5 myself. 5mg at his dose is nothing.

 

[Karlynn]

oh, btw......I used the old saying, "I would rather my dad replace blood cells than brain cells," which stumped her a bit....but then she said she doesn't want my dad to have a bleeding stroke. What does that mean exactly?

I just kind of shook my head. This was her way of saying "Oh yah, says YOU!" If she knows her medicine, she knows that your Dad isn't anywhere near the danger zone of a bleeding stroke. He'd have to have an outrageously high INR. We often say 5 is the boarder for what's considered dangerous, but in my opinion that's being very conservative for most people. If your Dad is going to have a bleeding stroke below 5, then something is going on with the vessels in his brain and he'd bleed almost as easily at 2 as he would at 3.

Please don't throw worry of a bleeding stroke in the mix. She was just saying this because she wanted to scare you and put you in your place. I think she's operating under the impression that Coumadin is dangerous at any level of INR, so it's better to keep it as low as possible. This is a dangerous thought process and will have you playing this dose changing game forever.

Hang in there. Try to get your Dad to agree to changing managers.

 

[Ross]

INR of 10 or more is considered dangerous.

 

[Jiddo]

So, I am going to look into another local anti-coagulation clinic for my dad. There is another local Kaiser clinic that another vr.com member recommended that I am going to check out.

I also e-mailed my dad's doc to see if he is open to increasing my dad's INR range. I explained that my dad has been below his target range 38% of the time over the last 13 tests and at 2.0 or below on approx. 65% of the tests. I explained that I was worried about a clot based on these stats and told him that the pharmacists are hesitant about increasing his dose when he is at the low end of his range. Hopefully he will accomodate this request.

Rachel, I'm going to keep on top of my dad and make sure he is educated. Based on this last INR reading situtation, I think he has gained a little more trust in my knowledge. I recommended last time that he increase his dose. He said he wanted to do what the pharmacist said and if the result came back low (which it obviously did) then he would increase it. I gave my dad the "I told you so" speech and explained that if he would have increased his dose last time, he would most likely be in range this time. I think it's just going to take more time.......<Deep sigh>

Thanks again!
Jennie

 

[Karlynn]

God bless you Jennie! You have learned so much. What a great advocate your are!

 

[Ross]

So, I am going to look into another local anti-coagulation clinic for my dad. There is another local Kaiser clinic that another vr.com member recommended that I am going to check out.

I also e-mailed my dad's doc to see if he is open to increasing my dad's INR range. I explained that my dad has been below his target range 38% of the time over the last 13 tests and at 2.0 or below on approx. 65% of the tests. I explained that I was worried about a clot based on these stats and told him that the pharmacists are hesitant about increasing his dose when he is at the low end of his range. Hopefully he will accomodate this request.

Rachel, I'm going to keep on top of my dad and make sure he is educated. Based on this last INR reading situtation, I think he has gained a little more trust in my knowledge. I recommended last time that he increase his dose. He said he wanted to do what the pharmacist said and if the result came back low (which it obviously did) then he would increase it. I gave my dad the "I told you so" speech and explained that if he would have increased his dose last time, he would most likely be in range this time. I think it's just going to take more time.......<Deep sigh>

Thanks again!
Jennie

I said it before and I'll say it again, Jennie you've been right for a long time now. I wish it weren't such an issue for Dad and Mom and trust you. They will in time and your certainly going to gain the respect of his physicians with your new understanding for the drug. It something they've got to contend with. Unfortunately, you do too.

 

[Blanche]

Jennie:
You go, Woman!!! I admire your continuing to explore options.

Rachel's suggestion about collecting articles and materials from the medical organizations and authorities is an excellent one. I'm leaving some links to a board called "Clot Care." Our resident expert, Al Lodwick once said that this site was one of the best sources of professional information about anticoagulation. It is a vast site and could take days to get through the whole thing. It is also searchable, which is a nice feature.

http://www.clotcare.com/clotcare/ptinr.aspx
http://www.clotcare.com/clotcare/weblinks.aspx
http://www.clotcare.com/clotcare/anticoagulationguidelines.aspx

The idea of getting dad's doctor actively on-board is a good one. But, I think what you want to do is get the doctor to increase Dad's Coumadin dose. Dad's target range of 2.0 to 3.0 is right where it should be, according to the American Heart Association's publications.

Because there are so many variables that affect the INR, patients are given both an INR Target and an INR range. I guess you could say that the best case would be the INR Target which is the mid-point. My range and target INRs should be the same as your Dad's, namely Target = 2.5, Range = 2.0 -3.0.

Hope all of this helps. If you want any other materials, let me know.

Regrds,
Blanche

 

[Jiddo]

Hi All.

Just an update. This is the e-mail response I rec'd from my dad's PCP:

"Based on discussion with Dr Heller (dad's cardiologist) , your dad's goal for INR is now 2.5-3.5, this is appropriate for persons with mechanical heart valves, although more often used as the goal when that valve replaces the mitral valve. There is not complete agreement about whether the higher goal is needed for the mechanical aortic valve, but it is acceptable.
Please be aware that the higher goal does increase the risk for unintended bleeding. This can be minor for example bruising of the skin, or on rare occasions major bleeding issues. That is the natural side effect of higher coumadin doses."

So, then I called the clinic back and based on the new range, they suggested an increase from 95 mg to 102.5 mg for the week, which is a little less than an 8% increase.

My goal is really to get my dad to a target goal of 2.5. This will be the middle of his old range and the bottom of the new range. This gives the pharmacists a little bit of wiggle room to work with.

Rachel, I didn't take what you said personally at all. I just know that what I am doing for my dad needs to be done. I also know that if I were the one needing help/guidance, he would do the same for me.

Thanks to all for your input and support. Cross your fingers that my dad's next INR reading is close to his target goal because I want him to feel comfortable eating a nice big Thanksgiving dinner! We all have a lot to be thankful for this year.

Jennie

 

[Jiddo]

Hi All.

Just a quick update to let you know my dad got his INR taken today and the result came back at 2.4. This is with him taking 102.5 mg for the week. Now that his new range is between 2.5-3.5, the pharmacist wanted to increase his dose by 2.4% to 105 mg for the week. Initally I didn't want to change it because he was close to the middle of his old range but surprisingly my dad went with the recommendation. This means he will take 15 mg or 3 pills daily for the week. I think he just likes the idea of taking the same number of pills everyday. Even with this increase, I don't think his INR will increase past 3.0. So, I just wanted to share the news since you have all been involved in his dosing. I'll continue to keep you posted.

Thanks again.
Jennie

 

[Jiddo]

BTW, my sis approached my dad's PCP again about home testing based on some info that another local vr.com shared. The PCP declined the request again. Here is what he said:

"Thank you for your email. I recall our discussion. It is not part of the standard of care to use a home test device, although there clearly are providers who choose to do so. I diligently try to stick to the standard of care and thus I will not be able to accomodate your father in this matter. There may be other primary care providers that may choose differently. I hope you can understand my position."

So, I think my sis is going to try and convince my dad's cardiologist and/or surgeon to prescribe the home test unit. Cross your fingers.....

Thanks. - - Jennie

 

[Ross]

BTW, my sis approached my dad's PCP again about home testing based on some info that another local vr.com shared. The PCP declined the request again. Here is what he said:

"Thank you for your email. I recall our discussion. It is not part of the standard of care to use a home test device, although there clearly are providers who choose to do so. I diligently try to stick to the standard of care and thus I will not be able to accomodate your father in this matter. There may be other primary care providers that may choose differently. I hope you can understand my position."

So, I think my sis is going to try and convince my dad's cardiologist and/or surgeon to prescribe the home test unit. Cross your fingers.....

Thanks. - - Jennie

Ask this Doctor if they'd deny a diabetic a glucose testing meter and home testing. What I see is a physician who refuses to try to learn new things.

 

[Ross]

Hi All.

Just a quick update to let you know my dad got his INR taken today and the result came back at 2.4. This is with him taking 102.5 mg for the week. Now that his new range is between 2.5-3.5, the pharmacist wanted to increase his dose by 2.4% to 105 mg for the week. Initally I didn't want to change it because he was close to the middle of his old range but surprisingly my dad went with the recommendation. This means he will take 15 mg or 3 pills daily for the week. I think he just likes the idea of taking the same number of pills everyday. Even with this increase, I don't think his INR will increase past 3.0. So, I just wanted to share the news since you have all been involved in his dosing. I'll continue to keep you posted.

Thanks again.
Jennie

It's reasonable. I would have waited for one more test, but the slight tweak should definately put it in range.