Need Advice I am Confused and fusterated :(

[Shirley Dickey]

Hello , I had MVR (mech) and a double bypass on 06/11(11 hour surgery did not handle it to well) I felt great the first few months that I was home and now I have not felt very good since 10/11..Thought I would have felt like a new woman but I dont
After alot of blood work and many echo and even more dr appts it has been found that my body is not liking the warfarin.
First it was constant nosebleeds that have since been fixed and then it was menustrating again after having an endomitrial ablation for endomitriosis which has since came back. and now I am having intestinal bleeding that has caused me to very anemic.I have also had very swollen feet/legs for the last6 months that lasix doesnt seem to be helping.
The dr have tried many types of iron to help with the anemia but it is affecting my INR went from 3.2-3.0-2.0 now I am at 1.6 so the cardiologist said stop taking the iron and increased the warfarin to 10mg a day testing 2 times a week..I feel so tired and no energy all the time.
My hemoglobin is 8.9 hemotacrit is 29. I just want to understand what is going on fix it and feel better ....
Will be having a ct of abdomin and possibly a colonoscpoy next week sometime( if cardiologist approves and depending on what ct shows).
Intestines seem to bleed when my INR is within range 2.5-3.5 which is where I need to be.Have not had bleeding since INR has went down to 2.0 or lower.. My pcp said could be diverticulitius the Intestinal dr said could be but he doubts it cause it came back as soon as antibiotics was finished and that it could be polyp/tumor or something else I forgot what he said I was freaked out after he said I had to stop warfarin to have the colonoscopy done. :eek2:..That just scares me to death..dont want to have a stroke.
I have had a TIA before to due to a bloodclot and extremly low potassium after a heart cath.didnt like they way I felt.
I have discussed all these bleeding issues with the cardio and he said depending on what intestinal dr says/does I may have to have the mechanical valve taken out and a tisssue valve put in :mad2:..just so that I can come off of the warfarin because stopping it right now is not an option.After the last heart surgery I had I am scared to even think of that:frown2::frown2:

Sorry this is so long , but I need some moral support and advice...
Thanks for taking the time to read and respond if you have any suggestions I am open to hear them..
May god bless

 

[AgilityDog]

Warfarin causing other bleeding is usually an indicator of another problem: example, my dad was on warfarin for a-fib, began intestinal bleeding, turned out to be metastatic renal cell carcinoma of the duodenum. NOT that that's going to be your issue. Yes, colonoscopy is indicated. Be sure you get instructions on proper bridging before your colonoscopy - you do need to come off the warfarin for that because you have indications that they may need to take samples. (I'm having a routine screening colonoscopy next month, and do NOT have to come off the warfarin and bridge, because I have no issues and have a smart GI).

Proper dosage for bridging for a mechanical valve is 1 mg of lovenox per kg of body weight every 12 hours, stopping about 16 hours before surgery, but check with your cardio. Lots of us have to bridge for one surgery or another. It's scary, but it's ok. This is important to check out.

 

[kfay]

Shirley, I'm very sorry to hear about all of your problems. I can only imagine how frustrating and exhausting it must be to have all of this going on. You aren't the first person to have issues with warfarin (yes, there have been others!), and I'm sure you won't be the last. It's unfortunate that we can't know these things until after a decision has already been made that would be affected by having that knowledge. I found out after a couple of ablations that I have a sensitivity to heparin and luvenox and although I would not necessarily have to use those drugs if I were on warfarin, it does make me thankful that I have a tissue valve and won't have a need to have to deal with that problem. Are you taking any other meds that may have an effect on your anti-coag, such as aspirin or plavix? If so, I wonder if stopping one of those might not help.

What happened with your first tissue valve that it only lasted 2 years? Even at your younger age, that is unusually fast. I really hope that they get to the bottom of what is going on for you without having to have yet another surgery. There have been a lot of members on here who have had a colonoscopy with a mechanical valve without any issues, so hopefully they will be along to offer you reassurance.


Kim

 

[Shirley Dickey]

The OHS i had in 09 was for aortic valve it was placed with a tissue valve due to having Endometriosis however when I went in to have the Mitrial valve done in 2011 it was suppose to be a repair but it all went crazy in surgery and that lead to a mechanical valve in mitrial position. I was not aware of it till I woke up the next day. due to several complications during this last surgery the thought of them going back in to take out the mechanical just dont set right with me for now but then again neithre does the internal bleeding so as I said I am very confused and annoyed

 

[dick0236]

Intestines seem to bleed when my INR is within range 2.5-3.5 which is where I need to be.Have not had bleeding since INR has went down to 2.0 or lower.. May god bless

I notice from your signature that you have a new On-x valve and I understand that this valve is being studied as needing a lower INR range.....even below 2. Have you discused the possibility of lowering your range to 2-3 and trying to stay on the low end?

I agree that it would be a "bummer" to have the mechanical valve explanted due to this.

 

[neil]

hi shirley, so sorry to hear about your problems with warfarin, hopefully something can be sorted out,

 

[Bill B]

Oral iron has no significant effect on INR or warfarin.

You are anemic. Normal Hgb and HCT for women is 12-16 and 36-46. So, you are moderately anemic. Iron deficiency occasionally develops after mechanical valve replacement due to hemolysis, but your anemia could be from other causes (blood loss) or deficiencies (folate, B12, etc.) This needs to be investigated if it hasn't been already. Your anemia isn't severe, so it may not account for all of your lack of energy, but it isn't helping and should be corrected. It appears there is some aspect of intestinal bleeding. If that can't be fixed, then the anemia will continue, and iron in some form is needed at the very least since it is lost with the blood. I would shoot for the low end of the INR range recommended for your valve. Your situation is a bit of a rock and a hard place. Hopefully you and your doctors can find a comfortable spot there that improves your condition.

 

[Superbob]

Very sorry that you are having these problems, Shirley. I am not knowledgeable on some of the issues you raise, but I know that a decline in hemoglobin and hemocrit can be very worrisome. I have had a downward trend and my doc was concerned enough to refer me to a hematologist. At this point, what we've concluded (I say "we" b/c I gave the doc a lead I found in medical study on the Web) is that my long-term use of Lisinopril may have caused this decline. Doc has taken me off that so we'll see what the numbers say this summer.

Thought I'd just mention this, 'cause you might ask your doctors if any of your meds are causing the H&H decline. Anemia has a great many possible causes so this is a long shot, but maybe worth asking about.

All best to you.

 

[Shirley Dickey]

Thanks everyone for the replies and all the advice it is greatly appericated...
I will have the test done and keep you updated on what the outcome is..
Thank You and God Bless

 

[kfay]

Shirley, If you are indeed having a problem with warfarin for whatever reason, maybe you could ask your Dr. about doing the plavix and aspirin protocol that is now part of a study for on-x. I realize you wouldn't actually be in the study, but if they will let you follow the same rules, it may be a good alternative than having to have that valve taken out and replaced with a tissue one.

K

 

[ElectLive]

While lowering INR certainly seems to make reasonable sense given the circumstances, unfortunately the On-X trials are not going to be the perfect model. The Plavix/Aspirin group is only being studied in low risk aortic valve patients, not mitral, and two prosthetic valves is also an exclusion criteria for the study as a whole. The reduced INR level group is also more pronounced for aortic rather than mitral. So while the high-risk aortic valve group is being held under 2 (1.5 to 2.0), for mitral valves, the study group is only being held to INR of 2.0 to 2.5 and is also taking aspirin.

Best wishes to you getting the anemia under control and finding the right anticoagulation balance.

 

[ElectLive]

Also, I thought this excerpt from the ACC/AHA Foundation Guide to Warfarin Therapy is a fairly good reference for some (not all) of these issues:

"The main complication of oral anticoagulant therapy is bleeding, and risk is related to the intensity of anticoagulation. Other contributing factors are the underlying clinical disorder, and concomitant administration of aspirin, nonsteroidal antiinflammatory drugs, or other drugs that impair platelet function, produce gastric erosions, and in very high doses impair synthesis of vitamin K–dependent clotting factors. The risk of major bleeding also is related to age >65 years, a history of stroke or gastrointestinal bleeding, and comorbid conditions such as renal insufficiency or anemia. These risk factors are additive; patients with 2 or 3 risk factors have a much higher incidence of warfarin-associated bleeding that those with none or one. The elderly are more prone to bleeding even after controlling for anticoagulation intensity. Bleeding that occurs at an INR of < 3.0 is frequently associated with trauma or an underlying lesion in the gastrointestinal or urinary tract...

Long-term management is challenging for patients who have experienced bleeding during warfarin anticoagulation yet require thromboembolic prophylaxis (eg, those with mechanical heart valves or high-risk patients with atrial fibrillation). If bleeding occurred when the INR was above the therapeutic range, warfarin can be resumed once bleeding has stopped and its cause corrected. For patients with mechanical prosthetic heart valves and persistent risk of bleeding during anticoagulation in the therapeutic range, a target INR of 2.0 to 2.5 seems sensible."​