((((Deana)))))))))
((((Deana)))))))))
I am sending prayers and positive thoughts your way.
((((Deana)))))))))
I am sending prayers and positive thoughts your way.
Help Support Valve Replacement Forums:
ALCapshaw2
Well-known member
By all means, get copies of ALL of your Hospital Records, especially your INR at discharge. Everyone I know who has received a mechanical valve is NOT allowed to leave the hospital until their INR is theraputic (typically 2.0 for an Aortic Valve, 2.5 for a Mitral Valve).
I've NEVER heard of anyone taking ONLY ONE mg of Coumadin. Almost surely, THAT is why you had a stroke. I expect the Doctors will be circling their wagons on this issue. You may want to get a second opinion from a knowledgable Cardiologist and anti-coagulation manager NOT affiliated with that hospital or your Surgeon.
Who is managing your Coumadin / INR now?
FWIW, the manufacturers of Coumadin like(d) to claim their product had less variation than the generics, UNTIL they LOST a lawsuit over that claim. One reason was that one of the generics actually had less variation than Coumadin! I had NO PROBLEM changing from Coumadin to Generic Warfarin (made by TARO) when my co-pay for Name Brand meds went sky high and insurance refused to pay more than the cost of the generic.
'AL Capshaw'
I've NEVER heard of anyone taking ONLY ONE mg of Coumadin. Almost surely, THAT is why you had a stroke. I expect the Doctors will be circling their wagons on this issue. You may want to get a second opinion from a knowledgable Cardiologist and anti-coagulation manager NOT affiliated with that hospital or your Surgeon.
Who is managing your Coumadin / INR now?
FWIW, the manufacturers of Coumadin like(d) to claim their product had less variation than the generics, UNTIL they LOST a lawsuit over that claim. One reason was that one of the generics actually had less variation than Coumadin! I had NO PROBLEM changing from Coumadin to Generic Warfarin (made by TARO) when my co-pay for Name Brand meds went sky high and insurance refused to pay more than the cost of the generic.
'AL Capshaw'
ALCapshaw2 said:
I hate to be a nudge here, but was wonderring, I believe you were at your 10 day home doctors appt when they found the .7 and gave you the shot and sent you home, was that the first INR that was done since you were discharged? if not do you remeber what the other results were?
Lyn
L
lopearredlady
Deanna,
It was so good to hear from you. You have such a beautiful attitude and my prayers are with you each day.
You are so strong,
Terry
It was so good to hear from you. You have such a beautiful attitude and my prayers are with you each day.
You are so strong,
Terry
K
Karlynn
Deana, I agree with Lyn and Al. Since your stroke was so soon after your surgery, I'm questioning whether your INR was ever in theraputic range. With an INR of .7 your body was acting like it wasn't even on warfarin. Even a little dose of warfarin should have a tiny effect on the INR. An INR of 1.0 is considered normal and is what people not on Coumadin will test out at. (With a possible varience.) I too think that this really needs to be looked in to. But as suggested, possibly ask your husband to do some of the leg work on this so that you are concentrating more on your recovery.
I'm most concerned now that your INR stays well into theraputic range and that who ever is managing it knows what they are doing.
I'm most concerned now that your INR stays well into theraputic range and that who ever is managing it knows what they are doing.
D
denobobeno
Lynn and everyone else,
I'll request my records, I know ya'll are right. No, I didn't have my INR checked until my 10 day checkup. I wasn't told to and so now I wished I'd told ya'll so you could have told me!!
My primary care doc is watching my INR. He is the one that told me all my symptoms were my heart, whereas my Cardiologist didn't think so...my Surgeon wanted me in surgery the next week!
So, I trust my primary and he has even got home health coming to me. They are using a little machine to check it. Are some machines more accurate than others? I'm still having trouble getting my INR consistent. I've been on 8mg all week and I'm still only at 2.5 as of this morning.
Thankyou for your help!
xxooDeana
I'll request my records, I know ya'll are right. No, I didn't have my INR checked until my 10 day checkup. I wasn't told to and so now I wished I'd told ya'll so you could have told me!!
My primary care doc is watching my INR. He is the one that told me all my symptoms were my heart, whereas my Cardiologist didn't think so...my Surgeon wanted me in surgery the next week!
So, I trust my primary and he has even got home health coming to me. They are using a little machine to check it. Are some machines more accurate than others? I'm still having trouble getting my INR consistent. I've been on 8mg all week and I'm still only at 2.5 as of this morning.
Thankyou for your help!
xxooDeana
R
RandyL
nothing wrong with 2.5 your at least in range now
C
Computec
Deana...
2.5 is where you want to be. The 8 mg a day that you're taking now seems to be keeping you in range but you still have to pay close attention to it.
It's great that the PCP is sending home care to you for checking your INR. I suspect that's because the doctors that were negligent before don't want you to have any more probelms.
Did I say "negligent"? If I understand your situation correctly, Deana, someone wasn't paying attention when they should have been. Sending you home after your surgery with a prescription to take 1mg a day of warfarin would be "negligent". Not checking your INR for 10 days following your release from the hospital would be "negligent". Allowing you to run out the door with a shot of Lovenox and some baby aspirin after verifying that your INR was .7 would be very "negligent". I have to say , Deana, that your doctors scare me.
Yes... I wish you'd explained to us what was going on before but, in truth, I don't think that anyone here could imagine you being treated the way that you were. You didn't know what was important and we didn't know what was missing from your care. In all honesty, Deana, you have been serious hurt by this and it could have killed you. Sure, it could have been a lot worse so for that we're grateful. We wouldn't want to lose you, Lady. We're family here.
Jerry
2.5 is where you want to be. The 8 mg a day that you're taking now seems to be keeping you in range but you still have to pay close attention to it.
It's great that the PCP is sending home care to you for checking your INR. I suspect that's because the doctors that were negligent before don't want you to have any more probelms.
Did I say "negligent"? If I understand your situation correctly, Deana, someone wasn't paying attention when they should have been. Sending you home after your surgery with a prescription to take 1mg a day of warfarin would be "negligent". Not checking your INR for 10 days following your release from the hospital would be "negligent". Allowing you to run out the door with a shot of Lovenox and some baby aspirin after verifying that your INR was .7 would be very "negligent". I have to say , Deana, that your doctors scare me.
Yes... I wish you'd explained to us what was going on before but, in truth, I don't think that anyone here could imagine you being treated the way that you were. You didn't know what was important and we didn't know what was missing from your care. In all honesty, Deana, you have been serious hurt by this and it could have killed you. Sure, it could have been a lot worse so for that we're grateful. We wouldn't want to lose you, Lady. We're family here.
Jerry
som glad to have you back
som glad to have you back
hi deanna,
that was quite an experience, the way you described it! i'm so sorry you had to go through that (i agree with the others who feel that someone wasn't on top of things).
we're just glad that you are home and your inr is within range. you have such a wonderful attitude and kindness, i'm sure you will get better and stronger sooner than you think.
so glad to have you back with us.
be well, sylvia
som glad to have you back
hi deanna,
that was quite an experience, the way you described it! i'm so sorry you had to go through that (i agree with the others who feel that someone wasn't on top of things).
we're just glad that you are home and your inr is within range. you have such a wonderful attitude and kindness, i'm sure you will get better and stronger sooner than you think.
so glad to have you back with us.
be well, sylvia
D
denobobeno
Randy, I like your pic. I love the ocean and fishing!
Computec and others,
I'm very frustrated like you with some of the decisions my Surgeon made and a little confused why he did some of the things he did. I'd like to ask him why. I may have the opportunity after he gets my echo tape. My son mailed it yesterday. I think he wants to see me soon so I'll probably travel to Dallas soon.
I'm amazingly feeling so much better everyday. My home health can't believe my progress. I am able to walk periods of time without the aid of my walker and even floated in the pool a little yesterday with my daughter. It felt really nice to be outside. Even if it was only 30 minutes.
Yesterday I went and had my hair um...turned back to my
natural color...
. It felt good to be out. I'm starting to feel human again and I'm so thankful.
My daughter starts school Monday and so I'll be losing my chauffer. I'm kinda worried about that....don't want to be stranded all day!! But, I don't want to call people..you know?
I am really encouraged at how fast I'm healing. God has been so good.
Thanks and blessings to all,
Deana
Computec and others,
I'm very frustrated like you with some of the decisions my Surgeon made and a little confused why he did some of the things he did. I'd like to ask him why. I may have the opportunity after he gets my echo tape. My son mailed it yesterday. I think he wants to see me soon so I'll probably travel to Dallas soon.
I'm amazingly feeling so much better everyday. My home health can't believe my progress. I am able to walk periods of time without the aid of my walker and even floated in the pool a little yesterday with my daughter. It felt really nice to be outside. Even if it was only 30 minutes.
Yesterday I went and had my hair um...turned back to my
natural color...
. It felt good to be out. I'm starting to feel human again and I'm so thankful. My daughter starts school Monday and so I'll be losing my chauffer. I'm kinda worried about that....don't want to be stranded all day!! But, I don't want to call people..you know?
I am really encouraged at how fast I'm healing. God has been so good.
Thanks and blessings to all,
Deana
I'm am so happy you are feeling better every day, we were all so worried about you (and I STILLL am waiting to see pics of the crosses you make, i love crosses) but here I go w/ another question, i was wonderring what your cardiologist has had to say about any of this, as far as i know cardiologist make most of the medicine type descions and for the most part the surgeons operate and except for surgical complications, ie bleeding ect the cardiologists make most of the decisions. Was your own cardiologist following you where you had surgery or did you have someone on their staff incharge while you were in the hospital?
I'm sorry I keep asking all these questions, but honestly it kind of boggles my mind, that neither me or any of my family take coumaden, yet i am starting to get the feeling "I" a nobody understand coumaden more than alot of doctors in this country that are making life and death decisions about it, and THAT really scares me, Lyn
ps about when your daughter goes to school, please don't give it a second thought about being a bother and calling people, honestly from all my years dealing w/ medical problems and knowing other families going thru thingsI can honestly say that most people good friends and even neighbors you don't talk to too much REALLY want to help and just don't know how, they probaly would be happy if you called and asked for a ride to the doctor oreven the store or to pick something up for you.
I'm sorry I keep asking all these questions, but honestly it kind of boggles my mind, that neither me or any of my family take coumaden, yet i am starting to get the feeling "I" a nobody understand coumaden more than alot of doctors in this country that are making life and death decisions about it, and THAT really scares me, Lyn
ps about when your daughter goes to school, please don't give it a second thought about being a bother and calling people, honestly from all my years dealing w/ medical problems and knowing other families going thru thingsI can honestly say that most people good friends and even neighbors you don't talk to too much REALLY want to help and just don't know how, they probaly would be happy if you called and asked for a ride to the doctor oreven the store or to pick something up for you.
Deana
Deana
I'm glad you are home and doing so well.....Like others, I'm surprised that you were not followed up after you returned home for your INR range...My surgeon's nurse called me everyday for 3 weeks..Making sure I was having my blood drawn for my INR range...I went to a local clinic..(even went in my housecoat and slippers the 3rd day I was home) Small town and I could have cared less. They drew my blood. sent it courier down to Gainesville (30 miles away)and she would call that afternoon..Telling me what doseage to take, ect...I did that for 3 weeks..I had not found VR.Com and had no idea what my range was?..But, she kelp tabs on it..I just did what she told me to do.....Then..I found VR.Com and learned about hometesting..At my Cardio's visit..I asked him to approve one for me..he did..and the rest is history. Talked to QAS..they called my Insurance, was approved..Been hometesting on that same little machine for over 4 years now. I call my Cardio's nurse every 4 weeks with my range...Have never had to have my dosage changed from 5 mg. a day..I have never been on the low side..but sometimes..maybe a tad high..A V8 juice or some coleslaw helps lower it without my changing my dose.I test every 3 weeks..but only call her every 4 weeks...She is busy and I hate to leave it..for I know what she will say..(calls me back that afternoon) Keep on doing what you are doing. She also writes my script for my warfarin...I get a 6 month refill..but, most of their patients only get a 3 month refill. she says, they are elderly..do not hometest..and afraid they will be out of range..If they do not come in for their test at their office.....Have you looked into hometesting..Makes life simple.. .......Take one day at a time..do not overdo it...takes a long time to get back where you were before..Glad you are better. Bonnie
Deana
I'm glad you are home and doing so well.....Like others, I'm surprised that you were not followed up after you returned home for your INR range...My surgeon's nurse called me everyday for 3 weeks..Making sure I was having my blood drawn for my INR range...I went to a local clinic..(even went in my housecoat and slippers the 3rd day I was home)
Small town and I could have cared less. They drew my blood. sent it courier down to Gainesville (30 miles away)and she would call that afternoon..Telling me what doseage to take, ect...I did that for 3 weeks..I had not found VR.Com and had no idea what my range was?..But, she kelp tabs on it..I just did what she told me to do.....Then..I found VR.Com and learned about hometesting..At my Cardio's visit..I asked him to approve one for me..he did..and the rest is history. Talked to QAS..they called my Insurance, was approved..Been hometesting on that same little machine for over 4 years now. I call my Cardio's nurse every 4 weeks with my range...Have never had to have my dosage changed from 5 mg. a day..I have never been on the low side..but sometimes..maybe a tad high..A V8 juice or some coleslaw helps lower it without my changing my dose.I test every 3 weeks..but only call her every 4 weeks...She is busy and I hate to leave it..for I know what she will say..(calls me back that afternoon) Keep on doing what you are doing. She also writes my script for my warfarin...I get a 6 month refill..but, most of their patients only get a 3 month refill. she says, they are elderly..do not hometest..and afraid they will be out of range..If they do not come in for their test at their office.....Have you looked into hometesting..Makes life simple.. .......Take one day at a time..do not overdo it...takes a long time to get back where you were before..Glad you are better. Bonnie
musician2k
Beloved Member
Deana: So glad you're finally starting to feel better. I'm 4 weeks+ post-op and a few days ago finally began to feel some "normalcy"; though I think it's normal to not feel totally normal for many weeks yet. I know exactly how you feel about your situation there with your INR and feeling the surgeon/doctor might not have quite done the thorough job they're paid to do. I really appreciated my surgeon, but have some questions for him as well, too. Perhaps this just goes with the territory. Keep on keepin' on and getting better! Take care of yourself....
-Chris
-Chris
joanne6
Well-known member
Welcome back
Welcome back
Just wanted to stop by and welcome you back. As a nurse who works with patients on Coumadin all day, every day, I have to add my 2 cents. You have heard it all by now. There may be something we don't know but we do know the outcome. You had a stroke and you were not anticoagulated. Unless you ate a whole lot of dark green leafy veggies, I don't get it either.
Concentrate on getting well. I agree to let your husband do some of the legwork, like getting your records. Please do that soon before things "get lost"
Take it easy but also work on your therapy.
Joanne
Welcome back
Just wanted to stop by and welcome you back. As a nurse who works with patients on Coumadin all day, every day, I have to add my 2 cents. You have heard it all by now. There may be something we don't know but we do know the outcome. You had a stroke and you were not anticoagulated. Unless you ate a whole lot of dark green leafy veggies, I don't get it either.
Concentrate on getting well. I agree to let your husband do some of the legwork, like getting your records. Please do that soon before things "get lost"
Take it easy but also work on your therapy.
Joanne
D
denobobeno
Here's the cross
Here's the cross
Lynn, I didn't know you wanted to see my crosses. So here is a sample of one. My Cardiologist is in my hometown and had nothing to do with anything at first. I didn't think I was supposed to call him until maybe my second checkup with my Surgeon. I wasn't told otherwise. I think I will ask him his take on everything...but, I'm going to switch Cardiologist..He didn't take me seriously about my symptoms and thought I could go maybe 6-12 months before I needed surgery and I found out otherwise. My husband doesn't like him because he is a known womanizer..and now he doesn't value his expertise much either...after two Surgeons told us the same thing about the surgery needing to be done soon.
I'm so glad to hear that Bonnie has such an easy time with her Coumadin. I'm going to try to get a home tester.
Thanks for the constant encouragement from ya'll.
I ate some snow peas today (raw). Now I'm worried it might affect my INR, I also drank a can of V8, I just wasn't thinking! Do you think that will affect my INR much?
xxooDeana
Here's the cross
Lynn, I didn't know you wanted to see my crosses. So here is a sample of one.
My Cardiologist is in my hometown and had nothing to do with anything at first. I didn't think I was supposed to call him until maybe my second checkup with my Surgeon. I wasn't told otherwise. I think I will ask him his take on everything...but, I'm going to switch Cardiologist..He didn't take me seriously about my symptoms and thought I could go maybe 6-12 months before I needed surgery and I found out otherwise. My husband doesn't like him because he is a known womanizer..and now he doesn't value his expertise much either...after two Surgeons told us the same thing about the surgery needing to be done soon.I'm so glad to hear that Bonnie has such an easy time with her Coumadin. I'm going to try to get a home tester.
Thanks for the constant encouragement from ya'll.
I ate some snow peas today (raw). Now I'm worried it might affect my INR, I also drank a can of V8, I just wasn't thinking!
Do you think that will affect my INR much? xxooDeana
K
Karlynn
Deana, with your experience right out of the gate I can certainly understand you being super sensitive to what you eat and drink. But a few snow peas aren't going to do much. The can of V8 could lower it some, but not hugely. Hopefully you are well in range right now, so it shouldn't matter a lot. Here's a post that a few of us who are long-time Coumadin users put together. Give it a read. http://valvereplacement.com/forums/showthread.php?t=17116
Like I said, I know you are very afraid of doing anything to make your INR too low. Even though you haven't seen your records yet, it's my guess that your INR was most likely never in range after surgery, or if it was, it wasn't for long and then they weren't checking you as they should to keep it there. 1mg of Coumadin a day isn't going to do much of anything to anyone. Now you are on a dose that will do something for you.
I'm so glad to read that you are doing a super job of recovery from the stroke.
Like I said, I know you are very afraid of doing anything to make your INR too low. Even though you haven't seen your records yet, it's my guess that your INR was most likely never in range after surgery, or if it was, it wasn't for long and then they weren't checking you as they should to keep it there. 1mg of Coumadin a day isn't going to do much of anything to anyone. Now you are on a dose that will do something for you.
I'm so glad to read that you are doing a super job of recovery from the stroke.
denobobeno said:Lynn, I didn't know you wanted to see my crosses. So here is a sample of one.
I'm so glad to hear that Bonnie has such an easy time with her Coumadin. I'm going to try to get a home tester.
Thanks for the constant encouragement from ya'll.
I ate some snow peas today (raw). Now I'm worried it might affect my INR, I also drank a can of V8, I just wasn't thinking!
xxooDeana
Wow that is beautiful!! you are very talented,I bet it is a very relaxing thing to to to make the crosses , unless you get like me when i try to make anything and stress over each step. Don't worry about not knowing I wanted to see the pictures, it wasn't your memory, it was something I answerred to Connie when she was updating us(which please thank her againfor letting us know what was going on both w/ the surgery and the stroke).
I don't know how it works w/ everyone because I tend to be pretty anal when it comes to Justin's heart, and like more docs to know it well, BUT Justin has is own ped card that has been his doctor for the most part from the time he was one day old. but when Justin had surgery where his card wasn't on staff. while he was at say CHOP last year, he had his surgeon then there was a cardiologist on staff there that was Justin's cardiologist temporarily, checked on his every day, we ran things by him ect since you rarely see the surgeon the staff cardiologist wrote all of Justin's discharge meds and instrustions and was having all Justin's records sent to his main cardiologist. Any concerns we had that were surgery related we call the card that was following him at CHOP, for example Justin started getting signs of fluid a few days after he got home, the ped cardilogist at CHOP took care of that. then at the 6 week check up Justin saw the chop cardiologist who signed off on him until /if Justin has another surgery there. We also made a 6 week check up appt w/ HIS reg cardiologist, just so he would have a baseline of how Justin's heart was after this surgery.
Anyway now i am wonderring how others do it when you don't have surgery at the hospital your cardiologist proactices in. sounds like a good thing for a poll lol Lyn
D
denobobeno
Thankyou for the compliment. I really love making them. I use vintage jewelry. Some clients have jewelry that was their grandmothers or mothers and they only have some odd earrings or broken pieces and they don't want to throw it away, so, I'll make them a cross to remember them and also the fact that they are with God because of the cross gives it double meaning.
I hope all is going well with you. I'm doing pretty well, I couldn't get to sleep Sat night until 5:30 in the morning. I'm having trouble with sleep. My Doc gave me some Ambien so I'll see how that works.
Thanks, kinda tired...so I'm outa here,
xxooDeana
I hope all is going well with you. I'm doing pretty well, I couldn't get to sleep Sat night until 5:30 in the morning. I'm having trouble with sleep. My Doc gave me some Ambien so I'll see how that works.
Thanks, kinda tired...so I'm outa here,
xxooDeana
perkicar
Well-known member
denobobeno said:
I'm still reading through this thread, but how often is he checking it? It takes about 4 days for a dose change to show up in your INR. I know when they started me on oral coumadin in the hospital I was started high and then backed down to I think 5 mg a day. My first check post discharge was 1.9, and that was the day after I got out of the hospital. In fact, I had to stay in the hospital an extra day or two to get me up to 2.0. I now take 7.5 mg 5 days a week and 5 mg 2 days a week. I've had two wacky episodes where my INR went really high, once after a zpack dosage and another, we don't know why I went so high but I was up to 5.4. I went off for a couple of days when I had a colonoscopy last December and looking back, I was not a good advocate for myself. The guy going my scope didn't even check my INR that morning--what if I hadn't gone off my coumadin and I was running at my usual level. I know better now than to let other people manage it for me. At least I have this forum for a reality check when I'm puzzled by what they tell me.
Glad to hear you're doing better, and sorry you had to have such a bad time!
D
denobobeno
Perkicar,
Hi, they are now checking it MWF. I'm on 8 mg and at a perfect 2.7. I'm feeling more like my old self now and hope to start PT next week. I'm ready to start if they don't hurry I may go crazy!!
Everything is under control now I hope. I hope all is well with everyone else.
xxooDeana
Hi, they are now checking it MWF. I'm on 8 mg and at a perfect 2.7. I'm feeling more like my old self now and hope to start PT next week. I'm ready to start if they don't hurry I may go crazy!!
Everything is under control now I hope. I hope all is well with everyone else.
xxooDeana
