Deana here

[musician2k]

Deana: I was so concerned when your sister first told us about this stroke. I'm doubly concerned because I echo what others have posted here - if what you've told us is the entire story, it certainly sounds fishy to me. I could not have heparin, and was on an argatroban IV for days in the hospital. Finally they decided to send me home, with instructions to get & take Arixtra (similiar to Lovenox, which they gave you.) This is a once-a-day shot....as I'm sure Lovenox is too. It's just used to tide you over until the Coumadin gets a bit more therapeutic.

My symptoms when I thought I was having a TIA were very similiar to yours, however. Kind of disconcerting but a head CT showed no evidence of stroke in my case. I hope & pray you'll have no further incidents of this nature! VERY glad to see you back here! Keep us posted on how you're doing

Chris
[musician2k]

 

[debster913]

Deana,
Glad to see you back, and with your determination, I'm sure you'll recover fast! You are an inspiration to me, that if you could get through this unfortunate stroke with a positive attitude, I can get through any crappy thing that comes my way.

Love, Debi (debster913)

 

[robertr]

Praying for continued recovery for you...

Praying for continued recovery for you...

So glad to see you back online Deanna!! And I hope and Pray that your condition will continue to improve... It was very encouraging to see your post today. Me and my family have been praying that you were OK - I was very concerned. Since my recovery went so smooth (8 weeks 2 days post-op) it really makes me heart-sick (truly no pun intended) when I see others on this forum suffering with issues.

We will continue to pray that your leak and stroke situation will be corrected.

Please take care of yourself!!

 

[Kathleen]

Deanna
I am happy to see you back on board. Take your time with recovery and keep exercising your mind. I also had a stroke about 4 years ago and the recovery was slow and I had no residual side effects except I can't remember things as well. Take care
Kathleen

 

[catwoman]

Friends,
Yes, I was on 1 mg a day before the stroke. One important thing I've learned...Take Coumadin and not ANY generics. The generics do not match coumadin's molecular structure and therefore are more inconsistent. I've now heard this from my Cardiologist, pharmacist, and home health care nurse. People on straight Coumadin have fewer problems and stabilize more consistantly. FYI. I'm staying on Coumadin from now on. We are having a hard time keeping my Coumadin straight right now. That's why I was told that I need to only take Coumdin. I have been on Warfin. My levels are at 2.3 right now and that's after taking 8mg a day. It had dropped from 2.7 on Friday to 1.3 on Monday. They're really watching me right now to get it all straightened out.
My Surgeon told my husband he has never had any trouble before. He said I must metabolize more quickly than others. I'm kind of hyper...I don't know?? Anyway, I'm a little disappointed in him for letting me go out the door....but, glad that I'm okay now, pretty much anyway. I'm glad to be back and I'm having a good day today with a fewer vision disturbances and fewer headaches. Tomorrow may be another day...so, if you don't hear from me you'll know why.
I'm thankful for you all,
Deana
comoputec, that was a very sweet thing to say, you made my day.

Deana:
Join us over at the Anticoagulatin forum. You'll learn a lot about Coumadin/warfarin, more than your doctors & probably your pharmacist knows. Al Lodwick, a hospital pharmacist & certified anticoagulation care provider, drops in there and we benefit from his knowledge.

 

[jwilliamsr]

I am so relieved that you are home and recovering.

...praying for continued healing, strength, and peace for you and your family.

jimmy

 

[PegB]

Yea! You're OK

Yea! You're OK

So glad to hear you're OK!!! When you started that post of "What could Possibly Go Wrong" after surgery, I was hoping you were knocking VERY hard on a piece of wood. I'm having my mitral valve repaired at the end of Sept., so it was reassuring to hear you were doing so well post op.... and then the STROKE!
Unbelievable. I know you can't really "JINK" yourself, but I'm going to try very hard to just recover day to day. Always good to keep the 'what if's' in the back of the mind though. I've been logging on here about 10X a day hoping to see an update from you. I was so relieved to see it was you posting, AND you sound great. Please take it slow and give yourself time to recover from being hit with so much at once!

You're STILL an inspiration!

 

[BDMc]

Wow That Was Some Ride!

Wow That Was Some Ride!

Deana, What a relief to have you back! Be aggressive with the doctors, and don't hesitate to get a second opinion! Glad your husband is so smart and responsive! I think you married the right guy! Do take care, and keep us posted. Brian

 

[gijanet]

Oh, Deana.............

Oh, Deana.............

what an ordeal............and what a trooper you are! I guess we were gone to Alaska during most of this. I feel bad. I didn't realize you were so close. Shoot! Harris is right across from Cook's - Katie's home away from home (our PC's there; Michigan for surgeries, but our local care is at Cook's). Listen, if you or your husband need anything else, give Marsha or me a shout. We are both close.......a lot of help now, I know!

It sounds like you are making great strides already as your sense of humor is still intact. Love the Albertson's accusations! Just what every overinflated ego needs now and then............. a little humbling.

And just my two cents, but I don't think the generic warfarin was the problem! If they only had you on 1 mg of warfarin, that is nothing, nothing!!! - not for an adult woman! The milligram dosage is the same amount, regardless of generic or brand. Katie's dose alternates every other day between 2.5 mgs and 3 mgs, and she is five years old. Notice they have you on 8 milligrams now - huge jump - and you are still not staying in a safe range! Somebody screwed up big time if they released you on only 1 mg of warfarin/coumadin a day. Anyone who is familiar with warfarin at all should have realized that dosage could not possibly have been correct. This is definitely not aimed at you, but at whoever was "managing" your anticoagulation in the hospital. They are supposed to be the experts! Again, just my two cents, but I think you and your husband need to be asking some serious questions - even if it is through your lawyer!!! I am not at all a proponent of frivolous law suits, but it sounds to me like "some people" are trying to cover their asses by blaming your stroke on the generic anticoagulant warfarin when it is obvious you were severely underdosed, regardless of whether it was the namebrand or generic. Again, I hate to sound redundant, but someone in the medical field who works with coumadin on a regular basis should have known that there is no way 1 mg could be an adequate dose for an adult. BTW, UofMichigan uses warfarin,and we were sent home on that. Our PC insists on coumadin, but we saw no difference between the two.

Sending hugs and you will be in our prayers. Keep us posted so we can cheer on your progress. J.

 

[gijanet]

P.s. Valve leakage

P.s. Valve leakage

I'm no expert, but I know I have read on here several times that it is not at all unusual for there to be some valve leakage following surgery, but can/should improve. I'll see if I can find a few of those posts foryou. Hugs. J.

Found one from Melissa in response to a qustion I had asked:

Janet,

What a brave daughter and mother! You have certainly been through a lot together. While the speed at which your daughter's repair is deteriorating is of concern, there are repairs that can show signs of improvement after a few months. I have been told that regurgitation and leaks can occur around suture holes the first few months, and gradually, as the heart heals, scar tissue forms to 'plug' these holes. This is what improves the overall rate of regurgitation. Perhaps this is what your Dr. was referencing.

My valve was at mild regurge after surgery, but six months post op went from mild to none. Melissa

 

[catwoman]

And just my two cents, but I don't think the generic warfarin was the problem! If they only had you on 1 mg of warfarin, that is nothing, nothing!!! - not for an adult woman! The milligram dosage is the same amount, regardless of generic or brand. Katie's dose alternates every other day between 2.5 mgs and 3 mgs, and she is five years old. Notice they have you on 8 milligrams now - huge jump - and you are still not staying in a safe range!

Deana:

I had written about the same as Janet, then edited mine back to just refer you to our Anticoagulation forum here.
I was sent home on 2.5mg of Coumadin (name brand). Had INR 2 days later, which was a little high, was cut back to 2mg a day. Then I was gradually bumped back up and am taking 6.5mg daily now. My INR was stable within about 3-4 months of my surgery. BTW, my surgeon said he sends most people home on 2.5 mg after getting a mechanical valve.
My surgeon wrote my first Rx for Coumadin. At that time, my cost was the same as the generic. My PCP insisted I take Coumadin. When the co-pay jumped for Coumadin and I could get 90 tabs mail-order of the generic for $20 -- less than 1/3 my co-pay for the name brand -- I told my PCP I was going generic and asked him to write new Rxes. He relented, wrote the scrips and said, "Since you home-test, you'll be able to see any change in your INR with the changeover."
There was absolutely none. Except to my bank account.

 

[Lynlw]

And just my two cents, but I don't think the generic warfarin was the problem! If they only had you on 1 mg of warfarin, that is nothing, nothing!!! - not for an adult woman! The milligram dosage is the same amount, regardless of generic or brand. Katie's dose alternates every other day between 2.5 mgs and 3 mgs, and she is five years old. Notice they have you on 8 milligrams now - huge jump - and you are still not staying in a safe range! Somebody screwed up big time if they released you on only 1 mg of warfarin/coumadin a day. Anyone who is familiar with warfarin at all should have realized that dosage could not possibly have been correct. This is definitely not aimed at you, but at whoever was "managing" your anticoagulation in the hospital. They are supposed to be the experts! Again, just my two cents, but I think you and your husband need to be asking some serious questions - even if it is through your lawyer!!! I am not at all a proponent of frivolous law suits, but it sounds to me like "some people" are trying to cover their asses by blaming your stroke on the generic anticoagulant warfarin when it is obvious you were severely underdosed, regardless of whether it was the namebrand or generic. Again, I hate to sound redundant, but someone in the medical field who works with coumadin on a regular basis should have known that there is no way 1 mg could be an adequate dose for an adult. BTW, UofMichigan uses warfarin,and we were sent home on that. Our PC insists on coumadin, but we saw no difference between the two.



We don't take coumaden, but this was my thought too, I had never heard of anyone on 1 mg daily even the little ones I was actually going to ask a mom how much their kids take, because most I know closer to 25 a week is a low dose for an adult. I didn't say anything last night , because I was hoping the 1 was a typo, or my thinking was wrong.
what was your INR in the hospital on 1 MG?
well thank God you are home and one your way to mending, but i would be really concerned about who is managing your coumadin, Lyn

 

[Computec]

Deana...

I totally agree with Janet, Marsha and Lyn.

1 mg a day of Coumadin or Warfarin is virtually nothing. A bit of salad for someone on such a dosage would knock their INR all over the place. During December of 2005 I suffered a stroke and was hospitalized for 6 days. Aside from the doctors identifying the cause as a bad mitral valve and a-fib they raised my INR using coumadin while bridging me with the heparin IV. It took them 6 days to get me to an INR of 1.8.

Following my surgery in January I was put on 5 mg of coumadin per day and the drug Amiodarone. A side effect of Amiodarone is that it "raises" the effect of warfarin/coumadin so you actually need to take less for the same effect. When I stopped the Amiodarone my dosage requirements of warfarin increased and I am now at 7.5 mg per day and climbing. 1 mg a day of coumadin is just not right for an adult human being.

You mentioned the Albertson thing. That's quite funny. During my hospital stay following my stroke I fixated on the movie "The Matador", a movie I had never seen, which stars Pierce Brosnon as a failed CIA agent. Ever time I woke up I was telling my wife that it was really important for some reason or another that made no sense whatsoever. That scared her but was pretty funny in hindsight. I have yet to see that movie but I was positive at the time that it contained the "answers".


The difference between Coumadin and Warfarin is in the price not in the quality. I believe that most pharmacy grade Warfarin is manufactured in Israel and the quality is tightly controlled. It may be the same stuff that's used in rat poison but it's manufactured under much tougher guidlines. I'm a warfarin user myself and I have absolutely no problems with it.

In thinking this over I thought that your reference to the "1 mg a day" was a typo. Now I think it was a mistake made by the doctors or the pharmacy when they wrote/filled your perscription.

Anyway, Lady... You relax and bask in the wonder of having made it through these hardships and know that there are reasons for all things.

Jerry

 

[Marguerite53]

Deana. I just wanted to pop in and say congratulations for getting yourself through this scary ordeal. It sounds like you have a strong family and lots of devoted, caring friends. I'm sure your husband was beside himself worried for you. You sound so level headed and strong......you are amazing. Keep up the good work as it sounds, just from one post to another, that you are improving all the time.

I honestly believe that the body wants to be normal. It is in their fighting with you and with your optimism and determination I know you'll get there!!

Take care. Thanks for posting and letting us know how you are.

Marguerite

 

[Lynlw]

I'm wonderring IF the pharm made a mistake,either read it wrong or made a typo, I would go to the pharm (ok send husband) and ask to see the hard copy of the prescription and if possible ask for a copy of it, don't tell them why, just that you need it for your records. however this is something that even IF the doc wrote for 1 mg the pharm should have questioned. especialy since you didn't have other prescriptions for 5s or something and the 1's were just to make an odd number , Lyn

 

[denobobeno]

Hi everyone,
I checked with my Surgeon's office. She said he did send me home on 1mg. She said my INR prior to leaving the hospital must have been really high. She cautiously asked me how I was doing. I explained about the walking, slurred speech, and blurry vision. The mean side of me wants to make him feel guilty, but, that isn't right. He really is a great Surgeon and thought he was doing the best for me. I also told her that I was a little shocked he allowed me to leave with an INR so low instead of admitting me or watching me more closely. She didn't have much to say except how sorry she was. We really liked her and in fact my husband had given her one of his nice head stalls (horse) he didn't use much.
I just wouldn't want this to happen to any of his other patients.
Thanks for the info on the leaky valve. I'm sure it will all be fine. I'm really not worried. I think it must be normal.
I checked out the Coumadin site and it's my new hang-out!! Great stuff!
I AM SOO THANKFUL FOR THIS WEBSITE!! I have learned soo much and haven't felt so alone during all this. I feel like everyone sticking together makes me stronger and able to handle anything that comes along!
Thanks to all who maintain this site only to help others!!
I am tired and think I'll go rest, I had a friend come over and I'm pooped!
I'm checking this site more often and love hearing all the encouragement. Thankyou, Deana

 

[Lynlw]

Hi everyone,
I checked with my Surgeon's office. She said he did send me home on 1mg. She said my INR prior to leaving the hospital must have been really high. She cautiously asked me how I was doing. I explained about the walking, slurred speech, and blurry vision. The mean side of me wants to make him feel guilty, but, that isn't right. He really is a great Surgeon and thought he was doing the best for me. I also told her that I was a little shocked he allowed me to leave with an INR so low instead of admitting me or watching me more closely. She didn't have much to say except how sorry she was. We really liked her and in fact my husband had given her one of his nice head stalls (horse) he didn't use much.
I just wouldn't want this to happen to any of his other patients.
Thanks for the info on the leaky valve. I'm sure it will all be fine. I'm really not worried. I think it must be normal.
I checked out the Coumadin site and it's my new hang-out!! Great stuff!
I AM SOO THANKFUL FOR THIS WEBSITE!! I have learned soo much and haven't felt so alone during all this. I feel like everyone sticking together makes me stronger and able to handle anything that comes along!
Thanks to all who maintain this site only to help others!!
I am tired and think I'll go rest, I had a friend come over and I'm pooped!
I'm checking this site more often and love hearing all the encouragement. Thankyou, Deana

PLEASE request all of your records from your first admission right now, if they make you pay per page find a doc they can send them too for free if you can't afford them
something is NOT right, I really find it hard to believe you were really high on 1 mg, and if so they should have repeated the test. alot of times the things that keeps patients in the hospital a few extra days is to get their INR in range, it is THAT important.
ok just my opinion so please take it for what it's worth,, but even tho your doc is very nice, this is your life and your family and i would want to see proof that everything was done properly and if it wasn't, I would not worry about seeming mean, i can tell already you are the kind of person that would not forgive yourself if you heard something like a stroke or worse happened to another patient in the future because you kept quiet and didn't want to hurt any feelings. IF you see your records and everything says things were taken care of perfectly, wonderful, but if he screwed up something needs to be done about it even if it is just making a record of it and reporting it.
I worked in hospitals for almost 20 years and knew many doctors and there were some doctors i would trust My or my families life w/ and both doctors i liked or thought they weren't the friendliest but knew what they were doing.on the other hand there were very nice doctors, i didn't mind sharing lunch w/ but under no circumstances would i let them touch me or someone i loved.
ok i'll quit now you have the picture, sorry if i seem like a nag. i just care about you and that doctors future patients, Lyn

 

[EVELYN]

Hi Deana

Quick note to say "HI" and I'm so glad you're home again and doing well!!!

MAJOR DITTOR TO WHAT LYN JUST SAID!

Sorry doesn't cut it when you're dealing with YOUR life, girlfriend!! JMHO for what it's worth.

I hope you continue getting better and better!.

Evelyn

 

[Nan]

Glad to see that you are back home and well on the road to recovery with a great attitude!

The coumadin / warfarin issue is worrying, but perhaps your hubby can look into that more and you can just concentrate on getting well!

Take care.

 

[CThrock]

Glad to have you back Deanne was checking pften when heard the news of your stroke. So glad you are doing much better and that things will continue in that direction. You have been in my thoughts and prayers and though we don't always know why things happened we can asure our selves that God is in control. You had tour surgery just a few weeks after mine so glad you are on your way back to recovery. Keep us informed on your progress. Crystal