Kristy's Mom

[KristyW]

Hi everyone?I NEED TO VENT!

I?m a member here (6 years this past June!), but I don?t post often & I usually hang out in the Anti-Coag forum. This post isn?t about me?

My mom had Aortic Valve Replacement surgery on September 19, 2007. (Runs in the family.) Since then we have had problems?ugh. The surgery went well; she got a bovine pericardial valve. She was sent home with: Warfarin 5mg/day (for 3 months), Metropolol 25mg 2x/day (to lower the hear trate?already has low blood pressure), Simvastatin 20mg/day, Lasix & potassium as needed, vicodin as needed. Now, she no longer takes the vicodin, lasix & potassium, and she switched from simvastatin to Vytorin (she took it before the surgery). Normally I would look at this list and say o.k?.no problem. (It?s a short list compared to most!)

However, since the surgery she has been extremely nauseated. At six weeks post-op she?s afraid to eat and she can?t sleep because of the nausea. Now how is someone supposed to heal with no calorie intake and no sleep? Her INR at the 4 week appointment was 4.7. The nurse at her surgeon/cardiologist?s office (it?s a large cardio center) said oh that must be the Warfarin?put her on Coumadin! ?People who are hard to regulate do better on Coumadin plus it?s probably causing the nausea.? (WHAT?!!) How can she be considered ?Hard to regulate? when she?s had 4 INR tests since discharge? Day 3 - 1.6, Day 6 - 2.3, Day 10 - 2.6, 4 weeks - 4.7? That?s not hard to regulate, that?s normal for coming off surgery and not knowing how a person metabolizes warfarin. (This is a dedicated Anti-coag manager with the cardiac center.) Could it be that she?s not eating??? Do you think that that might be the problem???!!! GEEZ!!!

So they made that switch to Coumadin?didn?t help the nausea. Then my mom figured out that it was the metropolol (she got nauseated within one hour of taking it both morning and evening). So they switched her to Atenolol & halved the dose. She?s still having nausea and now she has diarrhea. She suffered with this for more than 4 days without telling me. I hollered at her to call the DR. this is NOT normal. She called them yesterday & was told ?Today is surgery day, they won?t be in.? No one called her. I called her back today & asked if she called again?she said yes. Oh by the way, her INR test from MONDAY came back TODAY at 1.7 NO ADJUSTMETS!!! I?m just pulling my hair out! She?s taking 2.5 mg & 5.0 mg on alternating days (not weekly but alternating days..ugh) We still have no one calling to help with the nausea & diarrhea. I?ve suggested that she go to her pharmacist & see what he has to say. (Can?t be worse that where she is now.)

Short of physically taking her in and having a sit-in at the surgeon?s office?what can we do? What could be causing the nausea? Oh, this cardio group is very progressive, they put her in cardiac rehab at 2 weeks post op! I can?t even get her to walk to the corner right now?she has absolutely no energy. I?ve watched my mom go downhill from about 3 weeks post op on. She was pretty good at 3 weeks.

I know this is rambling, but I know that you all understand.

 

[Computec]

Hi Kristy...

Sorry to hear that your Mom is having these problems.

Personally I don't believe there's any difference besides the price between Coumadin and Warfarin. One is a brand name and the other is generic with no marketing behind it. One point is that the Vytorin can cause the INR readings to be high by slowing the metabolizing of the warfarin that's in the blood. Generally it can be .5 higher than without the statin.

That one higher reading that your Mom had sounds like an error since it's not close to the others and there was no change in dosage. Make sure she's being religious with her warfarin. A missed dose will show a rapid falloff.

As for the nausea... I'd continue to follow up with the doctors on this. It's important that she be getting nourishment to speed her healing. It sounds as though one of the meds is not being tolerated well and even if there's just 1 user in 1000 who gets nauseated by a medicine a person can always be that one.

I hope you get to the bottom of this soon. Best wishes to your Mom.

Jerry

 

[Nancy]

Kristy, Joe was also put on Metoprolol, then Atenolol, and some others like them, also was at one point on Coreg. His system was very sensitive to the nausea part of the symptoms, and also the diarrhea. He refused to take any of them after trying them.

They would have helped him I am sure, but at what cost.

He had the problems even on a tiny dose.

I really don't have any answers for you except to tell you I understand your frustrations.

One cannot go on and on w/o eating and with nausea and diarrhea.

Doctors like to ignore those problems. I think they feel they are minor compared to the good these drugs can do.

But for those who have either seen problems first hand or watched someone with them, it is terrible.

BTW, they tried him on anti-nausea meds, they didn't work much at all.

The only thing that worked was for him to go off them. I'm not suggesting this for your mom, because I have no idea why her doctors want her on these. Maybe it is a situation where a lower dose would be better. Many older people need lower doses anyway because their systems are more sensitive to things. And many doctors feel that the stomach symotoms go away in time.

Diarrhea was a really bad problem for Joe. It certainly can make someone not want to go out and do things. You never know when it will hit, and cause an accident.

And of course not eating can throw everything off.

 

[ALCapshaw2]

It sounds like she needs someone (i.e. DOCTOR) following her more closely. Where is her PRIMARY CARE PHYSICIAN in all of this?

One's PCP is the one who should be looking at the Big Picture and Coordinating Care for his patient.

Are you in the same city as your Mom?
Can you go with her to her PCP or Cardio to facilitate better care?

It sounds like her problems are just being 'blown off' with pat answers and little compassion!

'AL Capshaw'

 

[Bina]

I'm also one of those ultra sensitive people......I spent the first 6 weeks post op in pajamas.
The anesthetic had horrible effects on me. I felt SICK all day.
I ate unsalted soda crackers alot and small meals that at least were very nutritious. Food is important!
Chicken, fish, rice, potatoes, plain mixed veggies, yogurt, dry cereal, bananas, etc.
Yes, the Metoprolol is hard to get used to, but I know I need it.
I split mine into 4 small doses daily and that helps.
I'm not a big fan of the coumadin dosing of 5mg and 2.5mg, too much swing.
For myself, I prefer closer daily dosing, I take 2mg and 3mg.
Best wishes for a solution.

 

[catwoman]

Kristy:

Diarrhea and poor nutrition will increase the INR. I'm surprised the people overseeing her anticoagulation therapy couldn't figure that out. On second thought, no, I'm really not surprised.

Here's a link to the prescribing information for Coumadin. Information will be the same, whether your mom takes generic or brand name.

http://www.bms.com/cgi-bin/anybin.pl?sql=select PPI from TB_PRODUCT_PPI where PPI_SEQ=91&key=PPI

Print it out and show it to the folks at your mom's cardiologist's office.

 

[KristyW]

Replies

Replies

Computec - I know that there's no difference b/w Coumadin & Warfarin. That was part of my frustration...her "Anti-Coagulation" nurse still believes the b.s. that Dupont is saying about Coumadin being better. I don't think the 4.7 was in error because you can see that as they were taking the readings, each one was higher. Oh..and the 4.7 was by both fingerstick and venous lab draw. The really frustrating part is INR = 1.7 -- no change!

Nancy - I know tht you and Joe went through so much. My mom was put on Metropolol and then switched Atenolol for rapid heartbeat...she's in the 90's at rest. I was on it for about 6 months following surgery too. It sounds like it's S.O.P. I'll have her push about that with her Surgeon.

Al - My mom doesn't have a PCP right now. She moved from Laramie, WY to Brighton, CO last summer. Her Cardio & Surgeon traveled from Ft. Collins to Laramie once a week, so that's how she got them. She stuck with them after the move, but hadn't had time or energy to take care of the PCP part. My experience was that my PCP didn't want to see me until the surgeon released me from his care. My mom has not yet been released (probably next month). I have been to most of her appointments, but it's frustrating...you all know how it is...the minute we the patients start to question their instructions, they get defensive and dismissive. Her surgeon is a really nice guy with great bedside manner, but it's hard to pin him down because he's busy.

Bina-The problem is no matter what she eats she's at the point of vomiting. She doesn't have High Blood Pressure at all (as a matter of face her BP runs 90/55-60 -- a little low) so it's only for the heart rate.

Marsha - I've been hanging out in the Anti-Coag forum for 6+ years, the problem is that her healthcare professionals believe that they know better! Ugh. Like I've said...frustrating.

All - As far as the anti-coag goes I'm not too awful worried (but a little worried)...she should be taken off it in 6 weeks anyway. Her surgeon puts all his tissue valve patients on it for 3 months while they heal.

 

[Computec]

Your frustration is understandable, Kristy. Dealing with the medical community can be that way at times. Your Mom's situation sounds like it's being made worse by the virtual absence of the practioners.

Regarding the gyration in the INR readings:

Is it possible that the dosage was late that one time and that the testing took place while the higher concentration was still in the blood? I've missed doses a couple of times and tried to make them up. I know (since I started home testing) that this causes some wild readings if tested 3 days following the error. The higher reading is not a dangerous one but should be cause for vigilance. As has been shown, under 5 does the job of preventing clots with minimal risk of bleeding.

I agree with Bina that the dosing with 5mg and 2.5mg on alternating days will cause a deeper swing in the sawtooth of concentration in the blood. See if there's a way to flatten out the amount per day either with 2 and 3 mg tablets or even a pill cutter.

The nausea is something that needs dealt with quickly. Food consumption will affect the INR as well as a person's frame of mind and ability to heal properly. This is probably what to go after first. Don't be put off by the doctors. Argue with them. Even yell at them. They'll get tired of it and pay more attention. The squeeky wheel and all that, ya know? Even when they don't demonstrate it most of them feel a sense of responsibility to their patients.

Once Mom's eating habits start to stabilize be aware of the INR changes and adjust accordingly. Since you've been reading the ACT forum for a few years you know that the level of expertise out there in the clinics, labs and doctor's offices is not what it should be. I'm convinced that the body of experience and knowledge regarding warfarin, as shown by the members of this website, is unsurpassed.

Jerry

 

[KristyW]

Jerry,

Thanks for the response. Like I said, I'm not too awful worried about the INR because she'll be taken off the anti-coags in 4 weeks or so anyway. She's very good about taking the meds at dinner and dinner is between 5:30 & 6. I'm not so sure that the variation is anything to worry about...after all it takes a full six days for a dose to exit our system, so on a weekly basis she's taking 27.5 mgs/week with either 10mg or 12.5 (3 days dose) being fully in her system at full strength. There really won't be that much of a variation. Al Lodwick has managed thousdands of patients with 5mg pills only, so I'm not worried about th 5/2.5 difference. It's just the total frustration that the "experts" are so mis-informed.

I agree that the nausea needs to be tackled 1st! I read my mom the riot act on Tuesday when I found out that she had been ill for 4 days and had done nothing. Her feeling was "what can they do?". I let her know that they need to know these things because her medications work differently when she's not eating! Sheesh. (There are times I wish that she wasn't so healthy all her life! lol I don't mean that but it would make it easier for her to deal with the Drs.) She wouldn't call them on Tuesday b/c it was after 5 & no one was there. I said...that's why they have answering services, so the nurses can decide if it's something the Drs. need to know right away.

Oh well, I know that her Drs. mean well, but they really aren't taking stuff seriously.

I just got off the phone with her -- She did speak with a nurse, but the nurse can't do anything. She'll have the surgical nurse call my mom when she can between surgeries. I told my mom to call back and be adamant...tell them that she absolutely CANNOT be like this anymore. The weekend is coming up and it is unacceptable that she's been calling for 3 days and got absolutely no one to call her back. (I know I'm nagging her.) I told her that she needs a PCP because a call to him/her would get the wheels rolling faster...when another medical professional calls...things happen a lot faster.

I'm getting exhausted. My surgery and recovery were difficult for me, but generally a piece of cake! My INR management has been fairly competent, but my mom's is horrible.

Ok...I'll stop whining now.

 

[Bina]

The nausea has got to be dealt with and as long as your Mom is feeling ill she won't be able to fight with the doctors. After one of my Mom's surgeries she was very ill and vomiting all food back up. My Dad explained to the docs and they really weren't sure that anything was wrong.....over many days I watched my Mom deteriorate. Finally I told my Dad to raise some sh*t at the hospital ER.
After several tests it was determined that my Mom had a blockage in her intestine from the surgery.
There was no way that the doctor was going to question his own work...

 

[KristyW]

I called!

I called!

I called the Drs. office about an hour ago and raised hell. I was nice, but very firm with the poor scheduling woman. I told her that my mom probably wasn't making a strong enough statement, so I was calling to tell them what was going on. I realize that she can't do much, but I told her that someone who can make decisions regarding my mother's care MUST call my mom today. I let her know that the triage nurse told my mom there wasn't anything she could do. I also let her know that it was absolutely unacceptable that we haven't had a call from a decision maker in 3 days.

Hope this all helps.

 

[Ericalwhite]

Nausea

Nausea

Kristy

I too had severe nausea and diahhrea post surgery. I spoke to both my surgeon and PCP several times and never got much help from them.

From talking with other people here, I learned more about Probiotics and did some research on them and then got approval from my surgeon to give them a try. And had great results.

I think that the surgery is harder on our system than we give it credit for. All those antibiotics, and anestesia, and pain meds and all this medication and our bodies dont know what to do with it. Seems the probiotics helped my body fight back a bit by building up some of my good bacteria again.

Good luck!

 

[Lynlw]

I was wonderring if you or she tried dealing with the cardiologist and not the surgeon? Usually post op, we call the cardiologist for most things. I hope you get some answers. I know how miserable it is dealing with nausea /diarehia and not wanting to eat.

 

[KristyW]

Lyn,

They're all in the same office!! She saw the cardiologist at 10 days post op, but the surgeon still has her under his care until the end of November.

I did just now call and finally reached a nurse...(something my mom failed to do I found out). I've got her scheduled to see the associate surgeon on Monday....meanwhile if it gets worse, I'll hall her carcass off to the emergency room. I really do love my mom...I just talk tough.

 

[Nancy]

Good for you Kristy! Got them off their dead a--es! Why do they let things go until someone has to get nasty. If only they would just do the job they're supposed to do, then everything would be OK.

I guess none of us ever grows up. The little kid in school who was lazy, just grows up to be the big man (or woman) who is lazy. Maybe they were smart and didn't have to work very hard, and got into med school. Then when they graduate, they just float along until someone calls them to task. Same old, same old.

Where's the knuckle rapper ruler and the paddle board?????

 

[BDMc]

Sounds Too Familiar

Sounds Too Familiar

Kristy, I've been through the same kind of thing numerous times with my mother. I think you are handling it the right way. You have to start off politely, but very firmly, and insist on getting some attention. With some doctors, nurses etc. nothing works, and you must change. I would not use that ACT clinic, as the nurse is just out of it! You could send her here for an education! Hope you find some responsible caregivers. Your mother needs some relief SOON! All the best, Brian

 

[ALCapshaw2]

Regarding Coumadin / Warfarin dosing, I like to keep the day to day variation small so I've asked for (and received) prescriptions for Both 3 and 4 mg doses. This allows me to adjust my weekly dose anywhere from 21 to 28 mg/week in 1 mg increments with a SINGLE pill each day merely my varying my weekly allocation which is set out in my 7 day pill box.

My usual dose is 25 mg / week = 4 3 4 3 4 3 4 from Sun thru Sat.

Alternating 5 and 2.5 gives 5+2.5+5+2.5+5+2.5+5 =27.5 for the first week and 2.5+5+2.5+5+2.5+5+2.5 = 25 for the second week = 26.75 average

A smoother allocation could be achieved with 4 3 4 4 4 3 4 = 26 / week
or 4 4 4 3 4 4 4 = 27 / week.

'AL Capshaw'

 

[katie1234]

Sorry to hear of all the trouble you've been having. My mom battled severe nausea for months after her surgery (she still has nausea, but milder now). We had the same experience where the surgeon and the cardio weren't concerend at all, even though she was barely eating at all and every meal was a nightmare. Finally, she went to her gastroenterologist, who said that the nausea was probably caused by many things suchs as: all the medicine and the anasthesia, as well as an inflammation of the digestive tract. My mom carried a lot of fluid in her abdomen (still battles it), and she was diagnosed with Dressler's syndrome a couple weeks ago. She was put on Prednisone and Compazine (an anti-nausea drug) and her stomach has felt a lot better. So maybe if nothing seems to be working, look into inflammation as a possible culprit? Hope she feels better soon and you get some answers.

 

[KristyW]

Some Relief!

Some Relief!

All,

Thank you for your care and concern.

Good news. My mom's appointment with the surgeon yesterday went well. The surgeon was attentive and responsive. He said that it's obvious that the Beta Blocker was causing all the problems: nausea, extreme fatigue, acid reflux & diarrhea (sp). He's weaning her off it the next 2 weeks!! He said that since she only had the valve replaced & not any bypass, that there really was no reason to keep her on them. Her heart rate will recover on its own in time. Woooo hoooo!

Al - I understand what you're saying with the warfarin dosing, but it seems unnecessary in this situation...my mom will be taken off warfarin/Coumadin in about 4 weeks or so, no sense in having 2 co-pays when she already has all the medication she needs paid for now. Like I said, the anti-coag is only temporary.

Again thanks to all of you who offered suggestions and support.