Daughter concerned: Mom in Afib afer repair/MAZE

[indigo]

Hi, I'm new and posting for my mother. She's 74, had a 4 year history of CHF. She developed afib, and this past August she had mitral and bicuspid valve repair + MAZE at Northwestern in Chicago. Post-op they delegated care back to her local cardiologist. I'm getting more disappointed with him. He's done no post-op EKGs or anything, just two quickie visits, a "you look great!", tweak the meds and "see you in a few months".

She started off with a pretty good recovery, staying at my house, until about October. She was scheduled for cardiac rehab and she was found to be so anemic they wouldn't let her particpate. The ensuing months have been an effort to get her blood count up and weight up. She has no appetite, has recently begun having lots of nausea. In fact, I just looked it up further and most symptoms she has are side effects of Amiodarone.

I was so fed up I called Northwestern and asked for an evaluation by the cardio there, I'm concerned about her post op care. See them in a couple weeks.

Then this past Thurs she got suddenly worse. It was symptoms of stomach bug we've all had, but she also had shortness of breath and extreme fatigue. The next morning she had a checkup with her family MD. As she was not improving and I saw symptoms like CHF appearing, I asked that he take her right away. He ordered an EKG, chest xray and blood work STAT. Her EKG report showed Atrial fibrillation and a beat of 145. Yet he told me to take her home, schedule and wait for echo results.

I called Northwestern, and nurse said don't fight traffic to get here, take her to nearest ER (we're in the 'burbs, 30 -60 minute drive from Northwestern). Got her to local ER and they whisked her back into a room right away.

She's still there, they put her on IV Amiodarone and she's even sicker, keeps throwing up. Took her off IV, but upped her oral dose of Ami from 100 to 200 mg. Now the cardiologist is talking about doing conversion with defibrillator tomorrow.

I want to talk to her surgeon at Northwestern, being Sunday, I can't reach them. I will call first thing in the morning.

My question: has anyone experienced this where they needed zapped post-op? They zapped her heart exactly one year ago for afib. I thought the maze was to correct all that. I'm concerned, this local cardiologist has a good rep, but he's difficult to pin down and talk to (does rounds very late or very early). I heard of their plans from the nurse in a "by the way" type conversation.

I don't know what to make of this and am concerned for my mother.

Any help appreciated.

Oh, and her heart meds are:
Metropolol 25mg
Amiodarone 100mg
Coumadin 2.5 mg
aspirin 85mg
Lisinopril 10 mg
Lasix 20 mg

She's taking others, but those are just her heart meds.

 

[PJmomrunner]

I am sorry your mom is having a hard time. I am sure you are worried sick about her. It sounds like you did all the right things in getting her seen by her primary ASAP and then to emergency and admitted. I'm sure others who know more will come along and post, but the only thing that occurs to me is (and that's probably because it's pretty obvious ), did they check her PT/INR to make sure she is properly anticoagulated?

I hope her heart rate's down and she's feeling better soon. All the best to you both.

 

[indigo]

Hi P.J.
Thanks for the kind words and yes, they checked her protime (sp?) yesterday. I've been taking her for weekly checks to an OP lab for that.

 

[perkicar]

Sometimes they have to repeat the loading dose of amiodarone to get the patient to convert to a sinus rhythm. How long has she been on the IV? Or did you say they had stopped it? I've seen patients of ours in afib and the amiodarone has taken a little while to convert their rhythm, and even them they will have short periods of afib. What you said about your local cardio not doing any EKG's would concern me too--how can he tell if she was in afib, maybe she's been that way for a while and just wasn't symptomatic. Did they do a BNP blood test (for CHF?)
Sounds like you are on track. You can still call NW today and get the oncall doctor, at least you'd be getting their point of view for her care.
Carolyn

 

[indigo]

Thank you perkicar.

Mom was getting Amiodarone in IV from late Friday till about 4:30 a.m. Sat, at which time the IV popped out and due to Coumadin was a frightening experience for her. So yesterday morning they switched to oral. They'v also added Digoxin back to the list (she used to be on that, pre-surgery.)

The nurse this evening told me that Mom's heart is slowing, sometimes as low as 98 bpm, but not holding, it will suddenly jump up to 150. So the meds have not done their job yet. They are checking her upper GI tomorrow due to all the nausea, but I'm betting it's the medicine. If she stays in afib, the plan is to use the paddles. But I still haven't spoken with an MD in person, such an aggravation.


I'm not familiar with "BNP" blood test, so doubt it's been done. I didn't even know their was one for CHF, and I try to track this really closely. Mom's had a couple ministrokes and it all gets to be too much for her. So I manager her MDs, meds, etc. to make sure it goes as it should.

What you bring up about being in afib and being asymtomatic, that has happened before. They asked her in Chicago if she ever felt her heart when it was racing, and she said as goofy as it sounds, she does not feel it. So I'm going to have to at the very least keep an eye on her pulse diligently.

I will call Nwestern again in the a.m. I was talking to a good friend of mine who happened to be one of my mom's nurses today. She told me that her own mother was also a patient of this same local cardiologist and she "fired" the man. She said he's highly intelligent, but can't be wrong and is very bad about communicating with family. Wakes patients up a midnight to discuss things, leads to lots of miscommunication. When my RN friend saw her mother developing an infection from a device the MD implanted, he refused to acknowledge it. Only when my friend took her mother to his office and insisted he look at it did he admit it was infected. My RN friend said he tried to do some backpeddling, but she wasn't buying it. Long story short, her mom landed back in hospital with a serious staph infection and they changed cardiologists.

So even though she had surgery at Nwestern, I still have to have good local backup because emergencies happen 2 - 3 times per year.

Thank you for your interest and input, I appreciate it. Hope this is lucid, I'm pretty tired

 

[ultimategirl63]

Hi there I am so sorry that you are going through all of this as I am kinda in the same boat as you.. My mom is having AVR and a cyro maze procedure done on the 24th of this month if all goes well. It seems so frustrating at times Did your mom have a valve replacement also and if she did was it a mechanical or porcine? I hope you can get everything straightened out... Your mom will be in my thoughts and prayers..

Hugs Carolyn

 

[indigo]

Hi Carolyn,
Thanks and I'll remember you and your mom, too I know just what you're going through. My mother is widowed and after we lost my dad, she relies on me heavily, and I don't ever want to let her down.

At the local (suburban) hospital, after the angio the local cardio told me she needed open-heart to repair the leaking mitral valve. He told me he didn't even know if my mother could physically withstand the surgery. I did not tell my mother that he said that. (She's also diabetic, severly arthritic, has had a rough time with CHF in recent years. She's a real tough cookie, though. ) He sent us to a local surgeon who spent all of 5 minutes with us, it was unreal! Literally felt like the fast food drive up for open-heart consult.

I wanted another opinion. We lucked out, God was on our side and we got in to see the head of Northwestern's cardiology unit for an opinion the next week. When I took her to Chicago, the doctors determined both valves were leaking. But their approach was just the opposite - they took lots of time with us, their confidence level was very high and their attitude was very calming. They initially planned open heart with valve replacement. Once they started the operation, they determined they could do a repair rather than replacement (a better option in their opinion) and they also did the maze procedure.

I can't say enough about university/teaching hospitals. There was a team with my mom through the whole surgery and recovery. She sailed right through the surgery like a trooper. Once all was said and done, one of the nurse practioners told us that mom's surgery got rather intricate, and she doubted the local hospital would have been able to manage it (she's familiar with our local hospital.)

One more hour and Chicago office opens, and I'll call and see what their take is. Maybe they will agree with the local treatment course. If not, I've got to find alternatives fast. And what's really ticking me off right now is I still have not spoken to an MD in person or on the phone and she's been in there almost 3 days.

 

[ultimategirl63]

Hi Indigo, any word from chicago yet? I hope you are making some progress.. I can't believe you are having such a tough time talking to the doctors. I must say that when we went to my mothers surgical consultation we must have spoken to the surgeon for about an hour or so, he was very informative and and we felt very comfortable with him.
what is that medication your mom is on? My mom is now on digoxin and her surgeon said that the maze procedure he is doing is a cyro procedure and is not done in every hospital or by any surgeon but that it is more safe then the the regular maze and that she would'nt need digoxin after that...

Hugs Carolyn

 

[tobagotwo]

I couldn't second-guess a cardiologist about medications, but my gut feel is similar to yours, that the amiodarone is having negative as well as positive effects. It is a high-side-effect prescription. Frequently, specialists like cardiologists focus overmuch on just what effect they think it will have on "their" part of the body, and not the rest. You could certainly seek a second opinion.

The MAZE procedure is the most successful surgical treatment for atrial fibrillation, but it isn't universally successful by any means. Fortunately, your mother is on Coumadin, which will greatly lower her chance of stroke from the Afib. Hopefully, this will turn out to be just an episode.

Best wishes,

 

[jax3172]

Amiodarone

Amiodarone

I had AVR and aorta repair 7/05 and went on Amiodarone to get me out of A-fib. They actually had the paddles on me but I converted. If I had it to do over again, I would have taken the zap instead of the amnio even a few days post-op. The amnio has given me terrible side effects that I'm still fighting through. Just my personal experience and opinion.

 

[Guest]

indigo,

I'm sorry I missed this thread earlier ... not sure how that happened.

Anyway....

Couple quick things for you:

1) I've been told, too, that my heart will beat fast at times ... and I have no clue it is happening. So, that's not an uncommon happening.

2) As my cardiologist is at Northwestern as well, I'd be interested in knowing who your Mom sees there. I doubt we see the same cardiologist as you've mentioned "he" ... mine is a woman.

Thoughts/prayers coming your way....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"There must be a reason for this pain I?m going through" ... Merle Haggard ... 'A Better Love Next Time'

 

[imhayley]

HI there I just wanted to wish you and your mom the very best and will pray that this all works out for you both. God Bless.
Hayley

 

[indigo]

Thanks so much for all the replies. I'm sorry I missed them till now, I've been at the hospital everyday, so not online, it's been a yoyo ride.

knightfan, my mom's cardio at N-western is Bonow. McDonald did the surgery. Is your MD Grayson? ( Knew they had a good rep, but wasn't fully aware of how good they were until we got her back home, when I took mom for her first local post-op visit, and local cardio said next to God, it doesn't get any better than that group )

Got hold of nurse at N'western. They are gems up there. She said cardioversion would not be a questionable course of treatment, and she offered further help in the way of faxing records, etc. if necessary.

It took exactly 5 days for us to be able to talk to and see a physician at hospital. Left note on bedside table asking for a call, my sister and I both asked nurses to leave message for cardio or primary MD, you name it. Nada for 5 days. Shameful.

They did cardioversion on Tues (I think, days are swimming together) and are releasing mom today. Cardiologist wanted to release her that night. My friend who works up there urged me to say "No!!" It's an unGodly hour, like 10PM, and nurse was about to make discharge arangements on phone through cardio, and I told her mom's too weak, too tired, and I don't want to bring her home in that condition. She agreed and didn't follow up on pursuing discharge. Then the next day they swing to the other side of the spectrum and start talking transitional care unit. But she stayed on cardiac floor, her heart is in a good steady rhythm. However, she's weaker and wobblier than when she went in. Could be that 'booster' IV dose of amio? They gave her a transfusion to get her count back up so she's not so anemic. It's going to be a daily challenge to get her to eat well. Caught her Primary care MD one morning in the room, asked about amio and he suggested I 'not read up on pharmacology and side effects'. (Yeah, right. Ignorance is bliss, but not my style.) He said it's best medication of choice, yes it has bad side effects, but they've no other choice. I still intend to discuss this at next month's appointment in Chicago. Catch-22, keeps her heart in rhythm but she doesn't eat, or can't eat, has had severe anemia, is weak.

I'm ashamed to admit how drained I am feeling right now. They told us this this could happen again. I'm praying it was just a blip. We had so hoped the open heart would enable mom to feel "good" for a change in her twilight years. I feel on very shaky ground with local care with this last experience, so will make sure she gets back to N'western more often for follow up. And feel I have to psychologically outmaneuver the meds, and get mom focused on good things to come, so she'll try hard to build up her stamina and beat the side effects.

So that's where we're at. I can't thank you all enough for the support, so glad I found you and it's very reassuring to know there's a place like this to come to!

 

[PJmomrunner]

Indigo, how could you not be drained right now??? The worrying alone is plenty of reason to be emotionally drained and you are also keeping up with the leg work for your mom as well as making sure everyone else does what they're supposed to! You are being an excellent advocate for your mom and that sounds like a complicated job right now.

My mom has some side effects of long term amiodarone use, but it was the only thing that worked for her for a time. Unfortunately, she never had followup care that was focused on getting her off it (like trying other drugs after a time) so she ended up on it for years--'til she switched cardios. Like my mom, it sounds like yours (and you) are going to have to settle for the lesser of two evils--amiodarone over arrythmia, at least for the short term. My mom never had any problem with eating while on the drug (which she would lament, actually ), but maybe your mom could force herself to have a protein shake twice a day to make sure she's getting what she needs to get stronger--EAS makes some good ones that you can just add water to (but they're WAY better blended with ice). I'm not sure if they're high in vitamin K or if that would be an issue for your mom.

You are doing such a good job for your mom. She must be very proud of you. Take care.

 

[Guest]

Indigo,

No need to feel ashamed about being drained ... good night shirt tail ... I'd worry if you DIDN'T feel drained .

Sadly, I don't think I've heard of the Northwestern cardiologists you named...mine is Mendelson.... My surgeons (January 2003) were Mavroudis and Backer at Children's Memorial.

Good luck to you and your mom ... thoughts/prayers coming your way.