Frustrated, need guidance: Mom's in constant A-fib post-op

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Ps

Ps

She is on Lopressor. This may not be the best drug with COPD. Just a thought. Make sure one good doc goes over all of her meds.
 
Update: Whirl of info and tug of war

Update: Whirl of info and tug of war

Please forgive, my head is reeling.

Local hospital discharged my mom Sat eve., "nothing more they can do". Five hours later, we're back in ER all night, still in a-fib, rate jumped to 150. She got the same ER doc that's seen her all the other times. I told him I was trying to get her to NWestern for their opinion since they did Open Heart and I don't trust putting her in the car to make the 50 minute drive with traffic, she's too unstable at this point. Bless his heart, ER doc got on the phone and started making calls, next thing I know, he comes back and has the on-call cardiologist at NW making arrangements to reserve a telemetry bed for her as soon as one is available and they will do an external transport (ambulance probably). Meantime, they admitted her and are doing cardizem drip, it's the only thing that keeps her heart rate down at this point.

So she's looking at AV Node Ablation and BiV ICD (pacemaker with defib).

Now the kicker: her local primary care MD told her if NW does the ablation and pacemaker, then if something goes wrong, she can't be followed up locally anymore if something goes wrong because "doctors here won't know what Northwestern did". She has clung to that thought, won't let go. Can this possibly be true??? I truly fail to comprehend the logic of a statement like that. I've asked local medical staff, who hem and haw with an answer (so I'm thinking their covering the primary care MD's behind because maybe this is an absurd statement to make to a patient?)

Next kicker: Local electrophysiologist who saw her Friday was all for an opinion from NW since they did her open heart. Thought it was a great idea, clearly confident in his abilities, but encouraged the opinion from them. OK, so that's settled. Then this weekend when I took her back to ER and she was re-admitted, the electrophysiologist's on-call partner calls me out of the blue, quizzing me: why go to NW? We can do this here, we're good at it. If you want a consult, I can call right away and we can do it over the phone with cardio's up there. (It stopped just short of feeling like a high pressure sales pitch scenario. )I asked if my mother is stable enough to wait till this morning when I'll know more about what NWestern is doing and can talk to them. He said yes. I said OK, that's what I want to do for her. Meantime, he agreed to start thinning her blood, so she's prepped no matter where the procedure is done.

So I have some local MDs working to get her there for an opinion, other local MDs pushing for her to stay local, and all the while the tug of war is going on here, the staff at NW is a) unaware of the tug of war and b) trying to get her a telemetry bed and transport up there. I put a call into nurse at NW an hour ago and am waiting for call back, since it's Monday and everyone's back in office, things will start rolling soon. But I'm concerned about my mom: she is fully confident in surgeons and cardios at NW, but can't get past the statement that if they do procedure up there, she can't get local care if there's an emergency (pacemaker defib goes off, etc.)

I'm losing some clarity due to lack of sleep and all this info being thrown at me. Keep praying for guidance, and I thought we had a clear course of action developing, but then the remarks getting tossed in I mentioned above are confusing and scaring my mother, making her want to go to NW, but feel reluctant at the same time.

What do you make of some of this. If you or your parent were the patient: Would you go to Nwestern since that's where Open Heart and Repair/Maze were done 6 months ago? Would go stay local, because of the threat that local can't follow up because they don't know what NW did?

I need some clarity here. You guys are great and many have been there/done that. Any input is appreciated, thanks!
 
We had a similar situation several years ago. Joe's local card. ignored his pulmonary hypertension until it became critical and life-threatening. We liked the man, but there was no choice. Joe needed someone who could help him, and it was obvious that it had to be done asap, and that we would have to go out of the city (about 45 minutes away) to find a cardiologist who could help Joe.

Joe has several fantastic doctors in the local city, including his very wonderful Internal Medicine doctor.

We made the cardiology change. I can say that it is an awkward situation. The cardiologist has privileges in an entirely different hospital.

I often find myself in the terrible position of trying to determine whether Joe's problems are cardiology caused, in which case, I would take him to the other city, or internal medicine caused, in which case, I would stay local.

We have been told that if Joe had a cardiology problem which became an emergency, I could take him to the local ER, and they would stabilize him and send him by ambulance to the other hospital.

Truthfully, there have been times when I was not sure whether it was a cardiology problem or something else, and I didn't think he would be able to make the 45 minute ride to the other hospital. And there have also been times when it was an Internal Medicine problem AND a cardiology problem. So I have taken him to the local ER.

I finally decided to stop pulling my hair out trying to make Herculean decisions. Let the local ER people sort things out.

Joe's problems are so convoluted anyway that even if he has an Internal Medicine problem, he ends up needing a cardiologist to follow him.

We did what was right for Joe, and have no regrets. We have a terrific relationship with the local doctors, and actually, the doctors have communicated with each other and it has worked out.

And the local covering cardiologists who have had to follow Joe in the hospital to keep an eye on his heart while he was being treated for something else, have been wonderful.

So, yes, it is tricky, and could be a real nuisance, but we had no choice, so it had to work out, and it has.

I say, do the right thing for your mom, and let the pros work out the details. If some of them don't like the arrangement, then find someone else.

Your mom's life is more important than the politics of getting treatment.
 
Wow.

indigo, very sorry you are experiencing this.

Relative to going to NW if anything happens, yes, that's true ... NW would know better, but really, I would hope that _any_ hospital would have the capability to at least _treat_ someone ... and then either consult with or transport to the "originating" (for lack of better term) hospital.

BTW, indigo, what hospital is the local hospital for you?

Thoughts/prayers continue coming your way....
 
Nancy said:
I say, do the right thing for your mom, and let the pros work out the details. If some of them don't like the arrangement, then find someone else.

Your mom's life is more important than the politics of getting treatment.

Nancy, you banged that nail on the head :)

Well, yesterday was a small nightmare. But there is a ray of sunshine. Got up to local hospital, nurse immediately approaches me and asks me what's going on with NW? I said "I was hoping you could tell me that." She said nurses on mom's floor didn't know anything, she informed me it's my job to coordinate transport, etc. (exact opposite of what ER doc downstairs said, but I have to roll with it.) She said by they way, she had orders from cardio to discharge my mother if she walked OK. My jaw dropped. I'm sitting there looking at my mother, short of breath, weak and exhausted. After weeks of ER visits, days of lack of sleep, politics, egos, my emotions started to boil over. I asked her for the tranport #, went outside, started making calls. Everything went wrong at first. I was looking for a lady at NW named Mary who worked in transport. No one heard of her. Bounced to 3 departments, I got another Mary in a department that had nothing to do with anything. That woman was an angel, she listened to my story, heard the tears starting to well up, and she got me right through to an emergency cardiac nurse who put me through to Dr. B's nurse (whom I've not been able to reach in person so far). Nurse told me she'd update Dr. B right away, someone would call back. After an hour on pins and needles, Dr B himself called me back. I told him everything. Told him if they discharge my mom, we'll be back in ER in no time. He tells me yes, wheels are in motion and my mother is #3 on transport list. Told him I was ready to put her in car and drive straight up to their ER. But he said bringing her to NW via ER is worst way to get admitted. Said for speed it's either medical transport or outpatient appt. He asked my mother's condition and symptoms. He said he'd look into matters and someone would call me back. Soon one of his Fellows called. He happened to be the Dr on call at NW this weekend whom local ER doc spoke to and also happened to be in office at my mom's last check at NW and remembered us. (Did you ever meet someone you just know is going to shine in their chosen profession? ) I owe him a bear hug when I see him next (and told him so)! He asked for my mother's MDs phone numbers, and started making calls, and he got assurance that they would keep her there and watch her till a bed opens up. But he didn't stop there, he called me back and asked me get a nurse and he spoke to her and made sure that an order to stay was in writing in my mom's chart (it was not at the time he called.) Am sure he made more calls to get it in writing, because she's resting comfortably, no threat of discharge, being monitored, and we're just waiting for a bed. In a kind and unassuming manner he just plowed right through the red tape and made things happen. What a gem!

In the past few days I have seen negative behavior in professionals that has left me shocked and I've encountered angels of mercy. When this is all said and done there will be some local "personnel changes", already have names of local cardio and internists lined up. "Pride goeth before a fall" keeps ringing in my ears. I hope no patient suffers critically from the inevitable mismanagement crisis that is looming. (I am hearing more rumblings, said in hushed tones and whispers while looking over shoulders, that we are not the only ones to encounter this attitude. My DH insists higher ups need made aware, I will address that after my mother is in the clear and in better hands.)

So my mom's hanging in there. Thanks for listening, it keeps me sane :)
 
Sounds like you found a comrade in the war to help your mom. I hope things continue to go well and she is better soon.
 
glad things taking a turn for the better...

glad things taking a turn for the better...

and I do hope things continue to improve from here. Keep us informed if you have time -- Mom's number one on your list -- you and your mom will be in our thoughts and prayers.
 
"She said nurses on mom's floor didn't know anything, she informed me it's my job to coordinate transport, etc. (exact opposite of what ER doc downstairs said, but I have to roll with it.) She said by they way, she had orders from cardio to discharge my mother if she walked OK. My jaw dropped. I'm sitting there looking at my mother, short of breath, weak and exhausted."

WOW! I hardly know what to say! That is some kind of unprofessional attitude on several people's part. I would rip them a new one, and then report them all to the State licensing board!
 
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