How do you coordinate medical care when your cardiologist is in another city?

[Fldirt]

Hi,
I was diagnosed with HOCM in 2007 but hadn't had much problems with it until now. Having more palpitations & runs of AFib up to 4 hours. Have started to see an EP for AFib. I also have Crohn's disease which has started to act up. Was in the hospital last month with active bowel bleeding which complicates matters a bit as I had AFib while I was there. Everyone kept asking who my cardiologist was. So my question is: how to you manage your care if your cardiologist is hours away from you? Thanks…

[Jall]

Re: How do you coordinate medical care when your cardiologist is in another city?

Its a real issue that I don't have any good answers. If you have an EP, the cardiologist will stay away from the afib issues. The EP will stay away from any HOCM issues. If you have an HCM specialist, the regular cardiologist will shy away from the hCM issues. The GP will be overwhelmed by all of it. At least that was my experience. So one thing I do is get a copy of every test/report and physically share a complete set with any doctor i see (or at least try to). At some level, you have do some of the coordination yourself and if there is a particular issue you have, tell one of the docs he/she is the "captain of the ship" and needs to address your concern.

I understand about one third of HCMers have afib issues and it will be the primary challenge for that group. I have always thought this Board needs a topic area just for afib issues. I am wishing you the very best.

[Redteamer]

Re: How do you coordinate medical care when your cardiologist is in another city?

Jall explains the problem well. The practice I'm with now has both EPs and cardiologists on staff so they collaborate well. In addition, I'm under the care of the Johns Hopkins HCM Center of Excellence(COE), which has both. In my case, my ventricular obstruction was causing back pressure in my atrium, which caused it to enlarge. This in turn disrupted the electrical pathways around the sinus node causing the Afib and Aflutter later. If my EP had not collaborated with my cardiologist at Hopkins, I don't think we would have figured that out.


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[Fldirt]

Re: How do you coordinate medical care when your cardiologist is in another city?

My problem is I may have to have colon surgery & my cardiologists are in another town. What if I have heart problems…who takes care of me then? Last month when I was in the hospital with GI bleeding I had AFIB & the nurses were freaking out because I didn't have a local cardiologist. The ICU doctor started me on medications for the AFib so all worked out OK then but what about the future?

[gfox42]

Re: How do you coordinate medical care when your cardiologist is in another city?

Jall pretty much nailed it. If I can add a point, it's that you have to be in charge. That sounds easy, but it isn't. But you have to be aware of all changes.

I don't think it *really* has anything to do with being in different cities. Unless the other doc is many time zones away, it's not hard to contact them, and the cost of calling them isn't significantly greater than if they were across the street. It's just that some health care professionals don't really want to consult anyone else.

There are some pretty simple ways you can try to get them to do some of this consultation. For instance, I've had some luck pretending I'm innocent but being manipulative: "Oh! That sounds interesting. Only . . . huh, I wonder what Dr. X will think of that." As a way of twisting their arm into talking with Dr. X. With some docs I can be more direct and tell them that I'm really not sure, and really think it's important that they consult Dr. X. With others I do this manipulative thing.

Gordon

[Jordan Z.]

Re: How do you coordinate medical care when your cardiologist is in another city?

Jall pretty much nailed it. If I can add a point, it's that you have to be in charge. That sounds easy, but it isn't. But you have to be aware of all changes.

I don't think it *really* has anything to do with being in different cities. Unless the other doc is many time zones away, it's not hard to contact them, and the cost of calling them isn't significantly greater than if they were across the street. It's just that some health care professionals don't really want to consult anyone else.

There are some pretty simple ways you can try to get them to do some of this consultation. For instance, I've had some luck pretending I'm innocent but being manipulative: "Oh! That sounds interesting. Only . . . huh, I wonder what Dr. X will think of that." As a way of twisting their arm into talking with Dr. X. With some docs I can be more direct and tell them that I'm really not sure, and really think it's important that they consult Dr. X. With others I do this manipulative thing.

Gordon

There is another way of taking control if you need to and that is to literally become the interface and make the contacts yourself. Even having everything at one hospital, I routinely email one of the specialists if another makes a change that I think has overlapping relevance. They are welcome to get pissed at me, but I will damned if I am going to have someone not to keep another member of the team looped in. In the one or two instances where I have had a provider that did play nice with the others I didn't hesitate to replace them with someone that would. I am the one that suffers if they can't communicate and i will be damned if I am going to permit that to happen. I choose to be aggressive in protecting my health. Its that simple.

[Wyoguy]

Re: How do you coordinate medical care when your cardiologist is in another city?

Good thread. I am having this issue as well. Since it's about time to visit Mayo's again, I had decided to ignore it until after the trip. Any new tests will be performed at Mayo I assume, so that will be the latest. And, they seemed good (last trip) about sending info to my local cardiologist.

[Frosty]

Re: How do you coordinate medical care when your cardiologist is in another city?

When your doctor is on an ego trip it is time for a change.

After my cardiologist referred me to my HCM specialist, sent all my records and praised him to the utmost heights he then decided that I should not listen to the specialist, refused to return any phone calls or emails -- all he wanted me to do was follow his medication regimen. He was gone at that moment and luckily for me my specialist is close enough that he is the only cardiologist I use.

[JillC]

Re: How do you coordinate medical care when your cardiologist is in another city?

Question - I belong to an HMO.....and my Local cardiologist put in a referral for me to go to Mayo for my redo myectomy 7/23/14.
For Post Op management I have gone strictly local but have emailed Dr. Ommen at Mayo on a couple issues to see if he agrees or has another approach in his HCM bag of tricks. So far He has agreed with my med changes and I have copied a couple of his responses to my local cards......Seems to be working.
Here is my question, I will be scheduling my one year follow up with Local cards.....echo and appt. But I'm wondering about follow up at Mayo? Did most of you go back to Mayo 1 year after surgery? Do you think it's a good idea? I don't have an ICD and my biggest problem is fatigue .....other stuff is stable. I'm just wondering, since everyone says even the testing is different at a COE....if they may want to look at the fatigue in a different way than they are locally.
Of course, getting a referral to go back to Mayo may be an issue, but I don't think they will give me any trouble if my cardiologist requests it. My Local cards has about a dozen HCM patients and I'm the most severe. ...... I guess I am always looking to improve my energy levels or at least understand why they are this way. I did just email Dr. Ommen to see what he thinks.

[Frosty]

Re: How do you coordinate medical care when your cardiologist is in another city?

The way it was explained to me is that a COE looks for different things on an echo than the average cardio does and that it is done differently, that the technicians are trained to do the echo is a specialized manner. Personally I have never noticed a difference but am willing to accept that explanation as I choose to be gullible in this instance.

[Jordan Z.]

Re: How do you coordinate medical care when your cardiologist is in another city?

Question - I belong to an HMO.....and my Local cardiologist put in a referral for me to go to Mayo for my redo myectomy 7/23/14.
For Post Op management I have gone strictly local but have emailed Dr. Ommen at Mayo on a couple issues to see if he agrees or has another approach in his HCM bag of tricks. So far He has agreed with my med changes and I have copied a couple of his responses to my local cards......Seems to be working.
Here is my question, I will be scheduling my one year follow up with Local cards.....echo and appt. But I'm wondering about follow up at Mayo? Did most of you go back to Mayo 1 year after surgery? Do you think it's a good idea? I don't have an ICD and my biggest problem is fatigue .....other stuff is stable. I'm just wondering, since everyone says even the testing is different at a COE....if they may want to look at the fatigue in a different way than they are locally.
Of course, getting a referral to go back to Mayo may be an issue, but I don't think they will give me any trouble if my cardiologist requests it. My Local cards has about a dozen HCM patients and I'm the most severe. ...... I guess I am always looking to improve my energy levels or at least understand why they are this way. I did just email Dr. Ommen to see what he thinks.

Jill....when I read someone with your background asking those types of questions it truly makes me greatful to have everything at one facility like NMH. When I realize that the reality is that month to month, year to year, having the same providers that have the same expertise that exists at Mayo or CCF I am glad I made the choice to stay local. If it was me setting up an appointment for an annual status check, I would do it in reverse. I would ask the people with the expertise, in your case [at Mayo] what metrics they wanted to review, both qualitative and quantitative and the tests they wanted done, noting any additional views, etc. Then I would ask them to share their list with the local providers and get confirmation that the locals were with the program. There is no reason that the heavy lifting can't be done locally and the results shared with the distant provider. If the COE model with locals referring to COE is going going to work, the cooperation needs to exist. If you don't have confidence that the locals can gather that data, that is an entirely different situation, which would demand that that check up be done on site at Mayo. Given the complexity and your own experience with having to have a redo....I would think that you would be very fastidious in making sure that the locals were with the program. I am also willing to bet that if you aren't getting what you need someone is going to have their head handed to them. I will speak for myself and say that if I wasn't satisfied with the arrangement, I would certainly make an appropriate level of noise. Good luck.

[JillC]

Re: How do you coordinate medical care when your cardiologist is in another city?

You are correct Jordan....I deserve the best of the best.....and I won't settle for less. I wanted to see how most people handle it ....but in truth that is not necessarily relevant. The true question is what do I need to feel that I am well taken care of?
For instance,
They just started doing VO2 tests at my local cardiology center......but having a VO2 test done at Mayo where they know what to look for in someone with HCM yields much more valuable information than one done locally. A Vo2 test may be very helpful in looking at fatigue....And although an echo seems a simple test, even that is done slightly different and read differently by an HCM specialist that has read a thousand of them.
Because of my medical knowledge I have a much too vivid imagination of what could be happening inside me.....but It's probably better to err on the side of over testing and find out nothing's wrong than the other way around.
Thanks for reminding me of where I need to be on this.
I'm waiting for an email from Mayo Cards and if he feels more testing is warranted I will have it done there.

[mbcube]

Re: How do you coordinate medical care when your cardiologist is in another city?

Having a COE in local proximity is the best thing, but that is not possible for many of us. I've had no problem with my local contacting my COE for advice. When I searched for a local, that ability was the key deciding factor. I've switched when I can't communicate with them or they refused to communicate with my COE. I did have my EP and Local at different offices (in the same city) and they know and respect each other so I have a good TEAM. I've visited my COE every 2-3 years so far. We really don't have a schedule, and I may be stretching that to 4-5 years if all goes well. They send a copy of everything to the locals. I've recently altered my dosage, told my local (he allows me to) and he alerted the COE so they are on board.

[Jordan Z.]

Re: How do you coordinate medical care when your cardiologist is in another city?

Well said......there is key element of common interest between a distant COE and local providers.....your healthcare. There shouldn't be a contest to ascertain who knows best....as there is only one objective and that ought be a healthy patient that is satisfied that everyone is working together to provide them with the best possible care. Me thinks that's what all of us want and are entitled to receive.

[Dahilla]

Now, during quarantine, I get consultations online. My condition is stable now, so I just have to continue taking my pills.