Looking for support in Los Angeles

[Heart2.0]

Hello,
I am looking for support or referrals or ? I am not sure. I am a kaiser pt and my care
Is super piece meal so far. There are no case managers and I have to "define" my own recovery.
I have a nice dr for adult congenital heart defects but he has no patients like me so I am
On my own as far as what recovery looks like , what is typical, how to approach other
Heart or non heart related medical issues..(. I mean how would I know?) This
Was a complete surprise to me and I had to have surgery less then 2 months after a
ACCURATE diagnosis. To say my confidence is low would be an understatement. Turns out
I am not an "anxious housewife". My heart was behaving badly all these years even as I swam ran danced
Etc. humph. (Wish I could b**ch slap a few decades of doc's ...)
If you are in LA and know of a good Dr or clinic or program or support group? I am very healthy
And do not have any cardio related disease so even cardio rehab is a huge mismatch. But I am super
Compliant and I go. Also super fearful. All those years of wrong info. Correct information and
Cheerful support will help me most! Any suggestions ? thank you !
I had a terrific surgeon Dr Yun btw. He is a great guy and very thoughtful.

 

[Mentu]

I think many people share the problem of not having a care coordinator. What has worked for me, has been to ask that everything (test results/reports/lab work) be sent to my primary care/family Doctor. I also keep a copy of these things for myself....just in case. If nothing else this does insure she has the information on file that might guide her when needed. My Doctor recently added a Nurse Practitioner as an assistant to follow up just this sort of thing. Last Thursday, my left knee was replaced. On Wednesday, the NP called to check on recovery, ask if I had any questions about drugs or anything, and encouraged me to call her if I had a problem or question. So you might check to see if your family doctor has such a person. The position might be called Coordinator or Advocate for Patient care. You might also discuss this with your cardiologist. If your problem developed so that you do not yet have a cardiologist, you will need to find one with whom you can work because they will need to monitor your heart into the future.

As for how you navigate health care in the future, it has been my experience that

1. No dental work until cleared by your heart surgeon or cardiologist and then only with prophylactic antibiotics.
2. Anytime medicines change, arrange for notes to be sent to your family doctor and cardiologist.
3. Read about endocarditis and inform both your family doctor and cardiologist if you think you might have it.
4. Report every infection to your family doctor, especially, any with flu like symptoms.
5. Watch your diet.
6. Walk and exercise.
7. Each time some procedure is performed, ask for a copy and keep them in your own records so you have a history file.

I think very highly of my heart surgeon but after 6 weeks he was pretty much through with me. Getting your family doctor and cardiologist used to working with each other is a better long term strategy.

You really are like most of us living years with no hint that there was something happening. I had no idea that I had a heart problem until the day my new doctor asked how long I had the heart murmur. As for how congenital it is, family history is one guide. Although I had known nothing before my surgery was scheduled, eventually, I learned that one of my Mother's brothers had a valve replacement. A little later, I learned that my Grandfather had a failing heart valve at the time of his death (49 years old). My surgeon said this was a good indicator of some type of genetic component.

Before we are diagnosed with heart problems, our doctors check normal things and as long as we are healthy and report living normal lives, they have no reason to check for problems such as a failing valve. I am finding that once past recovery from surgery, my doctors are a lot more vigilant today looking out for anything that might indicate change.

You might also call your surgeon's office and ask them to recommend a local support group. In Tulsa there was none at the time of my valve replacement but I would be surprised if there are not dozens of them in Los Angeles. Since you think highly of your surgeon, if you still do not have a cardiologist, ask him for recommendations. And, of course, you have us.

Larry

 

[Heart2.0]

Thank you Mentu!
There are no groups at Kaiser P. my HMO. And there is one at UCLA for women but it seems to be
A general education lifestyle lecture not a true support group. I do have an Adult congenital heart dr.
But he has no pts like me so I feel really fearful and insecure about so much day to day. I struggle to
Make each question and appointment meaningful but I am not sure so often. My primary care Dr has already made
A mistake out of lack of experience.( Now I know to run tests by the cardiologist 1st) and I have learned when I get a non heart related surgery , the anesthesiologist needs to be specialed for ACH pts.
Thank you . I hope some other Los Angelians will pipe in.

 

[Rebecca]

Check and see if WomenHeart has any support groups in your area. womenheart.org

http://www.womenheart.org/?page=Support_CANetwork

 

[chaconne]

Heart2.0,

Welcome to the site! I think you will find that this site is a large community of people that you can get to know, and get support for many of the issues you are struggling with. As far as support from Kaiser, I think what Mentu said was very good. I am a Kaiser member as well, and my GP is at the Pasadena office. He seems to know what's going on with me and has acted as a coordinator for things. His name is Dr. Leonard Ramirez.

I'm also followed up by 3 specialists - cardiologist, dermatologist and oncologist (for some previous Melanoma). I've found them all to be very helpful even for areas of health that are not in their specialty. Finding good, caring doctors that you can establish a relationship with over time us a good thing , and there are many good Kaiser doctors in my opinion.

I had Dr. Yun do my mechanical valve replacement surgery. He's great! I enjoyed talking to him and discussing the technical details of valve replacement surgery. Dr. Yun is THE leading valve replacement surgeon at Kaiser and possibly one of the world's leading surgeons in this area, having performed thousands. He is famous among Kaiser doctors as the one they would want doing their surgery if they needed it. He agreed to put an On-X in me even though he prefers working with the St. Jude valves himself. You have a good surgeon.

Blessings to you surgery and I hope to talk to you more soon!

 

[Heart2.0]

Thank you. I sent an email to the link from Rebecca. Every place I have asked, they used to have a group
But.. It seems odd since all of the literature I see from medical journal excerpts to patient advisory,
Mentions depression and mental health. I am not depressed but that doesn't mean I am not sad, afraid
And fearful. So why wouldn't there be a group? Even for a fee? Certainly in LA it would seem likely-
We love to talk so much! I don't need diet or lifestyle tips related to cardiac disease help.( that is all I can find)
But I sure could Use some face to face chat with some people about cardio rehab to regular gym workouts
And even other lady stuff I don't want to post on line!:/ I keep asking my Kaiser Dr to start a group .
He is the head of his dept. sheesh - give it a co pay and an RN.. They do pain Managment groups why not heart?
Oh well. If any one has other tips ? Thanks !!!

 

[Rebecca]

WomenHeart.org also does sister to sister match if you wanted someone to talk to. Did anyone response to your email?

 

[Heart2.0]

I thank you. I never got any responses. I spent a full year following every lead anyone ever gave me. None lead anywhere except ACHA had a younger person call me in a lack luster check in , once a week for a set of weeks. It was.. something. I wasn't able to drive for a very long time so in 2014 there were no supports online or anything. I needed mental healthcare and it was denied by Kaiser. I need at home health care and the assigned nurse didn't show up. And unfortunately my main potential family care person is a practicing drug addict and they took that time to completely check out While on family leave.
it was hell. I survived and I haven't any good tips for anyone usable on this forum.
I made a small donation. I hope other people fare better. I have serious medical trauma after all that and have spent a lot of time in therapy , finally allowed virtually -now due to Covid pandemic of all things. Go figure.

 

[Protimenow]

What area of L.A. are you located in? I'm in the Valley.

I had my valve replaced in 1991, so I'm not sure how much help I can be when you have a new issue - but if you look at the many forums I've been involved in, you'll see that I've been involved in a lot of forums, and my cardiac roller coaster ride doesn't seem to have resolved itself yet.

The women's group sounds like a good idea, if you can get involved.

I was going to mention the possibility of leaving Kaiser - but the message about an excellent cardiac surgeon at Kaiser changed my mind about making that suggestion.

I have a friend who has had Kaiser for many years. One challenge he had was finding a good PCP - he asked some of the staff at his clinic who THEY would want to be the PCP for themselves or their parents and, based on their advice, chose his PCP. You may want to try this.

I MIGHT be available just to talk. You can PM me to see if we can take this to another step.

 

[newarrior]

How are things now ?

 

[Iggy]

Hey Heart2.0, I hear you on the medical trauma and post-op mental health. pm me as well if you feel like it. I'm in Sacramento.

 

[pellicle]

it was hell. I survived and I haven't any good tips for anyone usable on this forum.

I'm sorry it was such a shltshow for you ... the only tips I can give people are:

• use your time wisely in a place like here to ask and listen and evaluate
• be your own advocate
• be well organised with your documentation
• be well organised with your readings and research

Best Wishes

 

[Gail in Ca]

When I lived in the SF Bay Area, I would get together for lunch with a couple of nice women from the valve replacement. We all lived nearish to each other and would have lunch at a restaurant and gab.
I didn’t organize it, being an introvert, but luckily one gal was always the woman who got us together.

I don’t choose Kaiser but pay $251 a month for Anthem as a Medicare supplement. So, I can’t help you with a recommendation. Maybe with research you can find a group to join.

 

[Protimenow]

I'm still in the Valley, and you can send a private message if you want to communicate with me,

My part C medicare coverage was an HMO, and gave me a really hard time about seeing any doctors out of their network - even if the doctors IN network didn't do what I needed or were located 10 or 20 miles from me.

I'm on a Blue Shield plan - about $250 a month - but I see my electrocardiologist without them complaining.

It's a lot of money -- but worth it if you can afford it (I really can't)