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AmyMcD85, September 21,  2020  7:35am EST

Valve replacement

Hey there, I'm Amy, 35y and have a congenital heart valve issue (Aortic Regurgitation). I had open heart surgery when I was 7 to remove some tissue blocking the valve and up until now havent had any issues. Last year was told by my cardiologist I might be looking at having the valve replaced and when I saw him in July he said it was time. He referred me to a surgeon but after the surgeon reviewed my CT scan, was not comfortable performing the surgery. He has referred me to UCLA. I live in Idaho and had been planning on having the surgery in Boise (only 2 hours from where I live) Now im looking at an out of state surgery. Im overwhelmed.  Any words of advice regarding insurance,  travel, anything is helpful. This is all new to me. It took about 6 weeks for my insurance to approve my CT scan so I'm concerned about the length of them approving an out of state procedure.  The referral was sent in about 10 days ago and I still haven't heard from UCLA, suggestions on getting the ball moving? Or are these time lines normal.  I feel at times like I'm going crazy cause its always on my mind but yet I can't plan anything.  Again, any advice is going to be helpful...i just feel lost. 

6 Replies
  • NewPacer73
    NewPacer73, September 21,  2020  5:25pm EST

    Second only to cardiac issues, are insurance issues. Good news is Medicare is national for us old folks, so I had my first open heart at Mayo where they did the surgery I needed more often than any other place. Traveled over 1900 miles to the tundra in Minnesota in December. Well worth the trip though. The way I worked it is I had the hospital doing the surgery do the leg work with insurance. They know more about handling them than most patients. If you want to go to UCLA, talk to them to see if they can take that burden off your shoulders. If your insurance is a common company, ask them to deal with all those codes and intracies of the paperwork to get approval. I bet they can do it for you, or maybe I truly hope they can take that off your plate. One day in your lifetime, this insurance mess will be figured out. It's so complicated and I personally believe a lot of the expense is due to so many having stovepipe insurance companies that don't talk to each other. One day there will be one patient centric portal that all doctors go to and provide input, read what other doctors are doing, etc. So, my hope and prayer for you is someone in UCLA can do this for you. If your surgeon knows a particular doctor you should see, that maybe your surgeon knows from med school, that also helps a lot.  My cardio said "if you were my wife, I'd go to Mayo and see Dr. ___." That's all I needed to grease the wheels. I bet there is some reason your surgeon thought of UCLA and hopefully he can help grease the complicated process of insurance coverage. Keep me posted. You have enough to worry about and could use some kindness now. Hugs.

  • AHAASAKatie
    AHAASAKatie, September 22,  2020  9:56am EST

    Good morning, I can see how you are overwhelmed. This is a lot to take to manage. I would call UCLA and see if you can figure out what happened to the referral. And, I agree with Newpacer73, UCLA should do the legwork for all of the approvals, once things begin to start moving. 

    Please know that we are here with you! Best Katie

  • TomBroussard
    TomBroussard, September 22,  2020  11:05am EST

    Hi Valve replacement,

    As one of the other replier said, insurance is a huge issue made worse by being in the middle of one's own health issues. When I had severe aortic stenosis, I arrived at my local hospital without knowing anything about my heart. 

    I thought (and two doctors thought) that I was having lung issues. But the ER figured it out in an hour and knew I was in trouble. Plus, they told me that they couldn't do the TAVR procedure and I had to be transported to another hospital two hours away (short compared to your trip to UCLA!)  to get TAVR.

    The insurance people at the hospital were incredible kind and explained the in's and out's that they would do on my behalf. The ER doctors did offer that there were others (realtively close) hospitals that could do TAVR. I told them that I had no idea who was the best doctor and hospital and they said, "OK, then THIS hospital and doctor is the best."  We went there and clearly, he is the best in the field.

    That is always the right choice...even if it is further away...I had my open heart in Boston 9 years ago (I lived near Boston at the time) and my hospital roommate came from Florida. I asked him why so far away, and he said, this doctor is the best...Good luck with your journey...I know it is tough...take a big breathe, know that you have friends like us, and know that you will get through step at a time...take care!  Sincerely, Tom B


  • NewPacer73
    NewPacer73, September 22,  2020  12:26pm EST

    Call UCLA today...usually see what the status is and if they are doing the follow up work for you. I never heard from Mayo that I was covered But, just to be sure, I got on their patient portal and asked and they said we were all set. 

    Then tell us the status. We care. 

    Not a meditation nut, but Mayo sent me CDs to play to relax during the weeks before surgery. I  strutted on into that surgery room on my own with confidence that day, climbed up on the table and am really doing well today. I never believed in the stuff, but I'd bet the farm they have stuff for you to try too pre surgery.


  • BasinBoy25
    BasinBoy25, September 22,  2020  7:52pm EST

    Hi Amy,

    So sorry to hear about your troubles.  I want to add my best wishes for success and share some input.  Last fall (2019), out of the blue I found out I had a bad bicuspid valve (from birth) that needed to be replaced.  I wasn't over-joyed with the medical options here in my hometown so I looked elsewhere to.  You said you are about two hours from Boise, but I am not sure which direction.  I am about a hour south of the Idaho boarder in Northern Utah.  So if you are east of Boise, this might be a much closer option for you than UCLA.  I found good, experienced, well respected surgeons in the Salt Lake City area at both the University of Utah Hospital and the Intermountain Medical Center (IMC).  I know the IMC has surgeons who specialize in pediatric and congenital heart issues. (I ended up having my valve replaced at IMC.)  In addition, I consulted with the Mayo Clinic and the Cleveland Clinic remotely.  They both have pretty good second opinion services which can be done really quickly remotely.  You just comlplete some forms and send in scans/imaging.  These remote second opinions and meeting with the two institutions gave me fantastic guidence on what to have done and where.

    I am in no way saying don't go to UCLA.  Just letting you know that if you are out toward Twin Falls, Idaho Falls, Pocatello and that direction there are options within a couple hours drive to consider.  (I think Intermountain Healthcare or IMC may even have facilities in Eastern Idaho.  They  migh be able to provide you with a service link to the IMC in Salt Lake.)

    Anyway, just to let you know there might be a closer option than UCLA for you--just a thought.  If you want any contact information, I would be happy to provide.  IMC had a pretty good website that lists the many different heart conditions they treat if you feel like surfing the net.

    Sorry if this was rambling, I know what you are going through and the insurance piece just makes the puzzle harder.  However, as others have said, the surgeon's office/hospital should take care of all the insurance authorizations for you.  Mine did.  They deal with that kind of thing all the time and know how to get it done.  I never had to deal with the insurance company once for the pre-op, surgery, home care, rehabilitation, medications, etc.  If possible, don't stress about that.  People in your surgeon's office or hospital are getting paid a pretty penny to take care of all that.  All you need to worry about is mending and taking it easy for a few weeks after the surgery.

    I wish you all the best as you search and have your operation.  I can tell you we are blessed to live in a time and place where there are many dedicated people out there to help us fix our boo-boos.  They do it every day and they know what they are doing.  Good luck is finding the right place to have your owie repaired.  If there is any questions or concerns I can help with, just reply!

  • AmbassadorB
    AmbassadorB, September 22,  2020  8:00pm EST

    Hi Amy !

    You have already received a number of excellent comments and suggestions and I wonder if your Cardiologist might be able to help you get through the red tape and delays?  Or, he may have some suggestions.

    Don't feel lost!  You're on the right (smart) track and we all wish you the best!

    Ambassador B    Bernie

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