About Me (In My Own Words)
UPDATED January 14, 2026:
I was diagnosed at age 26 with atrial fibrillation. That was 38 years ago! Over the decades, the a-fib became permanent, progressed into massive bi-atrial enlargement, mitral valve leak / regurgitation, tricuspid valve leak / regurgitation, a Left Bundle Branch Block, and congestive heart failure. The valve issues were first diagnosed in 2002, almost 24 years ago.
I've been on Digoxin and Atenolol since that first a-fib diagnosis and carried on a very active, normal life with a full time 'day job' and a career as a professional singer-songwriter-recording artist.
In 2018 the many heart issues increased in symptoms. My Kaiser cardiologist maintained that none of my conditions were "severe enough" to warrant any look at valve surgery. He did not hear me when I described my worsening symptoms, my many trips to the ER from chest / upper back pain and other heart-related symptoms that I KNEW were not 'normal' for me. He continued to "watch and wait" even though echos and TEE tests and other data showed progression from 'moderate' to 'severe,' with fluctuations.
Because he insisted that the data did not support my symptoms, I started to doubt MYSELF as well, and gave up telling him about my symptoms or even informing him about my trips to the ER. I knew that I would get the same answer every time....'watch and wait.'
Finally, last summer 2024, out of sheer desperation and severe depression (after having to go to the ER while on vacation in Hawaii), I found the Cedars Sinai Virtual Second Opinion program.
I was accepted as a patient by Dr. Joanna Chikwe, (https://www.cedars-sinai.org/provider/joanna-chikwe-2111380.html) via the Virtual 2nd Opinion Program.
The wonderful staff in Dr. Chikwe's office told me, when I was accepted as a patient, that if my Kaiser cardiologist would refer me to Dr. Chikwe, that Cedars Sinai would accept my Kaiser insurance. I was elated!! But it was short lived. Because even though my Kaiser cardiologist "respected" Dr. Chikwe and her report , he refused to refer me to surgery, saying that HE did not think (again) that I was "severe" enough to warrant surgery.
I appealed to Kaiser Permanente so-called member services department, gave two verbal testimonies to a committee, backed it up with many many studies that advocated for surgery in my case, and even sent in Dr. Chikwe's report / recommendations for surgery. Kaiser Permanente also DECLINED to refer me to surgery.
One last interesting Kaiser experience: the last test I had at Kaiser was a Transesophogeal Echocardiogram. As I was about to get on the table for the procedure, my cardiologist asked if it was OK for two surgeons, who were starting a new valve surgery clinic at Kaiser SF, to observe, along with several students, my TEE, as my case would be interesting for them to observe. I was really taken aback and surprised and just focused on getting through the TEE procedure, so said 'OK.' It didn't really hit me until later that day that my doctor would not refer me for valve surgery, but thought my case was a good one for teaching future valve surgeons!! I thought it was pretty ironic, I must say.
One last (complaint) about Kaiser, is that in 2019 I had an emergency appendectomy. On my FIRST trip to the ER in excruciating pain, the young female doctor (who was wearing shorts, a Tshirt and running shoes) sent me home, saying I had the stomach flu, and take some Tylenol. She never touched me. Two hours later I was back at the ER and they rushed me into surgery. On day two of my recovery, I started to experience trouble breathing, could not lay flat, and had chest pain. I told my nurse(s) about it, they told me "that's normal after surgery." I started to get scared, and finally flagged down a young male nurse (I think he was a nurse) and begged him to help me!!! He called for a doctor (a pulmonologist, I think) who immediately had me transferred to the Telemetry floor, as I was in acute congestive heart failure by that time. Apparently, they overloaded my fluids, which caused the CHF. I was on the Telemetry floor for three days, and IV drugs to cause me to release 17 litres of fluid from my body. I had to take out a payment plan to pay back Kaiser for that extra 3 day hospital stay, as my plan did not cover some of it. It took 3 years to pay it back.
I tell these stories to illustrate that even IF my cardiologist relented and referred me to surgery at a Kaiser facility, I would not have allowed them to do it, as I had lost my faith in their competence. Sorry to say.
It all turned out to be a blessing, though. I left Kaiser in December 2024 after 15 years, got Blue Shield (quite a bit more money, which is a struggle as I am on disability now) and miraculously have the renowned Dr. Chikwe and her team at Cedars Sinai to perform this surgery!!
The surgery will be a mitral valve repair (or replace...to be determined), tricuspid valve repair, left atrial appendage closure, and a Maze procedure (which may or may not help with the a-fib since I've been in it for so many years, but we're going to give it a try. I am very excited about this as it would be amazing if I could be in sinus rhythm.
I'm preparing myself for this surgery, which took three years to get a doctor who actually listened to me. I have a lot of emotional, spiritual and mental 'recovering ex-Kaiser patient' work to do, to let go of the fear that was instilled in me with my Kaiser experiences.
But, I have the utmost faith in Dr. Chikwe and her wonderful team. I met them two days ago for all my pre-op tests and appointments, and they are so positive, caring, empathetic...it's so refreshing and reassuring, and I know I am in good hands!!!
I'm so looking forward to feeling better, having my energy back, and getting back to my usual activities that I miss so much!!!
September 12, 2025:
Finally. I have found a doctor / surgeon who not only answered all of the questions that my Kaiser cardiologist could not or would not answer or explain, but who has given me hope for a preliminary plan for my heart surgery.
I feel hopeful for the first time ever, after being told for years that nothing could be done, that I would "have to get worse" before any discussion of surgery. Was told that "no one would operate on you" at this point. Was told there was nothing to be done about the a-fib, and so much more. I was a told that "we don't see pain in patients with your condition." And so I thought that the chest pain, the upper back pain was all in my head. It was really depressing, demoralizing and frustrating.
I'm so glad I contacted the "Virtual Second Opinion" at Cedars Sinai in Los Angeles!! I am very eager to finally leave Kaiser, get a better health insurance plan, and get the care I need.
I'll try and give updates as I embark on my mitral / tricuspid / a-fib / left atrial appendage / pacemaker saga!
2024:
I finally had an in-person appointment with my cardiologist a couple of weeks ago.
He explained that my mitral valve regurgitation status is moderate but is calling it "eccentric mitral regurgitation," and that I need a transesophageal echocardiogram (TEE) which I will schedule for July.
Apparently nothing can be done to stop the enlarging atria (which is due to the permanent a-fib), and it's obvious I will need some sort of surgery on the mitral valve. (I do have tricuspid valve regurgitation, too but apparently it is not a worry?).
What the mitral valve surgery will entail is yet to be discovered pending the transesophageal echocardiogram (TEE).
I have been in (permanent) a-fib since being diagnosed 35 years ago (at age 26). have severe biatrial enlargement and a left bundle branch block. Have been in congestive heart failure for a while and the lungs are congested and I have that cough. Next week I am going to give in and accept whatever treatment they tell me I need for my mild sleep apnea. I finally got the message (duh!) that the sleep apnea really needs to be controlled with all of the heart issues.
I am experiencing extreme fatigue and I think the coughing is exacerbating that (I am so tired of coughing!). My chest was hurting but after a remote Reiki healing, that went away for over a week, which was amazing!!
I feel weird about all of this; I can't really talk to my daughter (she is 33) because she gets so upset and worried, and my husband is very loving of course but I really don't like to complain too much about my symptoms.
So I am glad to have the opportunity to write in this forum, knowing there are others here who understand. Thanks for letting me vent!
More Info About Me & My Heart
More About Me
-
I am from:
Santa Rosa, CA
-
My surgery date is:
January 20, 2026
-
I was diagnosed with:
Mitral Regurgitation
Tricuspid Regurgitation
Atrial Fibrillation
-
My surgery was:
Mitral Valve Replacement
Mitral Valve Repair
Tricuspid Valve Replacement
Tricuspid Valve Repair
Transcatheter Mitral Valve Repair
Maze Procedure
Pacemaker Implant
-
-
