My Atrial Myxoma Experience

What's a Myxoma you ask? Never heard of  it? Me neither ... until February 27, 2020!!
Oh, by the way, this is Alysen 😀.
I feel compelled to tell my story because it's such a Bizarre thing to happen, and this on our business blog, not only because my sudden absence and subsequent temporary closing of our Etsy shop had affected outstanding orders and people favoriting & following the shop, but also because it is something that I think people should be aware of, since it could very well be a Silent Killer!!!
I'd like whoever reads this to get a preventive Echocardiogram and/or EKG if possible, be alert and listen to your body, research some articles about Myxomas and Carney Syndrome because anybody could be a victim and not know it until too late. I realize that I was very, very, very lucky that I only had breathlessness as a sign. I was a walking, talking time bomb for who knows how long!!
Note: This is the first part of a long post and please feel free to pass this info along to friends and family in the interest of public knowledge!

Some backstory ... As many of you know, I had been in the U.S. until mid-January of this year, helping one of my sisters to cargive our 96-year-old mom. She passed in November in a hospice facility, where sis and I spent her last 2 weeks almost 24/24 watching over her and accompanying her. Sis promised Mom that she wouldn't leave her and I, in turn, promised Sis 3 years prior that I wouldn't leave her. ...

One morning around the last week in December or the first week in January I climbed the stairs to the main level and had to stop at top for a bit and catch my breath! For 3 years I'd been doing the same thing and sometimes many times a day since my room and atelier were in the basement.

It continued like that for the next 2 weeks and even after I got home in France. After minor efforts or while just walking, I needed to stop often to breathe deeply and catch my breath. I was also dizzy when standing from a sitting position and even sitting up in bed too suddenly. I wasn't fatigued and went about business as usual, and thought maybe I needed to go to the gym. Luckily (and you'll see why I say luckily further down), I only did that once or twice since Mom's passing,because many orders came in for jewelry and I wanted to get as much as possible done before leaving.

So ... I got home on January 16 and was still feeling breathless and over the next month became more and more listless and tired. I didn't get on my treadmill even though I thought that since my heart was a muscle, maybe I hadn't been making it work enough because I hadn't done any cardio exercise nor weightlifting for several weeks. But then again, I had some jewelry orders and that took precedence. I know, I know ... any little excuse is good to delay exercise :) ..

Finally on February 19 I went to see my general practitioner who listened to my breathing and heart with the stethoscope like they always do and he recommended that I see a cardiologist. He asked if I had one; "No, I've never had the need and I'm hardly ever sick" I said. I made an appointment with one in his building and April 11 was my date.

Since I felt so crappy and I was listening to my body, I decided tout de suite (right away) to find another cardiologist and made an appointment for the next week, February 27. That week was long & tiring ... I remember I went to the grocery store and had to rest about every 10 minutes. I was walking slowly to not have shortness of breath but still had to take time outs.

I went to the Cardiologist who's only about 10 minutes from my house. He gave me an ECG (EKG) and then proceeded to an Echocardiogram. After about 5 minutes that seemed like 15 he asked if I had driven there by myself; "Yes" I said ... He asked where my husband was; "At work (in the next city over)" I replied.

Calmly he told me that I had a tumor (most likely benign) IN MY HEART!! More precisely the Left Atrium and descending into the Mitral Valve. Then showed me on the screen though I was more amazed at seeing my heart pump and move and barely noticed the blob that measured 6cm x 3 cm. About the size of a large lemon!

After doing my 'research' after my operation, I found out that this type of tumor is rare and sometimes genetic (Carney Syndrome). And most people never know they have it until an AVC, Heart Attack or Embolism!! Then either they survive and it's found upon exam or they die and an autopsy reveals it! **More about my thoughts on this at the end of post.

While I called the hubs who couldn't leave work because he was alone there (isn't this an emergency?!) the Doctor went to another room and made some calls. He told me I needed to go directly to the Hospital, get a wheelchair in the lobby and go straight to the Cardiac Unit they're expecting me. So then Daughter & Son-in-Law came to get me and did what he said ...

After a few exams right upon my being given a room (88 if you're wondering) a doctor came and explained to me that I had an Atrial Myxoma and I was basically bed-bound. Unbeknownst to me at the time the reason was that I could have either an AVC or Embolism or Heart Attack AT ANY TIME and they didn't want me to bring it on!! I must admit that I wasn't yet on an IV and did get up and go to the bathroom Thursday & Friday. Then a nurse came in and saw me up and ordered me into bed and firmly told me to Stay Put, doctor's orders :).

Friday about noon, 2 Heart Specialists came to see me (after consulting with each other and other doctors) and announced that I would be having Open Heart Surgery on Monday by one of them, unless an emergency arose (meaning avc, embolism or heart attack) and then I would have to have the procedure on the weekend. They didn't know how long it had been growing nor at what rate since I never had a reason to get an Echocardiogram ...

In the 28 years that I've lived in France, this was the first time I had any experience being a patient, except for 2 births which was different) and much less a cardiac patient! It was a rather pleasant learning experience and I quickly learned some medical terminology & names of various procedures, doohinkys, meds & also that a bedpan is called a 'basin' and a urinary catheter is called a 'sonde'. I did have a 'catheter', which is a plastic thing attached to an IV to facilitate blood drawing. My veins are small, they roll and sometimes 'explode' ... fun and challenging for the Nurses, n'est-ce pas??

I had total confidence in my 2 heart doctors since daughter told me that she googled and one of my doctors a (professor) at hospital was a pioneer in these procedures and was the first in France to use Robotic Surgery to take out an Atrial Myxoma on someone a few years prior. Of course, my Myxoma was way too big and descended into the Mitral Valve, which complicated things. Also, the Surgeon who did the operation was his understudy and after the fact, I can say he brilliantly succeeded.

My hospital, Henri Mondor, is a University Hospital and attached literally and physically to Créteil University which is a well-known medical university. Sister-in-Law and Brother-in-Law both did all their years of study there and then Intern and Residencies at this hospital.
Just the top portion of my new "Tattoo", about 6 weeks after surgery. The Thoracic Cage takes about 2 months to repair.
Won't show it all, I do still have a little modesty left ...

I won't go into all the pre-op exams & stuff except to say that my last meal the eve before was a Burger King hamburger & fries that the family 'snuck' in! I jokingly called it my Last Supper and the family didn't think it was very funny!!
They had drugged me just a little the morning of the operation and I was wheeled into a large room with about 8 other patients. I remember thinking to myself "Ahhh, this is what animals must experience before going into the slaughterhouse". I was pretty serene even after being in the block and getting everything hooked up. I looked at the clock and it was 8:40 a.m. The anesthesia must have worked right away ... next thing I know I was in Reanimation and my daughter, her hubs and my hubs were clustered around me. In France, Reanimation is closest to what we might call Recovery & ICU, but here ICU comes after being in Reanimation. I looked it up and 'Rea' is where one is still on oxygen and meds are stabilized before going into ICU. At least that's how it was for me and I assume for all heart operation patients and possibly any operation.

My surgeon put a ring around the Mitral Valve and noticed that the Tricuspid Valve was defective also and that got a ring too! Now, were they defective before the tumor formed? Since I was young? He did say that after healing, my heart would be stronger than it had been my whole life. I've started a list of questions to ask my Surgeon when I see him on June 11th.
These bruises are leftover from Hospital a few days after discharge.
From various IVs and needle punctures to draw blood from my difficult veins.
Anyway, due to some minor complications (well.. major according to Nurses and Doctors, but they were eventually resolved) I was in Reanimation 2 days longer than usual; ICU for 3 days and moved to my previous room (88) six days after my operation. My 7 assorted tubes (2 in neck, 5 drainage tubes in abdomen) were removed before leaving ICU. Yes, I still felt serene, just getting through 1 day at a time and not reflecting too much on what I just experienced :).

My 'sonde' came out 1 week after the operation. The Professor (Dr. cited above) came in that morning with about 8 students in tow (some of whom I recognized as my caregivers in pre-op exams or my 'nurses' or aides. If you've seen any TV series about hospitals and med students, it's exactly that! The Prof grilled them on my state and procedures to follow (Yes, I felt like a guinea pig but just smiled and listened intently). Then he saw that I still had my urinary catheter in (the day before they wanted to see the output volume for 24 hours) and proceeded to order its removal and demand why was it still there 7 days after surgery, etc.
YAY! I was finally (almost) FREE and spent my last day at the hospital cautiously sitting up on the edge of my bed, shuffling to the bathroom to wash and (you know!). I had lost 8 kilos (about 17 lbs) after 12 days of being bedbound and not too hungry.. and was terrified seeing myself in the mirror! My cheeks were sunken in, my skin was hanging on arms, my leg muscles seemed melted away. I asked my daughter and son later if they thought I looked like a skeleton then and didn't want to say anything and they played it down, but I'm sure they did.

Eight days after surgery and after my last IV came out, I was transferred to a Cardiac Reeducation facility nearby the Hospital. It was a great experience, everyone was patient, kind, caring and professional! I will talk about that in another post and I hope you'll read it. Just follow this blog if you want to be notified.

** As I said above, I truly feel extremely lucky to have survived such an ordeal. Since the doctors can't know when my tumor started nor how fast it grew and I had no previous symptoms that I can pinpoint, my heart was a time bomb. In the Spring/Summer of 2019 I had a gym coach and really worked out hard and also did the treadmill a few times a week for 30 minutes. Was my Myxoma silently growing and plotting? Later, in Rehab (really Re-education) someone said my Mom was surely watching over me ... the same as I watched over her for the past 3 years 💝💝.


  1. So glad you made it through the fire! <3

  2. That was supposed to be a heart!!!

    1. Why ... Merci 'muddy'!! I do recognize that symbol as a heart, and only because one of my customers explained it to me :) ... à bientôt ::::

  3. Oh man,first off sorry to hear about your mom ��. Second,glad everything went well with your surgery. My mom just passed away on October 29th 2019 from a heart attack due to a bad heart valve. This happened back in August 2019,and then a stroke in September 2019. It was very hard watching her go through everything she did. ��.
    Well ,hope everything continues to go well with your recovery.
    Take Care- Ttyl. Keith.

    1. Thank You Allyson (or Keith?). Sorry for you and yours on the loss of your mom. I hope you're all getting back to normal. Mine was 96 and really wanted to go. If you read some back posts here I talk about it. Your Mom's experience is exactly why I posted mine, most people who may have a tumor, heart valve problem or anything to do with the heart have no idea until the dreaded AVC, stroke or embolism!!
      Just think if we all got Echocardiograms systematically at a certain age. Even that Carney syndrome is genetic and people should be aware. I am 64 but how long had that been growing? How long did I have the valve leaks? This is why I say I'm so lucky because I've been active my whole life and considered to be in good health!!


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