Aaron's Journal

Kelly Stoll  Hi Aaron. I got called for jury duty a week or two before my surgery and remember the stress it caused. Can only imagine what you must be going through when it's the surgeon! Hang in there and take it slow and steady. Everything will work out. Thinking of you and hoping for the best.

Michael Eichhorn  Great. walked 3 miles this morning. Meeting with surgeon on Monday and hopeful that he will release me.

  I have not had open heart, but a balloon valvuloplasty to a critically scenic valve. For weeks prior I had a sensation of an elephant sitting on my chest. The difference was immediate upon waking. My chest felt much more normal although I still had severe stenosis. Over the next week's the pressures decreased and an open heart was not needed. There was fatigue for several weeks. I went back to work in 4 weeks. I have never had normal blood flow from birth. 2 stenotic valves. Still never able to run.

Lilly Black  Weeks after my valve replacement, I was walking up hills and talking for hours on the phone. Before surgery, I was only able to walk short distances, like 1 block, stop and continue walking. Basically I had to stop exercising. Speaking was causing breathlessness, so I had to cut my conversations. It was bad.....but very soon after surgery, I noticed I had natural pink cheeks, and my stamina was amazing! you will notice the difference.....like you, I was also born with BAV, and never had a good blood supply. You may want to scroll down and click on different people's names to read their journal. You will learn a lot just by reading people's journals. Feel free to read mine....I have many entries over the 3.5 years post surgery. I wish you a great outcome on your surgery....you will feel so much better! All the best, Aaron!

Michael Eichhorn  Hey Aaron, I have a bicuspid also awaiting surgery. I heard the same thing and am hopeful that’s the case. Did you have your surgery already?

Rose Madura  Hi Aaron. Welcome to the site. I was also born with a bicuspid aortic valve. In addition, I had rheumatic fever which further damaged it. Long story short, I feel great now. I did have some complications after surgery (You can read my entries) but it seems I'm very symptomatic so the way my body reacted may not be the way yours reacts. But the important thijng to note is that I feel really great now. So the surgery was worth it. I've always called it my "journey". Keep us posted.

Elaine Phares  I had OHS on Feb 6. Went on a 30 mile bike ride this past weekend. (Mostly flat, but I did it easily.) lifting weights again and running a bit. I got in rehab as soon as they would let me (9 days) and haven't missed a day of it. They gave me the confidence to do things since they were monitoring me. The surgery was not horrible and sleeping got easier every day. Rent a recliner and I also had a back massager that fits in a chair that I had gotten from Bed Bath and Beyond a few years ago. It proved so helpful. I had backaches for several weeks. Let everyone do for you and be pleasant😜. I am 60 and not the fittest person...You CAN do this! Don't sweat the tubes either.

Jennifer McInerney  Hi Aaron. Welcome to the club. I was born with BAV too. I am in watch and wait mode. Gets quite stressful at times. You will learn so much from this site. Great information and great people. Reach out if you want to ask anything. Take care and best wishes.

Willie Radl  Aaron, I just had my bicuspid valve replaced on April 4th (3 weeks today) and I feel great and will begin working from home tomorrow. After surgery I spent 4 days in the hospital, 1 day in ICU, 3 in the step down unit. You'll have some pain but they do a good job of controlling it with drugs, I was mentally there basically from when I woke up in the ICU, but was tired and groggy so certain things are foggy when I think back. Once you are in the step down room, it's basically getting up and doing a few walks around the hall , getting appetite back, follow up tests, sleeping, watching t.v.. After you are released you'll still have pain but they send you home with some drugs to take of it, I think by day 8-9 I was only taking Tylenol for pain. The next week I slowly got better day by day, (watched a lot of t.v., read, went for a few walks). 3rd week was about the same, I felt like I could do a lot of "normal" activities ( grocery store , run errands, go out to restaurants, etc.) . I also feel like my sternum had finally made a solid bond after being split. For me walking is getting easier but if I pick up the pace or go longer distances I start to feel like I need a rest. I started cardiac rehab on Monday and was able to walk 2 miles in my first session (3.5 mph) so a fairly normal walking pace, hope to get to jogging in the next week or two. Obviously everyone's experience is different but so far my recovery has gone much better than I had envisioned prior to the surgery.

Aaron Morgan  Michael, i have not had the surgery. it is coming up . It has been a bit of a roller coaster. I was scheduled to have it done on April 12th and I was told that they wanted to wait and watch 2 weeks before my surgery date. My surgeon recommended a second opinion from the head or Thoracic Surgery at the U of U in Salt Lake City and he recommended that i do it sooner than later. I have a follow up appointment on may 8th to schedule it.

Phyllis Petersen  Each surgeon uses different criteria. There doesn't seem to be one single way of looking at when surgery needs to be done. One thing I do know, is this has to be incredibly stressful for you. Hang in there!

Michael Eichhorn  Hi Aaron, I have a Bicuspid Aortic Valve and a 4.9 cm Ascending Aortic Anuerysm also. No regurgitation and high marks of function and my health from my cardioligist. He suggested that I wait six months and have a ct to see if there is growth. He put me on a 50mg dose of metoprolol. I had a surgeon consult locally and he suggested I have the surgery sometime over the next 6 months. He didn’t seem to be too concerned with waiting. I am leaning toward getting the surgery sooner. I am 6’-3” and my Cardioligist feels that my frame is big enough to not be concerned. I don’t like the waiting. I am going to Duke University on 4/16 and hope to have the surgery soon after. 5 cm is the number for recommended surgery and 4.5 is the bicuspid number. If you are tall, that sounds like waiting is a normal recommendation.

Kelly Stoll  Hi Aaron. A second opinion never hurts. Even after getting a second opinion and doing most of the standard pre-surgery tests, my surgeon wanted to run additional tests before agreeing that it is time. Hang in there and take it one step at a time.

Rose Madura  It's always a good idea to get a second opinion for such major surgery. My long time cardiologist said to wait until symptoms. He thankfully retired. So I got a new cardiologist who recommended that I should not even wait 2 months until I retired. My brother is a doctor and He has a good friend who is a thoracic and vascular surgeon. The both said they were surprised I wasn't told a year prior to get it done. So long story short, I had 4 opinions.

Carolyn Newell  My three surgeons that I interviewed all said that I could wait one, two or maybe three years but any chest pain all bets are off. Well at one and half years since then I've been having chest pain so my procedure is scheduled for April 24th and I'm ready to get this done!!

Julie Nunez  Hi Aaron, good luck with your surgery. My 20 year old son is having the same procedure on April 16. He decided to go with mechanical. What convinced you to go with a bio valve?

Aaron Morgan  Julie, I assumed that because of my age i would get a mechanical valve. Here is why. (Backstory) Every Monday morning a group of cardiologists get together with local surgeons to discuss cases and procedures. I am lucky enough that i had several cardiologists and 2 surgeons that all came to the same consensus of doing a Bioprosthetic valve. Based on my health, age, and activity level they suggested not to do a mechanical valve. I will also be a candidate for the TAVR procedure in the future. My surgeon said that he is seeing Bioprosthetic valves last 15-17 years right now. The TAVR is a minimally invasive procedure and they are not lasting 15ish years. This will give me a good 25-30 years and my hope is that TAVR will be far more advanced than it is now by the time i need to get a second 3rd valve. Based on how and what they will do for me i will be able to have 3 TAVR procedures in my life.

My surgeon will do mechanical valves but it sounded like he is not a fan of mechanical valves and blood thinners.

Like all people on this site, i am sure you have had many sleepless nights and read far too much on the web. This has been many days of prayer, meditation and talking with my wife about it. When i met with my surgeon on tuesday i felt so relieved that he said they decided that a bioprosthetic valve would be the best for me.

Best wishes to your son and you as you go through this.

Civita Fahey  HI Aaron this is very comforting news for those of us who have chosen a bio prosthetic valve with the hopes of a TAVR in the future.. Can you just answer a question if you can, I thought that a TAVR could only be done once, and you wrote that you may be able to have 3 TAVRs? maybe I misunderstood, but, that would be great news.. I am much older than you and am hoping that one TAVR after this original would be it.. and I hope to live a long life! thanks again

Anna Jones  Questions:
Questions for the Cardiologist
What are the results of my tests?
Do I need surgery?
How soon do I need the surgery?
What surgeons do you recommend?
Will you be sending my records to the surgeon?
*** Please give me a copy of the report for each test and burn my tests to CD for my records.

Questions for the surgeon:
How soon do I need surgery?
What type of surgery will you be performing?
How many of this type of surgery do you do in a year? How many have you done over your career?
If you do this type of surgery will it solve the problem for my lifetime, or will I require surgery again in the future?
What are the possible complications of this surgery?
What is your mortality rate for this surgery?
Will I be on a heart lung machine? For how long?
How long will the operation take?
Will you be using LivaNova PLC Stöckert 3T heater-cooler devices?
Has the hospital had recent cases of Mycobacterium chimaera?
Will I need blood? Do you suggest I bank my own blood?
What medications will I need to take after surgery and for how long?
How will my pain be managed?
How long will I be in the hospital?
Will you be making rounds and visiting me in the hospital?
What type of care will I need after I am released from the hospital?
When will I be able to return to work?

Sending best wishes

Helen Daw  Since I did my surgery in a teaching hospital, I wanted to make sure that my surgeon will be doing the actual repair so I asked him. The other surgeon prepared me and my surgeon did the actual repair.

Bonnie Stone-Hope  Hello Aaron,
The above questions are a very good list for you to ask.
I would recommend that you read Adam's book as it will give you a good understanding of the surgery and experience.

Toni Z  Depending on what type of valve you pick, I was given the choice of tissue or mechanical. If tissue valve then my surgeon told me he would decide to fix or replace my root once he could see it. If I picked mechanical then he would replace it to avoid another surgery. It sounds like your needs to be replaced based on your comment. Best wishes to you. I have AVR with mechanical valve to avoid multiple surgeries.