Alexander's Guestbook

Hello Alexander from Niagara Falls Canada.  Congratulations on your reversal of your heart condition!  This is incredible news and I’m very happy for you !! 
I’ve also been told I have no other option but surgery in the next coupe months by 2 surgeons but have been searching with the help of my wife for other options.   I read your story and diagnoses and it’s extremely similar to mine.  I do have some major family history from my Grandfather dying at my age, 48, of an aortic dissection from the ascending aortic aneurysm and my father just had his 3rd porcine aortic valve replacement, the first one being at age 38.  I’ve been checked my whole life for this bicuspid valve and they told me I just had a murmur and I was good to go.  Now after further imaging years later they tell me I have a bicuspid aortic valve , moderate to severe regurgitation and an ascending aortic aneurysm measuring 4.9 cm with an enlarged left ventricle.  Only good news here is that the angiogram revealed no blockages in arteries as they’re all clear. I understand the Doctors concern given my condition, family history and the stress in my career but I’m thinking of putting off surgery until next spring 2025 if that’s the route I have to go. I’m extremely active with my job as a Firefighter and do not want to stop doing what I love.    After being warned by surgeons not to lift anything heavy I am taking precautions like not doing any heavy weight lifting routine anymore and as a Captain I’m able to delegate some of the heavier tasks to my crew at a fire scene.  
I was planning on having a follow up cat scan or other imaging to see how things are progressing in the next few months .  I have no major symptoms other than some minor heart palpitations and feeling more tired after some major physical activity than I used to but I attribute that to age and not being as fit as my younger years.  When you were diagnosed did you have any warning signs or symptoms? 
 I’m going to give your daily tea and supplement regiment a try immediately.  I read the K2 article you provided and thank you for that information.  As far as a regular fitness routine I have backed off on a lot of mine since the surgeons warnings.  What does your fitness routine look like?  Also curious if you have any family history with a bicuspid valve or aortic aneurysm? If possible do you mind sharing your aortic aneurysm size and has that shrunk like your LV ?  Thank you for sharing your promising news with others and I would love to hear back from you. 

Angus 

Hi, Alexander! I was wondering if you could help me come up with an improved supplements routine? I had a stroke in 2022 and was on warfarin more or less since then, because at the root of all of it was a rheumatic mitral valve. Just went off warfarin this week at the three month mark after getting a new tissue valve. Almost two years of vitamin K antagonist plus post stroke and post sternotomy physical restrictions were not kind to my bones, so I am going to need calcium supplementation. I am already taking many of the supplements on your list (vitamins K, D, E, and A, and turmeric). Is it your understanding that all of your supplements are working together and that you need all of them? Or do you take each of them for a specific purpose? Many of them seem to have overlapping benefits. It makes sense that K and D work together to direct calcium to the bones and out of the arteries. Codependencies of the other supplements are not as clear to me. I really want to keep my arteries and new valve clean as long as possible. My blood pressure has always been very low, so if the primary benefit is lower BP, I probably should avoid it, but maybe I should if it helps the others work effectively? For you, is it all or nothing? We are at very different point in life, so obviously we need different things, but I am interested in hearing how you came up with your list, since you are experiencing very good results. Any tip you can offer will be greatly appreciated!

Hi Alexander, I am fascinated by your results. I didn't realize reversal was possible - I was told things only get worse, never better. I am going to try implementing the same changes you made over the next few months and see if my next echo shows improvement : ) It is worth a shot - I'm 37 now (almost 38) - if I can make it to 40 before I need surgery that would be great. 

That is marvelous news about your dramatic improvment!  What did you do, or not do, that you think contributed to the improvement?

In a cautionary tale, my 2021 mitral valve repair status went from moderate leakage again in January '23, to mild leakage in April, and then to severe more recently.  My unasked for advice? Let the medical establishment keep a good eye on your status and keep up with the follow-up echos or other assessments.

Take good care, best of luck, and many blessings to you on your heart's journey.

Alexander, What do you think is the reason for the reversal? Too late for me as I go in for surgery in 3 weeks but I would like to know how to stay good into the future. 

Hi Alexander! I just found this website for friend whose husband is undergoing surgery on tuesday (6/27/23). My friend Katy doesn't know where to turn for support as a spouse and her husband Kyle hasn't said it in words, but I'm sure he would benefit from support as well. He is still in the super scared phase (only finding out about this 2 weeks ago). Anyway, I was hoping to connect them to someone who has severe stenosis and has gone through the surgery and recovery process. If you're available, or know someone in your family who feels like exchanging a few emails that would be wonderful. Good luck to you and much happiness!!

Sarah 

Hey Alexander. 


I'd love to connect. I'm 39 years old and also have severe regurgitation. I'm torn between a Ross and Mechanical but leaning mechanical. I'd love to hear where you are at with the process

Hi Alex ,
I prefer to have mine tested at the phlebotomy dept at the local hospital in the u k .
My i n r is stable now . I usually go once a month on a day I request / prefer . 
It doesn ‘t cost me anything . 
I hope someone will be able to provide you with the information that you ‘re looking for . 

Hi Alexander ,
After I had my o h s surgery , I went back to the hospital for an echocardiogram as an outpatient . A trip back to the city . The technician and a dr.he had called into the room both told me that me that new heart valve was leaking . All the time they were chatting together about me , the fire alarm was going off ! I had two long weeks of worrying .
I was rescanned two weeks later and that technician said it was fine . My heart surgeon said the echo results were fine too .
Try not to worry . I have been fine and my heart surgeon was correct . Different people do see different things it would seem . 

Hi Alexander ,
You could ask for the opinion of a dermatologist and then you will have a better idea about skin conditions which might or might not affect you . 
I know you sound to be getting bogged down with everything but this community will support you and listen .