Ashley's Guestbook

Ashley Molyneaux  Hey Lisa! That's great that you picked Cleveland - you'll be in great hands there. I think you made the right decision (at least based on my limited knowledge). My case is a bit complicated so as of now I don't have a surgery date. My cardiologist is saying that my heart is too enlarged to just be a valve issue since neither of my valves are severe (according to him). As a result, they're trying to find another reason my heart is enlarged and they think it may be PVC induced cardiomyopathy. As a result, he wants to try to get rid of the PVCs with the hope that my heart will shrink and I'll no longer need surgery on my mitral valve (due to the valve ring shrinking). However, I still have a bicuspid valve that is pretty narrowed so I'll need surgery at some point in the near future. I've decided to wait to send my package to Cleveland Clinic until I get the results back from the MRI and maybe until I try out an ablation to see if that helps. Since there is a chance that I could change this from a 2 valve surgery to a 1 valve surgery, I'm going to trust my cardiologist and pray that he's right. If it doesn't work or if I'm in doubt, I'll still send my package to Cleveland. I believe it takes about 3 weeks to hear back and the dates are usually 3 months out. Hope this helps!

Ashley Molyneaux  Hey Lisa! That's great that you picked Cleveland - you'll be in great hands there. I think you made the right decision (at least based on my limited knowledge). My case is a bit complicated so as of now I don't have a surgery date. My cardiologist is saying that my heart is too enlarged to just be a valve issue since neither of my valves are severe (according to him). As a result, they're trying to find another reason my heart is enlarged and they think it may be PVC induced cardiomyopathy. As a result, he wants to try to get rid of the PVCs with the hope that my heart will shrink and I'll no longer need surgery on my mitral valve (due to the valve ring shrinking). However, I still have a bicuspid valve that is pretty narrowed so I'll need surgery at some point in the near future. I've decided to wait to send my package to Cleveland Clinic until I get the results back from the MRI and maybe until I try out an ablation to see if that helps. Since there is a chance that I could change this from a 2 valve surgery to a 1 valve surgery, I'm going to trust my cardiologist and pray that he's right. If it doesn't work or if I'm in doubt, I'll still send my package to Cleveland. I believe it takes about 3 weeks to hear back and the dates are usually 3 months out. Hope this helps!

  D-Ribose is awesome, also Hawthorn berries, I use Dr. Sinatra's protocol as well for a couple years now I think may be why I have no symptoms.

Paul Skidmore  Supplements, Hmmm Ok I am very cynical when it comes to these things. Without going into detail we have a television series here in Australia that deals with and exposes false claims made by companies. As many of us know, we do not need supplements, just a well balanced diet. For Example, I see what Ribose is but what about D-Ribose?
Granted many chemicals drugs do wonders for our health however these are medically prescribed by trained qualified "genuine" medical professionals, those that have been to and spent years at medical schools.
There are also many that claim they are doctors or scientists after 12 months of an on line course. Doctors of what, professionals of what? Usually of herbal or holistic medicine? Qualifications given by the company they work for?
Be aware that many of these so called supplements do contain the/an active ingredient however in such a low dose or amount that they are useless. This was proven with one particular brand of supplement where the main ingredient was a prescription only drug however, it could be sold without prescription if its strength was less than 1% or something which was no more than is consumed in a normal diet.
Now I am not saying that this Dr Sinatra is one of them, I do not know him. All I am saying is I do not put any faith or trust in these so called vitamin/supplement medications. Only those that are actually prescribed by my qualified medical practitioner who knows the combination of medication I am taking. If these alternate medications were of any use I am sure my doctor would prescribe them not advertising companies.
Copied from the "WebMD" site in the description overview.

"There is some evidence that supplemental ribose might prevent muscle fatigue in people with genetic disorders that prevent sufficient energy production by the body. It might provide extra energy to the heart during exercise in people with heart disease."

Notice the two words SOME and MIGHT.


Just my thoughts !!

  You are entitled but again you state medical professionals. Those same medical professionals you put all that faith in also prescribe things like Statins and a host of other toxic poisons that are sometimes far worse than the ailment they propose to cure. I take both traditional and holistic . Doctors that do not know anything about holistic supplementation are the doctors who get the kickbacks and are in the pockets of the pharmacies. Doctors prescribe a lot of stuff now days because they go through a protocol from a computer. Have this symptom prescribe this medicine. Doctors are wrong a lot because they are human.

My 1st cardiologist said I needed surgery in 4 weeks or I would be in big trouble.
Said the only surgery that would work for me would be the full blown zipper.
The experts at Mayo said have surgery in 1 to 5 years and we will use minimally invasive.
My surgeon was also very surprised how strong my EF was based on the rate of regurgitation. I told him I took D-ribose and a few other things plus exercise.
He said he read about D-ribose and if I felt it was working keep taking it.

I am still having the surgery in July.

I am sticking with Mayo.

I'd suggest you educate yourself a little better because a lot of holistic meds working. We did not always have pharmacies we used plants for millions of years as our medicine.

Ashley Molyneaux  Bill, thank you so much for this post! I really appreciate you taking the time to inform me. I was taking many of these supplements at one time as recommended by a cardiologist (I know that coQ10, Magnesium, D-Ribose, and L-Caratine have studies proving their potential benefit to the heart). I still take high doses of coQ10. I stopped the others when I didn't see much in the way of results, but maybe it's time to try again just so I can make sure my heart is as healthy as possible. Thank you so much! All the best with your surgery - you will do great!

Debbie Bentley   Yikes . St Josephs is where I'm going . I talked to some people that have recently been there and they were very pleased .

Lise Bowles  Debbie,
Do you live anywhere near St. Joseph's in Atlanta? It's actually Emory St. Joseph's. I am in Florida and even though I am scheduled with Dr. Murphy on the 10 of June I have never met him. He has fabulous qualifications, did the folks you spoke to have heart surgery?

Ashley Molyneaux  Hey Debbie and Lisa - Emory St. Josephs have merged indeed. Dr. Murphy is the best robotic surgeon in Atlanta and is extremely well known nationally. He comes highly recommended. I'm not familiar with the hospital itself, but Emory is ranked #13 for heart hospitals. I wouldn't worry. The surgeon is who matters the most right? I've had nothing but good experiences with Emory St. Josephs doctors and nurses I've met, but I have not had surgery there. I will say I've heard many great things and would not hesitate to go there if I were a candidate for robotic mitral surgery. Hope this helps!

Ashley Molyneaux  Kate - thank you so much! This is so helpful. My poor husband just won't be able to keep up with it all with his full time job and our two toddlers so I'm thinking it'll do us good to hire an assistant, as well. You lucked out with an amazing cook! Massages are a must for me - mentally so I'll be looking into that, as well. Thank you, thank you for the awesome ideas. Only question...how long do you think you'll need the assistant for? Hope you had a wonderful weekend as you continue to recover!

Kate Watson  Like your husband, mine is unable to keep up with everything with his full time job, and his young daughter who lives with us part of the time. Not to mention all the stress this experience has put him under, he was just wiped out after this! I had family stay with me for 2 weeks after surgery which was critical. I thought I'd be ok on my own at 3 weeks but it was way harder than I expected. I still can't do much around the house at 4 weeks due to fatigue and discomfort, and so I expect to have help for at least 2 more weeks. Today I felt up for grocery shopping for the first time but my assistant did the driving, all of the lifting in the store and pushing the shopping cart. It's been a real blessing to have help and have her get dinner made so all we have to do is warm it up when my hubby gets home. Our families live far away otherwise I would have enlisted their help for much longer than I did. Of course the recovery process all varies widely depending on the procedure you have if it's open vs minimally invasive and your current health. There are always people on here who are feeling great at 2 weeks! That has not been my experience- I had a huge surgery though and they said it was going to take me longer because of that. Hope you can get all the help you need! When is your surgery?

Ashley Molyneaux  Thanks Kate! Surgery hasn't been scheduled yet (probably late summer/early fall), but I'm looking at an aortic valve replacement and a mitral valve repair so huge for me, too. Unfortunately, I don't believe I'll be a candidate for minimally invasive unless my heart shrinks and my mitral valve miraculously gets better. I think 6-7 weeks is totally reasonable to have help. Fortunately, we do have family close by so that'll be huge. I'm so glad you had a good plan as it sounds like it's helped you a lot!

Ashley Molyneaux  Hi Lisa! So sorry you are having to go through this. I was in your shoes not too long ago when a doctor heard a loud murmur. So I've actually met Dr Murphy - he's wonderful. He's a very skilled surgeon with amazing success rates. If you are a candidate, I would not hesitate to do robotic surgery with Dr. Murphy. I go back and forth about whether to stay in Atlanta, but I am leaning towards Cleveland because (1) they are the best, (2) I'm not a candidate for robotic and (3) I'm a complicated case with a severely enlarged heart, connective tissue disorder, heart rhythm issues and need 2 valves fixed. Hope that helps! You would be in good hands with Dr. Murphy! Hugs & Prayers!

Lise Bowles  Thank you so much Ashley! I would imagine that Cleveland Clinic would be the best for you, oh my gosh, you are certainly dealing with a lot, hugs and prayers back to you! You look so young in your picture, I am so sorry you are going through all this.....
Were you aware that you had heart problems before your doc heard the murmur?
Thank you so much for the reassurance,
Lise

Ashley Molyneaux  Thank you Lise! It's been a lot, but I'm hanging in there. I am young with two young kids so it's difficult to wrap my brain around the shock of surgery, but as time has passed, I've become much more at peace with the idea of surgery. I just want to be my best self for my kids. I had no idea that I had a heart issue, but knew that I had a heart murmur. I had an echo when I was 2 that came back normal so I've always been told I had an innocent murmur. Most doctor's couldn't even hear it - I imagine that was my bicuspid aortic valve. Then I visited urgent care after my first pregnancy and they strongly recommended I see a cardiologist to follow up on my murmur. RED FLAGS EVERYWHERE. I put it off because ignorance is bliss and I was not knowledgeable about heart stuff. But looking back, pregnancy probably caused the mitral valve issue. At 28 weeks pregnant with my 2nd child, after experience heart palpitations, I referred myself to a cardiologist and the rest is history. :)

Let us know what you decide - I think you would be very happy with Dr. Murphy and his team!

Lise Bowles  Ok, I've made my decision, gulp, it's Dr. Murphy in Atlanta, he said I qualify for robotic and after reading all of the problems people have on this site, I guess I am lucky! Thank you all for the encouragement! My surgery date is June 10.....

Ashley Molyneaux  yay! That's fantastic news. I think you'll be so happy you went the minimally invasive route. Here's to a speedy recovery! Hugs & Prayers!

Petey Bello  Ashley, I agree with Cheryl. There are many on this site that have gone to Dr. Gillinov At the Cleveland Clinic. You are in good hands & your research has brought you to him. Many prayers go with you to give you the strength & peace of mind as you continue on your heart journey. And know that you are not alone. There are many wonderful people on this site to give you prayers & support. May Gods Blessing go with you!

Ashley Molyneaux  Cheryl and Petey - thanks a million. Seriously. There is nothing like having the support of others who have been through a similar journey. It's also so encouraging to hear great stories about Cleveland Clinic and Dr. Gillinov! If it were just my mitral valve, I would almost certainly stay in Atlanta. :) Strongly leaning towards Cleveland, though. Either way, it's wonderful that I have many great options - I'm truly blessed.

Thank you both for the prayers and support. There is nothing like the power of prayer. Also, thank you for taking the time to reach out to me.

Many blessings to the two of you, as well, as you continue on your heart journeys.