amy . posted a note for Adam that says: Hi Adam,

Thanks for creating this website. It is a tremendous resource.

Amy

Jan McClain posted a note for Adam that says: Adam, do you know any heart surgeons at UCSF, or have any other contacts there? If there is anything you can do to help Barbara Laurie now, or advice you could give her, we would all be very grateful. She has been treated abominably by UCSF schedulers, and deserves a personal apology from her surgeon, the cardiac surgery department chairman and the hospital chief of staff. And she should have her surgery without further delay!

Michele McMinn posted a note for Adam that says: Hi Adam. A few weeks back your news letter had an update about the FDA approval of the Perceval valve. I would like to know if it is possible to get one if you have an aorta aneurysm ?
Michele

Robert Frederick posted a note for Adam that says: Adam:

Your video of Dr. Lewis was one of the main reasons I got interested in Dr. Lewis and Princeton Baptist. It is a great video.

After being there, I can say that they have a wonderful program at every point. Since they have high volume of surgeries their skills are excellent. Because it is a relatively small hospital the doctors, nurses, and staff all have great relationships that allow them to provide the best patient care.

Thank you also for all of the love and care that you express for all of the people in this community. It meant a lot to me.

pino correale posted a note for Adam that says: Hi Adam, i would like to thank you for the brilliant idea in building this important blog. I have gotten a lot back since i have joined. Great human beings at ""heart"". Now i have noticed that whenever i tune in your blog, the page comes out differently than before. Before i was able to add a comment right away, in the last few days i see a new format, where you have to comment directly at that person. Did you just change the format or am not in tune with everything. Thanks for taking my question and continued success.

Steven A Husted posted a note for Adam that says: what a heart brother you are i can not thank you enough for your book and this web site what a blessing you are to the heart valve surgery community we all love and pray for you to keep up the very good work you are doing yea yea heart brother and keep on ticking

Jeanette Davidson posted a note for Adam that says: Wow!, Adam that's really exciting! I feel so honored that you want to share my story! Thank you for your support during this journey ! ❤️ I believe I've done so well because I received such support from the site thanks to you .

Jeanette Davidson posted a note for Adam that says: Thank you Adam for helping , guiding and creating such meaningful resources for all of us! I will be forever grateful!❤️

Tammy Pilcher posted a note for Adam that says: Adam, thank you so much for including me in your "Patient Success Stories"! I really appreciate all of your kind words! You are the "Original Rockstar" for writing your amazing book and starting this amazing website! I'm just trying to give back a little of the support and encouragement that was so generously given to me by you and the other wonderful people in this super community! Thank you with all of my grateful heart! God bless you!

Jackie posted a note for Adam that says: Hi Adam,
Please review the latest guestpost for Dan D, written by Fadir? I think it should be removed if possible. Thank You🌸

Summer Lane posted a note for Adam that says: Adam, I've seen Ross procedure on here a few times but I have NO idea what it is. Can you explain it to me.

Also, has anyone here had any issues with their glue not falling off and having to have it removed?

Kristy f posted a note for Adam that says: Adam, my husband was originally diagnosed and being treated for cardiomyopathy. I got him a second opinion for this and discovered problems with the valve besides the thickened muscle. He will having surgery Tuesday at the intermountain heart institute in Murray. .. I hear they are very successful and his surgeon stephen clayson is great. .my husband is now at the point where its hard to catch his breath and he says he he's a lot of pressure on them this week.

Kristy f posted a note for Adam that says: Adam, my husband is going in next week to try and repair his mitral valve, which the Dr says is not a typical case. He also will be having some thickened muscle cut out that is causing some obstruction. .. I guess I'm just grasping for any hope and advice you can give me. .. I'm scared to death for him. . We have little boys as well. My husband is our while life. He's 36 and works hard on the family orchard, but he has declined fast the last few months. Kristy. Pickleskk@msn.com

Dave Van Buren (DVB) posted a note for Adam that says: Hi Adam! Been a while. Just at 4 years post OHS/MV repair and finished my annual walkabout in celebration. A technical question regarding the journals: it used to be possible to embed html and I made use of that in my journal for links, photos, graphics, and so on. The new formatter just presents verbatim the html instead of, well, formatting it. So it doesn't display nicely. Rather ugly actually. Got any ideas for how I can edit my old journal entries to format properly? Thanks -- DVB

Ben Schraegle posted a note for Adam that says: Hello Adam! Ben Schraegle here; it has been 4.5 months (Dec 17,2014) since my heart valve surgery; had my mitral valve and aortic valve surgically repaired by Dr. William Brinkman here in Plano, Texas at The Baylor Heart Hospital. I have been doing great; even ran a 5K two weeks ago! Well, I went in for a cold last week and my GP took my vitals (he was the one who discovered my heart murmur) and my heart rate was 150. They took me over to the Baylor Heart Hospital ER and it was discovered that I have Atrial Flutter. Last Thursday I had a TEE and then my heart was shocked to get my pulse back to the normal zone (60-90). I am now on Xralto (za-rall-to) and will be until I go in for an "ablation." My cardiologist, Dr. Charles Levin here in Dallas told me that this is just a "bump-in-the-road." You know, I thought I was done with this "stuff" and now this; your comments and feedback please Adam, I appreciateit and what you do for all of us! Regards, Ben Schraegle

Joaquim Cimoes posted a note for Adam that says: Adam,
Thank you for your attention, this site was very important for me.
Hugs from Brazil.

Adam,

Is there a way to un-follow a member of the community. I keep getting emails that a member has updated his journal and there has not been an update. And it's not just one email at a time, they come sometimes in 10 or more at one time. I assume there is another glitch in the system and I tried to stop receiving these emails but the link within the email that would allow me to stop receiving updates for that individual doesn't work either. That link takes me to a surgeon spotlight page. Is there no option to un-follow someone? At this point, the only way I can stop the repetitive emails from coming in and taking over my inbox is to block all email communications from the site by sending them to my Email Spam Folder so that's what I did. I emailed you with regard to this problem but have not heard back so I assume you are busy and will check into when you have a moment. Until then, my Spam folder will get a good workout. :) Karen

Joaquim Cimoes posted a note for Adam that says: Dear Adam,
In the USA do you need to wait for a valve to Ross procedure or you have a bank of valves? We waited for 7 months for a donor to replace the valve of Joaquim. How to function the valve bank?

Hi Adam....I just wanted to say I read your book in two days...and it is very informative and helpful. Thank you! I think it is so awesome that you created this website and wrote your book to help others with upcoming valve surgeries. I have a sister in WA, who will be needing her mitral valve repaired. She was wondering if your book is also available on CD.
My surgery is one month from tomorrow. I can't wait to be on the recovery side!
God Bless You...and Happy Easter to you and your family.
Pamla Moeller

Virginia (Ginger) French posted a note for Adam that says: Blessings from one of the Family!
Adam, I have been doing a bit of reunion by visiting the journals of some of the people I was closest to during the Pre- and Post-Op periods of my HVR. I have made some friends who feel truly like family, whom I would trust to make decisions for me, should it come to that.
This site, Community, Family, is so much more than I could ever have imagined, and it (or more accurately the people who participate, as well as all of the educational materials) really have been a tremendous blessing to me.
I wish you all good things, and that you and your family live in health and joy.
This is one of those times when saying "thank you" doesn't even touch it. May God continue to bless you in all you do, Ginger

J Blair posted a note for Adam that says: Hi Adam I an new to this site and just learning how to navigate through it and also learn of other's heart stories. I am desperately trying to find someone that has had their aortic and mitral valve repaired with both mechanical valves. Alternatively anyone who had the same valves replacedceith tissue. I have yet to read your entire story but were your to valves replaced with mechanical ? Hope to hear from you. Thanks for cresting this site I am from Canada and trying to make connections. You have crested a wondeful vehicle to learn and share with others experiencing heart valve issues

Edith Dim posted a note for Adam that says: Adam, I made a comment beneath Stella's TAVR success story. When you have time, I would Appreciate if you would read it. I realize now that I should have typed it here.
Thank you. Edie

Tammy posted a note for Adam that says: Hi Adam,
I had a bicuspid valve replaced about eight months ago. It was my 50th Birthday present. The surgeon looked at me like he had seen a ghost when he came to my room to visit. He said he had no idea how I was actually breathing. I thought I was getting better, and things have gotten worse in the last month. Have you heard of anyone having breathing issues eight months after surgery? I also have terrible fatigue. They think it might be something with my lungs.

Peter Duplin posted a note for Adam that says: Adam it is my friend Sandra Trotta on the 23rd at Morton Plant Hospital in clearwater Fl. They have it listed as Peter Duplin Adam I would really like to get Sandra name on the list but because I have been keeping and helping her with the journal they used my name.Adam could you please help me with this as it is so important thankyou PeterDuplin.

Peter Duplin posted a note for Adam that says: Adam I want to personally thank you for creating this incredible site.As a friend of someone who is having OHS for the second time I found this incredible site where I can be accepted and vent my feeling my downfalls and my frustrations, and also have this incredible wealth of information at my finger tips thank you Adam. You have truly put your heart and sole in to creating this priceless website. Warm regards Sandra and Peter

Hi Adam,

I hope all is well with you and your family.

I have two questions.

First, I would love to have the link to the commercial when you are ready to share. I would like to share it with my family for sure.
Second, do you have any posts from people who have suffered from pericarditis? At 5 months, go figure, I feel great, no fatigue, no pain, no swelling, but I still feel my heart sticking to my breast bone at every single breath. I had a CT scan done recently and Dr. Stewart looked at it, and my cardiologist is going to see it next week along with a chest x-ray, and an echo was done. Nothing is concerning anyone at this point, except me, although my cardiologist has not seen the images. Prior to this he reviewed the echo and I had to push for some help or a solution. Everything I read says it goes away after 3 months, (cleveland clinic included) but I am worrying about why the inflammation is still there, what can it cause, if anything long term, and why am I feeling the same exact way, at 5 months. I feel like no one has this, but me, which probably is not true. My cardiologist wants to give me a lot of ibuprofin, which I am not taking, and I found something else that is an entirely different approach (holistic - and backed up by a lot of research) to combat inflammation in general, and is used in place of ibuprofin, without any of those nasty side effects. It is being shipped and I will have it next week to take. I noticed you listed posts on lack of sleep and was wondering if you have any for what I am feeling. Thank you. (can you tell I am at the end of my rope with this)?

Curtis Jones posted a note for Adam that says: Thanks for the warm welcome Adam, yes I guess we are neighbors . Glad I found your site, what a wonderful support system. I may take you up on answering some questions should they arise. I was to see the surgeon yesterday for q&a and scheduling but he had emergency surgery, so I guess it'll wait a week.

Patricia Garcia posted a note for Adam that says: Hi Adam...I see a few great hospital's and doctors mentioned on here. I just wanted to say that my surgeon Dr. Michael Acker from HUP in Philadelphia is amazing. He saved my life. My mitral valve was open only the size of a pinhead and I had a mural like clot on my left atrium. My 2nd surgery was at Cleveland Clinic and they were great too. They did not take my insurance this time around. I was on borrrowed time and went with HUP after going in the ER on 12/18/14. I am happy I did and just want others to know that there are great hospitals that are local. Some may be to ill to travel, no money or insurance issues to go to the best. HUP is #7 in the US for the heart. The nursing care at HUP is the best I have ever seen. I don't know if you know of Dr. Michael Acker, but I wanted to share that with you in case someone can't travel out of PA or the local area surrounding it.

Mark Alafita posted a note for Adam that says: Dear Adam,
I just wanted to send a quick note of thanks for both your book and this site. As I approach my surgery in two days, it is frightening to think of how lost I would feel without the information you have provided, and the support that this community freely gives. Don't get me wrong...I'm still nervous, but it would be foolish not to be. But at least I'm walking into this experience with realistic expectations instead of unrealistic fears. For that, I thank you deeply.

PS: When I met my surgeon at U of M for the first time and asked what I could do to get prepared for surgery, the first thing he mentioned was to read your book (which I had already done!). Now that's a ringing endorsement.

Ole Bore posted a note for Adam that says: Hey Adam. Have another bug for you for this site: Appears anytime someone comments on a story (i.e. profile update), it shows it in everyone's notifications... (Sorry can't help but to point it out, work in the Software/Cloud industry - and really want this site to be as good as possible).

Thanks again for all you do.

Terrie Syvertsen posted a note for Adam that says: Hello Adam,
Received a note from Robin Szymanski who Is celebrating her 2nd.yr. Anniversary of
her surgery today back in the Hospital and thought I would mention it to you as I already noted it in the updates in my journal today as She sent the message out that prayers would be appreciated by her! Thought I would mention it to you as I have the rest of the community as I am sure a word from you would go along way while they are checking her out and running their tests. Thank you for your time. Terrie

Amy DiGiovanni Noack posted a note for Adam that says: Hi Adam, I just read your response to Damian and I'm wondering how both your pulmonary and replacement valve are doing 9 yrs later? Is your pulmonary functioning at normal capacity in the aortic position? Do you ever feel and side effects? Thanks for any insight:)

Hi Adam,
Edith Dim needs to get a hold of you. She is new to the site and learning how to navigate and her post landed on my site. She has some important questions for you.

Bob M posted a note for Adam that says: Adam, this post is from Edith Dim:

Edith Dim Adam...I use listened to your video with Dr. Gillonov of of the Cleveland Clinic, and was so impressed, and frightened at the same time. I live in Scottsdale Az, a long way from Cleveland, and I am 88 years old. I have a surgeon here in Scottsdale who is highly regarded. He has performed hundreds of valve replacements as opposed to 4,000 that Dr. Gillonov has. My son would accompany me if I traveled, but I would then need a 24 hr. Caregiver for my husband, instead of 11 hrs per day.. If I were your mother, or an aunt... don't want to put you on the spot...would you think it wiser for to me to consider being close to home for the surgery? I know it is not fair to ask you that, but you are knowledgeable.

Patricia Garcia posted a note for Adam that says: Hi Adam, just wanted to know what type of valves you have?

Don LaPorte posted a note for Adam that says: Hi Adam,
Thanks for intro into Baylor Plano, I have a 'heart clinic' on Tuesday, which at minimum will be a more updated Echo.(last one 4 months ago) Surgery still planned by Dr. Gillinov Feb 5 in Cleveland.

Elaine Foster posted a note for Adam that says: Just wondering why my post yesterday to my journal did not show up on the patient news feed? Also, today I posted a note on patient news feed, and i don't see it either.

Don LaPorte posted a note for Adam that says: Hi Adam,
Thank you so much for putting together this Site. I live in Dallas area. I am currently scheduled for mitral valve repair Feb 5 in Cleveland with Dr. Gillinov(who I think you have met). In another post you mentioned several great surgeons in the Dallas area. Do you have any thoughts to share on traveling for the surgery, as the nurse in Cleveland advised I am fine as long as I stay for week past surgery as a precaution. I have a local GP and cardiologist, but what is your experience on follow on care in case of complications.(the biggest complication I am hearing is Atrial Fibrillation, which appears very common). Would I just be able to go to Baylor for follow on care if needed in your experience?
Thanks,
Don

Clay Rowe posted a note for Adam that says: Hi Adam. Thanks for providing a place for us to get info and support.
Did I misunderstand one of your replies to someone that you're looking at AVR again? Are you up for a redo?

alan holland posted a note for Adam that says: Hey Adam, saw where you mentioned your left ventricle had dilated before surgery and was back to normal at 3 years postop. Note that my right ventricle was noted to be "very severely dilated" immediately preop before my tricuspid valve repair at Cleveland Clinic on 11/20/14. After surgery, Dr. Gillinov said the heart muscle looked good and was not scarred (believe he used the phrase "no fibrosis") and expected right ventricle to fully reverse remodel if valve keeps regurgitation low. A question or two:

1. How much dilation did you have?
2. Did it take the full 3 years to return to normal?

Note I also have some mild bradycardia/AV node dissociation that seems to have come on in the last year and I suspect the heart dilation may have disrupted the conduction system of heart. Maybe, with any luck, this will improve with additional reverse remodeling?

Merry Christmas,

Alan

tina fluhrer posted a note for Adam that says: Hi Adam, I saw Joey today ~ so nice to see him. ~ Day 2 post op. He walked the floor and shaved. He loved the shave! He is weak and I was only able to see him a moment. Just got a call that they will keep him in icu over night. Monitoring an irregular heart beat. Is this a typical challenge?

Ole Bore posted a note for Adam that says: Hey there! Thanks for everything you do the community! I just joined your site today, but have been reading for about a month. When signing up, I went to edit my story. But, for some reason, I'm unable to save my surgeon's name, hospital, date and story. Any ideas?

Tammy Pilcher posted a note for Adam that says: Adam, I want to wish you and your family a Happy Thanksgiving! Your website and book will definitely be on my list of things I'm most thankful for this year! Most grateful, Tammy

Mary posted a note for Adam that says: I am impressed, you did post your Halloween picture! Hope you and your son had a blast!!!

Jim O'Brien posted a note for Adam that says: Hello Adam, I met my surgeon for the first time today. He said that he had interacted with you on some things and that he thought your site was excellent. His name is Dr. Jeremy London in Savannah, Georgia. Do you remember him? I hope you and your family are well this almost Thanksgiving season.

Elaine Foster posted a note for Adam that says: Just wanted to let you know I met with Dr. Marc Gerdisch yesterday. He is a very knowledgeable surgeon. As I was leaving his nurse handed me your book! I told her I already have it, and have learned alot, but I took the one she offered to give to a fishing buddy of my husband who had AVS. Thanks again for your work to keep this site up and running. It is such a blessing.

Celia Werner posted a note for Adam that says: If you are ever on the west coast of Florida I would definitely would like to Thank you in person for the best book ever written. I Live in the Pinellas County area.

Tom Huskisson posted a note for Adam that says: Adam:

I don't know whether you have seen this yet or not but you may find this article interesting and informative.

http://spectrum.ieee.org/biomedical/imaging/
custom-cardiology-a-virtual-heart-for-every-patient

Thanks for all you do !!

Tom Huskisson

Joaquim Cimoes posted a note for Adam that says: Dear Adam, I would like to know more about Ross operation in children, could you help me? We are waiting the homograft to Joaquim.

Adam, I keep forgetting to tell you that my daughter lives in Ann Arbor. You did say you went to University of Michigan .
Susan Sperry