Adam's Heart Valve Journal

Gregory Brummett posted a note for Adam that says: Hi Adam! Could you recommend a brand of fish oil supplement capsule for me to take (hopefully with minimal or no fishy burps or aftertaste? ) Do you take fish oil capsules? Which one? Thanks & keep on tickin' ! Greg Brummett, DFW TX

Marlise Conrad posted a note for Adam that says: Hi Adam,

I just really wanted to say thank you so much for making your journey so inclusive and open. We have a great support group physically but not everyone can be so fortunate so this really means more than you can imagine, especially to some! From the book to your personal help with the incision shield- I just can't thank you enough. It was therapeutic for me to give updates and hear everyone's stories and thoughts on Mom's (Marlise) recovery. Just... thank you- words won't ever be enough.

Forever grateful,
Kristina McLamb

Marlise Conrad posted a note for Adam that says: Thanks again for your help re: the shield Adam!!! You are a great person!

Arlene Merluzzi posted a note for Adam that says: Dear Adam, your website and book have been very helpful to me over the past 3 years. On October 2, 2015, I had open heart surgery for severe aortic stenosis because of a bicuspid valve. I had it replaced with a bovine bioprosthetic valve at Mount Sinai hospital in New York (my hometown). My daughter found your book before my surgery and it really helped me prepare and know what to expect. Since my surgery, depression has hit me hard as my son walked out on my family shortly after returning home and is now excluding us from his upcoming wedding. Although I’ve had my heart physically fixed, I am still so broken. Lately the stress and depression have caused more chest pain and I am also very disappointed in my aftercare by my cardiologist in Orlando. I haven’t had an echo since May 2016. How often should we be having them? All my best to you!

GERI FRANK posted a note for Adam that says: Dear Adam
God Bless you and your lovely family! Thank you so much for guiding so many of us thru this perilous journey of open heart surgery. My 4th year anniversary for AORTIC VALVE replacement will be soon July 21st, 2014 at INOVA FAIRFAX DR. ALAN SPEER WAS THE SURGEON, all the information and knowledge I learned from your book HEART VALVE SURGERY helped me to be prepared for the surgery.
I was very fortunate to have a miraculous recovery and I thank you for this warm and wonderful site to share our experience with others.
Geri Frank

Susan Lynn posted a note for Adam that says: Adam - I'm sure someone has recommended this before, but have you thought about holding an annual event so we could meet our fellow heart brothers and sisters? I know Edwards Life Sciences has an invitation-only event for recipients of their products, but I would love to meet the great people on this site!

It's my six-month anniversary, today, and I just wanted to say thanks for your book and creating this resource. I couldn't have done it without you.

Charles Hamel posted a note for Adam that says: Hi Adam, thanks for this terrific website. I have severe pulmonary regurgitation due to a previous operation for pulmonary stenosis as a child. I was hoping you could connect me with someone who's undergone this same situation and has had a new valve replacement operation? Thanks much.

Domingo Padilla posted a note for Adam that says: Hey Adam I see that you had a Pulmonary valve replacement done before along with the other valve. Did you have any complications from the Pulmonary valve replacement? I am scheduled to have mine replaced June 26. I was told they do not go anywhere near the hearts electrical functions doing this valve. Just curious if you had any AFib episodes after surgery.

Carol Navin posted a note for Adam that says: Can you tell me an alternative fix for pain relief from the sternal wires. Its been 2 and a half years. I have literally tried everything. Reports are all excellent. (valve, heart , weight, energy.. no restrictions for excercise ect. It was a bicuspid aortic valve replacement, with aneuyrism All good except my pain and soreness in and around scar.. I reall dont want to go through healing an open wound... So i dont wnt to have wires out if at all to be avoided.

Wanda Blackwood posted a note for Adam that says: Hey Adam, just wanted to say thanks for making this blog. I really enjoy reading others stories about their journeys through all of this. I do have a question for you- have you heard of aberrant right subclavian artery? I was told I have this and that it's not very common. Any information would be appreciated. Thanks

Debra Langford posted a note for Adam that says: Thank you for this wonderful website! It has been and will be a source of information and comfort. My surgery is Feb 15 so my anxiety is gaining. It helps to read other peoples stories. Also, I purchased your book and it was a great help. Thank you Adam!

Wendy Evans posted a note for Adam that says: Adam, Help! Not sure what questions I should be asking of my doctor...
So 4/2016 my TSH was 1.75 for my thyroid, after surgery 10/2017 it is now 12.23!!!
Is this common? Can It be fixed? What might have happened? I have tried to look up info and can't find much. I got the tests and will be seeing my doctor on the 15th of January. What questions should I ask?

Ian Robinson posted a note for Adam that says: Hi Adam, my husband had an aortic valve and root repair a year ago, he's ticking away nicely but has migraines and double vision episodes quite often, are these linked to the surgery? Thanks T.

Maria posted a note for Adam that says: Thanks, Adam, for completing a video from the conference about the annuloplasty rings! Maria

Civita Fahey posted a note for Adam that says: Hi Adam.. I've thanked you many times for making up this site and I will thank you again.. it got me through my surgery.. I refer any patient I meet that has valve issues to this site.. I sometimes don't get to check in for a day or two and I like to keep up with all my "friends" and may miss a post. I have a hard time finding members if they haven't posted for a while? Is there a search button I don't know about? thanks for all your work, Civita

Tammy Pilcher posted a note for Adam that says: Adam, I'm so sorry to hear about the passing of your dad. Your tribute to him in the newsletter is beautiful! Keeping you and your family in my prayers. God bless you!

Cindy Williams posted a note for Adam that says: Adam, I just learned of the passing of your dad, I'm so sorry. My sympathies to you and your family.

The wonderful memories with your dad will be in your heart forever 💖

Take care,
Cindy 💕

Valerie Archual posted a note for Adam that says: Hey Adam! Just wanted to thank you so much for starting this site!!! It has been awesome to talk with other patients!!! Their knowledge is far more valuable than any literature you can read on the subject!!
So I am having PVCS that started 3 weeks post op of mitral valve and ASD repair- I am 5 weeks out now. My surgery was done at the Cleveland Clinic. My home hospital is recommending upping my metropolol from 12.5 x2 a day to 25x2 a day to control the pvcs. I normally run very low blood pressure. They kept me overnight 1 night in hospital but am being sent home now. My blood pressure did at one point get to 80/40 but they still think I should continue the 25mgx2 because they seem to be stopping the pvcs. Anyone else have issues with pvcs at this stage???
Thanks!
Val

Enrique K posted a note for Adam that says: Hi Adam, I have noticed comments from patients in this forum asking about website privacy. How secure is your website? I don't see any encryption or SSL script on your site. You have personal information from each of us and having the site not secured is of great concern. Please look into this with a close eye and I suggest to make changes and protect your site and your followers.

Steven A Husted posted a note for Adam that says: MY DEAR ADAM PICK I CAN NOT THANK YOU ENOUGH FOR YOUR BOOK AND THIS SITE YOU WERE A BLESSING RIGHT WHEN I NEEDED ONE THANK YOU AND MAY YOU AND YOUR FAMILY HAVE A MERRY CHRISTMAS AND A HAPPY NEW YEAR GOD BLESS YOU AND YOUR FAMILY YOUR HEART BROTHER STEVEN A HUSTED (POPEYE)

Sadaf Khan posted a note for Adam that says: Hello Adam's I just read your story and feeling much better now beuz my 4 years old son is suffering heart voulve disease he is going this 8 of December for ross procedure if u can contact wd me I'll highly appreciate many thanks

Peggy Whitecotton posted a note for Adam that says: Hi Adam recently my sister had emergency ohs for aortic aneurysm. Another sister had the same surgery several years ago. My sister was told by her surgeon that this is genatic. Have you heard of that before? My sergery was an AVR I did not have an aneurysm.

Joanne Casserly posted a note for Adam that says:
If it were not for this board, I would never have made it. Thank you for all the hard work that you do. I'm completely free, to go live, my life. God Bless Adam, and thank you again.

Steven A Husted posted a note for Adam that says: WOW THOSE VIDEOS ON AORTIC STENOSIS AND THE TAVR ARE OUTSTANDING THEY REALLY GIVE YOU AN UNDERSTANDING OF THE OPERATION THANKS ADAM YOU ARE A GOD SENT TO THE HEART SURGERY COMMUNITY KEEP ON TICKING

Steve Wykstra posted a note for Adam that says: Hey Adam, can you tell me a bit about the way you set up this wonderful multi-person blog site here. I have a team of semi-retired guys who are working on on a research project, and this structure would be ideal for us. Is it a WordPress thing? Did someone set it up for you or did you do it yourself? I would just love to be able to have the same sort of structure for my team.
If you can give me some hot tips on this, you could email me at steve.wykstra@gmail.com. Thanks. ANd sorry for being a bother. Thanks so much for your work in starting and supporting this webite!

Tina Maroon posted a note for Adam that says: Hi Adam, I wanted to thank you for having this website to post about Open Heart Surgery and about our experiences. It has really helped me in the last year. I often wondered if you ever speak to the public where we could go to listen to you. I would love to go listen to you speak or to meet you in person. I also wondered what books you have written and where I could find them. Thanks again Tina Maroon

Cheryle Bird posted a note for Adam that says: Hi Adam, Like so many others on this site I want to say thank you. Thank you for providing this platform for us with heart valve issues & in my case pending surgery. When I first found out I searched the net and was well aware that this kind of research can often bring 'fear and confusion'. I am so thxful for discovering you and heartvalve surgery.com It really doesn't matter that whilst I am here in Australia the posts I am reading are from the US. What matters is connecting, sharing our story, being encouraged and being heard and that gives us all confidence in taking the steps we need to. I'm having tricuspid valve, which my surgeon has said is rare, and rom reading several posts, to date I haven't come across anyone who has entered into OHS for just that - yet!!! Thanks again to you. (And you'll be happy to hear that I have connected with a girl from Sydney, so I feel she is only several hours away). Keep up the good work, Cheryle

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.