Sandy Stein -- sksteinde@yahoo.com posted a note for Adam that says: Hi Adam -- I wrote a blog post that I would like to share, but am not sure how to go about it or where I should share it to--your blog, or on one of the other HeartValveSurgery.com threads? Also, would I just share the link, or copy and paste the content? I would also like to share it to our FB Heart Valve Surgery Support group, but again, am not sure whether I should just share the link, or do a copy and paste? Could you check it out and let me know? Thanks so much. https://bit.ly/3k43OhC

Rob posted a note for Adam that says: Hello Adam,
looking for a recommendation on a surgeon at the University of Michigan
aortic regurgitation need surgery after only five years of the first surgery in 2015 ( trifecta cow valve)

Mark Abbotoy posted a note for Adam that says: Hi Adam. I've decided to switch my main care from Cleveland Clinic to the Mayo Clinic due to a rare genetic disorder that Mayo Clinic discovered that is related to blood clots forming on my native and replacement valves. I will be getting a cardiac workup while I am there in October. I've had trouble getting information on their valve replacement capabilities and which cardio doctors and surgeons are the best.
I assume they are among the top valve hospitals in the country. Do have any information on Mayo clinic and valve replacements? Names of best doctors, etc.. I would really appreciate any information.

Chris Calhoun posted a note for Adam that says: Adam,
I am wondering how you feel about testosterone use having had the valve done?
I have not been able to get many opinions on this subject at the site - just people telling me to "ask my doctor"
thanks

Enrique K posted a note for Adam that says: Hi Adam, I'm using a Lenovo 360 computer and browser is Chrome. Thanks for checking into it. I couldn't even reply to my post from George Karambinis.

Susan Lynn posted a note for Adam that says: Adam - I couldn't post this in Marie's thread. Here's the technical issue I'm experiencing.

I can generally type one comment on a journal thread and it works, but all subsequent entries won't post. It happens when using my phone and laptop. It seems to have started after the last upgrade to the site. Thanks for looking into it.

Hi Adam, is your sis here. Just wanted to tell you that it’s now six months post op, Praise God! Also, just got our Peloton today and wanted to let you know, hoping to enjoy it as much as you and your family do. Stay safe and blessings
🤗🙏❤️

Herb Greenberg posted a note for Adam that says: Question for Adam to ask the heart experts: You had a really good interviews, including one with Dr. Gillinov of the Cleveland Clinic, regarding covid and valve patients. Even with all of the info, there still seems to be confusion and a lack of clarity. My own primary care doc says that even though I've had everything repaired (valve, root, AA, CABGx1) that I have heart disease, which in theory puts me at greater risk of complications if I contract the disease. In this podcast from April 1 – https://my.clevelandclinic.org/podcasts/love-your-heart/covid-19-and-your-heart – he says that if your valve has been "repaired" and you have no other issues, such as afib, you are not at greater risk.

But that sparks another question: Repair vs. replacement. Does replacement put you at greater risk of complication than repair? Or was he just being general. You seem to have a direct line into him and others.

Thanks once gain for all you do.

Herb

Catie B posted a note for Adam that says: Hi Adam! Another comment on the notifications. The system does notify again. But it notifies under the wrong names. For example, one of my recent notifications says, "Adam Pick and 5 others just commented on Adam Pick's photo which you also posted on." But the thread is Jennifer Winslow's. In other words, I have a string of notifications, but they all cite the wrong name, not the original poster's. Thanks so much for all you do with the site!

Kimberly Eisenhut posted a note for Adam that says: Hello,
I am so glad I found this site :)
I feel as if I have been in this all alone, even though my children and mother and sister know what is going on with my valves and aortic aneurysm, they do not talk about it with me or ask how I am. I think maybe it scares them and is easier not to ever mention it, which makes it even harder for me because I do not want to bring it up and worry them.
In the summer of 2016 I had an Echo that showed mild regurgitation in my tricuspid and trivial regurgitation in my mitral valve. I wore a monitor for a couple day because of an irregular EKG and it showed frequent irregular beats, but nothing to worry about. In 2016 and 2017 I had a right heart Cath. because of what they thought was a little high pressure in my chest arteries and slight enlargement of my heart, and thought I may have Pulmonary Hypertension, which was told after that test, I do not. Then had stress test where they put air into the IV to better see things. That test was O.K.
Then in 2017 in summer had my 2nd Echo which showed my tricuspid was now leaking moderate to severely and Mitral was leaking slightly as well as the aortic aneurysm. This is when I was referred to a heart valve specialist at Northwestern In Chicago. My Dr. is Dr. Rigolin, and she sees me once a year now. My last visit was last summer and everything has stayed the same. My aortic aneurysm is still at 4.0-4.1 and Tricuspid is the same as well as the slight enlargement of right side of my heart, which initially led 1st cardiologist to think it was pulmonary hypertension.
I take Pravastatin 20mg once a day (Cholesterol)
Amlodipine Besylate 5mg once a day (blood pressure)
Lisinopril 10mg once a day (blood pressure)
Fluoxetine (Prozac) 20mg, once a day (depression last 27 years)
Clonazepam .25mg 2x a day (anxiety disorder for last 27 years)
Centrum Silver for women (multivitamin) 1 a day
They had me on a low dose aspirin for 3 years, and recently I asked about it again, and now they said maybe I should not take it because of new studies and my aneurysm. (find it interesting they didnt think that earlier, and I even asked several times about it) Ive stopped taking it now.
I saw your interview with Dr. McCarthy at Northwestern in Chicago, and am hopeful to be able to speak with him about my case some day soon. It seems almost impossible to see some of these specialists. They considered me for a study in 2017 but said I did not qualify.
I have medicaid, and hope that is not the reason they are not telling me I need surgery and are taking the "wait and watch" approach.
Thank you for any advice or help you can give, as I feel very much alone. I do not find too many people with the tricuspid problem I have as well as aneuritic aorta and mitral valve leakage also, and if you can help me connect with any one with something similar, I will be forever grateful.
I have recently been having a lot of pain in muscles in my left arm, and hard time lifting anything with my left arm. Dr. says its arthritis or tendons, but I think it may be medications causing issues.
Again, thank you for all you do!
I am a single mother with a 14 year old son, and try so hard to make sure he and my mother are healthy and happy, just need a little help for me sometimes.

Jo Orsini posted a note for Adam that says: Hello Adam,
Thank you for your ‘Welcome’. Thank you too for this amazing Website and sharing platform! Brilliant!-as the first thing one wants to do when getting a referral to a heart surgeon is speak to others who have travelled that journey. I am sooo grateful to be in the Toronto area and to have been able to get a referral to Dr. Tirone David. I have know about his reputation for over 35 years. I never really wanted to have to meet him in this capacity as Surgeon-Patient....but being at this point with my heart health, I am so grateful that he is the Dr. I get to have. My first consultation with Dr. David is coming up in a couple weeks.
Thank you again,
Jo Orsini

Frank Giovanniello posted a note for Adam that says: What a Hero ! Thank you for this blog. To find and talk to others that had OHS really helps a great deal. I'm 5 months post Quad Bypass. I've been going to cardio rehab, and it also helped, but right now I only have about 3 more visits. But now i'm the entire class. So no one else to compare the experience. I'm having emotional issues, so I asked the nurses, for the second time about Local Support Groups in the area. I have been trying to google them also with no success. I live in Northeast PA. 18372
Would you have any ideas?
Frank

Hello Adam, can’t thank you enough for this blog. It has helped so much and because of you I got the best surgeon there is to do my surgery “Dr. Starnes”. Your book has been very helpful also. I have a question for you about one of our heart warriors “Brian Tinsley”. I have sent a message since his surgery and he has not posted since 12/18/19.
I’m just worried. Have you heard from him? Hope he is ok. Thanks again,
Ana Brusso

Rose Madura posted a note for Adam that says: Hi Adam. The notifications have been stuck for several weeks. We've not been getting updates. Hopefully your team is working on a solution but in case you were unaware, I thought I'd let you know. MERRY CHRISTMAS!

Kathy Blank posted a note for Adam that says: Adam- I am now 2 1/2 years post op
and still rely on this amazing resource. Did you ever consider creating an app that will make it easier to communicate to the community? That would be something that would enhance the ease of posting and communicating!

Fay Kozas posted a note for Adam that says: Happy Birthday, Ethan! Have fun and enjoy! Great photo!

Claire Kreger-Boaz posted a note for Adam that says: Hi Adam, thank you for making this amazing website! I have a question about the journal/subscribers. A bunch of family and friends subscribed to mine but aren't getting updates. How does this work? Thank you!

Fay Kozas posted a note for Adam that says: Hi Adam, great photo! Thank you for this website. I wish you and yours a blessed Thanksgiving.

Rob Sparling posted a note for Adam that says: Adam, Thanks again for this site. What a Godsend! I have been a member of the community only since early September but it seems like the volume of posts has picked up significantly of late. I wonder if site traffic data you see supports that.....

Are there more Heart Warriors joining/posting? Or are folks just more vocal (I.e., more posts per member) because of number of procedures, questions or other milestones being achieved? Or some combo of those or other things?

Just curious.

Sara Moyce posted a note for Adam that says: Thank you Adam from the bottom of my heart - including my ailing mitral valve. Your book and this site keep me going. I thank God for ALL you have done, and continue to do for so many. Thank you and God bless you!

Rachel posted a note for Adam that says: Adam, Thanks so much for creating this website. It has been beyond helpful as I and my family prepare for surgery early next year. Again, many, many, many thanks!

Adrianne Lane posted a note for Adam that says: I just wanted to say I love your picture with your son . It’s a wonderful an great picture! Also I’m going to be having heart surgery . I had a heart murmur since birth and now I’m going to be getting a mechanical valve replacement! I’m really scared about surgery.

Leslie Coleman posted a note for Adam that says: Just ordered your book
Prior to heart valve replacement surgery, how did you handle the anxiety and constant mind games?

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