Adam, Thank you for sharing your experience openly and candidly in your book. Also thank you for this site as it has done wonders with all the questions I have and making connections with people going through the exact same thing I am going through. Good to see you are still doing well. I wish the best for you and your family.
I am getting ready for my AVR on 2/20 and you book and this site has helped me prepare.
Adam,
Thank you so much for this journal. I had an Aortic Valve Replacement and an Aortic Repair on December 6th, 2011. I am doing very well. I read your book. I even made a set of you tube videos documenting my journey. Thank you so much.
Cindy Kenward
On August 12, 2011...
Adam,
The site looks and works great. Thanks again for providing this wonderful site that has helped so many of us get through valve surgery.
Ricki Shine
On July 10, 2011...
Hey Adam...You posted a note on my blog after my AVR. It was wonderful to receive your kind words for my recovery, especially after reading your book. It has all been so helpful.
I am 4 weeks post-op tomorrow and my husband and I have reached a rough spot. He is concerned about my "grumpiness" and feels that I am struggling with depression. I feel frustrated that I am still so tired and working so hard to simply try and feel normal again. I know you experienced your own ups and downs during recovery. How did you go about getting help with your emotions? How do you know if you in fact need that help?
Adam...what you have set up has been so helpful for all of us who are in the zipper club with you. I am having to come to terms with this as I sometimes struggle with the surgery that I never wanted in the first place.
Thanks so much Adam
Follow Your Heart
Mari :)
On July 9, 2011...
Adam, thank you. Without your book I would not have been as prepared as I was for the surgery. I can't believe I am five weeks post op and doing well. I was telling the nurses at OSU about your book. I wish they would provide it for every patient. Thanks again, Jon Farmer
On July 4, 2011...
Dear Adam,
My aortic valve replacement surgery is scheduled for next Monday (July 11th). I wanted to take this time to sincerely thank you for writing your book. I've had it for 2 months, have shared it with coworkers & family. I'm not a computer person at all, but your HVJ site saved my sanity. What a blessing to connect with others such as me! The personal bond I feel for many of the others on this site is something I'll remember forever. Wish I could have hugged each one.
Thanks again for being there for me when I needed it.
Hi Adam,
I just wanted to take a moment and thank you for your book. My husband, Kent Kersey, (who's here on HVJ), is scheduled to have AVR and a part of his aorta replaced on Thursday. All of this transpired over the course of about 3 weeks, so I was in major "bring on the information" mode. He had read your book last summer in anticipation of this, but I hadn't. I read his e-copy, and quickly ordered a hard copy of my own, so I could actually hold it and refer back to it when necessary.
We had our pre-op appointment today, and I took it with me. When our nurse gave us the hospital's cardio overview book, I pulled out my copy of your book as well. She'd never seen it before, so I told her that she should recommend it to all patients facing heart valve surgery. She copied the name, and said she'd definitely look into that. I will tell our surgeon and cardiologist about it as well.
We are anxious for the surgery, but not nearly as fearful as we would have been without the knowledge gained from your writing. We feel prepared for what will happen before, during, and after surgery, and as a caregiver that is so important to me.
Thanks again,
Terri Kersey
On June 11, 2011...
Adam, I am very impressed that you found the time to encourage a Sheila facing an AVR and struggling with her journey. You represent not only the online community with a rare and wonderful heart of concern, but may I be so bold to say that you also wonderfully represent another One who is the motivating Presence within you.
Paul M
On April 12, 2011...
previous should read:
Hi Adam, I am wondering how possible it wold be to tweek the HVJ to enable someone to search for people in their area?
This obvioulsly implies privacy issues, and being a computer tech I understand what that implies.
Any ideas?
Thanks
Paul M
On March 28, 2011...
Hello Adam,
Thank you so much for this site. It has been such a great source of information and support for me. I feel like I have made some good friends here. I passed this website on to my cardiac nurse at St. Vincent's Heart Center of Indianapolis, where I had my surgery. It is an excellent hospital. Thank you for all you do!!
Do you have any information about Julie Taylor of London? She has not posted for quite a while, and I am worried about her. Thank you.
Tia Phillips
phillipst75@gmail.com
On March 16, 2011...
Hey Adam, I would be very interested in your reponse to my response to a comment on my guestbook for Mar 16th on the topic of sweeping pre op bans on ANY supplements, Vitamins, etc., protocols. I ran into this on my pre op. It's rather long read , but I would appreciate any feedback. Thanks again for HVJ's. They are vital to holisitic health, which CANNOT be overstated in terms of surg readiness and post op recovery. You are a godsend.
Paul M
On February 20, 2011...
Adam
i just wanted to take a minute to say thank you for this site. The support from this site has been a rock for me. I ran from this surgery once about 8 years because I had No on to talk to about what to expect. I have showed this site to my doctors and the surgeon who will be recommending it to their patients as a method of support. I have been in the hospital now for almost 2 weeks and hopefully will get to go home tomorrow. I have almost no pain now unless i cough or sneeze. I wish I could shake your hand or if you are ever in the Shreveport or Bossier City area of north Louisiana let me treat you to dinner. The south is beutiful. Hats off to you man for the strength you gave me.
Byron Cage
On February 20, 2011...
Hey Adam,
just want to say that there's soemthing really special about this here HVJ.
You no doubt haven't enough time to keep up with everything that's going on out there but mere words are so inefficient to describe the help and blessing you have been to others through the sharing of your own heart journey and again the HVJ.
You are a very special person and really do have a HEART for people,
Paul M
On February 20, 2011...
I lost consciousness at work on 1/25/11. Ambulance took me to a nearby hospital. The cardiologist there told me I have a bicuspid aortic valve, severe stenosis and regurgitation. He advised me to have aortic valve replacement surgery right away. I asked for his recommendation re. cardiac surgeons and he said Dr. Marc Moon at Barnes Hospital in St. Louis. I scheduled surgery with him for this Friday, 2/25/11. I know I need the surgery (I've known about the bicuspid aortic valve for some time and I knew that I would need surgery at some point). I'm a bit worried now that I have done no other research re. the best cardiac surgeon for me, other than asking the above mentioned cardiologist (whom I had not met before that incident). I looked for Dr. Marc Moon on your heart valve surgeon data base but did not find him there. Do you know anything about him? Is it too late for me to switch surgeons at this point? Please reply on my HV Journal at your earliest convenience.
Thanks.
Larry Conant
On February 19, 2011...
Hi Adam,
Can you tell me how I stop receiving notifications when someone posts? Although I asked to be notified when certain people post, I now wish to discontinue that.
Many thanks,
Ruth Howell
On February 14, 2011...
Hi Adam,
Thanks so much for this wonderful blog!
Sean Murphy
On February 2, 2011...
Hey Adam, you should get the Nobel Prize for your Godsend literally of an idea with this web journal support group thing.
It's a lifesaver, "literally". God bless and God speed.
On January 28, 2011...
Hi Adam,
I tried to post a question(s) on your heart valve blog, but your anti-spam math question is not working. Please advise.
Thanks,
Hi Adam,
I am a menber of this site and have been since Sept.2010,, and it has helped me allot,, but now it will not let me log in so i can update my journal,, is it something i am doing wrong?
Adios
Dawna Wickdahl
On January 18, 2011...
Hi Adam,
I just wanted to thank you for fixing the weird post to my guestbook. I was really worked up over it....I tend to be a REALLY private person so to have someone single me out like that and contact me with such a creepy message scared me quite a bit. I so enjoy the HVJ experience and didn't want something like that to ruin all the good.
Thanks again for being so diligent and hands on with the website and for following all of us like a family member or dear friend.
Warm Regards,
Nancy H.
Hi Adam,
It's me, Ruth, the biggest baby on this entire website. I'm sitting here thinking "what would I have done if I didn't find this website and the HVJ?" Not only do you provide everyone with a wealth of information, a great informative book, but now the HVJ where we can all share information and experiences.
What I've learned is that so many other people go through this and SURVIVE! So why shouln't I get through it and survive? It is amazing to be able to share experiences with so many other people. I have also obtained great information about preparation and pre-srugery CDs that have decreased my anxiety level substantially to the point where I am once again functional and can actually sleep at night.
So . . . a big THANK YOU for doing what you've done. And I hope you are continuing to feel great so you can enjoy your beautiful family. What a pretty wife and gorgeous little boy!!!!
I will be seeing a cardiologist, Dr. Griffin, at the Cleveland Clinic next Tuesday (1/18) and belive they will schedule my surgery for sometime in April.
Thanks again for all you've done. If you and so many other can get through this - I can too!
Ruth Howell
Maine
On January 8, 2011...
Hi Adam,
I can't thank you enough for your wonderful book, your blog, and now this journal AND..... for getting all that great information for me from Dr. Adams.
As you can see from my journal, I am a nervous wreck, although I've managed to calm down lately with the help of several therapists and Xanax. The journals have helped me locate other patients who went to the same hosptial and had the same doctor as I have chosen. A real help! They have made me more anxious and upset when I read some of the more unpleasant experiences, which is why I was wondering about exactly what each patient had going on going into surgery.
Patients seem to mention having had this or that happen without any explanation about why their doctor told them that particular event happened. I guess we all want to "compare" ourselves to other people to try to figure out if we're at risk for the same problem. I hope I didn't upset anyone by asking for this information, but without it things just don't make sense (for me).
My therapists have asked me not to read them because as I have to sift through so many to find patients who went to the hospital I've chosen, I get dragged in and then upset.
All in all, I think it's a wonderful idea, maybe just needs some tweaks or moderation.
Again, many thanks for all you have done to help so many people. I do not mean to sound like an ungrateful person, I just think everyone has their own level of clam and anxiety and react differently to what they read.
Best regards to you and your lovely family.
Ruth
On November 9, 2010...
Hi Adam thank you sooo much for this valuable tool. I had posted a question a few weeks ago to see if anyone had any info on genetics and congenital heart defects. You probable have not read my story, journal etc, but I am X 3, adult son at age 9 Atrial Septal Defect. 6 y/o grandson being eval presently for arrythmias, and son with ASD repair wife is 3 mos pregnant and OB is monitoring every 3 wks with ultrasound as there is concern. Sister and grandfather both died of sudden death due to clots grandfather age 35, sister age 11 autopsies revealed ASD's as well. Soooo lots of questions and I was just curious if you knew of any websites, articles etc?
Thank you in advance
Susan VandenBussche NC
On October 29, 2010...
Hi Adam,
First of all, Thanks so much for the fabulous website and opportunity it affords everyone who is going through this experience. I am devouring your book and learning a lot from it. It is really preparing me for what lies ahead and the questions I need to ask. I really appreciate the feedback about the Ross procedure that you had done and the other links to info you provided.
You look great and your family is just gorgeous!! You are very blessed!!
Thanks again for all you do for everyone that needs this support.
Nancy H.
On October 26, 2010...
Wonderful Sir, Thank you very much.. andro d.
On October 23, 2010...
You're awesome!!
Fran (FL)
On August 31, 2010...
Hi Adam
I can't thank you enough or too often for opening this web site for us heart valve patients and caregivers. The information and support I have received here has been a significant tool in my healing and along the way I have made some wonderful friends from all over the world. I cannot now imagine how I would have managed as well without being able to drop in here and share my thoughts and worries while receiving heartfelt support from people sharing my experience. Thank you.
Cheryl, Ontario
On August 30, 2010...
Hi Adam. This site is such a gift for those of us going through this experience. We can learn, share, be supported & offer support. Thank you so much - Joy Vera
On August 30, 2010...
Hi Adam
You are a God send for creating the journals idea.Ifelt I was the only person having this surery,but when I found your site and the journals pages I felt more relaxed and less stressed konwing so many pther people were in the same boat as me.
May God bless you and all your family and of course our journal family.
Regards Alan Scully
On August 30, 2010...
Hi Adam,
I just want to thank you for this wonderful connection you have created for all of us who feel alone in our journey through heart surgery. I look forward to hearing of others ups and downs and how they dealt with each event. Just knowing that there are others out there makes you feel more normal when you really feel anything but normal. May God continue to bless you in all ways. Linda Stahl
On August 29, 2010...
Hi Adam,
Your site has created a web of hope for all who have discovered it. It has led all of us from overwhelming feelings of isolation and helplessness, by empowering us with knowledge and companionship.
When my daughter had open heart surgery at twenty months old, I co-created two local heart support groups for parents of these children It was a rewarding experience, and now all these years later you have helped me so much by sharing your story and creating this site.
Theresa Callanam
On August 29, 2010...
Thanks Adam
You are awesome !!!!!!
Sean Murphy
On August 29, 2010...
Hi Adam
I thank you, as you are the reason for the growing, the sharing and the love and concern for our fellow patients.
Fran
On August 17, 2010...
Hi Adam,
I just wanted to thank you for this site. It helped me prepare for my surgery and continues to provide a forum for support. It's a Godsend for all of us going through valve surgery and for our families as well.
Thanks!!!!
Ricki Shine, Greenville SC
On May 29, 2010...
Hi Adam,
I'd be honored if you would use my "checklist". And as a resident of Redondo Beach, I'm sure it doesn't even phase you...LOL!!
Oh, here's my suggestion, though I'm a newbie, for the journal site: it would be cool if when you are reading your guestbook, you can click on the person's name, who left the message, and go to their guestbook. Kinda like Facebook :)
Amanda
On May 9, 2010...
Hi Adam,
Just wanted to say thank you so much for this journal site! What a blessing it has been for me. It has helped me manage on days I get a little down. I just read up on all the new postings and some of the old and remember that I am not alone. That is the best feeling in the world. There are so many wonderfull people here, including you, that God is truely alive and working in our lives! I have ordered your book, I downloaded it before my surgery, but I am taking a copy to my surgeon, Dr. Clarence Owen. Again, thank you so much, I could never express the greatfullness I have for this site!
Melany Strader, NC
On May 9, 2010...
Hi Adam,
I bought your book months ago before I even had a definite for heart surgery. Then I saw on your website where you had visited Greenville, NC to meet Dr. Chitwood. He is my surgeon. I just met with him on May 5th and got the go ahead for my mitral repair on June 3rd. The Heart Institute has amazed both my husband and I! I am so lucky to have such a wonderful surgeon and team working with me. I wanted to tell you that this journal site is one of the things that is helping me the most...thank you:) You are an inspiration!
Kimberly Schlienz, Greenville, NC
On April 14, 2010...
Hi Adam,
Just met with Dr. Mahaljevic tonight..have to be at the hospital at 5:00am tomorrow morning, April 15th, for my mitral valve re-repair or replacement. He is a great guy!!! I greeted him from you...he had a big smile and said "I can see you are well connected". Thanks Adam for ALL you do!
Carla Hansen
On April 12, 2010...
Hi Adam- THanks for your kind comments during my recent valve surgery at the University of Michigan. Yes, they are very proficient and friendly over there. SInce I'm from Minnesota, I had to be cautious about referring to "the U of M" because for me that means the University of Minnesota and obviously anyone from Michigan has a completely different perception.
I have many friends who attended Michigan, so you have a good pedigree there.
Thanks for your book. It was good start for finding information. ANd thanks for the website and blog journals. All my friends and family found them particularly useful during my adventure.
I'm two weeks post-op after mitral and tricuspid valve annulopasty repair (with MAZE procedure). So far, so good. I even went into work for a couple of meeting this afternoon. Unbelievable, even in my own estimation.
Stgeven (from Minnesota)
On April 6, 2010...
Hi Adam,
Thanks so much for the website. What a wonderful tool to connect with my support system. I added many friends and family April 5th but only a few got the invitations. Did I overload the system?
Thanks,
Carla Hansen (FL)
On March 19, 2010...
Adam- Great resources here that you've set up. Thanks.
A quick suggestion about improved journals- would it be possible to include hyperlinks in the text. I've had occasion to put some web links in the text that might be useful to others, but the only way they could access them would be to cut and paste into their browser's address line. A simple click would be easier, I think.
Regards, Steve from MN
On March 17, 2010...
Hi Adam,
This site is such a great blessing to so many people, I don't have ANY criticisms at all - but since you asked, I DO have a couple of suggestions.
1) A Data Base of information that new members could search by diagnosis, geographic location, age range, etc.
2) A Calendar of surgery dates past, present, and pending...
3) A way to respond directly to people who leave comments and questions in the guest book.
4) Just a small detail - put buttons at the bottom of the page to move on to the next without returning to the top of the page.
And finally, if you change NOTHING about the journals, I'll continue to recommend this site and your book to EVERYBODY!
Thanks for all you do!
Joel Bryan, Iowa
On March 17, 2010...
PS, talk about being able to do spell check and edit as Cheryl mentioned - see with all my errors I could have used it with what I just sent you, sorry I was rushing.
Richard's wife, Susan
On March 17, 2010...
Hi Adam, glad you asked. I don't know if things I am thinking are already possible, but if they are I don't readily know about them so here goes.
I would like a "general journal" type place to be able to go that everyone can go to look at without having to journqal individuals. For instance, say I want to tell everyone about a recommendation for the "best hotel" to stay at while in Boston, MA for any surgery. I stayed at the Holiday Inn Express and they were super "patient/family" friendly with excellent hospital rates, free parking and treated you so kindly and with deep concern and went out of their way to make you as comfortable as possible knowing you had a loved one in for surgery. It would be nice to post general information such as that or ideas or concerns to share with everyone. Or I heart diet recommendations for heart valve patients or a recommendation for rehab, etc.
Also I know that you can ask to have people's emails. It would be nice to have a general location for emails and if I want anyone and everyone to have my email address I can consent to it by simply putting it in the General Email box. Then if I want to find Cheryl's email for instance I just look under her name and if it is ther I know I can email her without asking.
One more thing. When I read your journal tonight about making suggestions and you said to go into your guestbook - it would be nice if I could have done it right from there. Sometimes when people put entries into Richard's journal I wish I could answer it right from theirs, but perhaps that is not feasible or not protected enough?
Anyway, that is it for now, hope I was clear enough.
Thanks,
Richard's wife, Susan.
On March 17, 2010...
Hi Adam
I'm glad you liked the data base idea and hopefully it's something that can be done. As the site gets bigger, and it will, a data base will help us zero in on finding a particular diagnosis etc. I had one more thought to add - spell checker or ability to edit a guestbook message that we leave, something similar to the way we can edit our journal although I'm sure your programmer set it up the way he did for a specific reason. Something to think about anyway.
The site is great as it is though. I think it has helped a lot of people, probably even people who haven't opened a journal.
Continued success. Cheryl, Ontairo
On March 16, 2010...
Hey Adam,
maybe some thoughts:
1. a way to email/write a message to another journal author without everyone seeing it.
2. a way to have a live chat with someone who is also online and viewing the journals.
(i know those are kind of like facebook things, but people might like them on here who don't facebook)
I really enjoy the journals, and come to the site to read them a couple times a day. Thanks!
Patrick in STL
pcsfd2@gmail.com
On March 16, 2010...
Adam, I'd like to see a search option added where you can look for patient stories by diagnosis. Right now you have to know a specific patient name. For someone coming to the sight doing research it would be helpful if they could find patients with a similar diagnosis to theirs, given that surgical options can be very different based on the valve affected.
Keep up the good work. I know everyone finds this site and your book incredibly useful.
Amy Machtay
Raleigh, NC
On March 16, 2010...
Hi Adam,
I can't express how your book and this journal have helped us mentally prepare for Franks surgery...So many wonderful people who were kind enough to hold our hands and give us the emotional support that was so comforting. As for a few suggestions.. the only one I can come up with is that perhaps under the main photo.. and diagnosis we could add a Date of Surgery, as I have found reading through everyone's journals which can be quite a few pages, I find myself searching to find the date of surgery only to then go back to the page I was reading.
again.. what you have done here has helped thousands... thank you thank you..
ohh and another thought.. wouldn't it be a cool thing if we could all one day travel to a city halfway and all meet in person to celebrate our HEARTS!!!!!
Kim Dvorsky
On March 16, 2010...
Dr. Gillinov says hello to you. What a awsome young (i almost asked to see his id) doctor. He explained everything in a very clear and concise manner. Your journal and book has taken all the stress away. It cant get any better than that!!! In 14 hours I'll be hooked up and ready to go!!!
thanks