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.
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!
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.
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
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.
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.
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
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
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.
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.
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 :)
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!
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
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!
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.
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.
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.
Richard's wife, Susan.
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.
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!
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.
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!!!!!
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!!!
Adam, Thank you so much!! Ive finally discovered why Ive given in & gotten a computer despite my reservations concerning them.You have a beautifull family & a wonderfully theraputic story~!By the way, I grew up in the sthbay! Redondo,el segundo, torrance ,hawthorne. My home town!! I miss it! David Pullano
Adam, I just want to thank you from the bottom of my soon-to-be fixed heart for this awesome website! It has helped me to be less fearful about my impending surgery, learn all I can abotu my procedure, and meet some really fascinating people.
Thank you, thank you, thank you, thank you for this great website!
Thank you Adam for your kind words. It was really thoughtful of you to drop in and give some positive feedback when I know you must be busy with work, your family and the heart valve sites.
I feel compelled to weigh in on as many journals as I can and give a word of encouragement to those recovering and waiting. Wouldn't you have loved to have had this tool available to you at the time of your surgery? Obviously the other members feel much the same as I do.
This is an incredibly caring community of people that have joined here. You should be extremely proud of what you have accomplished not only for yourself, but for those who have joined in. Besides, there is always something to learn and knowledge is power.
Thank you Adam. Continued good health and success as you expand your thoughts and dreams.
Careful surfing out there - watch out for the sharks.
I did finally have my AVR on 02/04/2010. I will be leaving Johns Hopkins tomorrow to go home. Thank you (Adam, Robyn, and baby Ethan) for everything from the blog to my new journal friends. I am sharing with EVERYONE I come across about the incredible work that you have done.
Thank you for having the insight to get us connected to Dr. Gillinov at the Cleveland Clinic. What a terrific hour plus that was being able to see so many questions get answered, including my own. Having your book and being able to connect with others going through the same thing made it so much easier for me to deal with my surgery and now with recovery. I just want you to know how very much I appreciate the time and effort you put into the Book, Blog and Journal site. Thank you, thank you. Cheryl, Ontario
Thanks for your note on my new Heart Valve Journal. The support that I have read on other Heart Valve Journal's is inspiring and powerful. I have to admit that I have never been much of a reader (of books) but to my surprise found myself finishing your book in just 2 days.
Yes, Dr William Ryan here in Dallas is doing my surgery. The surgery is 1 week from today, it sure is hard to wait.
My Faith in God, my Family and my Friends will get me through this!
Thanks again for all of the helpful info in your book.
It is back to work and normal living tomorrow. Thanks so much for putting this site and the blog together and maintaining them so well. They have really helped me and others get through this. Thanks again
I just wanted to thank you for being an inspiration to me and to others. Because of you, I now look forward to feeling better when before I knew about this site, I was very apprehensive. Thank you so much.