Joseph Ballett posted a note for Adam that says:
Adam is there any problem if i walk longer than they recommend, example i walked for about 1 and 1/2 hours today non stop. I was slow and careful but is there a problem in doing this
Adam Pick Joseph, Great question. Fyi, I'm really not one to give medical advice as to what you (or anybody) sh ... Read more
Adam Pick Joseph, Great question. Fyi, I'm really not one to give medical advice as to what you (or anybody) should or should not do. I can only share that, at times, during the early recovery, some patients overdo it. They want to hurry their recovery. They want to "get back to normal" quickly -- only to feel physically tuckered out the next few days. I was one of those patients. And, I have spoke with many other patients who experienced the same thing. That said, I would (i) contact your medical team to get their opinion and (ii) you might want to take a little easier during these first few weeks. I'm a big fan of 'safe not sorry' if you know what I mean. Whatever you decide, I am so happy to hear about how great you are doing!
Joseph Ballett Thank you Adam this is the second day i have done this , but i think i will slow down a bit , like yo ... Read more
Joseph Ballett Thank you Adam this is the second day i have done this , but i think i will slow down a bit , like you said better safe. I have not tired after these walks .
On October 24, 2014...
Adam,
Can you please give me a few names of surgeons from N.Y.that specialize in BAV , and stenosis.. I want a surgeon that takes the most conservative approach . Please help me out.. my family would appreciate your help too! :-) I know LIJ does TAVR...there are other methods.. I want a very conservative surgeon that does the most minimally invasive procedure! Please help!
Thanks!
Ps: I am reading your book now..:-) purchased on Amazon..
Adam Pick Hi Kathy, Is the procedure for you? As you can see here, TAVR is typically for inoperable or high ris ... Read more
Adam Pick Hi Kathy, Is the procedure for you? As you can see here, TAVR is typically for inoperable or high risk patients. You can learn more about it at http://www.heart-valve-surgery.com/tavr-procedure.php. Also, as you mention a BAV, you may want to check this out -- http://www.heart-valve-surgery.com/heart-surgery-blog/2014/01/10/tavr-bicuspid-aortic-valve-gorav-ailawadi-dr/. I hope this helps!
On October 24, 2014...
Geri posted a note for Adam that says:
Dear Adam
Thank you so much for this wonderful heart valve site, it is an inspiration and great help to many of us, sharing of procedures, getting advice, learning of new methods, and especially friendship to those living alone adjusting to this surgery.
I don't know how I would have managed without this great support group
thanks again
Gary Mercer posted a note for Adam that says:
Hi Adam, I was wondering with all your research and conferences what you think of robotic surgery for a mitral valve repair.
Adam Pick Hi Gary, I think our community has learned together that the robot is another tool that some surgeons ... Read more
Adam Pick Hi Gary, I think our community has learned together that the robot is another tool that some surgeons elect to use to successfully perform mitral valve repair surgery.
Several of the surgeons that we have come to know over the years -- including Drs. Chitwood, Mihaljevic, Lewis, Guy, Roberts and Trento -- prefer to use the robot. Other surgeons, prefer to use other techniques from full sternotomy to minimally invasive.
At the end of the day, I think it's less about the robot and more about the surgeon and their team. You want to find a surgeon who is very experienced -- for the particular therapy that you need performed.
That said, here are some videos we have filmed over the years that might help you (and others) learn more about robotic mitral valve repair.
Advances in Robotic Valve Surgery with Dr. Trento - http://www.heart-valve-surgery.com/heart-surgery-blog/2014/04/08/advances-mitral-valve-repair-alfredo-trento-md/
Safety of Robotic Valve Surgery with Dr. Guy - http://www.heart-valve-surgery.com/heart-surgery-blog/2013/02/21/robotic-mitral-valve-safety-drsloaneguy/
Inside a Robotic Operating Room with Dr. Lewis - http://www.heart-valve-surgery.com/heart-surgery-blog/2013/09/30/robotic-mitral-valve-repair-dr-clifton-lewis/
Keep on tickin!
Adam
On October 14, 2014...
Tammy Pilcher posted a note for Adam that says:
Hey Adam, I just checked my emails and found one from Florida Hospital. I can't thank you enough for all of your help! You have made my night!! Just knowing they are aware of my situation and expecting my call is such a comfort. I'm calling them in the morning. Thank you!!!!
Tammy Pilcher posted a note for Adam that says:
Thank you so much Adam for contacting Dr. Accola with my question. I am so hoping to get him for my surgery. I've watched all of your videos with him and read about him in your book. I'm in northwest Florida so he's only 7 hours away. I just hope he can fit me in. My cardiologist says I need to have this done before the end of the year. Thanks again for all you do!
Adam Pick Hi Tammy, So wonderful to hear how the videos and book have helped you. Like you, I'm hopeful that D ... Read more
Adam Pick Hi Tammy, So wonderful to hear how the videos and book have helped you. Like you, I'm hopeful that Dr. Accola can get you scheduled. Many patients from our community have had excellent results with Dr. Accola and the Florida Hospital team. If you are interested, here's one of my favorite success stories of Denise Ring.
Tammy Pilcher Hey Adam, I just read Denise's story. WOW! That even convinces me more that Dr. Accola is who I want ... Read more
Tammy Pilcher Hey Adam, I just read Denise's story. WOW! That even convinces me more that Dr. Accola is who I want. Thanks!
On October 14, 2014...
Elaine Foster posted a note for Adam that says:
Hi Adam, I have a question. Do you know how Healthgrades.com gets there rating information? Do hospitals and Drs. pay to get their good ratings? I am wondering if the results are completely trustworthy?
Adam Pick Hi Elaine, Sorry. I don't know how they do it.
On October 12, 2014...
Tammy Pilcher posted a note for Adam that says:
Hi Adam, I just wanted to tell you I don't know how I would be able to get through this if it weren't for your book and this website. Being able to connect with others going through the same thing is such a blessing. I've been thanking God for what you've done here. Thank you, Tammy
Adam Pick Tammy, You just made my day. Thanks so much for the very kind words about this project. It is a compl ... Read more
Adam Pick Tammy, You just made my day. Thanks so much for the very kind words about this project. It is a complete honor and privilege to be of service to you during this experience. If you need anything, please let me know. :) Adam
On October 10, 2014...
Eleanor R posted a note for Adam that says:
Adam, I think I need to be in time out. I did it again, as Brittney Spears would say. I changed my photo for the THIRD time, to the photo of your book. I have no idea how or why this happens , but I think I just click somehow on the picture of the book, and zap it becomes my photo. Is there a way I can stop this from happening? And, can you change it back to the Lucy dog photo for me? I am really sorry, to keep doing the same thing. Eleanor
Adam Pick No worries. Eleanor. I just fixed it for you!
On October 8, 2014...
shaas8@aol.com posted a note for Adam that says:
Just an FYI, I received about 200 email notifications of Rachel Shelly's recent post. Ouch!!
Adam Pick Yes. Thanks for letting me know about this. There was a server issue yesterday that have fixed. So so ... Read more
Adam Pick Yes. Thanks for letting me know about this. There was a server issue yesterday that have fixed. So sorry about that!!!
On October 8, 2014...
Adam, I finished your book yesterday and I must say It answered several questions I didn't realize I had. Great information!
Adam Pick Thanks for the very kind words Aubrey! Great to hear the book is helping you along this journey!
On October 7, 2014...
Adam, from my readings and such from the website I get the impression that the insurance company determines time of surgery and not the doctor.
This is a generalization but was wondering if there is any truth to this?
Take care.
Adam Pick Hi Robert, You raise an interesting point. In my personal experience... It was my surgeon, Dr. Starne ... Read more
Adam Pick Hi Robert, You raise an interesting point. In my personal experience... It was my surgeon, Dr. Starnes, who reviewed my echo, met with me, and then recommended the scheduling of my surgery. Within 15 minutes of of my consult with Dr. Starnes, I was scheduled for surgery.
Now comes the tricky part -- as I understand it. Once the surgery is scheduled, the insurance companies need to authorize and approve the procedure. (I'll never forget when I received a copy of that approval letter from my insurance company in the mail. That was a great moment.)
However, getting that authorization letter is not always so easy. So you know, I went out of my network to have Dr. Starnes perform the surgery. He was a specialist in the Ross Procedure -- which was the type of operation I wanted. Like Janet (who just posted about this), and many others in our community, this can be a very frustrating time, as insurance companies are not always pleasant to deal with. I remember spending over 2 hours on the phone dealing with my insurance company.
I hope this helps answer your question. I'm guessing -- given all of the different plans and providers -- there is a lot of variance in this process. I'd be curious to know what the other members of our community experienced.
Ruth Valenzuela My cardiologist told me the insurance company has their own set of doctors who make decisions on my b ... Read more
Ruth Valenzuela My cardiologist told me the insurance company has their own set of doctors who make decisions on my behalf even though I've never been seen by those doctors. They denied a scheduled echo for me once because they didn't see the necessity of it even though my cardiologist wanted one done. Nonetheless, I had to wait until they said it was okay.
Tom Elliott I may be among the lucky ones, because my insurance company has been no problem at all, at least not ... Read more
Tom Elliott I may be among the lucky ones, because my insurance company has been no problem at all, at least not so far. They required a preapproval, but the surgeon's office took care of that, and it came in plenty of time, after the surgery was scheduled, if I recall correctly.
But mine was a pretty straightforward situation, with hospital and surgeon both in their network.
Ruth Valenzuela It probably depends on who your insurance company is. I have Healthnet.
Adam Pick Great discussion here. Tom, I'm thrilled to hear you've had no issues!!!
Bob O, my insurance won't pay for an "elective" surgery, which is what they consider valve replacemen ... Read more
Bob O, my insurance won't pay for an "elective" surgery, which is what they consider valve replacement, unless it meets certain criterion. Severe without symptoms, qualifies, severe with symptoms of course and moderate WITH symptoms. Moderate without symptoms would be a fight. Unless the heart is showing signs of trouble. For example, where I am now. Moderate/Severe. My heart doesn't have any signs of enlargement, high pressure, etc. and my symptoms have not been attributed to my heart just yet. So I would not be able to get the insurance company to pay right now. Now if the doctor said, "it's time and you need the surgery" then the doctor would have to work with the insurance company to make it happen and the doctor would submit the basis of his or her determination. There are many variations and the insurance companies do have a medical review board that assists in the decision. Unfortunately, in my experience, the review board is just looking at a limited set of records. They make a determination based on numbers and ranges on a piece of paper, the results of testing. They don't seem to take into account a patient is a whole person and a patient may have other health issues that play into things. Sometimes it might be in the best interest of patients with secondary conditions to have surgery sooner rather than later because waiting could increase their risk of other complications not related to the heart. The doctors get that, an insurance medical review doesn't seem to get it, the board only wants to hear about the issue being presented, not the patient as a whole. That's not to say all insurance companies operate that way, but that has been my experience. Sorry for the long winded response. :)
Ruth, my cardiologist wanted me to have an echo every 6 months while I was moderate, my insurance com ... Read more
Ruth, my cardiologist wanted me to have an echo every 6 months while I was moderate, my insurance company also denied the claim. Now that I am moderate/severe, they will "consider" 6 month echos. My cardiologist said he will do them every 6 months regardless because it's necessary and he will just have to fight the insurance company. It's crazy.
Ruth Valenzuela Thanks Karen. I'm at the moderate level and have an echo scheduled for Jan 5th. I have a feeling I' ... Read more
Ruth Valenzuela Thanks Karen. I'm at the moderate level and have an echo scheduled for Jan 5th. I have a feeling I'll be at the moderate/severe stage so I'm hoping I'll have the same deal with the insurance company. My last echo, my cardiologist didn't even charge me for it and I was very thankful but I know he can't afford to keep on doing that... He did tell me that the results of my last echo will justify my need for the one scheduled in Jan.
Ruth, the results definitely will determine the justification for the one in January. When I first b ... Read more
Ruth, the results definitely will determine the justification for the one in January. When I first became moderate the insurance company paid for echos every six month but only for about 3 echoes and since my results were stable, they said every six months wasn't necessary and then I was scheduled for a year from the last one. My year would have been this past August but in June I had symptoms that needed to be evaluated so the echo was scheduled in June but the insurance company paid for it even though it wasn't a year because there were symptoms. So that seems to be the way it goes. For just monitoring, they want me to wait a year if things are stable. If there's a concern that needs to be checked then they'll approve the echo sooner. But my last echo came back moderate/severe so I think my echo will be approved every 6 months now. By the way Ruth, after my valve became moderate it stayed that way for 3 years before becoming moderate/severe. I've learned so much about how different we all are and how no progression is the same as another. It's amazing how so many of us experience the same condition in so many different ways. I go for my next echo in February so you and I seem to be traveling down the same road. Or at least a similar one.
Ruth Valenzuela Karen, I would love my valve to hold up another 3 years likes yours. I'm actually praying it all goe ... Read more
Ruth Valenzuela Karen, I would love my valve to hold up another 3 years likes yours. I'm actually praying it all goes away but I'll take 3 years. Thanks for all the information you provided. Yes, it seems we are on the same track..
I know what you mean Ruth. I wish with all of my heart that I could just wake up and it will be cure ... Read more
I know what you mean Ruth. I wish with all of my heart that I could just wake up and it will be cured. I know the reality though and you do too but it feels good to wish. :)
Adam Pick Karen and Ruth, It is awesome to see you guys having an ongoing conversation in this thread! This is ... Read more
Adam Pick Karen and Ruth, It is awesome to see you guys having an ongoing conversation in this thread! This is exactly why we have been making changes to the site! Love, Adam
On October 6, 2014...
Adam, I just left you a phone message about a problem with the forum. As you will see if you go to Ruth Valenzuela's page, a recent post generated 9 duplicates. However, I received 44 emails telling me that she posted on the site. So those 9 posts generated 44 notifications. Just wanted to let you know that the problem was not only duplicating posts but that it is also affecting the email notifications. Thanks. Karen
Adam Pick Thanks so much Karen for letting me know about this. We are making several changes to the site right ... Read more
Adam Pick Thanks so much Karen for letting me know about this. We are making several changes to the site right now. I think that might be part of the reason the system just acted up. I'll look into this. Again, thanks!!!!
You're welcome Adam.
On October 5, 2014...
Hi Adam, thank you for welcoming me and I did have one question; do you know much about repeat valve surgery? I had my mitral valve repaired in 1997, and it is leaking badly again. I do not yet know what will be recommended, I'm waiting for an appointment with a valve specialist. I have not found much information about this. thanks for this great site, my best Kate
Adam Pick Hi Kate, I just posted a response to your Guest Book. Take a looksie over there!
On October 3, 2014...
Adam, Have you any information about Duke University Medical University and their Heart Valve Replacement teams?
Adam Pick Hi Aubrey, I know that many patients from our community have had great surgical results at Duke. Howe ... Read more
Adam Pick Hi Aubrey, I know that many patients from our community have had great surgical results at Duke. However, I have never met any of their surgeons. What is the name of the surgeon you are going to at Duke?
I haven't seen a surgeon as of yet. just the cardiac team. I guess the surgeon will be the next perso ... Read more
I haven't seen a surgeon as of yet. just the cardiac team. I guess the surgeon will be the next person I meet
Adam, I am blessed to be geographically close to UVA, Duke, UNC. Just want to make the right decision ... Read more
Adam, I am blessed to be geographically close to UVA, Duke, UNC. Just want to make the right decision as to the best surgical team available.
Adam Pick Gotcha. I'm familiar with the UVA team. Drs. Kron, Kern and Ailawadi have helped out many patients in ... Read more
Adam Pick Gotcha. I'm familiar with the UVA team. Drs. Kron, Kern and Ailawadi have helped out many patients in our community. Again, I don't know too much about Duke or UNC. I've heard good things about them just never had much (if any) direct contact with them. Sorry I don't have more information for you.
Adam, What an awesome book! Thanks for your efforts to make this journey easier for all.
Adam Pick Aubrey, It is an honor and privilege to be able to help you through this journey. :)
On October 1, 2014...
lawrence lowe posted a note for Adam that says:
Just purchased your book, looking forward to learning from your experience. Thank you for being sensitive enough to document your experience in the midst of your own life crisis for the sake of helping others, who would need cardiac care as well. Also, It was a pleasure and comfort speaking with you.
Adam Pick Lawrence, Great talking with you just now. My thoughts are with Christopher, you and your entire fami ... Read more
Adam Pick Lawrence, Great talking with you just now. My thoughts are with Christopher, you and your entire family. Fyi, I sent Dr. Bolling a note that your family is coming to meet with him a the U of M. He responded in one minute that he is ready and waiting to help out. Please keep me updated! Adam
On September 27, 2014...
Lilly Black posted a note for Adam that says:
Adam, I am wondering if I may not be doing something correctly. When I click on the heart (top right hand corner of my screen) and I see 3 people sent me a Guest Book note, including yourself :o), in order to reply to them, do I simply "Write a Comment" then click on Post? Will each of the 3 people see my comment? Or do I have to send them a note? I ask because, I replied to them but have not heard back from either of them. Either they had nothing more to say to me, or they didn't see my comment. Please advise.
Thank you.
Lilly
Adam Pick Hi Lily, When you post a reply to a Guestbook post, that person will receive an email notification th ... Read more
Adam Pick Hi Lily, When you post a reply to a Guestbook post, that person will receive an email notification that you have responded. For example, you should have received an email for this post. Did you? Earlier in the week, we had a few issues with this notification system and we are still working on a few enhancements to improve it. Thanks for your patience. Adam
On September 26, 2014...
Ruth Valenzuela posted a note for Adam that says:
I saw where you recommended a surgeon from Phoenix. Do you have any recommendations from the Tucson area?
Thank you
Adam Pick Hi Ruth, Great question. Unfortunately, I have never spoken with a specific surgeon in Tucson. But, i ... Read more
Adam Pick Hi Ruth, Great question. Unfortunately, I have never spoken with a specific surgeon in Tucson. But, if you search by city in the Surgeon Finder, you will see a few surgeons who have been recommended patients in our community. Try this link - http://www.heart-valve-surgery.com/surgeon-database/surgeonSearchResults.php?type=zip&q=tucson. I hope that helps! Adam
Geri posted a note for Adam that says:
Thank you Adam for the info on login, I will try it, also if one logs in the edit feature is available
I read that you live in Redondo Beach, I was there about five years ago with the son living in L.A. , as I recall many huge birds flew onto the deck to be fed by the tourist, you southern California folks are so close to wonderful beaches, it is amazing
thank you for this wonderful site, helping folks to handle the trauma of open heart surgery
Best Wishes
Adam Pick Hi Geri - Great. Give it a try. And yes, if you are logged in you can edit the comments as well. I've ... Read more
Adam Pick Hi Geri - Great. Give it a try. And yes, if you are logged in you can edit the comments as well. I've lived in Redondo Beach for about 10 years. It is really nice. A little overcrowded but my wife an my son enjoy it -- which is the most important thing. Keep on tickin! Adam P.S. Thanks for the kind words about this website. Thanks to people like you and our other members, it is helping patients all over the world. Thanks!
On September 15, 2014...
Ernie Keen posted a note for Adam that says:
Thanks for updating the website and adding new features Adam. I'm not sure I'm too happy with the new patient community layout. New journal entries get pushed down so quickly as people post that if you don't check here often enough, new entries might not get noticed because they're gone to the bottom so fast. Is there a way to be able to see a bunch of the new entries without having to scroll down the page through all the guest posts, photos, and etc?
Also, a lot of new patients ask all the same questions everybody else has asked previously. I read a lot of past patient journals, so a lot of the questions I had were answered in previous patient journals. I'm not sure the new patients can find the past patient's journals. It might help to have a page that has links to past journals in order of their surgeries newest to oldest. I thought maybe that's what Success Stories was, but when I clicked on it, they weren't journals.
Adam Pick Hi Ernie, Great to hear from you. You raise an excellent point that Terrie, Karen, Ginger and I discu ... Read more
Adam Pick Hi Ernie, Great to hear from you. You raise an excellent point that Terrie, Karen, Ginger and I discussed last week. FYI, check out the new link at the top of the News Feed which says, "See Newest Journals Posted". When you click on that link you will only see the latest journal postings -- similar to the functioning of the old website. You can then scroll through all the latest journals and you do not have to click page by page by page. The system automatically provides you a chronological listing of all journals. We may change this going forward but many patients are really liking the fact that they are getting access to so much information from the News Feed. I hope that helps! Adam
Ernie Keen I was thinking that it might be nice to have an archive with patients listed chronologically from whe ... Read more
Ernie Keen I was thinking that it might be nice to have an archive with patients listed chronologically from when they had their surgery. I found out a lot of info by reading past journals, and I was especially interested when I found a patient near my age to see what they went through in the surgery and healing process. I used the "Search for a patient" feature (which I don't see anymore) and I would just type in a name like Tom or James or something. I would then read their "My story" and decide if I wanted to read their journal. Just like reading your book, I learned a lot from those past patients. I even found a patient who had passed away after surgery, but then found out she had a lot of other medical issues that lead to the complications that caused her death. And even that was reassuring for me before surgery, because I knew I didn't have those other medical issues that might cause complications. It might be nice to list the patient's location in the archive as well, so patients can see what the previous patients went through to find a surgeon/hospital in their area.
On September 14, 2014...
Adam,
Thank you so much for the ability to edit posts. I just wrote a lengthy one to Jerry Kenney and it was so nice to be able to read through it and edit some grammar errors that would have bothered me if I had to leave them. So glad to see the site features coming together. I create websites so I know it's not easy. So thank you!!!!
Karen
Adam Pick Awesome Karen! Fyi, we have been working on several more features that we are getting ready to launch ... Read more
Adam Pick Awesome Karen! Fyi, we have been working on several more features that we are getting ready to launch. I'm hopeful these new capabilities will strengthen the learning and the connections among the wonderful patients and caregivers in our community. Stay tuned! Adam
On September 12, 2014...
Joaquim Cimoes posted a note for Adam that says:
Dear Adam,
I would like to know about the possibility to change my identification to Joaquim by Renata Cimões. If is possible please let me know. This resource is really great, thank you very much. Let me know about your plans to visit Brazil.
On September 12, 2014...
Barry posted a note for Adam that says:
Adam - Great job with website! I liked it before and like it more now. The patient updates section is really neat. Learning lots from all the wonderful valve'rs at the community. Way to go and thanks!
Adam Pick Thanks for feedback! We have a lot more to do. But, I am sooooooo happy to hear that you are learning ... Read more
Adam Pick Thanks for feedback! We have a lot more to do. But, I am sooooooo happy to hear that you are learning lots. Keep on tickin! Adam
Can you bring back the email notice for commenting on guestbook like it used to be? I mean, when I leave someone a guestbook message before, I would get an email when that person replies to my message. That doesn't see to work any more. For example, I wouldn't know if you reply to this message.
Thanks,
Julia Hsu
Adam Pick Hi Julia, We are working on restoring that feature right now. We are 50% complete. It's working for t ... Read more
Adam Pick Hi Julia, We are working on restoring that feature right now. We are 50% complete. It's working for the non-registered users of the site. Now, we need to adjust the code just a bit to accommodate the logged in users. Thanks for your patience. I will let you know when that feature is live. Keep on tickin! Adam
On September 8, 2014...
Celia posted a note for Adam that says:
Adam, I want to thank you for this website. It has been a blessing for me, mom and my family. The videos are so helpful. We just watched your webinar with Dr. Stewart about aortic valves and aorta surgery. Again, thank you!
Adam Pick Awww, thanks Celia. You just made my day. So you know, it's an honor and privilege to help you and yo ... Read more
Adam Pick Awww, thanks Celia. You just made my day. So you know, it's an honor and privilege to help you and your mom through this process. Keep on tickin! Adam
On September 7, 2014...
Olga Landry posted a note for Adam that says:
Hello Adam. I want to Thank you for taking your time to make this fantastic website and book. They both has helped me so much in the last few month. I have told everyone I know about this site. I thanks to the patiance journal I have met new friends and a wonderful support group for me. It so nice we can learn from other people experiance.
This has ment so much to me. I felt so alone and scared before I found this site. It so nice to see I am not alone.
There is a question I like to ask. I have a few people I know that when I tell them I am having heart surgery there reaction is oh that nothing, you'll be fine. It like they brush it away like I am getting my tonsil out.
It so frustrating they can't understand what I'm going through.
Thank you again for everything you have done.
Take care.
Olga
Michael Poe Hi Olga, I believe that they are very ignorant of what we go through before such a surgery. Yes it mi ... Read more
Michael Poe Hi Olga, I believe that they are very ignorant of what we go through before such a surgery. Yes it might seem to them that it is just a routine operation. Forgive them because they do not see the personal side of it: US. It is us being operated on not them so it does not matter to them, nobody close to them has had it or an immediate family member. They do not know how traumatic it really is for us and that we are still searching for faith in the Lord to help protect us while we go under the knife. Ok I'll stop rambling, thank you for listening.
Eleanor R Hi, Olga. Michael is right, people usually do not know how to respond to news of an illness and the ... Read more
Eleanor R Hi, Olga. Michael is right, people usually do not know how to respond to news of an illness and the common statement reflects their wish that everything will be alright, that you will be OK. Most folks, and I include myself in this group pre-aortic stenosis, do not know about valve repair or replacement, or that it actually entails opening your heart. I didn't have a clue, and I pride myself of knowing a lot (of useless information!) about a lot of things. Just accept their stated wish that everything will be OK. I understand the same thing happens worldwide, with all kinds of even more serious illnesses, the desire to make us feel that everything is going to be fine. Those who are closest to you will know the details. Of course if you really wanted to be naughty, you could forward to the others a youtube video of a valve replacement, so that they can see for themselves! But, we won't do that, right?
"Take heart" Olga, and know that talking about illness makes most people uncomfortable, wanting to comfort you and themselves, but lacking the knowledge of how to do so. On this site, we know what you are going through, and support you. Eleanor
I've had other surgeries in the past when I had Ovarian Cancer and I heard the same from people. I h ... Read more
I've had other surgeries in the past when I had Ovarian Cancer and I heard the same from people. I hear that now when I talk about heart surgery. It's always the same, they tell me how the doctors do these surgeries every day, it's routine for them and you'll be just fine. I think they say that because they don't know what else to say to comfort us. I think they are trying to make us feel less frightened if they say it's really nothing as though they are telling a child that wakes up in the middle of the night convinced that there's a monster under their bed that there is no such thing as monsters. It doesn't make the kid feel better because if they are afraid then they are afraid. I don't think this is any different. Except for the fact that this is REAL, but dismissing it as though it isn't, just doesn't help. Unfortunately, for me anyway, even though I realize that perhaps people are just trying to comfort me, it still always bothers me because unbeknownst to them, those comments make me feel dismissed and my feelings unacknowledged. All we want is some empathy but we end up feeling brush off instead. It's a tough situation.
Adam Pick Hi Olga, I can relate to your frustration. It's 8 years after my surgery but I still remember several ... Read more
Adam Pick Hi Olga, I can relate to your frustration. It's 8 years after my surgery but I still remember several friends and family members who, quite frankly, were insensitive to the importance of this surgical event. I think that is one of the reasons I started this website. I wanted to know if there were other people out there who were similar to me -- maybe a little nervous, maybe a little anxious and maybe a little scared. I am so thankful that the wonderful members of this community have and continue to relate to each other on such an important topic -- your heart -- and, more specifically, your heart valves. Thanks so much for being a part of this community! Keep on tickin! Adam
On September 3, 2014...
Tim J. posted a note for Adam that says:
Hi Adam, Thanks so much for this website. I love the new patient updates section. It's helping me learn lots and lots and lots. :)
Adam Pick Hey Tim, Thanks for the positive feedback about the site! Adam
On August 31, 2014...
Jerry H posted a note for Adam that says:
HI Adam thank you for the kind note on my update. As I said, things are going well. So i'll send you a message on LinkedIn but bottom line I am managing healthcare business in North America for a very familiar company and we are working on some really amazing technology to improve the whole patient experience after the operation. My point in reaching out is to give you an update on some of the tech that is in development. From a purely educational stand-point and as a clearing house of information you might find it interesting.
Adam Pick Hey Jerry, Sounds like you are working on some wonderful ways to help patients! I look forward to cha ... Read more
Adam Pick Hey Jerry, Sounds like you are working on some wonderful ways to help patients! I look forward to chatting with you in the future. Thanks! Adam Pick
On August 30, 2014...
Hi Adam,
I just wanted to take a moment to send you a BIG thank you for this AWESOME site and all that it is doing for people here. I just got off the phone with one of the people I met here less than 2 months ago and it became very clear to me what this site is all about. To feel totally alone and scared to death because the doctors send your head spinning with the words "Heart Surgery" is very difficult. And when you truly are alone and all you have when you return home from that doctor's visit are the walls to talk to, it can be devastating. You don't know which way to turn. But here we connect, we love one another quickly, we care, we pray and we look out for one another. To be able to bring joy to someone recovering from surgery, someone who at one time not so long ago felt totally alone, is what this is all about. Thank you so much Adam. This site is informational, educational and for many it is a true lifeline. This is God's work. And you made it happen.
Hi Adam, I still see that if you type in my name on the internet my site on here comes up and anyone can enter and read my posts and info . Is this open just like Facebook ? I can find no way to keep anything private on here . Am I missing something ? Thank you and sorry to bug you about this. I know you're all still sorting things out Lynn Quast
Also I have turned the internet to off on my controls on this site too. So maybe that's not working ? ... Read more
Also I have turned the internet to off on my controls on this site too. So maybe that's not working ?
Adam Pick Hi Lynn, The process by which your pages will be "de-indexed" from the search engines can take up to ... Read more
Adam Pick Hi Lynn, The process by which your pages will be "de-indexed" from the search engines can take up to 4 weeks to process. Fyi, this is not controlled by our website. It is controlled by Google, Bing and the other search engines. That said, please be patient as your pages are de-indexed. Thanks! Adam
Thank you Adam!! I will be patient, although not one of my strengths :-) I do understand theses thing ... Read more
Thank you Adam!! I will be patient, although not one of my strengths :-) I do understand theses things take time.
On August 23, 2014...
Olga Landry posted a note for Adam that says:
Hello Adam, Sorry to keep bothering you. But I can't find the list of my family and friends that join this group to help and support me,
I am not getting email notice about up dates from the friends on the site.
I have to agree with Karen I like how there are comment box underneath there posting. I also like how the day of the surgery are posted as well.
Thank you again for this web site it has helped be so much these couple of months.
Yeah, I'm missing the email notices too. It's hard to keep up with people that we are waiting for up ... Read more
Yeah, I'm missing the email notices too. It's hard to keep up with people that we are waiting for updates on. For now I'm going to each person's journal to check for updates but it sure was nicer with the email alerts. Perhaps that feature is still being worked on. That said, I am grateful for the site though. - Karen Pineda
Adam Pick Hi Olga and Karen - We are continuing to make several adjustments to the new website. The email featu ... Read more
Adam Pick Hi Olga and Karen - We are continuing to make several adjustments to the new website. The email feature you reference will be working in the near future. Thanks for your patience.
To find your list of subscribers, simply click on your 'My Control Panel' and then click on the 'See My Subscribers' link. There you will find the people who receive emails when you post.
I hope that helps!
Again, thanks for your patience. We have updated over 5,000 pages on this website yesterday and still have more work to do. -- Adam
Daniel Landry Hello Adam. I, too, would like to thank you for this website! It has been such a comfort for my wife, ... Read more
Daniel Landry Hello Adam. I, too, would like to thank you for this website! It has been such a comfort for my wife, Olga Landry, and myself. I know I'm not going for surgery any time soon for heart valve surgery, (just an umbilical hernia repair) but I wanted to be able to keep everyone updated once Olga has her surgery. For those of you who have kept up with Olga, I want to thank you all! You have eased both our minds during this difficult time.
Daniel Landry And yes, I do have a mitral valve prolapse. Just not one that requires surgery.
On August 22, 2014...
OK Adam, this new site format is going to be great. I like that we will now be able to have a string of comments for each conversation without having to go back and forth between the Guestbook and Journals and posting separate entries to comment on a previous post. I think the original format with the guest book may have been meant for people to leave comments for others but we took it to a whole different level and turned it into a social network. This format will accommodate that much better. Thank you!!! For the new format AND for creating this community.
Adam Pick Wow Karen!!! Thanks for the very, very, very, very kind words. You just made my day!!!! I'll pass thi ... Read more
Adam Pick Wow Karen!!! Thanks for the very, very, very, very kind words. You just made my day!!!! I'll pass this along to our programming team!!! Thanks so much!!!
Thanks Adam. And thank you for keeping the site online during the transition. I build and manage we ... Read more
Thanks Adam. And thank you for keeping the site online during the transition. I build and manage websites and I know how difficult it is to do all of this re-configuring while keeping a site up and running at the same time. Thank for keeping us connected while you and your programmers work out the configurations. We have become such a close community so we appreciate it.
On August 22, 2014...
So Adam is my email going to post with each post? Is there a way to just have my name show? Think the new site will be great when I figure it all out:)
Oops!! Already fixed!!! Awesome!!!!!
On July 11, 2014...
Mary (mia) posted a note for Adam that says:
Adam,
I am pretty new to the community. When I try to post on my journal, I am unable to post. My story shows up, Can you help me figure this out?
Thank you again for everything
you do for the heart community.
On June 24, 2014...
Tony Copeland-Parker posted a note for Adam that says:
Adam
I used your book as I would will training to fly a new airplane type. The website is incredible and proved indispensable for the sharing of experiences.
Me being able to put my thoughts for all to see helped my mental health.
Thanks for all you have done for us.
Tony
On May 25, 2014...
Terrie posted a note for Adam that says:
Hello Adam. I want to wish you and your Family a Happy Memorial Day and give more thanks for starting me off in the right direction with my heart journey. You will not ever know what reading your book did to change my whole attitude/life. This availability to journal back and forth with other "Heart People is an exceptional accomplishment on your part. You, your work and your own Heart Journey have served to help so many! Thank you will never be enough.
On May 24, 2014...
Suzanne kosakowski posted a note for Adam that says:
You too Adam enjoy the long weekend. I don't know if you saw the post but I was so touched that you sent a note about my surgery to dr Roselli he spoke well of you and what you do for heart valve surgery patients. Thank you so much for this site and all that you do! What a different experience this would have been without the help of everyone on this site!
On May 23, 2014...
Jim Jones posted a note for Adam that says:
Hey Adam
Happy Memorial Day to you and your family also! Enjoy the weekend. I hope you have some great family time and also have the chance for some outdoor exercise.
Thanks for the site.
All the best:
On May 23, 2014...
Rach s posted a note for Adam that says:
Hey we have a long weekend in the UK too, fancy that!
On January 1, 2014...
Ernie A.S.(After Surgery) posted a note for Adam that says:
Oh yeah. And when I say "Update?" I mean heart, health etc. Not just "Good luck in 2014, and keep on tickin. :)
When's the last time you went to the cardiologist, had an echo, etc. and how is your heart/valve doing and how are you feeling? Do you still exercise and if so how much and what do you do? How is your family? And whatever thoughts you may have about being post op these many years.
Thanks again.
On January 1, 2014...
Ernie A.S. posted a note for Adam that says:
Just found that you have a journal. :)
Update? :D
Good luck in 2014.
Thanks for the book and the website, both of which helped tremendously before, during, and after open heart surgery.
You keep on tickin', too. :)
On January 14, 2013...
Adam,first and foremost, a very happy belated 7yr. anniversary to you!That's truly awesome!Secondly,I would like to thank you for sharing all the good,the bad and even the sometimes ugly, experiences that you went through too. I read the journals and often find you there with your caring comments and support.Please know that you and my new HVJ family have given me the mental strength that will carry me through this.
Sincerely,
Al Zebal
On January 5, 2013...
Hi Adam.
I saw on your note to Steve Bond you just hit the 7-year mark.
Way to go man!
-- DVB
On July 19, 2012...
Oops - forgot to mention that I posted a picture of me and Connie in my journal photos. If you get a chance take a peek - Connie looks amazing for 2 days post surgery! Denise Kirchner
On July 19, 2012...
Hi Adam, just dropping in to say hello and thank you for creating this wonderful place for us to meet other heart valve surgery patients. I am now 7 weeks post-op and doing well. I had my 6 week post-op check-up at CC with Dr. Roselli's NP today and also was able to finally meet Connie T who just had surgery there on Tuesday. It was so neat to actually meet one of my HVJ sisters in person! My husband and I had a wonderful visit with Connie and her husband and plan to get together once Connie is recovered as we live just 50 miles from one another. Once again thanks so much for your book and for starting this on-line support group. It is truely a gift to all of us. Take care and keep on tickin' ! Denise Kirchner MV Repair 5/29/12
On July 11, 2012...
Hello, Adam, Robyn, and Ethan! It has been a long time since I have written. I still read the blogs and am an advocate of your awesome book. I am still passing the information. I just wanted to thank you some more. This whole journey that you decided to take has made a difference in my life and the lives of so many others. I know that you know this, but I cannot help but repeat it and thank God some more just for you and your family. Love you guys, Victoria~Baltimore
On June 16, 2012...
Adam. Thank-you so much for this book....it has given myself and my husband so much information. Problem is ..... my surgery for Aortic Valve replacement and possible Aortic Root replacement is two days away and I still don't know which valve I want. I'm 55 and in otherwise pretty good health. You had the Ross procedure done and I hear and read it last about the same as a biological valve. How are you feeling about another surgery? Hope you can respond to this soon.
From my heart to yours, Donna Ryan
On May 3, 2012...
Hi Adam: I am new to HVJ and will be having my mitral valve repair at Cleveland Clinic on May 29th. My surgeon is Dr. Eric Roselli - from the video on CCF's website, I see he is a friend of yours. I have yet to meet him - that happens on May 25th. I have heard all good thinkgs though.
This website is such a great support and resource for me already. What a wonderful way for heart valve patients to stay connected. My husband Ric and I have both read your book from cover to cover - excellent resource as well! Thanks for all you do, and keep on tickin!
Denise
On May 1, 2012...
New site is great! You have made an amazing thing even more amazing-er! Thanks for all you do and have done Adam. No way I could have gotten through all of this without your site, the information and this community.
All the best,
- Mitch Friedman
On April 30, 2012...
Hi Adam, I like the new look! I did have a question for you regarding security. Every once in a while, I Google myself, just to see what's out there. I was somewhat surprised to find "My Story" pop up. While I don't mind other heart valve surgery folks read about my story, I don't really want just anyone to be able to view my medical info, especially my ex-husband. I periodically Google him too. :o) Is there any way to control the privacy so that only HVJers can read my journal? If not, I understand but I was just curious. I couldn't find anything on how to do this. Thanks. Warm regards, Lily (Cardlin)