The Importance Of Support Groups For Heart Surgery Patients?

By Adam Pick on August 27, 2009

Throughout the highs and lows of my heart valve surgery experience, my support group never wavered. Their commitment to me and my recovery was extraordinary considering the challenges (cardiac depression, pain management, Vicodin addiction) I faced.

 

Me (Adam) With My Family

 

That said, I am always thankful when I receive a patient note that echos this point. So, without further ado, I felt you might like to read Charles’ (also known as Chaz) thoughts about support groups, heart valve surgery, and the use of iPhones to stay connected with his family and friends – before, during and after surgery.

 

Chaz In The Intensive Care Unit
Chaz In The Intensive Care Unit

 

Adam,

One week ago I entered Good Samaritan Hospital in downtown Los Angeles for an aortic valve replacement.

I’ve been home now for three days. In retrospect, I find the whole journey positive – except for the occasional cough. To enhance my recovery, I look forward to starting cardiac rehab next week. I know, I know… I’ll take it easy.

I am a 62-year old architect who lives with my girlfriend (Jane) and dog (Duncan) in North Pasadena, California.  As I have lived here for less than a year, most of my family and friends live back east. But, they still formed an amazingly protective support group even though they were thousands of miles away. Thank you Internet! Thank you iPhone! Your idea of building a “support group” was the single-most important part of approaching each step in the heart surgery process, positively.

 


Chaz With His Support Group

 

Finally, I wanted to thank you for your heart valve surgery book. It provided me a much-needed road map for my cardiac surgery – even if different turns were occasionally made. Your book helped ease the unknown, answer simple questions (many of which I would not thought of asking), and established a realistic expectation for each “next step”.

Again, thank you!
Chaz


Written by Adam Pick
- Patient & Website Founder

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.


jerry says on August 27th, 2009 at 10:23 am

Do it yourself Heart Valve Surgery? There’s an app for that!



Adam Pick says on August 27th, 2009 at 10:27 am

Jerry,

As you might have guessed…

I have that app – or, at least, the lite version of it. It’s pretty fun! Have you played the full version of the game?

🙂

Adam



Matt says on August 27th, 2009 at 1:11 pm

You know, a well developed heart valve replacement iPhone app would be really cool! Among being a Computer Systems Engineer full time, I also work at my local Apple store in Richmond, Va as a Mac Specialist.

I know that when I got to the hospital this coming Tursday for my aortic valve replacement, my iPhone will be like a “blanky” for me:-)

I’m a very (otherwise) fit & healthy 32 year old that just found out last March that I have aortic regurgitation and in that 16 month period it went from moderate to severe!
Oh well such is life, besides i have been training & staying fit for some reason, why not this.

Because of my youth & hope to never have to have a re op, I’m choosing the gold standard of mechanical valves, the St. Jude.
In my assessment, Coumadin in nothing more than a minor inconveinence and the clicking of the leaflets closing will become white noise to me in the months following surgery. We’ll see…….



Bill W says on April 21st, 2012 at 11:29 am

Is anyone aware of a support group in Tallahassee, FL or Florida’s panhandle for persons who have undergone heart valve surgery? I am trying to affiliate with such a group. Thank you.



jAMIE says on August 2nd, 2012 at 9:25 pm

I am a chf patient and am finally considering the surgery.I don’t know which valve to chose. I have chronic kidney disease, Should that make a difference?Me very sad
:(.What is a good hospital to have the procedure.One week in the hospital sounds good but is that the minmallyinvasive.Is an angiogram safe? Me worried:(



William says on August 3rd, 2012 at 9:33 pm

Jamie: I recently underwent mitral valve repair using minimally invasive surgery. I went to Shands Hospital-UF, in Gainesville, Florida. I found that not every hospital recommends or performs minimally invasive heart surgery. So, if you find one that does not, then keep looking. With minimally invasive heart surgery you recover faster and experience less pain and less scarring.



Sarah says on August 5th, 2013 at 3:10 am

I am 28 years old and on July 3, 2013 I had aortic valve replacement surgery. I was admitted to the hospital on June 24th for what I thought would end up being the flu. Four days later I had a TEE and found out that I had to have open heart surgery.
I was devastated. I had just moved to a new state with my husband away from all my friends and family. Even though I have my husband which I couldn’t be more thankful for I have never felt more alone.
I still don’t think that I have quite processed that I had open heart surgery even though I have a scar and pain to remind me of it.
My mother-in-law found your book online and sent me a copy. It has helped me to realize that everything I am feeling is okay and ‘normal’.
Thank you for sharing your story.



Peta says on August 31st, 2014 at 2:44 am

Hello
My name is Peta I am 22 and have been diagnosed with Supra Ventricular Tachycardia and epilepsy. So far this year I have had 2 trips to the hospital and multiple trips to cardiologist specialists and am stressing about the fact that I may need a pacemaker. I am trying now to find a support group but am struggling. Anyone recommend a support group in Tasmania? any feedback would graciously appreciated.



Adam says on August 31st, 2014 at 8:10 am

Hi Peta, So sorry to hear of the health challenges you are experiencing. Unfortunately, I do not know of any Tasmanian support groups. But, if I hear of one, I will let you know. Adam Pick (patient & website founder)



Peta says on September 1st, 2014 at 5:15 am

Hello Adam
Thank you for replying to my message, I am concerned about the challenges that lay ahead but feel that I will be supported one way or another. I can not believe that I need to go through this roller-coaster. Helps to hear other people telling their stories.



Colleen Connors says on October 13th, 2014 at 5:42 pm

Hi, I just had Open heart surgery. I find myself just busting out in tears several times a day. Usually at night. I’m 51 and a female. My family doesn’t understand why I’m depressed. I don’t understand it. I really could use someone to talk to.



Tony Anthony says on November 26th, 2014 at 12:56 am

Hi Colleen,
Though I cannot tell you why there is a strong emotional component to having heart surgery and those emotions often lead toward depression rather than happiness. Luckily for me, my uncle warned me before my surgery so I recognized the seemingly unwarranted depression. Now five years after my surgery I still had some craziness, but have recently (two months ago) begun practicing yoga with some AMAZING results. For the first time since surgery I am master of my emotional domain again. I no longer worry needlessly, feel depressed about my future or get scared about every twitch in my chest. And, I finally feel powerful again! I’m a 40 year old man and have felt frail, fragile and brittle since they sawed me in half five years ago. I finally feel like I am again able to protect myself and my loved ones. I also happen to look fantastic. My arms look better than they did in all of my 30s. I wish you the best of luck in your recovery. Know that you are not alone, the craziness that often becomes you is normal and part of the healing process and, most importantly, it get a little better each and every day.
Yours,
Tony



Cherrie says on December 23rd, 2014 at 8:55 pm

Hi Colleen I feel your pain it has been a year since mine and I still have my emotional ups and downs and the roller coaster ride. I understand from everyone it will get better I certainly am hopeful that it will I wish you all the best and feel free to keep in touch with me through here. I am looking for a support group for open-heart surgery patients. I live in Tampa so if anyone knows of any support group I would appreciate any info



Leslie Sandercock says on December 27th, 2014 at 6:36 pm

Hi, my name is Leslie. I’m 33 and have never had a heart problem in my entire life. Until now. Just less than 2 months ago i had mitral valve replaced and my aortic valve cleaned. Im fairly certain im entering cardiac depression or ptsd. Definitely could use more support than i have and am not sure where to turn.

Please help me.



Saifullah al Mujahid says on January 23rd, 2015 at 8:22 am

i am 27 year old & i am going to have mitral valve surgery very soon. How much pain will i get after my surgery?



Heather Oerter says on February 10th, 2015 at 12:47 pm

I am 30 years old caught my heart issue at a flu visit less then a weel later I was having open heart surgery to place s mechanical valve due to Aortic stenosis, every tiny nightmare i had, my body rejected the sternal wires so had the top onez removed due to the infection pocket they created my cardiothoracic surgeon is very qualified however I refuse to go back to him he ignored my complaint that something was wrong fot over 6 months had a picc linr for over 3 months due to the infection, he left the bottom wires in!!! Which are noe causing major muscle damage…I have been overdosed on Coumadin my pt/Inr was 13 signed paperwork to have both legs and left arm amputated in an attempt to save my life, God had my back because as i was laying in the OR preparing for surgery one last doctor came in with an idea and praise god it worked saved my legs and arm, i never had anxiety in my life untill after my heart surgery now I suffer from crippling bout of anxiety but I am working on it. There is a light at the end of the tunnel and althought i still suffer from major muscle failure I am working on it it seems the bad dsys outweigh the good but on those good days you forget all about the bad….so to anyone struggling hang in there it is a slow uphill battle but making iy to the top will be a greater victory than anything ever done before!!



Brandi Kugal says on April 10th, 2015 at 1:16 am

Hi my name is Brandi and I am 32 just in jan. I had 2 valve replace and a pacemaker put in. I just want to talk to someone that has gone through the same thing. . I have had problems after problem since the surgery. Is it every going to get better. .



Dan Giampaolo says on June 27th, 2015 at 4:32 pm

Hi my name is Dan. Im 16 and I was born with aortic stenosis. I had my operation on January 15th of this year ( I had the Ross Procedure) and im definitely still going through cardiac depression and this has been like this for a long time almost 2 and a half months ive been with this and I cant shake it. Ive been going to a therapist and it has not been helping, nothing is helping. For the last 3 weeks Ive been having nightmares of watching myself pass away when I was laying in my hospital bed, then a have another nightmare that I am falling into nothing. I cry sometimes when I wake up from these nightmare they wont stop im trying to stay positive but not helping. I stay active but not a lot helps. I could use some advice or support anything to help me make it stop.



Mayra Diaz-Hernandez says on November 14th, 2015 at 3:43 pm

I’m a 29 year old married female and I had endocarditis. I am now facing the tough decision of choosing an organic valve versus a metal valve for mitral valve replacement. I have not yet had children and would not be able to if a choose a metal valve. Since metal valves require blood thinners I could bleed out during labor. If I choose an organic valve I can have kids but would have to undergo another surgery since organic valves only last 10-20 years. I understand that I can always adopt but I want my own. Has anyone had to make the same decision? How do I decide?



Robert Miller says on January 4th, 2016 at 6:42 am

guys i have a question i really need help with please i had a 5 pass well its a triple with another 2 stints but does or did any have night mares or constant thoughts of your heart being taken out of your chest and you laying there on the table only being kept alive by a machine as well as thoughts of dying all the time because you have or had to wear a defib unit all the time please someone help im in trouble i cry alot and i stay scraed



Robert Miller says on January 4th, 2016 at 6:45 am

i also have been told ill never work again and i need help with resources but i dont know where to turn i live in winder ga i get food stamps but not much good if i dont have a place to live



adam says on September 8th, 2016 at 10:35 pm

how are you doing now? I’m about the same age and went through a similar experience



Faith Cadiz says on January 22nd, 2017 at 3:16 am

Hi, I’m curious to know how your surgery went and how you are doing. I had an open heart surgery around October of 2015. I’m new to his group and just wanted to reach out to someone who had the same experience.



Faith Cadiz says on January 22nd, 2017 at 3:20 am

Tony, I had my surgery October 2015. I thought I was doing fine, emotionally but recently developed anxiety. I tried yoga twice and I was discouraged to continue because I felt stiff and I didn’t flow like every one else. How long did it take you to feel comfortable with the practice?



brian minnick says on February 1st, 2017 at 12:07 am

Hi faith i had a dissection 8months ago and i have a mechanical valve when was 45-year-old would like to speak with someone who has the same valve.you can email me at orangeventura@yahoo.com or leave me a message on here. Thanks



Libby Loftus says on July 19th, 2018 at 7:26 am

is it normal to have pain in your chest area post valve replacement
/bypass surgery even after several month? My husband s still experiencing pains in his chest area several times a day. Stress test shows no problems with heart.



Robin Holcomb Atchison says on October 12th, 2018 at 6:31 pm

I had a MI at 42 (14 yrs ago). I had the depression/!]anxiety issue. My husband had aortic valve replacement on 9/19/18. I had our physician go ahead and prescribe antidepressant and anxiety meds for him to take after he got home. I can only imagine what he would have gone through had I not been proactive. He is now 3 weeks post surgery and I am looking for a support group for him. He is still in the early recovery phase. I would love to get a copy of this book for him. Where can I order one?



Donna Marie Behret says on December 11th, 2018 at 6:40 pm

Hi,My Name Is Donna I’m A 43yr Female,I’m A Former Paramedic And FireFighter,I’m Getting Ready To Have A 3rd Open Heart,On Dec 17.Im Soo Scared And Nervous.Need All The Prayers I Can Get Right Now.



Lawrence Mutisya says on January 19th, 2019 at 5:40 am

Hello friends!
I am Lawrence, a Kenyan. I am about to undergo mitral and aortic surgery. There are few (6) cardiologists in Kenya and accessing them takes very long.
The cost of surgery is also overwhelming here.
I am very worried of my life! Each day that dawns, I have no idea of how it sets. Pray for me!
If you have assistance that can address this issue kindly share.


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