By AMERICAN HEART ASSOCIATION NEWS
After surviving cancer in her teens, Susan Strong spent her life thinking she’d be lucky to reach 50. On the eve of that milestone and eight months after a heart valve procedure, she has a new attitude.
“This past year has been about making meaning out of this life I’ve been given,” she said. “So many people helped and encouraged me through these times, and I want to pay it forward, hopefully make a difference for others.”
Susan joins seven others as the newly established American Heart Association Patient Ambassadors team. This group will offer help and support by sharing their personal experiences and information with the millions of Americans impacted by heart disease and stroke. They all met for the first time this week in Dallas.
The ambassador program is financially supported by The Edwards Lifesciences Foundation. The Heart Valve Ambassadors include:
- Robert Epps, 54, of Norfolk, Virginia., who has undergone open-heart surgery to replace his aortic valve with a mechanical heart valve.
- Anthony DiLemme, 32, of Los Angeles, who was diagnosed with bicuspid aortic valve as a child, and faced two valve replacement surgeries in the past two years.
- Dennis Dobkowski, 68, whose aortic valve was replaced in January 2015, and his wife Ann, a former nurse who serves as Dennis’ caregiver and main support system. The couple live in Orange County, California.
- Kimberly Goodloe, 48, of Atlanta, Georgia a mom of two who received a mechanical valve replacement in 2009.
- Jen Hyde, 30, of Brooklyn, New York, was born with a congenital heart defect called Tetralogy Of Fallot and had her first surgery at age 3, and at 25 received a perimount bovine valve replacement.
- Bernie Oakes, 85, of Traverse City, Michigan, who battled high blood pressure and other heart issues until March 2014 when he underwent a minimally invasive surgical procedure called transcatheter aortic valve (TAVR) replacement, which repairs the valve without open heart surgery.
- Susan Strong, 49, of Colorado Springs, Colorado, who underwent TAVR for the severe aortic stenosis caused by radiation therapy to treat her Hodgkin’s lymphoma when she was 17.
“At my age I could be sitting around in my rocker, but I’ve got no reason to quit,” Bernie Oakes said. “I have a good quality of life, feeling like I did 20 years ago, and I’m having too much fun.”
Future ambassador teams will be formed for other conditions such as heart failure.
Photos by Travis Cobb
do you have anything for someone who already had a aortic valve replaced and now is waiting for aneurysm surgery to fix the aorta and replace the valve again (current valve is good, but the aortic sleeve will come with a new one). My first heart surgery was at age 38 and last check of the aorta was 4.2, so not sure when my next surgery will be. Next check for growth will be this fall. Feels like a time-bomb inside of me.
I just found your post today from July, 2015. I hope that this note gets to you. I have a congenitally bi- cuspid aortic valve and an ascending aortic aneurysm. Until recently, the cardiologist following me with yearly echos had not told me about the aneurysm in any explanatory way, so I only feared valve surgery one day. Now I realize that the aneurysm numbers mean and even more complicated surgery and It is very hard to calm down thinking about it. My number is 4.2 at this time and I am desperately trying to get into the Cleveland Clinic for a consultation.
Also, I may have a hysterectomy in Jan. and am concerned about going under anesthetic with the aneurysm as I found an article about that subject that concerns me. Seems like when it rains, it pours and I have always bounced back in life. This fearful diagnosis is one that I am finding very difficult to bounce back from and gain some optimism. I am reaching out to find others who might help me somehow feel better about this. Thank you for your time and I do hope you are doing well.
To have a support network like this is powerful! When I had surgery there was nothing available as I searched online for information and answers to my numerous questions!
Patients pre and post-op, caregivers and more can now get answers and connect with survivors from around the globe!
I look forward to learning & growing with a wonderful group of ambassadors plus connecting with patients & caregivers throughout our country/ worldwide: providing hope ,encouragement & community resources.
This is so wonderful you’re doing this! My wife and I had our first child, Oliver, 2 and a half months ago and learned he was born with unicuspid aortic valve stenosis. It’s of course terrifying to hear a diagnosis like this, but knowing there are others out there living through this gives us hope and optimism for our family’s future. Thank you for taking the time to support others!
This is wonderful. As a fellow zipper club member with a congenital heart defect and mitral valve repair this year, I’d live to learn more and get involved. How does one do so? Thanks!
If you ever need a AHA patient ambassador for for ascending aortic aneurysm repair I would be interested in talking to people. I had surgery for that at Mayo Rochester in 2013. I also have a bicuspid aortic valve which they continue to watch.
Great news about the ambassador program for Heart valve patients – I received a mechanical aortic after bacteria infection (streptococcus infection). Please let me know how to become an ambassador.
Having lost my brother and mother in the last year and a half was I next???? With no information when I was told I needed surgery I was Terrified….sound familiar…, I needed information and I had a hard time finding it. And not really getting all I needed until after my surgery when we met the AHA people at a patients day, I and my wife knew we needed to be involved with helping others. The AHA Support Network is your key to getting the information and getting the How, When, What and Why of what is going to be a life changing event. God bless all – we’re here to help.
I think this is a great new program, I have a mechanical aortic valve, due to bacteria infection.I love to be ambassador.Thank you AHA for always supporting the general public and cardiovascular disease. Everyone will benefit from this program.
It was my good fortune to be included with this group of “freshly minted” Ambassadors – for the Aortic Valve replacement AHA Program. Further, I am the lucky one standihng to Kimberly’s left – with my arm around her. Like my fellow Ambassadors, I have begun “filling the gap” between scared, uninformed patients, and the ones that would like to learn more & become confident Heart Valve reciopients.
Kimberly is an outstanding messenger! She is warm, friendly and a true veteran in this miracle world of Aortic Valve replacements. I am proud to stand with her!
I know Bernie Oakes personally! He will be an excellent Ambassador. He is beating the odds at 85, I hope to have half his spunk and ambition when I reach my third age. As the Director of our Senior Center, Bernie represents what we call successful aging, making choices to live a healthier life has opened many doors for this man of 85 years giving his younger friends something to aspire to.
I was born with tricuspid atresia had valve replacement at 18, and my heart reconstructed at 39 . I’ve had 6 open heart surgeries altogether and I have a very full life. Love my scars they are who I am.
I look forward to the heart failure group. I’m a 29yo PPCM mom.
I had open heart surgery to replace a defective aortic valve with a bovine valve on July 13 this year. I Also had my mitral valve repaired. I am 56 years old. I think this forum is great. Can you set up a Facebook page or another forum for questions or comments? Thanks!!????????????
This is exciting! When I had a mitral valve repair four years ago, there was very little information available on line, in books and elsewhere. I’m so excited to see that this absence is being acknowledged and these ambassadors are here to help others. I live in the Dallas area. If you need volunteers, please let me know. Congratulations on taking this step for everyone who has heart disease, which will help inform patients, family members and community members. Thank you.
My mom had a very successful TAVR procedure 2 years ago. She is currently 93 years old. Wondering if Bernie Oakes could comment about how long it took for him to get back his energy and what he did for rehab. Mom is not quite back to her prior lifestyle of volunteering, etc. and doctors are telling us she’s just the ‘normal’ 93 year old. Hard to accept. It’s wonderful finding this blog and the support! Thanks!
what a wonderful thing that is happening! the information coming out now is ‘its about time’.
Eleven years ago I needed a mitral valve repair, In Toronto the hospitals are different than in the U S A . There was volunteers who were able to give you a lot of information about the surgery. They put us co and the out come, and recovery as well They put us completely at ease . The recovery was three months but no worries!Hope there will be a system at work there.
My primary care doctor just told me Monday that I have a leaky heart valve. That, basically, is all I know so far. I am awaiting word as to when my first visit to a cardiologist that my primary care doctor is sending me to I won’t know, until I see him, exactly what is going on. I stumbled onto this and it is nice to know that thee is a place to go to learn more. Since I have just been diagnosed, I can see how much this forum might be able to help me through whatever process that I may have to go through in the coming days and weeks. I get to start at “ground level”. Glad you are there.
I was very pleased to see some info ( a little) mentioned concerning the Mitral Valve…. I can’t seem to get my doctors to give me info on exactly what is wrong with mine. I believe that is the basic problem with AFIB and HPB… I am looking forward to getting more info on this… Geraldine Stirling
We’re all different, thank goodness! What’s good for me may be okay for mom, but there might be a better regimen for her. Where should she go to get the best guidance? I would start with the “pro’s”: Her cardiologist and/or the surgeon. If you are the primary care giver, accompany her when she looks for guidance or a change in her program. It’s amazing what you can forget or slough off on a visit. My lady won’t let me see the doctor unless she is with me! And, it’s amazing what she remembers!
My program consisted of a nurse visiting me at home for several weeks – once a week, checking the vital signs, and talking with me about my activities and exercises She offered good suggestions and when I followed through I was better for it! I progressed to the point where her visits were not required and she recommended a heart rehab program at the local hospital. I participated in the rehab program (very beneficial with knowledgeable and friendly- professional personnel) for a month or two, twice a week. The exercises were monitored, changed when appropriate, and very beneficial. I was looking forward to returning to my Health Club and renewing my routines. My condition steadily improved.
Clearly exercise, tailored to your mom’s condition and needs are, I believe, the right path to follow. It’s too easy to find something else to do – other than working out. Called: excuses. Go with her! You get some too. She’s not alone in fighting to retain stamina and outside active interests Your influence and motivation are obviously important factors in sustaining her level of health.
Thank you for your question! It made me remember my fun rehab experiences. Some of those who helped me are now good friends!
This lady, that said the nice things about me is a true champion! She put together a Shuffleboard Tournament a week or two ago – doing the “heavy work” by herself! The winters up here in Michigan are very unfriendly to the courts Snow, ice, melting temperatures, followed by more freezing leaves the courts in terrible shape. Lori turned this mess around.
She knows better than to ask me if I would like to make a comment just before the tournament begins, but I still got my two cents in. The tournament sponsor is the prominent Funeral Home with two of the finest “movers & shakers”. I commented that “Old shuffleboard players never die, they just slide off – either into the kitchen, or they’re gone” Then, I noted that, ” The sponsor didn”t like to hear that.” In the semi-finals of the tourney, guess who beat me. Right.
Lori has supported the American Health Associations activities and is one of our finest spokespersons. As Director of our Senior Center she is in a key position to advance our programs. She is a Champion!
Medical Science – this day and age!
What is going on in the research and development circles – of those organizations that are busy with the human heart, is not only miraculous, but comes very close to being unbelievable, particularly for the layman like myself. Having recently undergone a TAVR (Trans catheter aortic valve replacement) I thoroughly appreciate the advances that are happening! Not vey long ago the procedure that I benefitted from wasn’t readily available. Now, I have learned about a new procedure being tested across the country by 50 hospitals where a wireless pacemaker will be installed in 670 patients. The amazing thing is that the new device is wireless, about the size of a Bic pen cap, less that 10 percent the size of the one that I am using and they are installed directly into the heart. The advantages of this new device are many. Of course the catheter technology is used to install the device, using X-ray guidance. And, The Beat Goes On !
I am writing this comment on World Heart Day. What is World Heart Day? Another one of those days – with special identification – like Veterans Day, Mothers day, etc? What does it mean? How should we react?
I think each of us probably has a different perspective on observing World Heart Day. Remembering a loved one that we lost because of heart stroke, or heart disease? Being thankful for the medical advances and recent procedures that are now available for the heart patient?
Or, so what? I’m healthy; my heart is strong and I am active, enjoying life! If this is your answer, then be thankful and keep up the work! If you know that you are a little overweight or that smoking hasn’t been a problem for you, or that the high blood pressure is something that you can live with, then it is time for you to WAKE UP ! Take a moment on this World Heart Day and at least selfishly ask yourself< "Could I be smarter and correct or change something that would be better for my heart?" If you are honest with yourself, and why wouldn't you be (?) and you know that you could be doing better things for your heart, then give it a try.
I am thankful for the many dedicated men and women who have done so much to advance the knowledge and treatment of heart disease. Without them, I know I wouldn't be writing this today! So, as a minimum, I have a special place "in my heart" for World Heart Day. It has a very special meaning for me, and I believe that many others share the same feelings.
Can someone send me information about the program, I have a mechanical Heart valve.
I was wondering how do you become part of this organization? I was born with Shone’s disease and now 29 years old healthy and a athlete, looking for resources where I can provide eclncouragment and understanding to others. Thank you
I am looking for any information regarding TAVR (Trans catheter aortic valve replacement). I am looking for the pro’s and con’s. My father is 77 years old and is scheduled to have surgery in January 2016. He is getting nervous about the procedure and is thinking of not having it done. Any information would be greatly appreciated.
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I was a recipient of a valve replacement at the age of 33, and I am now 56 years old. It has been 23 years into my St Jude Mechanical Heart Valve and life is wonderful. I’m definitely interested in becoming an Ambassador for Heart valve patients
I just received the news from my cardiologist that it is time for an aortic valve replacement. It is a familial issue for me as my brother and mom both had valve replacements. I am 52 years old and an avid runner, cyclist, and outdoors enthusiast. I am also a nurse, which means that I have enough knowledge to be dangerous, but, it doesn’t help with the anxiety and concerns that I have. I stumbled across this support group while researching valve replacements and reading about AHA aortic valve Ambassador Anthony DiLemme’s story. He is very encouraging to me and I want to become part of this group. I am in the process of selecting a surgeon and hospital for my procedure. Any words or encouraging advice is appreciated.
Hi, I’m Bob. Had my aorta resection at 20, and planned my goals, to be finished by 40. When still going at 46, a need for ablation was found, along with an enlarged heart, caused from a leaking mitral valve. Now at 56, having the valve replaced 7/13/16, I think even more, on how to help homeless. My wife and I have been working in the low rent housing area, on a very low scale. Said by experts, to be the biggest need to end homelessness. Now I’m looking for assistance in progressing that, into building neighborhoods of low priced good housing. Any one interested in helping, can contact me at [email protected]m.
I would love to become a heart valve ambassador. Please contact me