Ambassador Twins Kim Ketter and Shawn Rivers.

Kim Ketter and Shaun Rivers

ER nurse Kim Ketter had been feeling exhausted and short of breath for months, but it wasn’t until one day when she suffered heart palpitations at work that she decided to see a doctor about her symptoms. Her diagnosis of cardiomyopathy and HF came as a surprise. When she learned her condition may be genetic, Kim knew that her twin sister and fellow nurse, Shaun Rivers, could also be at risk for HF, so she suggested Shaun see her doctor and get tested as well. The results from Shaun’s stress test indicated that she also had HF.   

 

As ambassadors, Kim and Shaun are sharing their story to provide hope and support for people affected by HF. 

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  • Twins1956
    Twins1956,
    Hi Kim and Shaun, Your story has touched me as my identical twin and I also have dilated cardiomyopathy, along with congestive heart failure, severe leaky mitral valve with regurgitation and ventricular tachycardia. I just put my story on support network of today, October 1, 2018, under Twins 1956 under Dilated Cardiomyopathy, Congestive Heart Failure, Ventricular tachycardia and Severe Leaky Mitral Valve with regurgitation. There is my full story. I was wondering if you two did any genetic testing as my cardiologist, Dr. Michael Fowler at Stanford, Palo Alto believes that dilated cardiomyopathy is genetic. Through the genetic testing, we found out that our TITAN/TTN gene mutates which has caused our hearts to enlarge. We also joined the Ohio State University/Stanford case study for the dilated cardiomyopathy. We both have two children, our daughters first and our sons second. Her children will be tested through the case study but my 2 children are interested at this time. They have a 50% chance having this gene also. And if it was passed to them, then of course the concern would be if their children have it. Thank you and God Bless you both!!!
  • Twins1956
    Twins1956,
    Hi Kim and Shaun, Your story has touched me as my identical twin and I also have dilated cardiomyopathy, along with congestive heart failure, severe leaky mitral valve with regurgitation and ventricular tachycardia. I just put my story on support network of today, October 1, 2018, under Twins 1956 under Dilated Cardiomyopathy, Congestive Heart Failure, Ventricular tachycardia and Severe Leaky Mitral Valve with regurgitation. There is my full story. I was wondering if you two did any genetic testing as my cardiologist, Dr. Michael Fowler at Stanford, Palo Alto believes that dilated cardiomyopathy is genetic. Through the genetic testing, we found out that our TITAN/TTN gene mutates which has caused our hearts to enlarge. We also joined the Ohio State University/Stanford case study for the dilated cardiomyopathy. We both have two children, our daughters first and our sons second. Her children will be tested through the case study but my 2 children are interested at this time. They have a 50% chance having this gene also. And if it was passed to them, then of course the concern would be if their children have it. Thank you and God Bless you both!!!
  • Twins1956
    Twins1956,
    Hi Kim and Shaun, Your story has touched me as my identical twin and I also have dilated cardiomyopathy, along with congestive heart failure, severe leaky mitral valve with regurgitation and ventricular tachycardia. I just put my story on support network of today, October 1, 2018, under Twins 1956 under Dilated Cardiomyopathy, Congestive Heart Failure, Ventricular tachycardia and Severe Leaky Mitral Valve with regurgitation. There is my full story. I was wondering if you two did any genetic testing as my cardiologist, Dr. Michael Fowler at Stanford, Palo Alto believes that dilated cardiomyopathy is genetic. Through the genetic testing, we found out that our TITAN/TTN gene mutates which has caused our hearts to enlarge. We also joined the Ohio State University/Stanford case study for the dilated cardiomyopathy. We both have two children, our daughters first and our sons second. Her children will be tested through the case study but my 2 children are interested at this time. They have a 50% chance having this gene also. And if it was passed to them, then of course the concern would be if their children have it. Thank you and God Bless you both!!!
  • Twins1956
    Twins1956,
    Hi Kim and Shaun, Your story has touched me as my identical twin and I also have dilated cardiomyopathy, along with congestive heart failure, severe leaky mitral valve with regurgitation and ventricular tachycardia. I just put my story on support network of today, October 1, 2018, under Twins 1956 under Dilated Cardiomyopathy, Congestive Heart Failure, Ventricular tachycardia and Severe Leaky Mitral Valve with regurgitation. There is my full story. I was wondering if you two did any genetic testing as my cardiologist, Dr. Michael Fowler at Stanford, Palo Alto believes that dilated cardiomyopathy is genetic. Through the genetic testing, we found out that our TITAN/TTN gene mutates which has caused our hearts to enlarge. We also joined the Ohio State University/Stanford case study for the dilated cardiomyopathy. We both have two children, our daughters first and our sons second. Her children will be tested through the case study but my 2 children are interested at this time. They have a 50% chance having this gene also. And if it was passed to them, then of course the concern would be if their children have it. Thank you and God Bless you both!!!
  • Twins1956
    Twins1956,
    Hi, I didn't mean to send my above story 4 times. We have been experiencing internet issues as we made a change to our internet server. Thank you again....
  • skidd1973
    skidd1973,

    Hi, my brother is suffering from heart failure. His condition has become so bad that his heart is only working at 10%. Doctors are saying he will need a new heart or a pump. They are now concerned that not enough blood is getting to his kidney. He does not have insurance. The only hospitals in chicago that conduct the surgeries above or University of Chicago and NOrthwestern. He cannot even be considere for either surgery until he has health insurance. At this stage, no insurance company will cover him without the monthly payment being impossible to pay. In additon the social workers at the his curent hospital are of no use. They state, they ahve no information the can provide to us. My family is at a loss. we have no idea where to even begin looking or what actions to take. Any advice? Thank you kindly for any information you can provide.

  • Lillynichols
    Lillynichols,

    I am also a Nurse and working hours . 

    I went to the ER yesterday and they admitted me for observations . We have strong genetic history  of Cardiac Disease and my sister had a Widow Maker with 99% blockage and NO Symptoms last wk and they put 2 stents in. My 3 siblings have had stents placed . We have history of CAD , hypertension  and Diabetes in my family.  I dont have any of those...I am a hiker and backpacker and work as a surgical RN. Very busy and involved in Boy scouts and Marching band HS as the RN .This week I had SOB and Fatigue and some chest pain. This has been becoming more frequent. 

    I went to the ER and had all tests done , including a Nuclear stress test on the treadmill , plus cardiac enzymes. After all was done , the NP told me that my stress test was Negative and all results were normal?

    I still dont feel right and occasionally have the sensation of chest pain with SOB.

    I will investigate with my cardiologist this week to rule out anything. 

    Any advice?

    Concerned RN,

    Lilly Nichols RN

    lillynichols@ymail.com 

     From Texas 

  • leezamessey
    leezamessey,

    can you please fill this survey

    i am a student of B.pharmacy and i have to make a report on heart failure patient 

    it will be se great of you if you help me by filling this survey on heart failure patient

    https://www.surveymonkey.com/r/?sm=_2Fw3ZpraXJuxJfqwS4Iq_2Bcqcr7gilNvinpwSPQxzLogU_3D

  • BrendaAnder
    BrendaAnder,

    Great suggestions.

  • C4181
    C4181,

    I am 48, a wife and mother of two, and am the Director of a very fast paced hospital unit.  I am very used to multi-tasking, putting others' needs before mine, and minimizing symptoms.  I had no idea that the bloated feeling, lethergy, and cough/cold that would not go away was heart failure.  This came out of left field!  With 15% ejection fraction, I feel that I am blessed that I got help in time.  Now, I need to wrap my head around what comes next.  A whole new balance..... And, listening to my body in a way that I am unaccustomed!  I am looking forward to learning how others have found this balance!

    C in New York

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