Mended Hearts Open Forum

Expand all | Collapse all

Welcome! Introduce yourself!

Jump to Best Answer
  • 1.  Welcome! Introduce yourself!

    Posted 02-23-2017 11:14
    Hi everyone!

    We are just now starting to build our amazing online community. Welcome aboard this exciting new project. Please take the time to introduce yourself. I'll start!

    I am Andrea Baer, Director of Patient Advocacy here at Mended Hearts and Mended Little Hearts. I also have a son who was born with a congenital heart defect and have been a part of this organization since 2009. I'm also your community manager here at Connections in a Heartbeat! You can reach out to me anytime with questions or help. 

    Looking forward to connecting and sparking some great conversations. 

    Andrea

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------


  • 2.  RE: Welcome! Introduce yourself!

    Posted 02-23-2017 11:20
    Hi Andrea,

    My name is Arlene and was part of a Mended Little Hearts group in Lubbock, TX.  My husband and I have recently moved to Santa Fe, NM.  We had a daughter with a CHD.  My professional experience is as a nurse, I've worked in all aspects of nursing: L&D, MICU, case management, and now in the education sector.  I'm currently in graduate school and pursuing a MHA degree with a focus on health policy & administration.  My goal is to use this degree to help with CHD awareness in some form.   I look forward to getting to know everyone and seeing this group grow (as Dave has mentioned in a previous thread).


    ------------------------------
    Arlene Britt
    Santa Fe NM
    (575) 602-3569
    ------------------------------



  • 3.  RE: Welcome! Introduce yourself!

    Posted 02-23-2017 12:00
    Hi Arlene!

    Glad you could join us. What a great way to give back with your degree and using it to fulfill your passions.

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 4.  RE: Welcome! Introduce yourself!

    Posted 02-28-2017 08:15
    Good morning, all! 

    My name is Nicole, and I'm in Arlington, VA. I'm a medical writer/editor (trained as a pharmacist). I hit my 6-month post-op recovery date on 2/26, just a couple of days ago, after OHS to replace a congenital bicuspid aortic valve (I opted for a St Jude tissue valve) and to assess a growing aneurysm in the ascending aorta. Surgery at Inova Heart and Vascular went well, and recovery isn't going too badly either, but I'm looking at (perhaps) another surgery for the aneurysm in the future. I'm excited to be part of this new community! 

    ------------------------------
    Nicole Van Hoey
    Arlington VA
    nicolemarie188@gmail.com
    ------------------------------



  • 5.  RE: Welcome! Introduce yourself!

    Posted 03-03-2017 12:16
      |   view attached
    Hello! My name is Geri. I am a mom of an 8 month old named Ryner,  with hypoplastic left heart syndrome. He has had two open heart surgeries, the norwood procedure and a bidirectional bilateral Glenn procedure. We found out about his condition when I was 20 weeks. After he was born, he was sent to children's hospital. At two days old he had his first OHS. On December 22nd, he had his second OHS. He was not eating well by mouth after his Glenn so they sent him to the children's institute for a feeding program. He was there a few weeks but was not making any progress. They made the decision to send him home until his g tube surgery. He has been home with us about a month now. He has no ng tube, (he pulled it out) and it eating above his goal intake! His cardiologists gave us the ok to cancel the g tube surgery! Now he is learning, grow, and thriving everyday! My goal as a heart mom is to spread awareness about CHD and to provide support for others who are going through the obstacles and struggles that we went through! 

    ------------------------------
    Geri Hayes
    Monongahela PA
    (412) 339-9177
    ------------------------------



  • 6.  RE: Welcome! Introduce yourself!

    Posted 03-03-2017 16:18
      |   view attached
    Hello. I'm Elaine. My son Zack has LQTS2 and will be 20 this May. He also has Pierre Robin Sequence which means he had a (repaired) cleft palate,etc. He's had many surgeries at Strong Hosp in Rochester and several at Boston Children's Hosp. I also have a nearly 18 year old daughter. Zack has struggled to cope with his diagnosis. It's really hard on him sometimes. He's a tough guy and really does well though given all he's been through. 

    ------------------------------
    Elaine Stickles
    Rochester NY
    (585) 723-9603
    ------------------------------



  • 7.  RE: Welcome! Introduce yourself!

    Posted 03-07-2017 13:48
    Your son and my daughter would get a long GREAT! She was stubborn with her bottle feedings and just wanted food! She's now our snacker, all day long and full meals, since her pacemaker surgery in July she's been an eating machine. Shocking with only 4 teeth, she's 8 months post op and has been consistently putting weight on. Hallelujah! She and my 4 year old son, Cooper have Congenital Complete Atrioventricular Block. Cooper is unpaced and tolerating the lower heart rate well. Paisley did not and she was having some premature beats coming through, along with declining heart rate, failure to thrive since she was not gaining weight, she had her pacemaker put in July 29, 2016. 2 weeks post op she was full blown crawling all over the place! It was wonderful! So happy to see another CHD kiddo loving to eat now they feel so much better! He's adorable! 

    -Lydia 

    ------------------------------
    Lydia Howard
    Clovis CA
    (559) 917-2843
    ------------------------------



  • 8.  RE: Welcome! Introduce yourself!

    Posted 03-09-2017 09:47
    I became a heart mom at 16 weeks (November 11, 2103) with my son.  I never realized how prevelant CHD was until my son was 4 months old.  I live north of Baltimore, Maryland.  I currently belong to the Baltimore Group of Mended Little Hearts.  
    My son was born with multiple CHDs.  Due to the complexity of his CHDs, we needed to deliver at a "big" name hospital.  My husband and I did a lot of research and chose the hospital we did because we felt "comfortable" with many of the cardiologists, the surgeon, the facility itself, and the locality.  We have a "heart" healthy daughter who is 4 years older than our son so staying close to our family and friends was our main priority.  
    Our son was born at 40 weeks and 5 days.  I was able to hold him briefly after birth before the took him to the NICU and get him all "hooked up" and do an echo.  Based on the echo, our surgeon felt it was best to do his initial repairs in a 2 step surgery (dextrocardia, transposition of the great arteries, ASD, VSD, and coarctation of the aorta).  He had his first surgery to repair his coarctation of the aorta at 3 days old.  The surgeon did a thoracotomy to repair not only his actual aorta but widen his arch using a corematrix patch (name of the patch could be incorrect).  After his repair, they took him off the medicine which allows his PDA to stay open.  They hoped his PDA would not close during that time.  Unfortunately it did so they went in and did a "balloon" of his ASD.  He already had a hole but they made it bigger.  They believed his ASD would have closed on his own.  They also felt his VSD would close on its own.  At 10 days old he had his "big" OHS.  During the OHS, the completed the arterial switch and closed his VSD and ASD.  Since they were in there, they went ahead and closed them.  They also "patched" up a valve (I don't remember which one but I believe it was his bicuspid- I know I am bad :) ).  They did leave him open for 3 days.  My son was released from the PICU less than a week later and was discharged at 3 weeks old.  We could not believe it!  He had bumps in his recovery but managed to fight hard!  We were initially told to expect a 4-6 week hospital stay.
    Since being released he did have two heart catheterizations.  The first was to balloon his aorta where scar tissue was building up.  He was 4 months old.  After this procedure was when I really got involved with local heart moms and saw just how prevalent CHDs are!  I was already a member of MLH and MLH of Baltimore main page but not their chat page.  There I connected with more heart families.  At 14 months old, my son went in for another heart cath to balloon his aorta again.  This time they also placed a stent in his left pulmonary artery due to stenosis.  As they went to balloon the aorta, they noticed a bubble.  Needless to say the balloon did not take place and our next step was another surgery.  At 15 months, our son went in to repair his CoA repair.  This time the surgeon was able to do end-to-end repair.  He was able to do a thoracotomy entry through his first scar.  The surgery was a success.  My son will be 3 in May and at 2 we were told not to come back for a year.  He is huge!  No one believe he has heart disease until you look at his chest!  

    ------------------------------
    Kimberly Bley
    Edgewood MD
    (301) 752-4241
    ------------------------------



  • 9.  RE: Welcome! Introduce yourself!

    Posted 03-10-2017 08:29
    Hi Kim!

    Thanks for joining and sharing your story. You are pretty close to me. :) I'm a little East of Pittsburgh. So about 3 hours from Baltimore. I'm happy to hear your little guy is doing well. Let us know if you have any questions. 

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 10.  RE: Welcome! Introduce yourself!

    Posted 03-08-2018 10:25
    ​I joined Mended Hearts Chapter 18 in SW Louisiana about five years ago. After having two CABGs, an ablation and a stent was unfamiliar with MH. Saw a "Medical Moment" on local TV news. Called and the rest is history. Have really enjoyed being an Accredited Visitor. The real reason I Volunteer is our grandson. In 2012 he received a heart transplant after many months of medically induced coma/LVAD/transplant. He is now 21 years old and doing great.
    Thanks to all who do so much to keep hearts beating.
    Chip Burns

    ------------------------------
    DeWitt Burns
    Lake Charles LA
    (337) 513-6926
    ------------------------------



  • 11.  RE: Welcome! Introduce yourself!

    Posted 03-11-2017 07:48
    Hello everyone!

    I'm Renee from New Jersey.  My 14 year old daughter was born with Down Syndrome, she was diagnosed at birth.  The next day, a cardiologist was brought in because she was turning blue around her mouth and eyes when she would cry.  She was then diagnosed with Complete AtrialVentricular Septal Defect.  At 7 weeks old, she went into congestive heart failure, and underwent open heart surgery at 8 weeks old.  She had her surgery at NYU by Dr Stephen Colvin.  She suffered numerous complications after surgery, and spent 32 days in PICU. Some of her complications included a stroke, seizures, and an infection.  Drs thought her heart was infected, which she would have required a transplant, but she would not have been eligible because she had Down Syndrome.  Thankfully, it wasn't her heart that was infected, it was a UTI that was causing the infection.  She continues with annual cardiology visits, she continues with heart meds, but other than her scars, you wouldn't know this little warrior had such a rough beginning. She's stubborn, she's smart, she's sassy, she loves country music and singing, and she is all attitude! Looking forward to following along in everyone's journeys! 

    ------------------------------
    Renee Napolitano
    New Jersey

    ------------------------------



  • 12.  RE: Welcome! Introduce yourself!

    Posted 03-16-2017 02:17
    I AM A MAN 76 YEARS OLD WITH SEVERAL INTERESTING CONDITIONS.
    I HAVE 18 STENTS IN MY HEART REGION, A PACEMAKER. 3RD STAGE KIDNEY PROBLEMS, BLOCKAGE IN MY LEG, IT IS SLOWLY TURNING MY FOOT BLUE,, AN ANYURUSUM. EF OF 34, DIABETS.  SEVERAL TIAS, MANY HEART ATTACKS I IGNORE NOW AFTER SO MANY, AND ANGINA.
    I STILL FISH TRAVEL, EAT WHAT I WANT BUT IN MODERATION, NO ALCHOL OR CIGARITES ARE BOUGHT BY ME, BUT IF WE ARE TOGETHER,AND YOU HAVE THEM, I EXPECT YOU TO SHARE 1 OR 2.  THEY STILL TASTE GOOD.

    ATTITUDE IS EVERYTHING, WHEN DEALING WITH PROBLEMS.  A I FEEL SORRY FOR ME IS NO GOOD.  GO, DO, TRY, FEEL AND IF YOUR BODY SAYS NO, QUIT.  LIVE YOUR LIFE. YOU ONLY HAVE ONE.  BE REASONABLE THOUGH  NOTHING IN EXCESS.  NAP WHEN YOU FEEL LIKE IT AND TAKE YOUR MEDS AND NEVER LIE TO YOUR DOCTOR.

    ------------------------------
    Buddy Isaacson
    Pasadena TX
    (713) 477-2796
    ------------------------------



  • 13.  RE: Welcome! Introduce yourself!

    Posted 03-16-2017 09:05
    Hi Buddy!

    I love your attitude and the advice of "never lie to your doctor" is so important. I think sometimes people feel like they need to hide things from their doctor so they don't get a lecture, that's never a good idea. 

    My son is a CHD kiddo and he is 8 (tomorrow) and I try hard to give him the freedom of living his life to the fullest and not worry about things so much. It's hard though to "let it go". 

    Thank you for giving such great advice

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 14.  RE: Welcome! Introduce yourself!

    Posted 03-16-2017 03:03
    Hi everyone!

    My name is Ashley and I became a heart mom at 26 weeks pregnant. My wonderful son Nicholas is 6 months old and has a diagnosis of tetralogy of fallot with pulmonary atresia. Since he's been born he has had a catheterization and 2 open heart surgeries with a few more to come in his future. Looking forward to connecting with you all!

    ------------------------------
    Ashley Molina
    New Jersey
    ------------------------------



  • 15.  RE: Welcome! Introduce yourself!

    Posted 03-16-2017 23:30
    Hi! My name is Andrea. My son, Keegan, and his twin brother Aiden, are almost 4 years old. Keegan was born with Transposition of the Great Arteries (TGA). He had his arterial switch at 13-days old. That was after 7 very long days on ECMO.

    Keegan has experienced significant delays with speech (he doesn't speak yet), gross & fine motor planning/skills and more, but he's the happiest boy you'd ever meet. He's always got a smile! He's finally starting to notice his brother and they now play together which does wonders for my Mama heart. 

    I became involved with Mended Little Hearts when our boys were about a year old. I felt the need to give back to an organization that was there for us during some of the scariest moments we had ever faced in life. I don't want any family to ever feel alone in this journey. 

    Please feel free to reach out at anytime to introduce yourself & chat. 

    ------------------------------------
    Andrea Francis
    Lead Coordinator MLH of Greater Rochester
    afrancis428@gmail.com 
    (585) 905-9124


  • 16.  RE: Welcome! Introduce yourself!

    Posted 03-23-2017 10:32
    I am an active participant in Chapter 312, Fort Myers. Have been visiting for 9 years and love it  - most of the time. It is tough for me as a visitor, to visit patients who have appeared to have given up. Much more fun to visit patients sitting on the edge of their chairs saying "I cant wait to get out of here and get back to my biking, tennis walking etc. We have about 115 members and 23 volunteers now and are growing. We visit 6 days per week, and presently are only visiting the SPCU patients in Health Park Hospital. As we build, we will add visitors to cover a sister hospital (Gulf Coast Medical Center) which does only stents. We are also planning to add 4 to six visitors just for the Chronic Heart Disease patients, who are in a different area in Health Park.
    We hold monthly meetings and have great speakers each month. Except, in August, we have a social luncheon with no particular speaker. And in December, we have a Christmas/Holiday" luncheon, with no particular speaker.

    As for the new site, I would like to see the removal of most of the original message - leave just enough to get the idea of the message.
    I belong to another similar Group messaging, and it really speeds things up to not have the whole message repeated in every iteration of the thread.

    I am readily available to any questions/comments.

    ------------------------------
    Joe Jansen
    Fort Myers FL
    (239) 461-0980
    ------------------------------



  • 17.  RE: Welcome! Introduce yourself!

    Posted 03-23-2017 11:17
    Edited by J. Michael Lam 03-23-2017 13:26
    Good morning, Mike here from Virginia. On Saturday May 3, 2014 I suffered a cardiac arrest in State College PA. Was flat lined (12 minutes). If there were not for 2 patrons who performed CPR, I would not be here. When I woke up in the hospital, the Cardio Team informed me I was the luckiest man in PA, due to the fact when the call came in I had 1/2 of 1% survival rate.  On the following Monday they tried cath lab on Monday and found I was blocked in 4 arteries at 100% and that I was not a good candidate for open heart surgery and that a nearby hospital said the same. On Wednesday of that week a defibrillator was implanted due to the cardiac arrest and I came home the next day to Virginia. Met with the local heart surgeon at the hospital and he fast tracked me for bypass surgery. The following Thursday open heart and a quad bypass was performed, I walked out of the hospital that Sunday...:)...Glad to be here...  

    ------------------------------
    J. Michael Lam
    Harrisonburg VA
    (540) 830-0210
    ------------------------------



  • 18.  RE: Welcome! Introduce yourself!

    Posted 03-23-2017 11:19
    Hi Joe!

    Thank you for the feedback. I agree that it would be better to see only a small portion of the post and then be able to expand it to read the full post. It would make it easier to scroll through. Sometimes I get lost on which post I'm looking at by the time I get to the end. 
    I'll work with the software team and see if I can change some things to make that better. 

    And....it is hard to visit patients who seem to have given up. Although, I like to think that is the exact time we NEED to be there and help them. I know some of the hardesst visits I have made as a heart mom was to be there through the hardest and darkest days for families as they said good bye to their child. But, I know that is exactly where I needed to be. It's not an easy journey to be a visitor all the time. Sometimes it's really hard. Thank you for doing it and for being a part of the support that is so needed on this journey. 

    Have a great day!

    ------------------------------
    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
    ------------------------------



  • 19.  RE: Welcome! Introduce yourself!

    Posted 03-23-2017 14:34
                   
                              Hello all,

          I'm a member of Chapter 28 in Richmond, VA-my name is Vaughn. On Feb. 27 2015 I had a triple bypass performed and left the hospital wearing a "Life Vest"--I've since had a ICD implanted. As you guys know the surgery is a life changer in many ways. I felt pretty bad about the way i'd been treating myself. So I've since changed what and how much I eat and exercise regularly, i've lost about 50 pounds and quit a 2-3 pack cigarette habit--it wasn't easy but I'm glad i did it. It was during my recovery at home that I found out about Mended Hearts and joined. I'm feeling pretty good these days and it's really great to be a part of a group who understand how to live with heart disease. Hope to "see" you all in the forum.                                      
                                                                                                                                                               Vaughn

    ------------------------------
    Vaughn from Virginia
    ------------------------------



  • 20.  RE: Welcome! Introduce yourself!
    Best Answer

    Posted 03-29-2017 11:36
    Edited by Helen Donahue 03-29-2017 14:44
    This is long!!  
    Hi, my name is Helen and I'm 67 years old.   I'm very much looking forward to my 68th birthday in October. :)  In 2011, I had a major heart attack that consisted of a 100% blockage in my right coronary artery.  I had a stent implanted and my cardiologist said if I'd of been just a few seconds later, he wouldn't have been talking to me.  I was that close to not making it.  During the next three years, I ended up with three more stents.  During Thanksgiving, 2014, I was in the hospital for bypass surgery.  Although it was a single bypass, my surgeon said he had to perform the surgery because it was my right coronary artery and that's the one that fed the blood to the rest of my body.  During the surgery, my veins started collapsing and the one he wanted to use peeled apart like an onion.  My surgeon finally found one but it was too short and had to be pieced together but it worked.  I nearly died three times and had to stay on the ventilator much longer than they anticipated because my lungs would not work on their own.  My surgeon said I nearly bled out twice.  After the surgery, I went into AFIB and it took several hours to get me past that.  As if that wasn't enough for my doctors to contend with, my BP dropped critically low and my blood sugar spiked out of control.  I ended up in the hospital for 18 days.  They must have pulled off a miracle because they told my children that it would take a miracle for me to come through it.  As you can tell, I'm still here!

    I also have Peripheral Vascular Disease, COPD, Emphysema, Sleep Apnea, am on oxygen and CPAP.  And, as if someone didn't think that was enough, I was also "blessed" with cervical and uterine cancer (of which I've had three procedures and two surgeries for.  Let's don't forget the last surgery that had to be done because of hemorrhaging from the previous surgery. 

    So..... what do I do all day, with all of this going on?  I defy the odds!!  I do, pretty much, what I want to do.  Yard work, watch my grandbabies, a LOT of crafting and worry my children by telling them I'm going to do what I know I can do!  I know my limits and I do listen to my doctors.... BUT I've, finally, convinced my doctors that they aren't going to hold me down.  My doctors just stare at me and shake their heads, wondering how I keep going.  It's determination and perseverance, friends, that's how I keep going.  Hey, I can STILL out do my children AND grandchildren!!  :) 

    I'm currently working  towards being a VISITOR for our Mended Hearts chapter in Greenville, NC.

    ------------------------------
    Helen Donahue chpt 023
    Ayden NC
    silverrose@suddenlink.net
    ------------------------------



  • 21.  RE: Welcome! Introduce yourself!

    Posted 03-30-2017 00:33
    I AM READING ALL THE FORUMS ABOUT YOUR SURGERY'S AND I THINK I WILL LIST MINE ALSO.
    18 STENTS
    2 OPEN HEARTS.
    PACEMAKER
    3 RD STAGE KIDNEY FAILURE
    2 ANEURYSUMS--  1  IN LEFT LEG  1 ACENDING AOTORTA
    MY HEART IS CALCIFING MOST OF THE NATURAL VEINS AND AUTRIES ARE BLOCKED
    LUNGS FULL OF MAC.  SIMULIAR TO TUBERCLOUIS.... BUT NOT THE SAME  NOT CATCHING
    2 TIA,S
    SKIN CANCER
    I DO NOT KNOW HOW MANY HEART ATTACKS.  I IGNORE THEM.  THEY GO AWAY
    ..
    I NOW CALL THE NURSES IN THE HOSPITAL BY THEIR FIRST NAME AND THEY ASK WHAT ROOM I WANT.
    I USUALLY BRING MY OWN FOOD.  THEIRS IS NASTY.
    I REFUSE TO USE ON OF THOSE BEDS THAT GROAN AND MOVE..  I ALSO TURN OFF THE BEEPING MACHINE OR PUT IT ON SILENT.
    I STILL DO WHAT I WANT BUT AM SLOWING DOWN SOME., BUT REMEMBER ATTITUDE IS THE SECRET.  KEEP AN ATTITUDE AND EDUCATE YOURSELF ABOUT YOUR CONDITION.  IF YOU DO NOT KNOW THE QUESTIONS,  YOU WILL NOT GET THE CORRECT ANCWERS.




    ------------------------------
    Buddy Isaacson
    Pasadena TX
    (713) 477-2796
    ------------------------------



  • 22.  RE: Welcome! Introduce yourself!

    Posted 04-02-2017 10:16
    Hi, I am a member of chapter 11 in Louisville, KY and an accredited hospital visitor.  I had my open heart surgery and a mechanical aortic valve implanted in 1967 at the age of 31.  I just turned 81 and have the original Starr-Edwards "ball-in-cage" valve that continues to function normally.  Although age is slowing me down a little I still enjoy a normal life and lifestyle (family, golf, gym, fishing etc).

    ------------------------------
    Richard Feusner
    Louisville KY
    (502) 239-6811
    ------------------------------



  • 23.  RE: Welcome! Introduce yourself!

    Posted 09-17-2017 17:48
    Hi all!
    I'm a grandma (Nona) of an amazing little heart warrior named Lucas.  He was born Christmas 2014 & was sent home shortly after birth undiagnosed.  Thanks to my daughter-in-law knowing something was wrong (mother's intuition at it's finest) he was readmitted & a pulse ox reading raised the flag that got him transferred to AI DuPont Children's Hospital where he was diagnosed with 7 CHDs.  He has TGA-d, Tricuspid Atresia, HRHS, Interrupted Aortic Arch, SVT, VSD & Wolff Parkinson-White Syndrome.  Non-cardiac he has GERD & late dumping syndrome. He had the Norwood & Upper Glenn and we're waiting on the Fontan, probably next year--he also had the Nissen Fundoplication & is on bolus feeds via feeding tube.
    Learning what I have in the past 2-1/2 years & looking back, all the signs were there and were missed.  I never dreamed I'd be advocating so hard for something I never even heard of until his diagnosis but can't imagine doing anything else.  I just accepted a position as CHD Awareness Coordinator for the Mended Little Hearts of the Delaware Valley and am very excited to promote this cause--I have the sweetest little 27 lb inspiration & I hope I do my heart warrior proud.

    I have a very active Facebook Community page that educates/advocates CHD Awareness.  I started a Heart Smart series in January 2015 covering one CHD a week--I have about 6 months to go to finish this massive project; that series posts weekly there & can be found in it's entirety on my Pinterest page.  I also run contests to advocate things like pulse ox screening and donate baby blankets (that were inspired by Lucas) and boo-boo bunnies to local area CICUs for our little heart warriors spending the holidays there.  If anyone is on Facebook & would like to check it out, here's the link:  https://www.facebook.com/nonasarcCHDaware
    Facebook remove preview
    View this on Facebook >
    https://www.facebook.com/nonasarcCHDaware








    ------------------------------
    Billy Werner (Nona)
    ------------------------------



  • 24.  RE: Welcome! Introduce yourself!

    Posted 01-08-2018 13:47
    Hello to everyone here.  Frederick Gregory reporting in from League City, TX.  Like a lot of people, I have a weak heart due to two heart attacks and at least one AFib.  My first heart attack occurred in 2001.  I went to the emergency room, not because of my heart but because I was having the onset of pneumonia.  I was told by the doctors there that some of my symptoms that I was experiencing were very heart attack like.  After a number of test over the next few weeks nothing proving this was found.

    Last Feb. 2016 happened to mark the third anniversary of my wife's passing.  Shortly after this, I had a full fled heart attack.  This was looked into by different doctors as I'm now in a different state.  My test showed that I have scarring from a past heart attack as well as a leaking aortic valve per my new cardiologist.

    As can be expected I am well medicated now taking about a dozen pills per morning for my heart and other reasons such as seizures.  The cardiologist referred me to a heart surgeon who refused to operate on me for two reasons.  The main reason he refused to perform a valve replacement operation was due to not enough test actually showing that I have a leaking valve.  The fact that my heart is too weak for the surgery was his second reason to say no to helping me out.

    To make things more complicated for myself I experienced an AFib even just after hurricane Harvey went over us.  So my heart is not in good shape and my insurance is not stepping up to bat to help me.  So far they have refused to allow me to wear a LifeVest or any sort of external defibrillator.  Per my cardiologist, the only now available option is for me to have a pacemaker.

    Unfortunately, the process of getting a pacemaker is not going anywhere.  As I have a dangerously low pulse rate the cardiologist ask me to keep track of it through the month of December to help him decide if a pacemaker would be the magic answer for me.  So by the end of December, I go back to see him to finally get an answer to my problems.  All I get from him is his usual time he spent reviewing my medical records and asking to see me again in one month.

    As I am not getting anywhere with this old man who is understaffed and sees too many patients, I am in search of other options.  For starts, I need to see my MD to discuss all of this as she is the one that saved my life but sending me to the hospital while I was having the AFib.

    Like one million other things I wait for answer to this.


    ------------------------------
    Frederick Gregory
    League City TX
    2819672078
    ------------------------------



  • 25.  RE: Welcome! Introduce yourself!

    Posted 01-09-2018 08:47
    Frederick,

    As my mother used to say "You have many examples that you have lived." My condolences about losing your wife and Hurricane Harvey, besides all the other "stuff" going on in your life. I hope you have a family or other support system that we typically call "care givers." 

    I am reminded of a friend who was going through a tough time. We lived in Kingwood, Texas, when she said "I guess that was a learning experience, but I am just not sure I can afford to learn much more," which I think summaries where you are with your physician. 

    My opinion is that you need to take charge of your medical situation, as I did while rehabilitating from a series of heart issues, which were discovered when I stopped breathing. For details on my approach, I direct you to my book "One Heart-Two Lives: Managing Your Rehabilitation program WELL" (Amazon). I wrote it with Mended Hearts members in mind.

    Brent Zepke





  • 26.  RE: Welcome! Introduce yourself!

    Posted 01-09-2018 12:27
    Hi! My name is Terry Martin in Lexington, Ill which is just north of Bloomington/Normal.
    I had triple bypass surgery 13 years ago and been for stents 3 times. I was having problems with heart attack symptoms in the morning after walking dogs. High blood pressure, elevated pulse rate, sweats and weakness. I would sit and in a hour it would all go away and i could be as active as I wanted. this has been going on for some time. My cardiologist who I have had from the start wasn't concerned. He asked if I wanted to do a stress test. i did. We did a walking stress test and i passed with flying colors. Of course I couldn't take the metoprolol blood pressure medicine. I asked it this was what the problem was. I got no answer. I called his office and said I was cutting the dosage in half to 25 mg.. They said okay.It still not solve the problem. since this doctor is now affiliated with another hospital and the hospital I prefer is associated with another group he was no longer coming to my hospital. This gave me an opportunity to another doctor who was recommended by a friend. His answer was to take medicine at night. I told him the instructions said to take with food. He said nonsense. So I have been doing that and it has been 90% effective. He also did had be do a chemical stress test. All okay.
    My old cardiologist is just that - older. I think he is only working on emergency situations and not routine problems. 
    My wife also switched to the new doctor and he improved her situation and changed medicine for both of us saving about $1,000 per quarter. Sometimes you have to keep searching for a doctor who solves your problems. It would be nice of you could interview different doctors to see who works best with you. Not everyone likes the same doctor.
    Terry

    Virus-free. www.avast.com





  • 27.  RE: Welcome! Introduce yourself!

    Posted 01-09-2018 16:21
    Frederick, from the description that you wrote I gather that your getting your medication from multiple doctors.I had a bad experience with that situation. I would suggest you take your medication list to a  pharmacist, preferably a hospital pharmacist. There's always a possibility of the meds not agreeing with one another. Bill

    ------------------------------
    Dr Bill
    Ryan. PhD.
    Elkton MD. USA
    443 485 6266[
    Mended Hearts Chapter 179. Past Pres.
    ------------------------------



  • 28.  RE: Welcome! Introduce yourself!

    Posted 01-10-2018 18:49
    Dr. Bill,

    Currently, I am under the care of three doctors.  It is always possible that there is a medication issue.  I'm currently taken about one dozen pills for my heart and other reasons.  I'll contact my pharmacist in the morning to see if there is a problem.  As many times as I see a doctor and they change or adjust one or more of my meds, I always carry a list with me to make sure it is updated into their records.

    As of this afternoon, my MD is contacting my cardiologist to find out I should be off certain meds and why others were adjusted.

    ------------------------------
    Frederick Gregory
    League City TX
    2819672078
    ------------------------------



  • 29.  RE: Welcome! Introduce yourself!

    Posted 01-12-2018 19:07
    Frederick, gratulation, you're doing the right thing at the right time. I have another suggestion despite the fact that online information is not always reliable I found the People's pharmacy to be very helpful. Find them at www.People's Pharmacy.com.
    it may be a cut-and-paste job

    Dr. Bill

    ------------------------------
    Dr Bill
    Ryan. PhD.
    Elkton MD. USA
    443 485 6266[
    Mended Hearts Chapter 179. Past Pres.
    ------------------------------



  • 30.  RE: Welcome! Introduce yourself!

    Posted 01-13-2018 10:38
    I am Angela Manriquez, caregiver for Ron Manriquez. Welcome.:-)





  • 31.  RE: Welcome! Introduce yourself!

    Posted 01-14-2018 09:22
    Hi.  I noticed the response from Dr. Bill Ryan was from Elkton MD.  I'm in Charlestown MD.  Are you affiliated with Union Hospital?


    From the desk of:
    Billy Werner and inspired by my heart warrior grandson Lucas

    CHD Awareness Coordinator for Mended Little Hearts of Delaware



    Creator/Admin of Nonas Arc














  • 32.  RE: Welcome! Introduce yourself!

    Posted 01-19-2018 15:26
    Hello Billy Wemer, sorry to be so long with reply. Yes I am connected with Union Hospital but I am not a medical person,. I am a retired educator. After 30 some years of answering to students calling me Dr. Bill it sometimes confuses medical people. I'm a Dr. of philosophy, a PhD. If you look it up in the dictionary you'll find the definition of doctor is teacher. My 2nd career was teaching Cardiac Rehab to heart patients in New Jersey and was an 8 year Mended Hearts Pres. Of chapter 179. When we moved to Elkton I learned that Union Hospital is an excellent hospital but without a catheterization lab. I also discovered that the cardiology program is very thorough and I am a willing volunteer in that program. Dr. Bill.
     
     
     
     





  • 33.  RE: Welcome! Introduce yourself!

    Posted 01-22-2018 09:38
    Hi Bill, thanks for getting back to me.  I continually hit a wall with Union in trying to spread CHD Awareness.  I've worked with Elaine Boyle and the list of referrals from her aren't receptive to any of the many campaigns I've run inclusive of Newborn Screening Awareness Cards from Babys First Test.  
    My grandson was born there in 2014 and was sent home undiagnosed with 7 CHDs.  He is living proof they lack in this area & I'm looking for any help I can get to help promote this cause.
    Let me know if you can help.  Thank you!


    From the desk of:
    Billy Werner and inspired by my heart warrior grandson Lucas

    CHD Awareness Coordinator for Mended Little Hearts of Delaware



    Creator/Admin of Nonas Arc














  • 34.  RE: Welcome! Introduce yourself!

    Posted 04-19-2018 13:21

    Hi All.... 

    I'm Jennifer (33 yrs old from NY), I am almost 7 months post op (CABGx6). After 5 years of being misdiagnosed and struggling to breath I finally am starting to feel myself again. Sitting in the ER that night was the scariest thing in my life, I was alone and being told I had a heart attack, while words like "congestive heart failure" were being thrown around. This diagnosis still feels like it came out of left field, cause as far as we can tell is my Type 1 diabetes that I was diagnosed with 20 years ago.
    Had a few complications after surgery, was kept under sedation for 10 days and kept in the hospital for 23 all together.

    I know I can't be the only person my age who has dealt with this, but I feel completely alone. 



    ------------------------------
    Jennifer Marsh
    Clifton Park NY
    ------------------------------



  • 35.  RE: Welcome! Introduce yourself!

    Posted 04-20-2018 10:51
    Jennifer,

    First congrats for obtaining the necessary medical assistance. You are not alone in your experience of no warning: during a stress test my heart stopped. Like you, I had surgery (quintuple bypass) followed by months of complications. My days were filled with physical challenges: my nights by emotional ones.

    I suspect you are where I was: will a particular movement help or hurt me? 

    I realized in order to progress from rehab-to-recovery, I needed to use my training.  As an attorney, professor of management, and author, I had created improvement plans for thousands: it was time to develop one for myself. It worked so well that I decided to share it through my book "One Heart-Two Lives: Managing Your Rehabilitation Program WELL."  Read www.onehearttwolivescom.wordpress.com for a discussion.

    Ten year later, I just returned from skiing, am leaving today for two weeks in France and then flying cross country to visit family. 

    Good luck: you are not alone. 

    Brent Zepke







  • 36.  RE: Welcome! Introduce yourself!

    Posted 30 days ago
    Hi Jennifer, This is my 1st response to a post as I am new to the site. I am from Syracuse, NY, part of why I am responding. I am a bit older than you, but at only 56, I too feel I am too young for all my heart related issues. For me, the aloneness is one small element of the plethora of issuses realted to some of us w/heart issues. I won't drag this out. If you are interested in communication and support? Please let me know? If and when, until the? Be well.
    Sincerely,
    Randy Schryver

    ------------------------------
    RANDY SCHRYVER
    SSI
    N/A
    SYRACUSE NY
    ------------------------------



  • 37.  RE: Welcome! Introduce yourself!

    Posted 29 days ago
    Hello Jennifer and Randy,
    I want advise you both to Google "Mended Hearts near me". A map of the US pops up and click on NY state. You will find the existing chapters near you. I can tell you the depression is normal for what we go through. I do not care if you only have a single stint or a full blown transplant, it is normal. This forum is also a place to talk to others besides meeting with folks in person. Cardiac rehab allows you to meet with others like yourself and make contacts to talk to. You will note we have Mended Little Hearts chapters as well. There are a lot of children with heart issues as well. I figure if they can cope with it so can I.
    Please use this forum as often as you need to get answers to questions or look for help. 
    Some of what we all have to deal with is Genetic. We are stuck with that and just have to adjust. But the rest we can change and deal with. One of the things that I have seen help others with depression is finding a reason to get better. Weather it is a Grandchild, Job, Hobby or what ever give you some sense of joy. Find one thing that you can smile about and after that other things will start to get easier and you begin to see other things that bring you joy.
    Please remember you are not alone and we all have a stake in assisting each other. 
    You both have helped me by sharing yourselves and what you have gone through. If you don't have a chapter near you, contact the nearest chapter to get assistance to start your own. If that is not practical just start emailing with the folks of the chapter near you to find resources in your area to assist. By getting involved you will find your depression will become easier to deal with. I have seen it in others and I know it can help.
    You two are tough and strong, you proved that by getting on this site and talking about yourself. Don't forget that.
    Looking forward to hearing from you again.

    Richard Short
    Chapter 395
    Apple Valley, CA
    Certified Visitor.

    On Tue, May 22, 2018 at 5:32 AM, RANDY SCHRYVER via Mended Hearts






  • 38.  RE: Welcome! Introduce yourself!

    Posted 28 days ago
    You can get through this.  You're strong to have come this far.  And cardiac rehab will help.  Both the staff and the patients are wonderful resources and will become your friends. I've told them they didn't save my life, but they gave me my life back.  I was poet-in-residence at a middle school when my heart stopped.  It was idiopathic asymptomatic cardiomyopathy; in other words, I died twice with no rhyme or reason for it.  But I do think I'm here for a reason and part of it is to give back and help others.  I never got depressed.  I was unconscious for nine days and given no chance to survive, and my EF was 10, so I was just glad to be here, but there are struggles.  Just remember:  it does get better.  Good luck and God Bless.   Francee

    ------------------------------
    Francee Levin
    Columbia SC
    (803) 788-1207
    ------------------------------



  • 39.  RE: Welcome! Introduce yourself!

    Posted 27 days ago
     
    William J. Ryan PhD. AKA Dr. Bill.
    drbillryan86@alum.rpi.edu
    www.heartsofjersey.org





  • 40.  RE: Welcome! Introduce yourself!

    Posted 05-08-2018 15:17
    Hi. I'm Tom and I had my aortic valve and part of my ascending aorta replaced 11 weeks ago today. Two weeks later I went back in with Afib and had to be cardioverted, which worked out great. Have been doing fine until a few days ago when I started having lots of anxiety about it and kind need to know I'm not crazy.

    ------------------------------
    Tom Hoover
    Akron OH
    ------------------------------



  • 41.  RE: Welcome! Introduce yourself!

    Posted 05-09-2018 05:48
    Tom, 
    I'm a heart patient who as survived two aortic aneurysm repairs.  The first was the repair of a ascending aortic aneurysm in July 2007 and the second was aortic arch aneurysm procedure in May 2017.  In both cases, I participated in a Phase II cardiac rehab program about six weeks after both surgeries. The Cardiac Rehab is a exercise program supervised by cardiac nurses and physical therapy specialists to help your body return to full health and endurance after surgery. 

    The program consists of three visits per week for one hour for 36 sessions. The exercise program includes Treadmills, Stationary Bikes, Arc Trainers, Rowing and Ergonomic machines. If you have not completed this program, ask your cardiologist for a script to participate.  If you have completed cardiac rehab, speak to the head nurse about a Phase III maintenance program at a local YMCA or facility.
    Good luck,
    Regards,
    Vic 

    Mended Hearts of Morris County, President
    Morristown Medical Center
    Morristown, New Jersey





  • 42.  RE: Welcome! Introduce yourself!

    Posted 05-09-2018 12:17
    Tom,
    Vic is right about Cardiac Rehab. Seek it out and tell your doctor you want to be referred to the program. It helps with the depression and fear as well. Seeing all the other folks going to rehab let me know I was not alone. I had a Quad bypass in 2015 and a pacemaker in 2017. Rehab helps with all parts of healing, not just the physical. Hang in there, it will get easier to deal with as you heal.

    Take care,

    Richard





  • 43.  RE: Welcome! Introduce yourself!

    Posted 27 days ago
    Hi Tom, I completely understand the anxiety issue surround heart issues. I was suppose to go in for an ablation procedure on May 30th. Prelim CAT scan shows a big fat new Aortic Anyeurism! This is AFTER #4 MI's, stents, 3x bypass and a bypass failure. Leading to Afib AND Aflutter​! I am an anxious, nervous wreck right now. I was progressing well in cardio rehab, feeling better. Now? I am scared to walk home with a bag of groceries...My consult isn't until the 29th. Trying to find support groups in my area, they don't seem to exist. Hence. here I am. I know its easier said than done. But, I try to stay busy and occupy my tome so I am not so alone with my thoughts. Dangerous place for me...Internet, chat, phone calls, Facebook, TV, music< Hanging w/family or friends. Theres no magic cure, we just have to go thru it and pray we survive? ME? I feel like the cat w/9 lives, feeling like hes already used up 8 of them...Pleas be well.

    Sincerely,
    Randy

    ------------------------------
    RANDY SCHRYVER
    SSI
    N/A
    SYRACUSE NY
    ------------------------------



  • 44.  RE: Welcome! Introduce yourself!

    Posted 23 days ago
    Hi everyone my name is Vince. I am 50 years old and I live in central Florida. Last year I was diagnosed with CHF; Aortic valve stenosis, Bradycardia and cardiomyopathy. I now have a new Aortic valve-tissue and an ICD. I am looking forward to participating in this group. The posts that are shared really help me learn and understand things. When I was in the hospital I remember a man from Mended Hearts visiting me in my room, I am glad there is a site on the computer because I live 90 minutes away from  Orlando

    ------------------------------
    vincent mahar
    -
    -
    Avonpark FL
    ------------------------------



  • 45.  RE: Welcome! Introduce yourself!

    Posted 22 days ago
    Good day to all! I am Gilbert and, by the grace of God, I am a heart attack survivor. September 8, 2014, I was working out at local YMCA when my heart attack occurred. I passed out on a weight training machine and stopped breathing.

    I’m grateful that my event occurred in a place where there were a number of trained people on hand. Some Y staff members sprang to action and work hard to revive me, eventually requiring a defibrillator.

    Then I was rushed to a hospital. While en route, I once again stopped breathing and had to be “zapped”. On September 11, I had quadruple bypass surgery.

    I have recovered well. I have continued to be dedicated to exercise, mostly walking. I try to eat more healthy, and have dropped a few pounds. I retired from the corporate world in 2015, and am enjoying spending time with family, house and yard projects, and volunteer work.



    Sent from my iPad




  • 46.  RE: Welcome! Introduce yourself!

    Posted 12 days ago
    HI, I'm Jeff and had open heart surgery (triple bypass, mitral value replacement, and surgical ablation) 12 weeks ago, on March 19, 2018.

    Being in the hospital and being told I needed open heart surgery took me totally by surprise. I'm was a healthy 63 year old who had never been sick, and had no symptoms to indicate heart disease. My parents however both passed away from heart disease, so there is the connection.

    Being fairly young and healthy before surgery has helped me in my recovery, but I received another shock 6 weeks after surgery that I also had Peripheral Artery Disease (PAD). This has turned out to be more a stumbling block in my return to normal than anything else.

    I don't know what my future holds but I am trying to be optimistic. Learning to live with PAD is definitely a challenge.

    I live alone and find it comforting to have this forum. I don't feel so alone when I visit here.

    ------------------------------
    Jeff Novak
    San Antonio TX
    ------------------------------



  • 47.  RE: Welcome! Introduce yourself!

    Posted 11 days ago
    Hello Jeff,

    I had a triple bypass in 1989, then in 2006 I had a mild heart attack and a stroke after having a stint placed in the most blocked of two blocked vessels. Since then, I continue to be active in my daily routines. However, in February 2017 I was diagnosed with an Aortic Aneurysm. My doctor chose not to have surgery, but to watch it for changes (I was 88 yrs young at the time).

    This year, 2018 during my annual check-up, the aneurysm had not changed in size, so I continue to live my life without worrying about the future.

    We have a man in our Mended Hearts Chapter who has been living with a similar Aortic problem for the past six years without problems. Both of us decided to follow our doctor's instructions knowing that some day surgery may be required.

    I hope this information gives you some comfort with your concerns.

    Yours with a heart condition,
    BOB WILKE

    ------------------------------
    Robert (Bob) Wilke
    Goleta CA
    (805) 968-0583
    ------------------------------



  • 48.  RE: Welcome! Introduce yourself!

    Posted 10 days ago
       I am called Larry; and had by-pass surgery in 2002..
    I have enjoyed being a Mended Hearts Visitor in Oakland, California
     and recommend the experience
    both as a visitor and being visited

    Larry:-P Perry
    larryper@aol.com





  • 49.  RE: Welcome! Introduce yourself!

    Posted 6 days ago
    Thank you Bob for sharing your experiences. You are an inspiration to me. So your first bypass lasted 17 years before your heart attack in 2006? Do you know what caused you to have a heart attack? Was it the stent placement? Do you take medications (blood thinner, statin, etc.)? Sorry for all the questions but these are things that I have wondered about - how long my bypass and valve replacement will last, will my medications (blood thinner, statin, high blood pressure med) protect me from clots, blockages, and another heart attack.

    I have never been a worrier, but I don't understand why I am not feeling better after 3 bypasses and a valve replacement. Seems my blood flow should now be greatly improved and I would feel the benefits. I felt much better before surgery than I do now. And I am concerned of the coincidence of the peripheral artery disease (PAD) suddenly causing me so many problems after surgery.

    I find it difficult to find that sweet spot of pushing myself physically to regain strength, stamina, and endurance - and not injuring myself - which I think I have innocently done like 3 times already. I also never had a problem sleeping and now, after my surgery, wake up every hour, never feeling like I've had a good night's sleep.

    Thanks to everyone for allowing me to vent. I am more optimistic than this may sound but do have concerns.

    ------------------------------
    Jeff Novak
    San Antonio TX
    ------------------------------



  • 50.  RE: Welcome! Introduce yourself!

    Posted 11 days ago
    Hello Jeff and Robert,
                                        Many similarites we three share. I am waiting on test results-  What to do with a 5.4 cm anyeurism (Aortic)? Will find out on Tues. I guess?...#3 stents, #4 MI's & 3X by-pass. I am 56, and the thought of being cut, sawn and stitched, AGAIN! Is a bit daunting for me. Especially mentally and emotionally​ let alone all the extreme physical changes we ALL go through with our issues. It helps to communicate with others like ourselves. "We", are the only ones who honestly, literallly know what we go through. I wish the area I live in had live support groups, Cardio-related issues. Can not seem to find one? Good Luck to you fellas. Imagine I will write more after my next Dr. visit on Tuesday...


    Please take care,


    Randy Schryver

    ------------------------------
    RANDY SCHRYVER
    SSI
    N/A
    SYRACUSE NY
    ------------------------------



  • 51.  RE: Welcome! Introduce yourself!

    Posted 6 days ago