Dec 30
Jefer
Jefer , Posted on SUPPORT NETWORK Blog

Life with a defective heart

Hello,

My name is Jeff and I'm a 39 year old father of 3 and husband to an amazing lady. I was born with an aortic bicuspid valve and had to go for check ups since I was a baby. Medication before dentist appointments, try not to get to sick or ride roller coasters etc.. my 38th annual check up I was told I developed an aneurysm in my thoracic aorta. I was devastated and terrified. I also have anxiety and OCD. The diagnosed kind not the I like my skittles all one color kind. It's been a hard year and as a father all I want is to be there for my kids. I also suffer from high blood pressure and acid reflux among other stomach issues. I've been depressed and struggling with the concept of time and what legacy I've created on this earth. I go back in February for a check to see if it's grown. It's currently at 4.7cm. I'm working and what not but i feel like it's such a waste of time but the bills don't stop. Surgery is so scary to me and living with a time bomb makes life challenging but at the same time I'm trying to live and be with my family as much as I can. I could go on for days but that's my story. I'm scared, it's hidden and hard to talk about to the average person. 
 
7 Comments
  • mingo1
    mingo1,
    I really know how you are feeling. I had a widow maker in 1993 and then seven hip replacements, huge back surgery, two Achilles tendon repairs and many other surgeries. After having a defibrillator implant and having all the other surgeries, I was scared each time that my heart would not hold up. I have a 28% ejection fraction. However, with few complications, I have pulled through all of this and continue to live a pretty normal life. I also have some OCD and three sons and perfect wife. I worry about them more than myself, but have been granted a much longer life than I thought. They have learned to live with a husband and father that has some major problems, but after a few years, they have also learned to live with it. I do have times that I am scared and worried, but have learned to deal with the problem. I pray a lot, keep busy, watch my diet and make sure I see the doctors when scheduled. I also learned how to meditate a little bit and that helps and have began to color very busy, huge coloring projects with pencils. Over the last few years, coloring has really became a "fad" with over 3 million new users and many doctors and physiologists are using coloring as a form of relaxation. I color for around two hours a day and think of just staying in the lines and making the project look good. I believe that is how I should look at life also. Just stay in the lines. Give it a try. It was hard at first not to think of my problems all the time and I went into the "pity" mode. Over time, I stopped this thinking and told myself that I could live a normal life and not worry so much. If something else happens, I will live through it. I know this in my heart. Be with your kids and wife and laugh, play and make memories. You will live strong and begin to feel good again. I just know it!! Good 2017 to you.
  • cdameron
    cdameron,
    It is really hard to live a life when you are always waiting for the other shoe to drop! It sounds like you have been living that way for a long time. I certainly like the idea that Mingo1 has about coloring. It is a simple way to do something you can accomplish and find beauty in without investing a lot of money or excessive time in learning a skill. Sometimes the simplest thing is the best thing... I am a retired teacher and I remember teaching students about filling in a map and how much they loved it when they were finished. Some hated to slow down and work with colored pencils but in the end they seemed to make the most growth when they did. It is self-satisfaction that does the trick. There is so little we can control in our lives when we live with health issues... This is one you can do without a prescription from your cardiologist and a bonus could be that other members of your family might join in. I bought a book on Amazon and noticed that there were lots of high interest choices. The key is to let go of your worries and do this... As a matter of fact, I think I will start as the first thing I do for my health sanity for 2017. I think we should have a coloring book challenge. Maybe a whole group of people taking the time to help themselves cope with stress in the New Year. Positive thought encourages more positive thoughts. Let us know what you think...
  • erinwatson
    erinwatson,
    So just today as we went for a morning walk, my husband and I were discussing fear. As a caregiver, I really I am really trying to understand, but questions only anger him. He had a heart attack 3 months ago, (October 21, 2016), and just the subject of sex makes him explode. I would think it would make him feel good that I want him. Alas, it does not. All I asked was if I initiated it would that be okay, he became totally emotional, and threw his water bottle in the street and started yelling at me like a child. I guess I will not approach again regarding that topic anytime soon. Thoughts?
  • elissa
    elissa,
    My brother lived with 2 abdominal aneurysms for 20 years! One was 6+ cm and the other was 8 cm. They were inoperable because the risk was so great. He had a heart attack, pneumonia and permanent muscle damage from statin drugs which left him in a wheel chair. He was in his late 50s when all his serious troubles started. He died at 80 because he was tired of living with all his problems so he quit taking his meds and quit eating. One of the aneurysms started leaking so they told us to prepare for his funeral. However it sealed itself up and never leaked again for 10 yrs. I tell you this to give you some hope. You have way more than your share of health problems, but I am glad you have an amazing wife and children. I will pray that your situation is resolved in the best manner possible. Try to get some pleasure out of every day. I know that is not easy because I am the sole caregiver for my husband who had a paralyzing stroke due to hospital incompetency--I've been told many times to sue but do not have the physical, mental or emotional stamina to go through it--and 20 months later can barely walk with a walker, is unstable and a fall risk which has happened a few times, has parkinsons, atrial flutter, and bone-on-bone right knee arthritis. Also he had spinal fusion 1 yr. before his stroke (no risk factors for stroke). He has very little use of his left hand and he is lefthanded. I know what you mean about not talking to people generally about your situation. People ask (but don't really want to know)how we are doing and I just say OK. They are satisfied; they have no idea of what we are going through. We fortunately have a few really good friends (you find out who those are pretty quickly) who have helped us climb out of the pit of despair many times. I hope 2017 will bring you relief and solutions. May God bless you and yours.
  • JaneV
    JaneV,
    I know daily stress is great when there is so much unknown. You cannot live for the past as there is nothing that can be done except learn from experiences that help us cope with today. We do not know the future and to continue to worry about what if or when only ruins today and the joy that you could be sharing in living your life. Ask what positive things you can do to help lower your blood pressure that has not already been prescribed. Learn as much as you can about about your condition so you can begin to be more proactive in doing all you can to be healthy; what diet and exercise you can do to help your body deal with your issues. I can certainly understand the depression. My husband is dealing with similar issues each day and if I do not bring some sunshine to our lives each day we also can be afraid of tomorrow. Talk with your heart specialist ask them about what can be done with day to day life changes that can help you cope with your health. I really think they do not have all the answers or I would not be part of this network so look to others and most importantly, connect spiritually with your faith. Perhaps others have tried meditation or yoga or ways to relax. Your body feeds on what you give it so try really hard to give it a bit of sunshine each day in the joy of your family, in whatever you do or once did that made you happy. In February face your decisions with the best information possible even if it means a second opinion of your current physician. Then I suggest I found the best way to connect, look for information, start a new activity is to first be grateful. I think about all the good things in our lives and little by little that makes a difference for me. I change what is reasonable and acceptable to change and am grateful for each day. Sounds so simple but after many years of trying to fix everything I finally find being grateful and faithful to my beliefs fixes more than I ever could by myself. It is okay to be scared but do not let that fear rob you of the joy of today.
  • ActiveLarry
    ActiveLarry,
    Jeff: You have to deal with things calmly. Its better for you since that prevents your adrenaline from damaging you. And its better for those around you, as they stay more calm. Aneurysms can persist for years. I have many small ones all along all three coronary arteries. Look up EPCs. The bodies stem cells for artery repair. You need a diet similar to mine to benefit production of EPCs, and of nitric oxide. Light exercise should be beneficial, no need to be out of breath, at all, ever. Its even good to walk a bit slower until well tolerated, if you need to. Without even light exercise, 1) you will get weaker, no fun; but 2) even light exercise stimulates myokine production that will help your general health. Be good and loving, a model of emotional strength for others. Your ability to handle things will inspire others to better handle their lesser challenges. Eleven years ago, I was told I had three years to live. I am healthy and active, but very careful in what I do, and my diet. I wish you many amazing years with your family.
  • Manolo
    Manolo,
    Hello, Jeff. Your story is more or less my own story. I'm 44, father of two and husband of an amazing lady. I was born with an aortic bicuspid valve and, well, the rest is history. I also have developed an aneurysm in my aorta. So, I think that I understand how you feel about your family, your job, your role in the world and even your bills. I would like to say to you many things, but I am not sure what or how. Let me tell you something that works for me. Sometimes my mood is 80%, sometimes 60% and sometimes even lower. Then, I adapt my day to the state I am in. When I learnt to accept this, I became more indulgent with myself. That was important for my daily routine and for my closest ones. My sons and my wife are my main source of strength. Every day I try not to transmit them my distressing thoughts. Although it isn’t easy to do, it’s better for them and at the end of the day it makes me feel good. Thanks to this, we have improved our experience of the moment. I wish you the luck and the strength that we both need! Yours,
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