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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

My Story 11 Years After ASD Surgery

I lived a pretty normal childhood in terms of my health. I played in many sports leagues and was always playing in the backyard. That all changed when I got to high school. I always had trouble gaining weight, feeling tired, trouble breathing but things had become really alarming.

I ate whatever I wanted and never gained any weight. I was 5’11 and only 100 pounds. I knew that wasn’t normal. Of course, being in high school I could certainly forget about getting any girls at only 100 pounds. They always ignored me. I would literally flip a coin on many days to decide if I would stay home from school because I felt sick pretty much everyday. I had trouble going up stairs, heart palpitations, tired all the time, etc. I even told my mother that there’s no way I can feel like this and keep going. I predicted that I would be dead in the near future. She told me “no way” or something like that.

I went to the doctor for my normal check up and my life then changed. A nurse practitioner started listening to my heart and had a puzzled look on her face. She then listened for probably half an hour. She noticed I had a very noticeable heart murmur and then I was referred to a cardiologist.

The cardiologist visit consisted of many tests such as the ultrasound, EKG, stress test, etc. I remember running on a treadmill at an incline to test my cardio. I got so tired and out of breath, my vision pretty much faded to black. The cardiologist confirmed I had a very large heart murmur and a large Atrial Septal Defect. It turned out my prediction of dying in the near future was probably right. The doctor told me my hole was so large that it needed surgery in the next few weeks. He told me the risk of stroke or other problems was high enough to where they told me I might not live another few years if I did not have surgery. The plan was to have my hole closed with a septal occluder device.

The time for surgery came and my family was there for me. I remember we had to go through a bad neighborhood to get to the hospital and my parents told me to lock my doors and roll up my windows. I remember my parents waiting in the hospital room with me until a nurse came. She was one of the most beautiful girls I had ever seen. She told me she was going to inject something into my arm. She tried a few times but kept missing the vein or something. Of course me being a young teenaged boy, I saw this beautiful woman and didn’t care one bit. It was just more time to look at her. She injected me with probably the same thing Walter White got injected with before his cancer surgery on Breaking Bad. I know this because my mother said it made me very loopy, giggly, etc. I think it’s just something to relax you before surgery so you don’t panic.

Next thing I remember is waking up and having the doctors tell me things about the surgery. It was the worst pain I had ever felt in my life. The tubes they used to go down my throat were too big and it scratched up my throat. It hurt so much, I couldn’t even breath through my mouth without feeling terrible pain. I couldn’t talk either because of it. I’m sure my family was worried but I couldn’t tell them anything to comfort them. I remember my cousin stopping by to see how I was feeling. I think I remember writing down on a note that I couldn’t talk. I then remember not being able to eat anything because of my throat.

I was watching TV that night for my hospital stay and saw the Red Sox were on. It was an exciting game that came down to the bitter end. Jason Varitek ended up hitting a walk off game winner. It brought some light to a very trying day.

My mother decided to sleep on the chair next to me for my overnight stay. She has always been a very loving and supportive mother. We walked out the next morning on her birthday. It was probably the best birthday gift a mother could receive.

I had to refrain from any strenuous exercise for about a month before going back to the gym or doing sports. I did web and graphic design for money in high school, so I really went hardcore into that while I recovered. I was very talented at such a young age of only 15.

I made sure to tell my shop teachers in school about it as well. I would pretty much sit around talking to other guys in shop class and not really lift anything. When it came time to get back into things, I noticed a big change. I was able to lift about an extra 20 pounds on any exercise machine and run for longer without losing my breath. I pretty much felt like a new person. I’m sure some of that was mental but it certainly felt real.

The head of the vocational part of my high school had me meet with him in his office and told me he had heard about my surgery. He told me I could no longer be in shop class anymore and he was mad that I didn’t tell him. I did tell my teachers but I did not tell him. I basically never saw the guy so I didn’t even think of telling him. Rather than spending almost half the day in shop class, I returned to taking regular classes.

Another thing I missed out on besides girls or shop class was sports. I was always a great athlete but could not pass a physical because of the heart murmur I still had. I thought I could have had a chance at a scholarship if I ran track but couldn’t pursue it.

Sadly, I graduated into the great recession in 2008. There was no work for my brother in construction. The freelance web and graphic design work I was doing also dried up. My family pretty much pressured my brother into joining the military. I had always been close with my brother and did a lot of thinking about joining the military as well. We both decided on the Air Force.

My brother being the always healthy guy he is, got accepted pretty easily. Me, on the other hand certainly did not. I had a lot of trouble making the weigh ins because of my trouble gaining weight. I finally passed the weigh ins and had my physical. The doctor noticed my spine seemed to be curved too much and had me get an X-Ray. The X-Ray tech told me my heart glowed like a light bulb.

I met with the doctor and he told me they found my device and I could feel my face turn beat red and my heart beating. I told him about my heart and he said they couldn’t accept me.

I felt pretty hopeless for quite a while. I wanted to go in with my brother and start a new life. Here was another thing my defect had held me back from. First it was girls, then shop class, then athletics, and now the Air Force.

I spent much of my time playing basketball to help with my depression and anxiety. Every time I played, I had an escape from my troubles. I ended up breaking my ankle from having someone fall on me and needed surgery to repair it.

The anesthesiologist before surgery told me “you know you have a really big heart murmur right?”. That pretty much made my mind even worse. I was unable to walk for months and months without crutches. I felt terrible pain every day.

I saw my cardiologist and they ran a bunch of tests and told me my heart was fine. The chest pains were not from my heart. They said that I seemed depressed and the chest pain was most likely in my head. They had me talk to a psychiatrist right after seeing my cardiologist. I spoke to him about my situation and he knew that I had depression and anxiety. The chest pains I was having were from anxiety. He told me I could start seeing him if I had anymore problems.

My days consisted of taking pain killers, watching TV, going to the library with my mother and playing games. I had just moved to a different town and did not have any friends besides people I played basketball with. I obviously couldn’t do that anymore so I basically didn’t see anyone but my mother and my Aunt that I lived with.

My addiction the the Vicodin I was taking soon spun out of control. It basically fixed all my problems with pain, depression anxiety, eating, sleeping, you name it. I felt as if it made me a better person. I soon started taking 8-12 a day instead of the 4 or 5 I should have been taking. It was a lot for someone only weighing about 115 lbs.

As soon as my supply ran out and no longer had refills, my life completely changed. I couldn’t sleep, couldn’t eat, and was in a lot of pain. It spiraled out of control in the coming days and didn’t sleep for 4 straight days. I was vomiting for 4 straight days as well. I was overwhelmed with anxiety. I had constant chest pain all the time. It was so bad, I thought I was dying. I wanted nothing else but to kill myself but I know I couldn’t do that to my family. I lost about 25-30 pounds from all the vomiting and decided it was time to face the facts that it was not my heart and it was in fact depression and anxiety.

I spent almost 2 weeks in a mental hospital for depression and anxiety. I found a combination of medication that worked well for me and I felt like a new person. My Aunt that I lived with told me it was the first time she had seen me smile in a long time.

As you can tell, my life has been one long struggle. I have had to fight through a lot in my life including my ASD, heart surgery, Lyme Disease, Depression, Anxiety, Schizophrenia, a broken elbow, broken ankle, ankle surgery, constant back pain from Kyphosis, panic attacks, drug addiction, insomnia, the list goes on and on. I know this is not a cheerful success story, but I consider it a success to get through everything I’ve been through in my somewhat short life so far. I only hope everyone else will have a happier life than I’ve had.

Andrew,

My heart goes out to you on reading your story. I was just about to ask you about your life journey.

Asd has really been tougher on you than on me perhaps. You see mine was discovered much later in life. I dont know if that is a good or bad thing but when it was discovered doctors got to work at it immediately. I was admitted assuming i was on the verge of a heart attack or had got it late night as i was working and the pain was unbearable.

The one symptom i had was restlessness in left arm and i assumed it was to do with elevated bp and eating habits. So i acceted it as part of my life. I had similar symptoms in the past and was at the er late night , they found nothing wrong and sent me home. I was grateful and led life as usual for a few more years till that night last year. Its a year today / tomorrow since i was officially a patient.

I am strong and dont fuss much about it but i am anxious about getting a stroke and being helpless. So i try to stay fit and do my best.

Your life has been hard and knowing you have this condition neans you have to live with the knowledge now onwards. Please keep in mind I was considered normal and treated as such for most of my life till last year.

Dreams shatter for us all, i that was not the case for either of us , so i want you to take heart and find another passion. Dont give in to depression a lot. One has to control it. Life is beautiful nonetheless and take heart in that there are others (defence/marines/in life) who lose their limbs etc and still have to keep their commitment to life.

Thank you for reading my story and the kind words. I have been working on finding the right mix of medications so I can be happy again. I just started on a new anti depressant yesterday but it made me vomit and have chest pains/really fast heart rate (133 bpm just from walking). I am giving it another try today and I didn’t vomit so far today and my heart rate seems to be better. I also am not feeling chest pains.

Yesterday was pretty much hell for me with the chest pains, vomiting and anxiety but I am that committed to giving the medication a chance so I can be happy again. I am already on one anti depressant and the new one should help me if I give it the chance. Sadly, I am at a point in my life where I will risk my life just for a chance at happiness.

Andrew, I am another survivor like you and since I have got to know your story I really feel for you and want you to be happy. I am not a qualified medical practitioner but here is what I think about happiness as it is one emotion that I want to experience a lot of and do find it exists in my life when i am not too caught up in how i feel my life should be and how situations should be around me and the kind of people I want or do not want to interact with, or the amount of money I should have and the amount i should spend and the amount I should save. I have discovered that to a large extent I believe my life would be full of happiness if I had “enough money” - the problem is how much is really enough? What I think is enough today changes tomorrow as I become aware of all the things and experiences out there which get facilitated by money. And you are right bang I am into a spiral of depression, brooding, snappy, angry with god, mad at the world for how unfair it is, or that i made a wrong choice by signing up for this life.
Then I turn around and see people I least expect are genuinely happy unlike me. I feel how is it possible they are smiling through life? Close people I know are dealing with health issues which doctors dont understand the cause of and keep shunting them off to different specialists as each gives up on them after a point. People in many parts of the world cope with a lot more that you and I cannot think of. Taking anti depressents is a matter of personal choice but what you say that you are prepared to risk your life for a chance at happiness shows that perhaps you should try to engage yourself in some light work like volunteer at the local aquarium, garden/ nursery, Maybe art gallery, or anything that could be of interest to you. I too get depressed a lot and I find connecting with nature (plants/ tamed animals/ sitting near a water body/ etc) just helps me detox, become calm, notice the beauty of life and then one realizes that life is bigger than everything. You know, when I first had my biggest heart break when my friends fought, moved, girlfriend left, loved ones died, I felt I wanted to leave this world. But life is bigger than everything, including losing the loves of our life. Happiness comes and goes, everything comes and goes. I am trying to open up to life and experience it and would request you to try the same. These reactions you are having with the anti depressants please share with your brother/ anyone you trust. I do not like the sound of it. You are fortunate to be born in a beautiful land. It will be such a waste should anything happen to you or worse if you have to go before your time (as we all believe there is a time for everyone to go) but now is not the time.

I hope you do not get upset with what I have written as I speak from my heart and my intent is to comfort you and perhaps share some ideas which might help you find happiness.

Thank you for the long and encouraging response. I have been trying to spend more time with friends, taking photos, riding my bike, etc to help with my depression. I have joined photography clubs to try to get out and meet new people. Sadly, my back pain has bothered me enough to where I can’t enjoy photography like I used to. I am a graphic designer at a real estate company and somewhat enjoy working but do think I could use time off to try to enjoy life. Not making enough money does hurt with my depression and anxiety but I try not to let it bother me.

I’m hoping my new medications will help. Summers are supposed to be such a great time of year but mine has been somewhat of a nightmare. Every time I start a new medication, I have weeks of horrible side effects like nausea, drowsiness, lack of focus, etc. I’ve been losing hope but am not going to give up.

Wow, Andrew! What a story! I hope you will have a happier life from now on! A hobby like photography definitely helps, and I love photography too. Hey, maybe we can share our pictures with each other one day :slight_smile:
It’s great that you shared your story, and there is definitely a lot of support on this forum. I have not been here for a while, but it definitely helped me out at some point!
Best of luck to you!

Thank you very much for the support and for reading. I think I may have found the illness that explains my medical problems. It’s called Hyperthyroidism. It explains the depression, anxiety, fatigue, heart problems, low weight, insomnia and tremors. I’m making an appointment today to get tested for it. Wish me luck!

You can view my photos at: Here and Here

I just saw your post. How are you? All the best if you are to go through tge surgery

I have been doing very badly lately. The medications I was taking put me in the hospital because of the chest pains, chest tightness and migraines. Thankfully, my heart checks out. I cut myself off of my medication cold turkey the day after being in the emergency room(I know I’m not supposed to do). It’s day 7 without my anti depressant or beta blocker and the withdrawal is bad but MUCH better than it was. The last week or two weeks has been hell but I am feeling better and should be out of the woods soon enough.

Three of the last 4 anti depressants gave me bad chest pains, so no more medication for me. I am moving forward in my life without any medication. I am actually doing pretty well mentally, all things considered. I really just needed the time off of work to get my health straightened out and that’s what I’m doing.

Thank you to everyone who read my story and to Ashish and Rukram for showing their support.

Hi Andrew,

If you are doing better and are on the road to recovery then that is very good news. As far as cutting off meds is concerned, I am only going to suggest you take these decisions under medical supervision/ advise.

My heart goes out to you as you really have a tough time. Do write in as and when you please as the forum is meant to comfort, support, inform etc us.

I have a little update. I have stayed off of the psych medications and I have been off of them for 2 weeks now. I am finally coming out of the withdrawal that has pretty much been torture. The nausea, dizziness, feeling like I’m going to faint, chest pains, migraines, chronic pain, tachycardia, insomnia and bad thoughts are almost gone.

I went to the psychiatrist on Monday and was diagnosed with Psychotic Depression, Bipolar and Anxiety Disorder. He gave me a list of medications to try if I want. I told him that medications have put me through way too much to consider taking again.

I am actually feeling much better mentally than I have in a long time. The time off from work has done me a world of good. I finally have the time to deal with my health problems and also do the things that make me happy. The medication made it so I couldn’t feel anything. The medications were basically invisible handcuffs and now those handcuffs are off.

My heart rate has also dropped considerably. My heart no longer feels like it is beating out of my chest. I am less scared that my heart defect will kill me like I had while on medications.

++UPDATE++ I have been diagnosed with Costochondritis for my chest pain. That’s an inflammation of the cartilage that connects a rib to the breastbone. It feels like my cartilage is being crushed by my ribs. I have a treatment plan and hope it will clear up in a few weeks. Its good to know it is not related to my heart or something life threatening. It is very painful though and will keep me out of work for a little while longer.