Lucky or unlucky? March 17, 2017 12:45pm EST

I've cheated death four times. I am 48 years old. Always active, travel alot, generally happy. In the distant pass, I fell off a roof onto cement. Cracked my head open and severly fractured my knee. I didn't die though. Or becme paralyzed, so I was lucky. Right? Now for the recent past. Five years ago I was so stressed out at work. My boss was treating me unfairly and wanted to fire me. I had always been the superstar at work, so I couldn't understand why this new boss had it out for me. Then one day at the office I fainted. Turns out I went in Vtach, but woke myself up. Paramedics were called and I was wisked off to the emergency room. My attending physician determined that I had Long QT Syndrome and transferred me to the care of another cardiophysiologist who specialized in this condition. We did the hereditary gene tests plus a ton of heart tests and a week later I was given an SICD (defib with leads that go around the heart rather than in it.) My husband and I called it our "plan B." Okay, I took some time off work, complained about my boss's behavior and learned to deal with this "pager" under my skin. In all it's five year battery life it never went off. Lucky. Cut to last year and for some weird reason (still undetermined) I had a massive allergic reaction, was going into anaphylactic shock and spent two days in the emergency room getting my life back. My husband and I had debated going to the ER, but decided to when my throat starting swelling shut. Unlucky. I did all the allergy tests for everything I had consumed that day including medicines and everything came back negative. Unlucky. So now I am armed with epipens with me wherever I go, since I don't know what to avoid. Life goes on.

Now cut to this last December. My battery had run down on my SIDC and it was time to replace my defib for a newer model. A routine operation that can easily be done in an outpatient care unit. Since my Dr. was at a hospital, he performed the surgery there. Thank God! During this 20-minute routine surgery, I crashed on the table. I was having another anaphylactic reaction and my body was rapidly shutting down. I was intubated and placed in a medically induced coma from which we had to "wait and see" if I would come back and with what body and brain functions. My husdand is still suffering from the trauma as my brain has decided to not remember the majority of my incident. I bounced back pretty quickly and within a week I was back home. And, in case you are wondering, my doctor was aware of my allergic reaction earlier in the year and I had kept him apprised of the negative lab results. But I had reacted (even stronger) to something and that something is life-threatening. Unlucky.

I would have thought this enough drama for anyone's lifetime, but I was wrong. I followed up with my doctor after the surgery and hospital stay and he noticed a heart murmer that he thought could be nothing, but since I was turning out to be more complicated, he ordered an echocardiogram to be sure. Turns out that I have mitral valve prolapse with severe regurgitation back into my left atrium. It will have to be fixed in the next 3-6 months. This time it's no routine surgery. But, first and foremost, any surgeon is going to want to know what I had an allergic reaction to on the operating table back in December. I have had my blood evaluated/tested for all the drugs I was on in the OR, but again, they all came back negative. I'm now slated to spend a day in the hospital while they "challenge" my system with the drugs directly. My luck, this could go horribly wrong or worse, I react to nothing and have to hope for some surgeon to take a chance on me so my heart valve can be fixed.

I am so overwhelmed with confusion and grief and guilt and hopelessness. I figure I have 5 lives left (if cats can have 9, why can't I?) But each time I recover is harder and harder. I want to enjoy my life that I have worked so hard for. And I want to be there for my husband and my family.

Anyone remotely in the same boat?

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7 Comments

steedo, March 17, 2017 4:03pm EST

Hi Julia, you, I and all of us are lucky [please leave god out of it-hes busy with the mess his followers are making in the middle east and elsewhere]. Your story is one of bad luck but the fact that you sat at a computer and posted the story is lucky. I learnt and remembered long before my run of 'bad luck' from my ex father in law; here is his story and outlook. at 32 with 3 kids he started to notice his tennis game going off. He went to get a check up [1963] They told the hollywood goodlook, 6foot 2 guy he had the start of Parkinsons. his condition escalated and as it was before Aldoper had been discoverd the only way to stop the shakes was a brain operation. Sadly it left him wheel chair bound- the op didnt go well. He fought back and was progressing. then he had a spasm in the hospital and fell out of bed smashingng his right arm severing the tendons to his hand [there goes one hand -he was right handed. Not to be deterred he struggled on. The medical fraternity gave up. One amazing nurse orderly didnt and in his own time worked in the Gymnasium and he improved. Ooops then he had a fall and shatterred the right Kneecap. he pushed on. Two years later-OOps he falls again while trying to walk and smashes the other knee cap. he fought back and learnt to shuffle along without the luxury of being able to bend his legs! moving forward to when his wife was just anable to keep him at home and he moved to a nursing home wheel chair bound. throughout this journey his mind remained normal even though speech was difficult. I asked him how and why he kept going. He stuttered out two things; 1. he wanted to show his kids and all his friends that no matter what you must keep trying. and 2. he changed his wish list down to just being happy to see and hear his kids and grand kids around him! In other words he looked to what was good and didn't lament the loss. I my self then developed ultra high blood pressure which led to permanent AF. On the back of that I got bowel cancer and needed to have major surgery. I worked hard to get over it and POW I had an eschemic stroke 16 months ago. I no take my ex father in laws lead and rejoice in what i can do and push to the background what I can't It is what it is- I cant change it and spending all day thinking at how crap my new life is does nothing. I get annoyed still that friends and family don't understand but accept they cant especially when I refuse to wallow in self pity [not saying You do]. I take and rejoice in the things I can do. I am lucky that the ten tablets a day can keep me going a bit longer ; I am alive and I may not be able to play soccer with my grand son [3] but rejoice in his happiness and joy that I cant catch him when he runs away?! [ I used to be a first division soccer player- my grandfather played in the USA for the New York Giants] Its how you choose to look at it.
purple heart, March 17, 2017 7:35pm EST

Those are two great stories to look for the positives in what ever life we have been given! I say I am like a cat with 9 lives too! :) I'm on my 4th! First I had a sudden cardiac arrest at age 34. Then I had my ICD fire off two times once and then again a few years later! My journey has been tough however, each day I remind my self when I wake up to find something to enjoy! Tomorrow will be spending the day with my daughter who was only just about to turn two when I had my cardiac arrest! I am so happy I keep coming back to see my two children grow into beautiful very young adults! Enjoy your life! Thank you both for sharing!!
Lace, March 17, 2017 7:45pm EST

I thank God for every day for the good time and the bad time
mingo1, March 18, 2017 5:14am EST

I am a 69 year old heart attack survivor since 1993 when I had a LAD that was so kinked up that they could not do anything with it. All my other arteries were good. However, after the attack I was in an induced coma for three days. Before and during the trip to the hospital I was shocked back to life nine times. The ER people and the initial doctors told my wife that they had very little hope for me. However, I did get through this and three months later had an ICD implanted when they were as big as three cell phone taped together and in my abdomen. The event also left me with and EF of 28%. Over the years I have had over 100 shocks and on two occasions, 15-20 in a two hour period. Several ablations took care of the screwed up nodes and I have not had a shock in over a year. Since then I have had seven hip replacements,. two severed Achilles tendons, two eight inch rods and stuff in my back and a whole bunch of other surgeries. While they were tough, my old beat up heart made it through. I can do most everything today and am glad that the ICD is a small one now under my clavicle. You noted nine lives. I must have 20 cats inside me as I could have been up above many times. I do have some depression, but have a great support network headed by a wonderful wife of 37 years. It has been an amazing trip since 1993 and I am happy and lucky to be typing this note to you now. LIVE STRONG and just know that all will be good. Take great care of yourself and live a happy life.
sprayer1, March 18, 2017 5:15am EST

hi, i looked at yur post & at first thought how unfair that yu have gone through so much & then decided that many people arent so lucky. yu are a fortunate & very strong person and are suppose to be here & take each day as it comes & get something good from it. i had a heart attack at 60 after being lucky enough not to have any issues all my life until then. i now take 5 meds a day after taking nothing except a tylenol or sinus pill! but i realized that i am here & alive when so many people leave there homes each day & dont come back, think of the people who got on a plane & flew into the twin-towers or people that just get in their car to go to the store & are killed by a drunk driver! we just dont know when its all over & we have to just live in the day & not worry about what-ifs!! hope yu continue to live a long life & be happy.
cdameron, March 18, 2017 1:00pm EST

You are blessed... but there are those challenges you are having. I can't say I have had your experience except for the allergic part... I was plagued by allergic reactions to all kinds of food. Pain and as it turned out a heart attack. I'm sure I was not having allergies, it was probably angina. I had a very wise nurse who told me several weeks ago that when your heart is not functioning properly all kinds of things go wrong with your body. I believe that. I also believe that most of my unpleasant maladies were somehow connected to my heart. I have asked several times about the heart murmur I was diagnosed with as a child and then again in my 20s and 30s. Most have brushed that off with a look like, "what are you talking about" but I think it has a bearing in my continued struggle to rehabilitate. I am hoping to see continued posts from you because you have so much to share with the rest of us about survival. Continue your forward roll because life is too precious not to. We seem to end up aa a blip in a post but don't let that happen with you... Keep reaching out.
sdcrumley1, March 21, 2017 8:57pm EST

I posted on a previous page a day or two ago and explained my complex medical issues and the lack of medical care I have received from what should be some of the best doctors in my State of Georgia. Please members if you don't mind and see what our similarities and differences are.. I can guarantee you that you often learn more that way sharing with others who have information and we can try to figure out how many doctors vary inn their treatments, diagnoses. Let us ban together to save our heats as we need them not only to live, but to share with oters

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Lucky or unlucky? March 17, 2017 12:45pm EST

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