Living and Loving Life After Open-Heart Surgery, Part 1

Perils and Pitfalls of Heart Surgery

 

As of the day I write this post, it’s been exactly 4 months since I had open-heart surgery to correct a congenital heart defect. Since I was a teenager I had been misdiagnosed. First, it was a pulled muscle when my mother rushed me to the ER in high school afraid I was having a heart attack. Then, in my early twenties after almost passing out from heart palpitations due to stress, I was diagnosed with MVP (MitroValve Prolapse). MVP is a very common diagnosis in women, so I’ve been told. So for the past XX years (not telling you how old I am!) I have been running around with a heart condition that could have killed me instantly if I was too active. Thank goodness I haven’t been very athletic since my time in Army!

My super rare condition is known as Anomalous Right Coronary Artery. (click the condition and you will be taken to Stanford’s website to describe the condition in detail.)

Basically, there are two main arteries going through your heart with a few veins along the sides. They pump blood to your heart and if one of the veins coming off a main artery is in a bad spot, you could have limited blood flow to your most important muscle. It’s estimated less than 100,000 people in the US have this condition. Have you heard of healthy athletes dying instantly of a heart attack? One of the causes is an ARCA (Anomalous Right Coronary Artery). Turns out the only time it’s good to live a sedentary life is when you have an ARCA and don’t know it!

open-heart surgery

I would get chest pains and have difficulty breathing at different times over the years and just ignored it because that is common when you have MVP.

A couple of years ago the VA did a heart scan and told me I didn’t have MVP. So when I complained this past summer of chest pains to my VA primary care doctor, she ordered a couple of tests. One being a cardiac stress test. I had an episode on the treadmill during my stress test. We stopped the treadmill and the cardiologist was informed of my situation. He said he would review my tests and get back to me. Two days later I had an appointment with a Cardiac Fellow.

I have to stop and say that the man who first saw me was a smokin’ hot Spaniard doing his Cardiac Fellowship at my local VA hospital! He made the trip to the hospital worth it! I also must admit I flirted with him! I’m so shameless! LOL

While I was with him, I had another episode of chest pains. They had been increasing in number as well as the severity of pain. I still didn’t understand what exactly was going on. I had only told my roommate who happens to be my cousin and her mom, my aunt. I didn’t tell anyone else because I didn’t think it was anything major.

Within just a few weeks I was scheduled for a surgical consult with a specialist at the Palo Alto VA hospital. I flew up to see him and learned he was a pre-eminent cardiothoracic surgeon who was well known for the surgery required to fix an ARCA. I went up on Thursday and was supposed to fly home later that day. They kept me overnight because they wanted to do a cardiac catheterization on the spot.

Turns out, when my surgeon, Dr. Burdon, says jump, everyone says, “How high?” He rushed through the cardiac test and had the results within a few hours.

This man runs the program at the VA hospital in addition to Stanford Medical, which is just a few miles away from the VA hospital in Palo Alto! And I’m very glad for the fantastic treatment I received! On that Thursday he scheduled my surgery for 4 days later! He was worried I wouldn’t survive a heart attack if I waited any longer.

When they wheeled me into surgery, I requested a cabana boy for when I came out of it. No cabana boy when I awoke!

open-heart surgery
Me right after they took out my breathing tube. Probably 4 hours post surgery

Did you know when you go in for surgery you are totally naked on the operating table? I didn’t know it until after the surgery and I discovered I was only covered with sheets and a blanket. Total commando underneath it all!

When I went under I had two IV lines in me. When I woke up I had 5! Three in my arms, one in my neck (carotid artery), and one in my thigh. I also had a catheter and a chest tube inside me when I awoke. See all of those lines and bags hooked up to me? ugh!

When I woke up I was madder than a bee about to sting you! Dr. Burdon told me I would be sedated for up to 24 hours after the surgery. He did warn me when I woke up I would still have my breathing tube down my throat, because they wanted to make sure I could breathe before removing it. Instead, he woke me up only 2 hours after surgery and I had still had the tube! I was awake by 1PM on that Monday afternoon! I don’t remember it, but my aunt told me I called my doctor a liar and a few other choice words! LOL But, to be fair, I was in a ton of pain! They had put me in a weird position on the operating table and it caused a severe spasm all through my back. I was literally hunched over within a few hours after waking up. They put a heating pad under me and I kept turning it on every couple of hours because it has an auto-off function. The nurses all helped by giving me back massages. Not even the highest level of pain meds (dilaudid) worked to take the pain away!

Too bad my original cardiac fellowship candidate wasn’t in Palo Alto! I would have loved to get a back massage from him! LOL

Have you seen The Exorcist? The original one with Linda Blair? Remember when she had green projectile vomiting? I always thought that was silly. Until the night of my surgery! I spewed red all over me, my bed, and my nurse 3 times before I finally stopped! They had to take all of my linens off and give me a sponge bath only a few hours after surgery! Not fun! Learn from my experience, DON’T DRINK CRANBERRY JUICE after major surgery!

This is what I felt like:

But this is what I looked like the next day:

open-heart surgery
on day 2 it’s normal to be put into a chair. I slept a lot the first few days in the chair.

I spent 5 days in ICU before being taken to the cardiac ward. One of the good things about being a woman in the VA hospital was I received a private room! Woot Woot! Also, the surgery was 100% free!

When they closed me up they used a procedure and bandage called, AquaGel. They stitched me up inside like normal, and then instead of staples or stitches in my skin, they glued my chest back together and put a funky bandage on it. As seen here:

Honestly, what does that bandage on my chest look like to you? LOL But it is designed to help heal the skin much faster than using staples, which some doctors are still doing! Ugh!

Most patients are kicked out of the hospital 5 days after open-heart surgery due to insurance not wanting to pay for more days. In the VA, there is not an insurance person screaming to kick patients to the curb! I stayed in for 9 days! Yikes! I was soooo ready to go home after 7 days. My doctor normally keeps his patients from 10 – 14 days! I promised him I would stay a week at my aunt and uncle’s house so they could take care of me if he sent me home early. He agreed!

But, before I could leave the hospital I had to wait until my chest tube had finished draining. They took it out and stitched up that hole on day 7. Then he wanted me to do more with the therapist before I went home. Thankfully, I didn’t have to go anywhere for therapy when I got home. My local cardiac doctor let me do my therapy at home and I am still doing it! I have lost 20 lbs since surgery just by walking every day.

Me right after they took off the funky bandage

I will tell you having a goal is very helpful for healing. I had made plans to attend a writer’s conference in Vegas on November 2. This wasn’t even 6 weeks after my surgery. The doctor wasn’t sure if I could go. I certainly couldn’t drive to Vegas. I had to stay in the back seat until after the 6-week mark just in case I was in an accident. They didn’t want anything to mess up my sternum while it was setting back into place. But I did everything my surgeon said and he let me go! I’ll admit I overdid it a couple of times. Bad Jen! But it was so much fun! Meeting all of the authors I interacted with online was so much fun!

Here I am with Bryan Cohen and Craig Martelle! If you expand the picture and look really closely you can see the top of my scar. It’s tough to see. My shirt scooched over during the photo but you can see a red spot just above the corner of my v-neck shirt on my right side.

I’ll admit I did take a walker and used it. I tried to do dinner without it on the last night and regretted it. My walker was cool, but I must admit I hated appearing so week. No one could even believe I was there! Even though I told everyone I was going, most didn’t think I would actually make it! I have an author friend who has gone through much worse health issues than I have and he offered to let me drive up with him and his wife! Brandon Barr is a totally cool guy and his wife is super nice! I had a great road trip with them!

Here’s a better pic of my healing scar:

Only a few days after I went home to place. Almost 3 weeks after surgery.

My first three months of recovery moved along very nicely and without any issues! I was healing faster than most expected. Until I got bronchitis and a sinus infection all at once. Stay tuned for another blog about how I broke my healing sternum and what the doctors plan to do about it. 🙁

I will say this, tons of prayers and a positive attitude will help heal a body much faster than being negative! So, If you are going through something like this, do everything you can to keep a positive attitude and remember, God is in control. Trust his plan and you won’t worry nearly as much!

I want to thank everyone for their prayers and well wishes! I’m not done healing and have recently suffered a setback, but I’m in good spirits and trust in God to guide me through this all!

December 8 at Disneyland with my niece and nephew

 

 

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36 Responses

  1. I’ve had 3 open heart surgeries and a pacemaker my first was in 1979. I have come back very fast as to my health . I’m 74 years old

  2. Wow. Sounds like you have been through a lot. I can’t imagine the pain you must have been going through! I hope the worst is over for you and you breeze through the rest of the healing pprocess.

  3. Goodness gracious Jen! You are sure having a fun (that word is dripping an sarcasm LOL) with all these health issues huh? I don’t understand why they didn’t put you on oxygen to breath better, before this happened. We won’t know now if it would of helped to stop you breaking your sternum.

    My husband had a robotic assisted radical prostatectomy. They sent him home after 2 days and only because we got a horrendous ice storm and they wouldn’t release him until we got power back. Two weeks, or thereabouts, he went in to have a scan to see if he was healed enough to remove his catheter. He passed out cold and they decided to keep him in observation for a bit. There were my husband, on the bed and myself and the doctor standing to one side of him. My husband says “I feel like I am going to be sick” and threw up a fluorescent green fluid. All over the doctor and the computer that was in there. So, the reason for this story is, even though you drank cranberry juice, you may not have thrown up that color. My husband did not have anything to eat or drink that was a bright florescent green. Kinda gross, I am sorry but didn’t want you to feel awkward or weird because of your experience. Plus a good, even though it was gross, laugh. But be careful of laughing too hard. ☺

    Please take care of yourself and heal fast. I will be sending up prayers for your fast healing. Just keep remembering the good time that you, your sister, niece and nephew had at Disney. More better days are coming.

    Wanda

  4. What an inspiration and education you have provided. God bless you and here is to a happy healthy new year. You go girl.

  5. Hi, I hope you’re okay. I’m anxious to hear how they will fix your sternum. You’re lucky you lived so long without knowing your true heart condition. I’m glad they figured it out and were able to fix it with surgery. I can relate to what happened to you on the day of your surgery. I had spinal surgery over a year ago and it was horrible. They lied about several things. It’s a long story, but I suppose the worst was when I first woke up from surgery and the pain was completely indescribable. I had no pain medication in me, nor my anxiety meds. I was so mad! I tried to scream. I tried to tell them what was wrong because they weren’t even looking at me. But nothing came out because I lost my voice from having the breathing tube in me. They had removed it earlier. They finally noticed me and explained that they couldn’t wake me up. They said they had to resort to stopping all meds. My face felt very wet. They said I was crying and had been for a while. They said I woke with a bad panic attack. Since I kept falling unconscious, they refused to give me any meds for hours! It was so horrible. The worst pain of my life. Once they finally let my husband see me, only because they thought he could keep me awake. I still remember him and the nurse saying “breathe” to me every few minutes. My oxygen level kept falling and kept forgetting to breathe. I was on Dilaudid for months. I still have chronic pain and also have a chronic sinus infection I’ve had for years. I need a 2nd surgery to fix my sinuses. They did things differently when I had my first sinus surgery 9 years ago. Now they need to fix what they did wrong back then and then fix some other things with surgery. I have other health issues also.

    1. WOW! I hope you can find a way to get better!
      Overall my surgery went very well, but I hated that they woke me up so early. I have heard it was a good thing because you aren’t supposed to be on the respirator for very long.

  6. I too know the ” joy ” of open heart surgery. I had a triple bypass almost 2 yrs ago ( unfortunately mine was through a regular hospital with private insurance . I was evil and brought home a sheetblanket from the hospital and pillows ( you know you have to hug a pillow when you get up and when you cough ) then was given a heart shaped pillow a couple weeks after being discharged ( They were out while I was in the hospital ) I spent a total of 3 weeks in the hospital . While there I was diagnosed with CHF ( congestive heart failure) . Never heard of how your incision was closed ( I had good old staples) . I know I have more than likely rambled on so in closing hope you are recovering great

    1. Thank you Brian for sharing your experience! I was given a lung shaped pillow to hold. From everything I’m hearing, I actually had a great experience! I was very blessed! I am recovering quite well, now. Still have a ways to go, but doing better each day. 🙂 I hope all is well with you now?

  7. Oh goodness you surely have been through the wringer. But I have to say you’re looking fantastic in your photo at the authors picture. God love your heart.I’m sure it was horrible breaking your sternum. My mother-in-law had open heart surgery at Duke University back in the 70s. It took her a while to recoup. She lived 5 years past what they gave her. Her issue was something totally different from you’re though. It was Schlederma and I’m sure I spelled it wrong. Hers affected her organs. At that time it was rare and they didn’t know much about it. It seems the Lord has bought you a long ways quickly. May God continue with rapid healing of your body. I’m in awe of you going to Sochi by yourself. I’m glad you had a good time. Keep up the good work on therapy☺☺

    1. thank you Marie! God is great! The way it all came about was a total miracle. I still have a ways to full recovery, but I’m taking it one day at a time and very grateful for everything in my life! I’m sorry to hear about your mother in law but praise God she lived so much longer than what the doctors told her. 🙂

  8. I wanted to give you a little bit of my story of I may. My husband got up one morning as usual left and went to work and some up in a lifelite helicopter. At the age of 41 he had to have a quadruple bypass. We already knew he had heart problems but was not aware how severe. He was having mild heart attacks daily up until they done surgery. I was terrified so was he. We thought he was going to get to go home early after surgery because he was doing so well but then he developed atrial fibrillation and had to stay. After his release 2 weeks he fell and broke his sternum apart so went to Dr couldn’t put it back together. By the grace of God it will be 5 years in June since his surgery. But because there was so much damage to his heart and they used a new procedure on him he is permanently disabled. They say having open heart surgery changes you and it does to a point it changed my whole family. I just wanted to share my experience with you.

    1. Thank you for sharing your story! I just thank God you still have him with you. Breaking the sternum is tough. Mine still isn’t healed yet. Dr said it could take up to a year.

  9. Sorry to hear what you have gone through it sounds like you have had a bit of a rough time. I totally sympathise with your initial misdiagnosis as I had a bit of a similar situation last year partly my own fault and partly the medics over the years having missed a congenital heart defect. I was admitted to hospital last year with what my GP suspected was unstable angina after I finally went to her with what I thought was a worsening left rotor cuff impingement problem which I had been suffering with for at least 12 months. When I got to the hospital I was told I was certainly having episodes of angina and had possibly had a minor heart attack some time in the previous few weeks and I was told I was being scheduled for an urgent angiogram, also asked me if I was aware I had a heart murmur. I said I was aware of it but had been told previously that it was proberly nothing to be concerned about and had never had any follow-up. I was told I would be getting an echocardiogram as the cardiologist consultant felt it was wise to get one in view of the murmur. After getting the angiogram and having a stent inserted into a coronary artery that had shown some minor narrowing. Afterwards I was given an echocardiogram , it was then I was diagnosed as having severe aortic stenosis due to a complication of a congenital malformation of my aortic valve called bi-cuspid valve disease. Normally the aortic valve has 3 lobes or cusps but in some people two of the cusps are fused prior to birth. Now in some cases the person will have no problems but bicuspid aortic valves are prone to calcification which causes the stenosis which is basically a narrowing of the valve meaning not enough blood is able to pass through and as a side effect causes angina as it gets worse. My Cardiologist imeadiatley refered me to the Surgeons for an aortic valve replacement which I had 6 weeks later. I have had a good recovery in the 5 months since with only a couple of minor complications and I have to say the care I received when in hospital was excellent.

    1. Hi Robby,

      I am so happy to hear your recovery has been going so well! It’s amazing how many things are misdiagnosed because the doctor didn’t do enough tests! But it sounds like they caught your rare condition before anything major happened. I hope you no longer have to worry about angina or a heart attack! Best wishes. 🙂

      Jen

      1. Thanks Jen and I hope you have recovered from your recent accident as if you had needed any more problems since your surgery. Though maybe I should have not have attracted the demon Murphy’s attention post surgery, it appears I’ve developed some kind of moderate atrial tachycardia, they recently attempted to do an ablation procedure but instead of finding what they call rogue nodes which are clumps of cells that override the normal sinus node which normally controls the heart rate and eliminating them by passing high frequency radio waves which “burns” them out. they have found it’s actually my sinus node causing my permanently elevated resting heart rate , so my cardiologists are now in discussion together wether they try a more complicated form of ablation procedure to “refashion “ the sinus node with no gaurantee of success or try new drugs.

        1. Thanks Robby, still in a lot of pain since the car accident, but it’s what it is. I hope they get a handle on your issues and can give you a good outcome. I cringe when people say new drugs. You never know what’s going to happen, but the ablation is also a bit scary. I don’t envy you one bit. Just stay positive and do whatever the doctor says. I followed my cardiologist’s orders, but they also made sense. When I didn’t understand something, I asked. I’ll keep you in my prayers. I’ll keep everyone here who still has medical issues in my prayers.

  10. I cannot believe I found someone else that has gone through this!!! I have had *issues my whole life but they never found it until a few days ago! I had a pacemaker placed (By the VA) 10yrs ago & a few ablations, but never felt “better” like everyone said I would. I would come in frequently & complain of SOB & palpitations but my PM never recorded the episodes. They knew I have pvc, svts and pacs and who knows what other initials! I started complaining about a month ago that I couldn’t walk to my car w/o an episode– they were trying to find out why & decided to see if I had coronary artery disease (I think mostly to appease me and my constant complaints!) through a heart cath & were amazed to find my RCA is connected to my left cusp between the A& PA. (I believe– although I am so green I don’t really know what I am talking about! 😉 ) I was VERY active as a youngster, played sports, joined the military and am relieved to hear they finally found a cause for all of my symptoms– I go in for a CT in 2 days. and they figure out a course of action SOON I HOPE! I WANT TO BREATHE!!!

    I can’t believe I found another ***human with this!!!

    1. HI Jolene,

      I hope all went well with your results. We are a minority, i heard there are less than 100K people in the US with an anomalous right coronary artery or ARCA. Not all are candidates for surgery, some can be helped just with medicine. Whatever your outcome, I wish you well!
      Jen

  11. Hello Jen,
    Ï am relieved you are better, but what you had to go through is really tough. You are extremely lucky to be alive. You had astounding care and it is good to hear the VA did such a wonderful job. After reading about the auto accident and seeing the photos, I must say, you are twice blessed to be alive. Take care of yourself and get well.
    I had major surgery many times so I know the feeling of nakedness on the table. I was in a teaching hospital which made it worse. I literally felt exposed but the surgeon was very professional and kept the staff in line. The experience taught me humility and I too am grateful to be alive.
    I too spewed green liquid but mine was tummy bile. They did not give me anything to drink, thank goodness.
    Your explanation of the condition was spot on and well done. It was nice to see how good you looked on Moscow so soon after the surgery. Keep the faith and keep writing.
    I downloaded one of your books and I will read it soon. I will leave a review. I will also follow your blog to see how you are. I am a Vietnam Veteran’s wife who understands what you have been under going.

    1. HI Denise!

      The trip to Moscow was in 2014, 3 years before the surgery. But thank you! and thank you so much for picking up one of my books! I hope you love it. 🙂 Tell your husband I said Thank you for serving! It is wonderful to hear about veterans!!!
      So sorry you have had so many surgeries! Ugh, I don’t want any more. I know it’s inevitable as we age, but I still don’t want them. If I do have another one, I hope they knock me out before stripping me down on the table! It’s awful to be naked and even worse to be awake and have everyone see you. Thankfully, they see it all day long and probably don’t think anything of a naked body anymore.

    1. Hi Colin,
      I think you have to have a sense of humor to survive. If you read my comment above, humor got me through many a tough time and the will to live.
      I think Jen’s sense of humor with everything she has lived through is wonderful.
      Denise Sparks

  12. Glad you are doing well, God will help you and guide you, always look on the bright side of life and it’s experiences your family need you.

  13. Jen.

    I’m glad your feeling better!
    Having any surgery is risky, especially the heart..
    ) know you’ve been in a lot of pain, but I hope it’s fading so you can get back into enjoying a normal life (whatever that is, lol! I hope you feel ready fo begin writing again. There are a lot of us waiting for your next book!

    1. Thank you Stephen! It is slow going, but I’m getting better each day. 🙂
      My next book should be out next week!

  14. Hello I hope you are doing well!! I’m 25 years old and 5 weeks post open heart surgery with the same condition as you. My right coronary artery was coming off my left and being crushed by the pulmonary artery. Had a few setbacks currently undergoing wound care. It’s nice to read someone else’s story like mine with such a positive outlook. I’ll be praying for you. Thanks for sharing !

    1. WOW, it is so strange how many people have responded with the same or similar issues. I’m sorry to hear you are currently going through setbacks. I hope they get the issues sorted out right away! The best thing you can do is to keep a positive attitude and do everything the doctors tell you. Since they see it all the time, they know what’s best. Although, if anything doesn’t seem right, ask questions. It is up to you to be your own advocate. No one knows your body like you do, not even the doctors. So be sure to speak up if you have questions/concerns. I’ll keep you in my prayers, and thank you for praying for me.

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