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Open Heart Surgery to correct an Anomalous Right Coronary Artery.
Hello forum readers, I'm Teddy and just joined the AHA Support Network. Below is a copy of my recent Facebook post that I shared for the first time after learning I have ACHD, and thought it would be a good copy to introduce myself to this group. I welcome your thoughts and experiences as I begin my journey down this path. Thanks in advance!.....
(Edit - Tue 2/19: To add more info from my hospital report and provide additional specific diagnosis details...Right Coronary Artery: There is ANOMALOUS ORIGIN OF THE RIGHT CORONARY ARTERY from the left coronary cusp with is felt to be malignant. There is acute angulation at the ostium of the right coronary artery which displays an intra-arterial course between the pulmonary artery and proximal ascending aorta and demonstrates luminal narrowing at it's ostium.)
Friends and family, I am facing a personal medical emergency that I wish to share the news of with you all. I am a private person (as you all may guess from lack of FB postings!) but this is a significant shareable moment in my life. I have spoken with some of you already with this news, I am grateful for your wishes of luck and support.
This past Sunday morning I went to an Urgent Care facility after a second consecutive day of waking with chest discomfort. With an abnormality in my EKG I took off to the ER at Holy Cross. In triage I learned of an incredibly high Troponin level of 5000 during blood-work (the protein/enzyme the heart creates while under damage)…normal is around 19. It peaked at 6000 a few hours later, before trending down to 4300. After extensive testing (echo cardiogram, groin catheter angiogram, CTA/CAT Scan) we discovered an anatomical anomaly of an arterial vessel which I’ve had since birth and had no cause to be of concern until now. It is very, very rare. And gone undetected is often the cause of Sudden Death Syndrome.
So, with two choices in front of me…either proceed each day likely un-symptomatic until something triggers an attack, taking me by surprise to my possible death. Or to use the opportunity of having this knowledge to address the abnormality. I will choose the latter. This means open-heart surgery. And not by any heart surgeon, but by someone who has dedicated his professional life to cases of Adult Congenital Heart Disease and worked on more of these rare cases than anyone else in the country. With thoughtful guidance of my team at Holy Cross, among who I am blessed included a heart surgeon who knows my wife through her workplace, and who immediately called his colleagues - I have found the best at Mass. General, in Boston. And things will move fast.
I am going to start a Go Fund Me campaign in the next day or so. Please, please look for my next FB post announcing it. And please, please share with all your friends, family and associates. This will be a tremendous financial and emotional burden on my entire family, who not only include my wife and kids, but also my mom and bother who many of you may know all live together in this household. We hope for your prayers and support in this upcoming difficult time, as we move forward with great faith and confidence to face a new challenge in our lives.
With great love and gratitude, yours truly,
DolphinWrite, February 19, 2019 12:12am EST
God bless. Very glad you caught this.
Teddy51, February 19, 2019 8:36am EST
Thanks so much, DolphinWrite. Every wish, word or encouragement and support means the world to me and my family during this difficult time. I'll be taking everyone's positive thoughts in there with me, I have high confidence and faith in the team at Mass.General, and plan on returning stronger than ever!! I look forward to updating my post as the final plan comes together this week, and if course following the operation in the short weeks to come. Until then, blessings to you and yours... thanks again! Teddy
JamesPL, February 19, 2019 8:19pm EST
As Dolphinwrite says, so glad this was found. I think you have chosen the right course of action. I had open heart surgery 7 years ago. I can tell you that the technology for open heart surgery is excellent! My cardiologist has told me multiple times of how well we have advanced in heart surgery in a short period of time. One piece of advice I'll give you for recovery is to enroll and go to cardiac rehab. Open heart surgery will take its toll on you and rehab helps gain your strength immensely. After rehab ends, continue to exercise to help strengthen your heart. The therapists will help you with exercises you can do at home. Listen to your doctors and follow their direction closely!
I wish you well in your surgery and recovery!
Teddy51, February 20, 2019 9:03am EST
Thanks so much for your thoughtful advice and words of encouragement! It's reassuring to hear from folks who have direct experiences, and I'm glad my wife directed me to look into resources here at the AHA :o)
I will absolutely heed your advice, being proactive and openly receptive to my caregivers will be high on my priority list!
Thanks again, Jim. Blessings...
AHAASAKatie, February 20, 2019 9:09am EST
Welcome to the Support Network, we are so glad you are. :) Katie
Teddy51, March 22, 2019 9:45am EST
Wow, it's been a month since my last entry, time has moved slow as molaases. Soon after that last post, I finally received a surgery date of 4/5/19 from my team in Boston. And although it's been a long month of waiting, now at 2-weeks out, time seems to have sped up a bit.
Being on an approved leave from work since my first heart incident back on 2/11 has been valuable. I've been able to get some affairs in order, take it easy by doctor's orders, and spend plenty of time with my family. Still, it's not easy not being able to chase the kids around, play tag, wrestle and play fight, etc. I miss my woodworking. I miss my team at work, being this sedentary is not in my nature.
But, I remain so positive about the upcoming surgery! I know I have the best team at MGH, many things just lining up so easily that I have great faith in the process, and so much love and support. As confident as I am, I expect some wave of emoitions as the next couple of weeks go by. They will be part of my whole experience, and I'll embrace them as I move forward with peaceful surrender, geniune optimism, and anticipation of a healthy recovery.
Thanks for reading my story, your thoughts of support and prayers. Two more weeks....LET'S GO!!!
Love and blessings,
Teddy51, April 6, 2019 9:42am EST
(my latest FB posting from 4/6/19...)
Brief surgery update my friends...it did NOT happen yesterday as originally planned, and that's okay. A couple of factors are affecting the schedule; a last minute test result pending, and an overloaded ICU Unit is at capacity with two additional urgent cases dropping coming in by surprise yesterday (and believe me, MGH is a massive hospital complex!). Honestly, I'm ok right now, not under cardiac arrest like these recent emergency arrivals, so we understand the bump.
We now shooting for this coming TUESDAY 4/9.
Thanks everyone for continuing to check in with us asking for updates, and of course your ongoing thoughts and prayers. We're hanging in here, being flexible and staying positive! Talk to you all soon!
Teddy and the family.
Teddy51, April 14, 2019 10:37am EST
Sun. April 14, 2019 - Surgery was a success! A couple of bumps along the way immediately following the actual surgery period, but otherwise I have had a textbook recovery in the hospital, and today is my discharge day here at MGH, a mere 5 full days after open heart surgery (wow!).
I must say, the entire staff here in Boston is absolutely stellar. I believed, and now I know, that I was in the best hands available. I'm ever so grateful.
Now, the next 6-week stage of recovery, with Cardiac Rehab and all the advice and guidance I will heed along the way, from my doctor's, other providers, and folks like you reading this who have had similar experiences.
AHAASAKatie, April 14, 2019 5:27pm EST
This is such great news! Best Katie
KatieBrown, April 16, 2019 2:47pm EST
Hi there. I just happened upon your post and while I wish I'd caught you before your surgery, I am glad to see you are on the recovery side. I too was diagnosed with ARCA 3 years ago unexpectedly (and at age 29) and had the coronary unroofing surgery 3 months later (Emory in Atlanta). Happy to say my surgery and recovery went really well and I am thriving now. You are right that coronary anomalies are pretty uncommon, so I would encourage you to join the Anomalous Coronary Artery Heart Group. It's a great group of people just like us....most of whom seem to have been diagnosed as adults. It's also nice to be able to share your own experience with others. Feel free to reach out with any questions!