Hello all,
Kevin (@gillytech) from California is our newest member! He believes he may have ASD… he does not have a diagnosis yet but I would love to open the floor for anyone willing to share their pre-diagnosis journey with Kevin? He is otherwise healthy, and would love to find resources and tips from you all.
And Kevin, please feel free to chime in and let us know how you’ve been feeling!
Best,
Arjuna
Hi so yeah I can open up with a question. Currently looking at treatment options. The occluder device option has its pros as being minimally invasive and effective. The robotic OHS procedure could be an option for me and its pro is a more natural method, not a foreign object in my heart for the rest of my life. I’m 34 so I still have a long life ahead, it’s really hard for me to think that having an occluder installed for that long could end well. On the other hand, the extra upfront expense (more pain, recovery and hospital time) of minimally invasive OHS might be worth it for someone in my position. I guess I need to know more about the dynamics of my particular physiology. Going to find a PCP to help me get a TEE or refer me to a cardiologist to do same as the next step.
The question is, what should I be expecting and are there any tips to make the right choices here?
Hi Kevin, first of all welcome. You are probably overwhelmed with all the information thrown at you and available on the net.
I was 18 when diagnosed, fit as a fiddle racing for the national rowing team etc. It took me some time to get to terms with it. After the denial stage, I looked for alternatives to OHS. I went for an occluder option which in the late 90s was only in trials! Still I signed up.
All was well for about 25 years then the docs recommended a removal as device was desintegrating. Had OHS this year and am fully recovered.
Why am I telling you all this? Every diagnosis and journey is different. You have to make the choices you are comfortable with and trust your docs. If you are being recommended an occluder, go for it. They are so good these days and last a lifetime. Only problem I have heard of is allergies to the metal implanted.
If your ASD is big or awkward, OHS is not as big and scary as it might feel. They give you great drugs. 
Good luck
Hi @TinG thanks for sharing!
I’m actually not too overwhelmed, usually the best way for me to learn something is to teach someone else and I’ve been teaching my family about this condition and what to do with it.
Since posting here I got hooked up with UCLA Medical and my new PCP there referred me to the Ahmanson/UCLA Adult Congenital Heart Disease Center (Dr. Aboulhosn’s clinic). They’re going to get to the bottom of this and we’ll see what happens. I feel I am in good hands and on the right track.
Alright, I am going in for my initial tests and Zio patch at Adult Congenital @ UCLA on Friday. I guess I’ll keep this board updated with my progress.
I can say for sure though that my symptoms are miserable. I used to smoke for about 10 years and quit in 2015-ish. And during that time I had developed a small sharp pain in my throat at the top of a deep breath. I always assumed it was because I smoked. Now that pain is causing me to avoid deep breaths altogether. I believe this pain is due to some PH creeping in over a long period of time.
Another weird symptom is random flutters of my heart while at rest or while walking. They seem totally random and unprovoked. Sometimes I feel it in my neck/throat. I heard somewhere that this is tricuspid regurgitation? When they happen it usually stops me in my tracks and I feel a tiny bit faint right when it’s happening. Lasts for only a couple of seconds.
The main issue is I don’t take stairs and never run anymore. I have been self limiting my activity because I am terrified of agitating my heart rate or bringing on one of those horrible flutters. This has gradually set in over the last year. I have some good days and some bad. Lately it’s been mostly bad. I also have developed a lot of tension in my back right where my heart is.
One very weird sensation I get sometimes is I feel like there is some big vein or artery in my chest that is tense or in the wrong place or something and if I bend or twist or take a deep breath I feel like I am stretching or agitating it. It’s very uncomfortable!
I am wondering if anyone else is familiar with these symptoms and if closure helped anyone with these issues. I haven’t really seen anyone describe these exact symptoms before. Thanks.
Went and saw Dr. Jamil Aboulhosn at UCLA today. He says I have a “textbook” 1-1.3cm ostium secundum ASD with primarily left to right shunt. Pretty good all things considered! Got a tentative schedule for device closure already. So far so good.
@gillytech awesome to hear you’ve got some clarity now! How are you feeling about the device closure procedure coming up? Is it coming up soon?
Arjuna
Lead intern
I feel pretty good about it overall. The procedure is going to be on the 9th of September (next Thursday). I definitely count myself as a very fortunate individual to be able to go from no doctor in July to a PCP with established care at UCLA, referred to a top ACHD doctor, consulted with TTE w/ bubble study and heart monitor done, results in and scheduled for closure on the 9th. That’s just about 6 weeks from start to finish and my insurance is paying every cent of it. Very fortunate indeed.
The team at UCLA are very professional and helpful. Dr. Aboulhosn has been dealing with my exact condition for a long time and has answered all my questions about my specific case and what to expect with closure.
I have to say, one thing that is very reassuring is how modest he is about being the best of the best (which I think he is). He told me that one thing he’s learned in practice is to not rest on one’s laurels of accomplishment. He takes every patient as a new and unique case and tries to select the exact correct treatment for that patient.
We discussed a number of topics ranging from the anti-platelet therapy he’d want me to do afterwards to possible complications from device closure.
All in all this was a very good conversation and I think that given the alternative to surgical closure I would rather go with the device at this point. If anything goes wrong it can be retrieved and surgery could be performed, but at least this way we can be pretty confident that surgery won’t be needed.
I’ll let you guys know how it goes after the 9th!
gillytech
How are you? We’re anxious to hear how it all went.
Drop us a line!
Seenie from ModSupport
Hey guys, it’s done: SUCCESS!
It turns out that my ASD was actually 2cm, and Dr. Aboulhosn used a 3.7cm Gore Cardioform device to close it. (I specifically made it known that my preference was the cardioform as I believe it’s a superior device). Right after I woke up and was wheeled out to the recovery room he came and told me about it. I felt like giving him a big hug because it was such a big relief to me. He seemed very excited and pleased with how the procedure went! I have to say, the level of professionalism and the atmosphere the staff at UCLA medical create is second to none!
I think I was a particularly interesting patient that day as there were 4 interventional cardiologists in the cath lab, two attending, one resident and one fellow. Then the anesthesiologist, a cardiac anesthesiologist, and a CRNA. Also there were about 4 nurses and techs on my case. In total there were about 11 people in the room! I was definitely in good hands.
As you may have guessed I was put under general anesthesia for the duration of the procedure, it only took about 2.5 hours. I was shockingly not nervous (and I specifically requested no benzodiazepines or any sort of calming drug, so I was fully lucid as I went under) and the staff were really great to chat with as they were prepping me. Then came the anesthetics and I was out like a light. Next thing I know I’m being woken up and I even remember Dr. Aboulhosn helping the nurses transfer me to the gurney. He truly cares a great deal about his profession and his patients.
I noticed right away that I had not one but two punctures in my legs. One on each side. The Dr. told me that they couldn’t get the TEE device positioned properly so he decided to use an ICE (intra cardiac echo) catheter rather than risk damaging my esophagus (good call).
Immediately after I asked for something to eat and had a huge salmon dinner they brought me. I wasn’t nauseous or dizzy or anything. My throat did hurt from the ventilator but I didn’t really care. I just wanted to eat and call/text all my friends and family to let them know how it went.
Post-op notes. So the puncture wounds in my groin area have been sore and sting a little bit but nothing serious at all. I think I had a gram of Tylenol at first but other than that needed no pain management. I did have some strange palpitations whenever I took a deep breath but I was told that’s completely normal. Within 12-24 hours I’ve been able to walk around but they say no heavy lifting or strenuous activity for two weeks. I did have one dizzy spell 24 hours after the procedure but a couple hours on my back and it’s resolved. My anti-platelet regimen is 1 low dose aspirin and plavix daily for 30 days and then aspirin for at least 6 months. After that, no drugs and no physical activity limitation.
Here’s the best part. I feel better than I ever have before. For the first time in my life I have a normal heart. In the days leading up to the procedure I couldn’t walk too long or take stairs. I moved a heavy box and was on my back for hours afterwards. Every heartbeat was a thud in my ears. Just miserable. Now the pounding in my chest is gone and my deep breaths are comfortable. It’s a miracle. Truly! My heart actually feels happy 
In the morning before being discharged I was visited by three of the cardiologists that were on my case. They all checked my heart with their stethoscopes at the same time and all switched positions synchronously, it was actually really funny, they were really excited to hear my heart afterwards. Anyway, the attending physician told me that my heart “sounds like a normal heart.” The fixed split S2 sound was gone! After they left I did tear up for a minute because it really sank in that it’s finally over and I am going to be just a normal guy again. If I had to I would do it again in a… heartbeat.
So, to all you out there who are thinking about getting your ASD checked and fixed, I hope this story gives you a little bit more perspective on what it’s like to go through with it and what to expect. If you can, get to the UCLA Adult Congenital Heart Disease center. They are very passionate about helping people like us. Dr. Aboulhosn is the best of the best… of the best (he’s modest about that but his staff agree with my assessment).
It’s now day 3 and I feel pretty good. Taking advantage of my family helping me and taking some time off work to lay around a bit and take it easy, but still overall feeling better than ever!
Hey feeling better, check out my reply from last week. I would like to add that I started getting palpitations two days ago and checked back in to UCLA where I am currently. They did find some arrhythmia but they say it’s not dangerous. There is consensus for treating with beta blockers until the asd device is better settled in and then see where we’re at. It’s a slog but the only way out is through so I have my head down powering through this stuff. All the best to you guys!
Kevin (@gillytech ) that is just awesome to hear. Your story is going to help so many people down the line feeling anxious about a similar surgery. But what caught my attention was that you are now feeling better than ever, and your heart feels happy! I love it. Sounds like you’re already on a good recovery.
Sorry to hear about the palpitations though, but am glad you were able to get an idea on that. Like you said, getting the ASD device settled in and seeing how things progress sounds like the way to go— but do keep us posted on that !
Also, great that you’ve been taking it easy and have had your family give you a hand. Overall, so happy to have you update us on this.
All the very best Kevin,
Arjuna
@Lead.Intern Yeah overall things are better than they were before. Although I would like to document here that I went into Atrial Flutter two days ago which scared me out of my wits.
I went to my local ER and just before administering a calcium channel blocker to try to put my heart back into sinus rhythm I spontaneously went into proper rhythm on my own. I then visited with the electrophysiologist at UCLA who reviewed my EKG and said that I had Atrial Flutter as well as SVTs (supraventricular tachycardia). He said that this could be the device settling and that I should consider anti-arrhythmatic medications (amiodarone or Multaq). Meanwhile I am on 25mg metoprolol (beta blocker) 2x daily to try to keep me out of atrial flutter. Luckily I was wearing a heart monitor which caught the entire episode. He will review it and give me definitive feedback by the end of the week.
So needless to say it’s one hurdle after another in my recovery. But I’ll tell you right now, even with the new arrhythmias I am BLESSED for having gotten the ASD closed. Anyone out there with symptomatic ASD, do not let the after effects scare you. Atrial arrhythmias are not nearly as dangerous as ventricular ones, and we’re not seeing those in my case, and I don’t think there’s a high risk of dangerous development post-op.
Some good news. I just got cleared by the electrophysiologist to take NAC and d-ribose to potentially help with the palpitations. Yesterday I started 600mg NAC 2x daily and 5-10g of d-ribose 2x daily. Within 15 minutes of the second dose of NAC I noticed a dramatic improvement of virtually everything. I have cut my palpitations by about 90% and energy notably boosted. I am really hoping this is not a fluke and the NAC is key to suppressing the palpitations. That way I can stay off the meds as the side effects are quite scary.
NAC (n-acetyl-l-cystene) is a semi-essential amino acid precursor to cystene. It aids in the production of glutathione in the body. Research it, you’ll be amazed. Unfortunately the FDA approved it as a drug in the 60’s so now they are saying it’s illegal to sell as a supplement. You won’t find it on Amazon, and many stores are sold out. I found a high quality source at thorne.com. I bought a stock-up quantity and I am sure others are too. if you would like to get some, get some now because the FDA are ruthless in clearing the market of this supplement.
D-ribose is a sugar that your cells use to produce ATP. Your body makes it, but supplementing it can be helpful. Dr. Berg recommends it to clear up palpitations so I got some. Can’t hurt and I’m desperate!
Cheers for now all. I hope my data helps others down the line. Dealing with ADSs is not fun, but the miracle of modern medical techniques are enabling people like us to live normal lives. I am extremely grateful.
Hi @Lead.Intern @Modsupport I have an update. So I am now experiencing frequent PVCs and will go into atrial flutter if the PVCs go out of control. I don’t get them at rest, only when standing up, walking around and especially laying down. They are making me miserable! I have been taking extra potassium. Unfortunately I can’t really do any cardio as the PVC/PACs prevent it. I just today got some magnesium glycinate to try. Any other suggestions?
So sorry to hear about that @Gillytech! I did see that @LM26 had PVCs after getting the closure done. Here is the link to that thread… ASA with ASD
@LM26, if you are still around, it would be great to know how things have turned out for you!
I also looked at topics that have the word “PVCs” and “Flutters”.
Here are the links:
PVC: Search results for 'PVC' - Living With Congenital Heart Defects
Flutter: Search results for 'flutter ' - Living With Congenital Heart Defects
@gillytech what have your doctors said about this, and how have you been feeling over the past 2 weeks ? Hopefully it is something that the magnesium is helping to control… please let us know!
Hi - sure. I still get PVCs, some days more than others. My doctor isn’t too worried about it though. It hasn’t restricted me from any activities and I’ve started to figure out common triggers (too much coffee, too little sleep, etc.). Anxiety is another trigger and I found that a series of PVCs would cause me to freak out a little, which likely brought on more PVCs. I know it’s easier said then done (considering it’s your heart beating), but try to find a way to calm yourself if they’re happening frequently. And perhaps my doctor is less worried than some, but my understanding (based on my doctor’s explanation) is that PVCs alone aren’t much cause for concern and shouldn’t restrict activities.
Hope that helps some.
@LM26 Thanks for sharing your experience, and yes! It does help to get your input. My PACs have been slowly abating now 6 months out. Similarly, doc isn’t concerned at all.
@Lead.Intern I had my 6-month follow up today. Good news! My echo looks good, everything in the right place. Right atrium is getting smaller (not normal yet but going in the right direction). PVC/PAC abating. Still present and I can feel them every day but apparently this will continue to get better over time. Blood pressure and oxygen look good. He says that he would like to see me next year but otherwise just get back to normal life.
The only thing Dr. Aboulhosen told me to avoid was very heavy weightlifting. He says it is possible that my device may become damaged if my systolic pressure goes too high. Everything else is completely fine 
What an adventure. I hope my story helps someone who is in the same position I was in 8 months ago. It’s scary to find out you have a serious heart condition in your mid-30s.
For some more discussion I have another topic I was writing on here: https://forum.atrialseptaldefectsupport.org/t/device-failure-3-months-after-closure