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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

Question re:OHS closure for over 40 yr old

Hi Everyone.

I was recently diagnosed by tee with an 8mm sinus venosus with an anomalous vein. My cardiologist is not knowledgeable on this matter and has referred me to Congenital Heart Defect Specialist. So here I sit with a diagnosis and the internet to provide me with further information. I keep reading rather negative reports on OHS repair of ASD after 40. I am 45. Who would have ever considered 45 to be old… lol! Wondering if any of you out there have faced this type of repair? Were you told there would be a higher chance of complications? How are you doing after repair? Thank you in advance!

Abigail - believe you are feeling what everyone does when they get the diagnosis…surprise and trepidation, at least that is what I experienced. I am 68, was 67 when I found out there was a hole in my heart…could not believe it! It was found after going to the ER with a massive AFIB attack (first for me), thought my chest was going to explode. Got that under control but subsequent ECG showed the hole (ASD). Had no symptoms that one usually has with an ASD. Played lots of sports up through my college years, had a career in the Navy and since then travelled globally working for an engineering company.
Cardiologist that God brought me, I believe anyway, ran several tests; TEE, stress, and a CATH. Got all the results showing the hole (kinda large) was very near the aorta. 3 options; do nothing, OHS, or implant closure by CATH. On follow up office visit with Doc he told me that after reviewing my test data again he was pretty confident the CATH closure was doable. He said there was no rush and come back in a few weeks to discuss. Was definitely on the fence about doing the closure or not. After the Cardiologist told me I have suffered damage to the right side of my heart and there was probability that would worsen over time, I decided to get the closure done.
Must say that I have a great cardiologist that has done numerous ASD closures. But, with the proximity to the aorta, he stacked the operating room deck with one of his partners and a pediatric cardiologist. Really great anesthesiologist and team as well.
I also am fortunate to live near one of the top rated heart hospitals in the country so, all in all, felt that I was pretty well set up.
Had the ASD closed using the Amplatzer device via CATH. Doc used TEE and verified hole size using balloon. Procedure went very well and was out of the hospital the next day. Throat was extremely sore for several days from the TEE.
Got a good nights sleep the 1st day home and other than a sore throat, felt great the next day…went out to lunch with my wife and hit some putts at the golf course. In the hospital they put me on Plavix, however, the Doc thought I should change to Eliquis…so, after having such a great day at home I started the Eliquis and had a very negative experience…thought about going to the ER it was that bad. Doc changed me back to Plavix and all good so far. Have read on this site with some folks having a bad experience with Plavix so I guess everyone is different.
Next week marks 6 months since the closure. Going for my 6 month checkup and ECG. Am anticipating a positive visit.
Just want to mention that prior to all this, the only pills I took were vitamins, omegas and an anti-inflammatory like Aleve for joint pain. Now I take Plavix, Motoporol, and low dose aspirin. I find that I cannot take multi vitamin supplements as they, for me anyway, interact negatively with the heart meds. So, if you are feeling fine and all of a sudden feel weird, think about what you ate or a new vitamin or med you have taken as that may be the cause. Sometimes the Docs prescribe things that theoretically should be Ok but they wind up not being OK for you.
Bottom line; 6 months in am doing well, believe the closure was successful, have more energy and pretty positive about the future.
All the Best to you.
JJ

Yes JJ, I think you are right about the surprise and trepidation (which resembles something closer abject fear). Probably in part due to the lack of information I have on the matter at this point. My understanding this far is that I have been referred to an excellent hospital that leads in research of congenital heart defects. Wonderful news, but would be far better if I had the opportunity to discuss my situation with one of the cardiologists. Fear runs rampant in ones mind when left to its own devices and Dr. Google.
Thank you very much for sharing your story. I am thrilled to hear that your repair was successful and you are feeling well! I wish that I was able to have patch catheterization but the hospital that uncovered my defect said it would require OHS surgery.
I gather from what you shared finding an experienced cardiologist is key to success. Wish me luck that the team at Peter Munk are as exceptional as suggested.

Thank you again!!

HI AbIgail, I was detected at age 46 and doctors informed me it was urgent to do it immediately. The procedure was smooth and easy and recovery was smooth. But side effects remain. These are a) I am unable to sleep on my left (heart) side, and b) breathlessness. Till recently I had to cope with weird feelings in the heart as I thought I could feel the device or some kind of loose screw (quite funny now as I write it).
I must have other symptoms but I dont relate them to the procedure per se.

Do ask them to test you for nickel allergies before they do the procedure just to be clear that it is ok to use the device.

On yes, I do get tired easily these days and feel it is best to be quiet at times due to breathlessness.

You might not experience all this as each case is unique and it is not necessary to have any side effects to live with.

Regards
Ashish

Thanks for your response. Sorry to hear that you still suffer from breathlessness and it must be annoying to say the least not be able to sleep on the left side (I hate anything that disrupts my sleep). How long since you had your repair?
Unfortunately I will not be able to have a device closure and require open heart surgery based on the location of my hole.

What hospitals have all of you had your repairs at?

MJM I have not had my repair yet. Where did you have yours? What type of repair?

It will be two years this August since my surgery. I wish you all the best for your surgery. Keep us posted

Thank you Ashishm9 !

Sorry to reply so late. I had my ASD repair with the amplatzer at St. Joes in Ypsilanti Michigan & had a great surgeon. Have ou had your surgery yet?

Hi Abigail, no we’re not old, we’re in our prime! I’m 50, last Nov I was diagnosed with a large sinus venosus ASD and a pulmonary vein inserting to the right not left, so had a big shunt and a very large right side of heart. Had OHS 3.5 wks ago.

Your fear is totally understandable & I had it too, OHS is terrifying, but you will get through it. Ask away with questions here, people helped me a lot.

Here are some things that helped me

A. Serenity prayer principle (accept what you can’t change, know the difference from what you can change). My fear decreased when I realised I had to “start” from reality (I’ve got a defect) and stop wishing it wasn’t so. Sounds easy, but it wasn’t at first. I felt sorry for myself, and i began to let that “define” me. When I finally accepted the defect, the internal debate changed to “what do you want to do about it?”. At this point, OHS was clearly better than leaving the defect in place, so I gained some sense of “choice” (based in reality) & this helped the fear be in proportion to the benefits.

B. Physically, I tried to prepare my body, but gently - did more yoga to de-stress and strengthen muscles without straining heart, did tiny bits of walk-jog within Doc’s heart rate advice (he said <150bpm for me), took my vitamins.

C. I got organised. From advice here, I bought lots of pillows, borrowed a recliner (tho that doesn’t work for me), figured out family sleeping arrangements to be in bed alone initially, got eye mask & ear plugs for hospital, bought post surgery bras, etc. In reality, little of this was high priority (except ear plugs, buy several pairs, hospitals are noisy!) but it gave me something to do & a sense I’d done something to help myself.

D. Trust the Docs, as far as seems appropriate. So long as you have a good specialist congenital heart defect Doc/team, they know what they’re doing and have done it many times. It’s routine for them, even if it’s ‘major’ for us.

E. Think in advance about what will matter to you. For me, I wish I’d discussed pain relief in advance, to better balance managing pain with being scared of getting addicted. A few times, I haven’t take enough pain meds and have gotten overwhelmed. I learned to get good relationships with the nurses and stand my ground - I needed pain meds at 5am to be able to get enough sleep, and had to persist to be given them outside of normal medication rounds - it made a great difference to my ability to rest.

If it’d be useful for you to hear more about an OHS & what it feels like after, feel free to add further Qs, I’m not sure if I’ve focused on what you raised or not :slight_smile:

Just re-read Abigail’s questions (and realised this reply may be very late for Abigail, but in case it helps others).

Complications: I was told that having had a defect for several decades might mean several cardiac issues might have been created over time, and that OHS would solve some, but chance of others later. So not complications of surgery but of having long-standing defect.

Age: I was told “better to have OHS at 50, than at 60 or 70”. So nothing too bad was said here.

I did speak to a few patients who were coming back several years after OHS, for something different (eg valve worn out, infection) and 2nd surgeon did make it very clear this might not be the only surgery.

The only complication I had, was one that seems quite expected. The pacing of my heart rhythm went a bit wonky. I had very fast heart rate (150bpm) and non-sinus rhythm that lasted 30 hrs, the meds didn’t improve so they sedated me and did Cardio Version - quick shock to heart to reset the rhythm. I felt fine after that.

Recovery is hard work - apparently a 50 yr old “feels the recovery worse”, because we are still relatively active (vs. a 70 yr old who may already be getting used to a slower pace of life). This is proving true for me, I’m so slow at everything and it frustrates me enormously.

Final “complication “ is that I wasn’t aware beforehand that I’d need to go on Warfarin for a few months, and this is a right pain and also a little scary. But it makes sense to avoid clots sticking to the patches & stitches on my heart, so that’s life, and after 3m, it will change into Asprin (for life).