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Living With Congenital Heart Defects by Ben's Friends

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Living With Congenital Heart Defects

Open Heart Surgery Experience

I talked to my doctor today (or one of them since I've seen quite a few lately), and it looks like I will have to go through an open heart surgery, so I've been trying to read as much as I can about it, but I was thinking, that in case I've missed anything, you guys can help me by sharing your experience with me.

A little bit of background information: I am 26 years old and up until very recently I thought I was absolutely healthy. I have never experienced any ASD symptoms, and, honestly, I still don't. I moved to the USA from Russia about 4 years ago, and I immediately started thinking about joining the military. Earlier this year I finally decided that I should either do it now or I will never get to do it - and contacted a US Army recruiter. Everything was going great until the physical - I passed everything (or almost everything), but the doctor there heard a heart murmur and sent me to Walter Reed Medical Center to have my echocardiogram done. That's where they first told me that not only do I have an ASD, but it also disqualifies me from the military service. I felt like my whole world collapsed, and I also kept wondering how I could run 3-4 miles at a time in a 90 degree weather or do pretty intense workouts on a regular basis and not feel a thing. I learned to accept it, and went to Johns Hopkins Hospital in order to figure out what to do next. They did another echo, and referred me to a specialist who performs cardiac catheterization. He said that in order to figure out the best treatment I should get a TEE done, which I did earlier this week (Tuesday). The results were quite shocking, since it turns out that I actually have multiple ASDs. Unfortunately, they cannot close all of them without an open heart surgery, but the thought of having to go through it is pretty scary.

On top of that, my husband seems to be more worried than I am. He has heard someone say that they have never fully recovered from a heart surgery - an they can still feel a tiny bit of pain when they cough, and he is afraid that that's going to happen to me. So, I thought I'd ask people who have already gone through a similar surgery how it went and how they are feeling right now - maybe it'll help both of us :)

Thanks in advance! :)

Hi Rukram,
You really got hit hard with the TEE report. Open heart surgery (OHS) is more complicated than percutaneous closure of any ASD. You are very right about that. Several on site have had OHS so I moved your comment to feature it so others may respond. Though it may not seem like it 26 is a better age to go through any surgery but disappointing for you to not get into the service. Have they discussed surgery date with you? It is not unusual for our loved ones and ourselves to be concerned about our condition. I myself was very active as a younger adult including running and never suspected that I had an ASD. Recovery from OHS is more complicated and it would be good to get first hand experiences from others who have been through that. Take care and hope others with OHS will give you more info. Linda

I did ASD closure (hole diameter 2.7 cm) at age 28 in 2009. Now still fine. Don’t worry. You will get well soon. We r always be with u. EP from Malaysia.

Thank you, Linda! I scheduled the surgery today for November 13th. I am going to meet with the surgeon this coming Friday, and I am taking my husband with me, so he can get more information as well.

Linda Arsenault Pitzo said:

Hi Rukram,
You really got hit hard with the TEE report. Open heart surgery (OHS) is more complicated than percutaneous closure of any ASD. You are very right about that. Several on site have had OHS so I moved your comment to feature it so others may respond. Though it may not seem like it 26 is a better age to go through any surgery but disappointing for you to not get into the service. Have they discussed surgery date with you? It is not unusual for our loved ones and ourselves to be concerned about our condition. I myself was very active as a younger adult including running and never suspected that I had an ASD. Recovery from OHS is more complicated and it would be good to get first hand experiences from others who have been through that. Take care and hope others with OHS will give you more info. Linda

Thank you, EP! It's great to hear that you are fine after your surgery!

Mine are actually pretty small: one is 8-9mm, and I have another fenestrated asd, diameter of which is 1.2 cm. The problem is the location of the first one.

epng said:

I did ASD closure (hole diameter 2.7 cm) at age 28 in 2009. Now still fine. Don't worry. You will get well soon. We r always be with u. EP from Malaysia.

Hello ,

Incase your not symptomatic , please try to have second ,third opinion , recently I got to know I have an ASD measuring 15mm , I never observed any symptom , As my PA pressure ,heart rate and BP is pretty normal my doctors are saying just keep watch and do not operate unless you have severe symptoms as I have seen many case studies which shows asymptomatic ASD can be left untreated . Even I was planning device closure on 21st October ,however now I have decided to adopt healthy lifestyle and see the PA pressure after 6 months and then decide

Thank you for your reply!

The doctors told me that I have an option not to proceed with the surgery now. Actually, all of them, including the military doctor who first diagnosed me have been saying that in my case it's not an emergency, and I can wait months or even years. However, I do have a pretty significant shunt (Qp/Qs 2.2) and my right atrium and the ventricle are both slightly dilated. And, as it turned out, I have multiple defects, not just one. As far as I know, the younger you are when you go through the surgery, the better the outcome will be. So, I decided to go ahead and have it done now. My surgery is scheduled for Nov.13th. I decided to go with the minimally invasive surgery.

dreams_rashmi said:

Hello ,

Incase your not symptomatic , please try to have second ,third opinion , recently I got to know I have an ASD measuring 15mm , I never observed any symptom , As my PA pressure ,heart rate and BP is pretty normal my doctors are saying just keep watch and do not operate unless you have severe symptoms as I have seen many case studies which shows asymptomatic ASD can be left untreated . Even I was planning device closure on 21st October ,however now I have decided to adopt healthy lifestyle and see the PA pressure after 6 months and then decide

I had OHS 6 months ago. It is not an easy surgery but if you need to have it there is alot to know before the surgery.

This blog has some great tips: http://www.achaheart.org/home/blog/entryid/13/open-heart-surgery-preparation-tips.aspx

I was in the hospital for about 8 days, home recovering 4 weeks, then went back to work part-time for 4 weeks and now I am working full time again.

It is a roller coaster but I had amazing doctors and nurses and got through it.

Good luck with your surgery!

Jennifer

Thank you, Jennifer! I underwent an asd closure via right thoracotomy on Friday, and I am it the hospital now. The doctors hope to discharge me either on Monday or on Tuesday.

Hi Rakram,
Hope u are doing well post surgery . Glad Jennifer gave you some info. Please keep in touch. Linda

Thank you, Linda. The doctors say that I’m doing very well, although it’s still painful of course. But I’ll get through it :slight_smile:

Rukram, good to hear that you've cleared the big hurdle, and that you are on the road to recovery. All the best!

Seenie

Thank you!

Modsupport said:

Rukram, good to hear that you've cleared the big hurdle, and that you are on the road to recovery. All the best!

Seenie

Ok, so, I guess, I should be the one to conclude this discussion, so I'll share how the surgery went (in case anyone needs this information in future) :)

I was admitted to the hospital (Johns Hopkins) early in the morning on Friday, November 13th. By about 6-6:30 am I was absolutely ready: my IV was in my arm, I had all my paperwork and consent forms signed etc. I know that they did a TEE right before and right after the surgery: before the surgery they wanted to make sure that they were doing everything right, and after the surgery they wanted to make sure that there was no residual shunting (and there wasn't, so they did a great job). I don't remember any of that, although I remember arriving at the OR, and I think nurses and staff there were talking to me about something that I thought was very funny (I can remember smiling and laughing). I have no idea what exactly they were saying (great job, anesthesia team! :)).

And then, of course, the next thing I remember was waking up in the ICU with a breathing tube in my throat. The doctors and the nurses all say that it was pretty impressive that I only had it in for 2 hours after the surgery, and then I was able to breath on my own. They say that usually they keep it in for at least 4-5 hours. I think people who have it for that long, or even longer, are true heroes, because that tube really bothered me. A LOT.

My husband, who stayed in the ICU with me, says that at that point I looked like Frankenstein :) I had a breathing tube in, a drain coming out of my neck, and a couple of drains coming out of the right side of my upper-body, a catheter, IVs etc. Most of people who go through an open heart surgery may actually look different - I went through a minimally invasive one - a right mini-thoracotomy which means that they gained heart access by going through the incision between the ribs, and the heart-lung bypass machine was connected to me through a small incision near groin area. My surgeon told me beforehand that this type of incision is more painful because they have to cut through more muscle and nerves compared to a sternotomy, but I should be able to recover from it much faster.

So, when I woke up in the ICU at about 1:30 pm, a realized that he did not lie at least about it being very painful. I could also feel my heart pounding - I almost thought it would jump out of my chest and dance on me :) And once they had the breathing tube out, I understood that the tube was not my biggest problem: I was sore everywhere and very thirsty. Just taking a breath hurt like crazy. Once the nurses figured out that I could swallow with no problem, they started giving me pain medicine and water.

That first night in the ICU was the hardest time of my whole hospital stay. The care from the doctors, nurses and technicians was amazing though - I am very thankful for that. In the morning I was a lot better, and was even able to get out of bed and move into the chair, and walk around in the room just a little bit. The care team was happy with my progress too, and I think by about 10:00 am (or so) I was out of the ICU and sent to the progressive care unit.

From that point I started walking around the hospital floor at least 2-3 times a day, started eating (even though I was not hungry at all while I was there, and for the first week or so at home), and gradually started getting disconnected from drains and IVs. By Monday (3rd day after the surgery) I was disconnected from everything, and the only thing they were still monitoring was my heart rate. They actually told me later that they were thinking about discharging me on Monday, but decided to make sure that I was OK, and kept me for an extra night.

On Tuesday morning my surgeon stopped by and checked on me, and said "You're a strong woman, you're going home today" :) I actually don't even know how many times they told me that I was "a real trooper" because they see big men cry like little babies after surgeries like that, but I didn't make a peep :)

It has been about 3 weeks after the surgery now. Despite all the pain, I am very happy that I went with the minimally invasive approach: they didn't have to break my breastbone or any other bones - and they didn't have to wire them back, I got off the pain killers about a week after being discharged from the hospital, I started driving 2 weeks after the surgery, I am able to pick up things (obviously, not something very heavy) - and being able to use my arms is definitely helpful, I am healing very quickly, and I should be able to go back to work in just a couple of weeks.

I haven't noticed much of a change compared to before the surgery yet. The only thing is that my blood pressure, while it was not extremely high, used to be kind of on a higher end (about 128/85). Now it's much lower (last time I checked, it was 106/65).

I am very thankful to the surgeon, who performed the procedure, Dr.Vricella, and to everybody who assisted him and participated in my care. I don't know if I'll be able to thank them enough.

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Hi Rukram,
Great info and glad you are doing ok. You really ar a “trooper”!
Take care, Linda

That was a great story on your ASD surgery. Thankfully both of us had our surgeries done in world renowned hospitals. I also got denied from military service because of my ASD (it was 4.5 cm). I was able to choose between OHS or having the surgery done through a tube down my throat + through my leg.

I also had the experience of people saying I was talking funny. I think it’s the drug they give you before surgery so you don’t get scared and panic.

The tube that was down my throat ripped my throat up and was the worst pain I’ve ever felt to this day. It’s good to hear about you doing well after surgery. This site must help put a lot of people at ease before their surgeries and show that they can live a normal life with an ASD.

You should read my story if you would like.

Andrew, it’s great that you found this thread and decided to revive it. I hope the people who responded before to Rukram will chime in again. They should (in theory) get a notification saying that you responded on the thread. I hope that they will come back and give us a :wave: wave.

If you’ve received this message in your email inbox, and you haven’t made it back to our new platform site, logging back in is easy!

  1. Go to atrialseptaldefectsupport.org (same as before)
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Hope to see you back here soon for a reunion, everyone!

Seenie from Moderator Support

Hi Andrew! I read your story, and wow, it’s impressive!
I also feel that I owe everyone here an update. It has been 1 year and 10 months since my surgery, and I have to say that my story was definitely a success. Despite being initially disqualified from the military service, I managed to get a medical waiver for my ASD - all thanks to my recruiter’s help - and get in the Army Reserve. I finished my basic training in May, and I am still going through AIT (tech school).

Based on your story, you have gone through many more difficulties than I have. But you have not given up on yourself and kept fighting, and you have my respect for that.

Rukram! It’s so great to hear from you, and even better that you are doing well.

Thanks for dropping by! Don’t leave it so long next time. :hugs:

Seenie

Thank you very much for the support. It’s great to see you made it in the Reserves. Best of luck to you.

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