Anyone here have open heart surgery?

[LuLuO]

I have to have a atrial septal defect (hole) repaird. Also, one of my pulmonary veins is going into my right atrium instead of my left so that needs to be corrected. I am looking at having open heart surgery, likely in June. Just wondering if anyone would care to share recovery stories, what to expect, things you wish you knew.

Also, any tips on how to prepare my DD3 and DS2 for this would be appreciated.

 

[paintnolish]

My sister had a hole in her heart repaired a few years ago. She was about 22 at the time. The surgery took around 5 hours. They did it through several small incisions. She was pretty miserable when she woke up in the ICU. It was so sad, but then again, she's my baby sister, so I felt so bad for her! She also had a decent sized incision in her thigh from the heart/lung bypass. She was in the ICU less than a day, and then spent another day in a regular room. I was really suprised at how quickly they let her out! She had some pain but the things that bothered her the most were that bras were uncomfortable and that she couldn't wash her own hair- my mom had to help her for a while. GL! I know it's scary, but you'll make a quick recovery!

 

[The Mystery Machine]

You are in good company here then.

We just found out a couple of days ago my 20yodd has to have open heart surgery as well. We are still in some shock here in this household.

Now she was born with a heart defect and had surgery then, however her pulmonary valve is failing. In addition she has some left ventricle damage.

Avoid any dental work now, esp. cleanings. Ask about premeds prior to dental work. Minor thing but HUGE. Now granted my dd has valve issues but anyway, talk to them and have it written in your chart if you need premeds. HUGE snafu with my dd and I am still steamed about it.

There are "guidelines" that some doctors will QUOTE to you which your cardiologist may disagree with. (Off my soapbox there.)

Get a flu shot. My dd has had the flu several times now.She never got the flu shot. Now her left ventricle is damaged. Not sure the exact cause of course, but getting the flu is not good for your heart.

Are you getting any presurgery stuff done? My dd is getting a heart catherization on the 27th.

As far as your little ones, just tell them mom is getting her heart fixed by wonderful surgeons. I would not tell them until right before you go into the hospital since they are so little. Like maybe a few days before or something.

 

[LuLuO]

The Mystery Machine: My issue is also a birth defect. Never knew I had it until a few weeks ago. I had a cath done yesterday to rule out any other abnormalaties. I am stilll looking for a surgeon and am waiting for a call back for an appointment. The surgeons my cardiologist suggested are not affiliated with hospitals that I am comfortable with so I am looking elsewhere.

Many prayers and good thoughts for you and your DD.

 

[The Mystery Machine]

The Mystery Machine: My issue is also a birth defect. Never knew I had it until a few weeks ago. I had a cath done yesterday to rule out any other abnormalaties. I am stilll looking for a surgeon and am waiting for a call back for an appointment. The surgeons my cardiologist suggested are not affiliated with hospitals that I am comfortable with so I am looking elsewhere.

Many prayers and good thoughts for you and your DD.

I see you are in MO. Can you go to big Barnes? That is where we are getting seen at.

My dd just entered a group of doctors there that deal with heart defects. She was previously at St. Louis Children's but now she is 20 and her cardiologist moved on, I had to make a change.

http://www.barnesjewish.org/heart-vascular/congenital-heart-disease

So how was the cath? What can we expect? They tell me that dd has to stay off her feet for a week and cannot do stairs, lifting, etc?

 

[Disney Doll]

I had an ASD repair done in 1969 so I am no help to you about how it's done in "modern" times but I wish you luck!

 

[OceanAnnie]

I just wanted to say I hope everything goes well and that you have a speedy recovery. I will keep you in my thoughts and prayers.

 

[manning]

I had a triple by-pass last year. You will be surprised how fast they will have you up and walking, in a couple of days. Expect about a month after the operation you will be in cardio rehab for 12 weeks. That's exercising for 30 minutes 3 times a week. As you are exercising you will wear a monitor.

I've had two major operations in my life. It amazes me how fast the anethesia works. The first time I said "do you want me to count....." The second time I said "boy this table is......." Fell asleep in mid sentence. Next thing I knew they were bringing me out of it. I swear I thought I was on the table only five minutes.

You'll do fine!!

 

[LuLuO]

I see you are in MO. Can you go to big Barnes? That is where we are getting seen at.

My dd just entered a group of doctors there that deal with heart defects. She was previously at St. Louis Children's but now she is 20 and her cardiologist moved on, I had to make a change.

http://www.barnesjewish.org/heart-vascular/congenital-heart-disease

So how was the cath? What can we expect? They tell me that dd has to stay off her feet for a week and cannot do stairs, lifting, etc?

Yes, I'm shooting for Barnes for sure. Thank you for that link. I am trying to get an appointment with Dr. Moon. But have only made one call today. Wasn't sure where to start so I just called the 'find a doctor' number. When Dr. Moon's office calls back I willl ask about the Congenital Heart Defect Group.

I had my cath done at St. Josephs West in Lake St. Louis. The cath wasn't bad at all. My leg at the insertion site is sore. I was awake for the procedure. I am taking it easy for a week. Not bedrest or anything but not doing my normal routine either. No lifting over 10 pounds. No driving for 48 hours. No shower for 24 hours. They said I could do stairs if necessary, but lead with my "good" leg.

The hardest part was laying still for 3 hours afterward. Why are hospital beds so darn uncomfortable? I got to eat about an hour after I came out of the procedure (laying down though so that was difficult) but they got me a soda right away (again drinking laying down).

 

[The Mystery Machine]

Yes, I'm shooting for Barnes for sure. Thank you for that link. I am trying to get an appointment with Dr. Moon. But have only made one call today. Wasn't sure where to start so I just called the 'find a doctor' number. When Dr. Moon's office calls back I willl ask about the Congenital Heart Defect Group.

I had my cath done at St. Josephs West in Lake St. Louis. The cath wasn't bad at all. My leg at the insertion site is sore. I was awake for the procedure. I am taking it easy for a week. Not bedrest or anything but not doing my normal routine either. No lifting over 10 pounds. No driving for 48 hours. No shower for 24 hours. They said I could do stairs if necessary, but lead with my "good" leg.

The hardest part was laying still for 3 hours afterward. Why are hospital beds so darn uncomfortable? I got to eat about an hour after I came out of the procedure (laying down though so that was difficult) but they got me a soda right away (again drinking laying down).

Thanks for the info. Good luck to you.

 

[Alicia87]

My DD20 has had two open heart surgeries, first at 7 months and second at 14 years. She was born with Tetrology of Fallot and a Ventricular Septal Defect. Her surgery when she was 14 was to replace her pulmonary valve (just like Mystery Machine's DD). Thankfully next time they replace her valve, it will be done via cathetar.....no more open heart surgeries for us!

She came out of surgery off the vent and was sitting up in ICU when we went in to visit her for the first time. Only issue she had was she was awake for 29 straight hours after the surgery because she had a reaction to the anesthesia....can I just say....she talked the entire 29 hours!!! Absolutely wore me out! She was out of the hospital in four days and back to school 7 days after surgery and back to cheering and tumbling 6 weeks post-op. She never took one single prescribed pain pill after she left the hospital.

My DD told my uncle that it was a "piece of cake" when he was about to have his. He asked her if she was afraid to do it again knowing what she knows now and she says absolutely not.

My prayers are with you and if you have any questions at all, please feel free to ask!!

 

[The Mystery Machine]

My DD20 has had two open heart surgeries, first at 7 months and second at 14 years. She was born with Tetrology of Fallot and a Ventricular Septal Defect. Her surgery when she was 14 was to replace her pulmonary valve (just like Mystery Machine's DD). Thankfully next time they replace her valve, it will be done via cathetar.....no more open heart surgeries for us!

She came out of surgery off the vent and was sitting up in ICU when we went in to visit her for the first time. Only issue she had was she was awake for 29 straight hours after the surgery because she had a reaction to the anesthesia....can I just say....she talked the entire 29 hours!!! Absolutely wore me out! She was out of the hospital in four days and back to school 7 days after surgery and back to cheering and tumbling 6 weeks post-op. She never took one single prescribed pain pill after she left the hospital.

My DD told my uncle that it was a "piece of cake" when he was about to have his. He asked her if she was afraid to do it again knowing what she knows now and she says absolutely not.

My prayers are with you and if you have any questions at all, please feel free to ask!!

My dd has TOF as well. Good to hear your story.

Now my dd has had some weakening in her left ventricle which is unrealted to the TOF. That is not good. We will know more once she gets her cath. He thinks it was probably a viral attack.

After that she is going to get a contrast MRI and a stress test on June 7th and then we will determine when she should get the surgery.

She is just tired all the time and keeping up in college in the dorms is hard for her.

Thanks for posting this topic OP.

 

[LuLuO]

It is good to be able to come together even if it is under less than ideal circumstances.

 

[smhogar]

I had my ASD repair by Open Heart Surgery in Oct 2002 at 33. Before the surgery, I had to have a TEE and a heart cath. My dr would not let me go back to work for 12 weeks and I did 10 weeks of a heart rehab. Spent one day in the CCU and then on a monitored heart floor. Came home 3 days after surgery. Nurse came by the house every couple of days.

Make sure you follow the drs instructions. No lifting. Make sure you walk.

You will be ok.

PM with any questions.

 

[Alicia87]

My dd has TOF as well. Good to hear your story.

Now my dd has had some weakening in her left ventricle which is unrealted to the TOF. That is not good. We will know more once she gets her cath. He thinks it was probably a viral attack.

After that she is going to get a contrast MRI and a stress test on June 7th and then we will determine when she should get the surgery.

She is just tired all the time and keeping up in college in the dorms is hard for her.

Thanks for posting this topic OP.

That's exactly why DD had her second surgery at 14. DD's left ventricle started showing some enlargement, but her cardiologist told us it was completely normal with ToF. Isn't it funny how different doctors have different opinions? Anyway, his recommendation was to insert a cadaver valve BEFORE there was any significant damage to the left ventricle that could not be reversed. He explained it to her as having a 300,000 mile tune up.

DD has a cardiac MRI scheduled for June 6th. She has mentioned a few times in the past couple weeks that she gets winded easily and is unusually tired. I have a feeling the MRI may show a change. Thankfully she still doctors at Children's Hospital and will for the rest of her life. Unfortunately, this year will be her last year with the cardiologist she has had since birth. She's a little nervous about moving on to another cardiologist. She will still be seeing a cardiologist at Children's, but will be an adult cardiologist who specializes in Congenital Heart Defects.

If your DD would be interested in "talking" to my DD via FB, etc., feel free to PM me and I'll give you the information for contact. My DD is getting involved with the AHA and is supposed to have some speaking engagements with younger children at a later time this year. She doesn't have any contact with fellow CHD survivors and am sure she would love to have a cyber buddy.

 

[The Mystery Machine]

That's exactly why DD had her second surgery at 14. DD's left ventricle started showing some enlargement, but her cardiologist told us it was completely normal with ToF. Isn't it funny how different doctors have different opinions?

Anyway, his recommendation was to insert a cadaver valve BEFORE there was any significant damage to the left ventricle that could not be reversed. He explained it to her as having a 300,000 mile tune up.

DD has a cardiac MRI scheduled for June 6th. She has mentioned a few times in the past couple weeks that she gets winded easily and is unusually tired. I have a feeling the MRI may show a change. Thankfully she still doctors at Children's Hospital and will for the rest of her life. Unfortunately, this year will be her last year with the cardiologist she has had since birth. She's a little nervous about moving on to another cardiologist. She will still be seeing a cardiologist at Children's, but will be an adult cardiologist who specializes in Congenital Heart Defects.

If your DD would be interested in "talking" to my DD via FB, etc., feel free to PM me and I'll give you the information for contact. My DD is getting involved with the AHA and is supposed to have some speaking engagements with younger children at a later time this year. She doesn't have any contact with fellow CHD survivors and am sure she would love to have a cyber buddy.

They think my dd's left ventricle is damaged from either a viral or bacterial infection. It is not working correctly, he thinks. We will know more after the 27th when she gets the cath. She does have damage already.

We have made the change over with this cardiologist to the adult congenitial group. DD's children's cardiologist left so I made an appointment while she was in college for when she came right back because of her complaints of being so tired.

Good thing I did. Frankly I was not expecting the doctor to say that she needed a valve job. So I was pretty shocked.

You know, I probably should have switched her sooner. Now I feel bad for not getting her a check up last summer however she was so busy.

When she gets up I will talk with her about your dd.

 

[Alicia87]

They think my dd's left ventricle is damaged from either a viral or bacterial infection. It is not working correctly, he thinks. We will know more after the 27th when she gets the cath. She does have damage already.

We have made the change over with this cardiologist to the adult congenitial group. DD's children's cardiologist left so I made an appointment while she was in college for when she came right back because of her complaints of being so tired.

Good thing I did. Frankly I was not expecting the doctor to say that she needed a valve job. So I was pretty shocked.

You know, I probably should have switched her sooner. Now I feel bad for not getting her a check up last summer however she was so busy.

When she gets up I will talk with her about your dd.

Don't be so hard on yourself. We had absolutely no idea that something like that was even possible, it had never been mentioned before. Before her discharge, they did an ultrasound and her ventricle had already gone back to its original size. I'm so thankful for our cardiologist and Children's Hospital!

Our visit with the cardio in July will definitely be bittersweet...we've been with him for 20 years. I hope she is referred to someone she has a good relationship with.

 

[The Mystery Machine]

Don't be so hard on yourself. We had absolutely no idea that something like that was even possible, it had never been mentioned before. Before her discharge, they did an ultrasound and her ventricle had already gone back to its original size. I'm so thankful for our cardiologist and Children's Hospital!

Our visit with the cardio in July will definitely be bittersweet...we've been with him for 20 years. I hope she is referred to someone she has a good relationship with.

Thanks.

2 yrs ago when we did see the Ped Card she did mention a valve replacement to dd but that was it. She did not sit down and say, well you are going to need one eventually. I really did not pick up on that.

She had a contrast MRI then and so when she gets one on the 7th they well really be able to see the regurgitation of her valve and compare.

Your story is very hopeful. Thanks for sharing, I appreciate it.

Does your dd get flu shots and premeds for dentist cleanings?

I went round and round with her PCP with her dental appt. in Dec. I called for premeds and they read me the guidelines. Those DAMN guidelines. Anyway, so I call my PED hosptial, however my card has left so they shift me to someone else who says, she does not need premeds as I am reading this from her chart. Sounds good right?

Well at her recent appt. the card doctors stood there and said it is clearly written in her chart she needs premeds. You can imagine I am still pissed about that. Learned a valuble lesson that day. Ask for FAX confirmation or I want the doctor to confirm.

I mean it is something so small to discuss however as you know can have dire consequences.

 

[Alicia87]

Thanks.

2 yrs ago when we did see the Ped Card she did mention a valve replacement to dd but that was it. She did not sit down and say, well you are going to need one eventually. I really did not pick up on that.

She had a contrast MRI then and so when she gets one on the 7th they well really be able to see the regurgitation of her valve and compare.

Your story is very hopeful. Thanks for sharing, I appreciate it.

Does your dd get flu shots and premeds for dentist cleanings?

I went round and round with her PCP with her dental appt. in Dec. I called for premeds and they read me the guidelines. Those DAMN guidelines. Anyway, so I call my PED hosptial, however my card has left so they shift me to someone else who says, she does not need premeds as I am reading this from her chart. Sounds good right?

Well at her recent appt. the card doctors stood there and said it is clearly written in her chart she needs premeds. You can imagine I am still pissed about that. Learned a valuble lesson that day. Ask for FAX confirmation or I want the doctor to confirm.

I mean it is something so small to discuss however as you know can have dire consequences.

Our cardiologist had never mentioned having a valve replacement, so it was quite a shock for us.

I'm glad I could be of some help. It's so hard not having anyone to talk to who "understands" what we as parents of a CHD child goes through.

DD's cardiologist has never suggested she get a flu shot. Her biggest battle is sinus infections.

DD's last dentist tried to tell us she didn't need to be pre-medicated for her routine cleanings. Of course, we medicated her anyway. Needless to say, he's no longer her dentist. If the dentist isn't up to date regarding pre-medicating patients with heart defects/disease, I don't want him touching my daughter.

 

[The Mystery Machine]

Our cardiologist had never mentioned having a valve replacement, so it was quite a shock for us.

I'm glad I could be of some help. It's so hard not having anyone to talk to who "understands" what we as parents of a CHD child goes through.

DD's cardiologist has never suggested she get a flu shot. Her biggest battle is sinus infections.

DD's last dentist tried to tell us she didn't need to be pre-medicated for her routine cleanings. Of course, we medicated her anyway. Needless to say, he's no longer her dentist. If the dentist isn't up to date regarding pre-medicating patients with heart defects/disease, I don't want him touching my daughter.

My dd has had the flu several times in the last 2yrs which is not good. Getting the flu can cause heart damage.

Anyway, I am going to ask about it when I see them again to see what his opinion is.

As far as "being up to date" with the premedication that is what is being preached these days with the "guidelines". I was read them verbatim. I told her cardiologists to write she needs premeds in her chart clearly.

However I can ring them up and get premeds whenever I need to.