I'm scared! Update post 18

[Desiree]

 

[luvflorida]

I am so sorry for everything you are going through. I will keep you in my prayers and good wishes.

 

[indimom]

 

[Buckalew11]

Hugs and prayers for you. I know you are very, very scared.

 

[sweetpea29488]

 

[winnapooh]

Update!

I couldn't bring myself to post yesterday, I was too emotional and overcome by the info.

Well, he wants me to have a transesophageal echocardiogram (TEE) first to determine how big, how bad, and the exact type of hole I have. THAT is very SCARY to me. I used to work in heart surgery and have seen the TEE's first hand. the tube they put into your esophagus is HUGE and I have only seen it done on completely anesthetized patients. Ughhh, I am terrified of that as they do not put you under for this. I told him that if I went down this road that I would want an anesthesiologist to sedate me. They can do more than RN sedation. I used to work in the GI lab and would administer the seadation drugs for endoscopies, so I am well aware of what happens when tubes go down your throat. He was fine with that, so at least I feel better.

THEN he talked about closing the hole. It is as previous posters mentioned... like a heart cath that they snake a long tube up into the heart and deploy the device. Of course he also has to mention complications and one of the scariest to me is the fact that the device could loosen over time and fall into the atria or ventricles of the heart. If they can't get it out then it requires open heart surgery. (having worked in open heart surgery I want no part of that!!!)

I am way too scared to deal with this right now. The doctor was AWESOME though, he took alot of time with me, never rushed me and in fact told me he didn't want an answer right away but to think on it.

THe other option is to take coumadin for the rest of my life. However he did say that it is not a 100%, and I could still throw clots. The chance is of course higher since I've already clotted. He also reiterated how lucky I am that the clot went into my arm, and not my brain, my kidneys, or intestines which would have caused stroke, or severe abdominal organ problems. I know I am lucky to be alive right now.

He also explained why I probably had such low oxygen numbers when they first intubated me for surgery. the pressure in the lungs was too great with the clots in the lungs, so the venous blood meant to go to the lungs was shunted through the hole into the left side which then goes out to the body. Another reason to fix it.

DH is adamant that I not do anything right away. My right arm is still a long way off from being healed, and I still most likely have the clots in my lungs. he thinks I should wait till at least January so that my body has time to heal before I undergo more procedures.

I am sitting here crying, scared of what the future holds. I can't stop crying

Don't worry about the TEE...I know the thought of that procedure is scary, but I've had two done in the past few months, and it's really not a big deal, I promise! I barely even had a sore throat afterwards. They gave me something to help me kinda sleep through it, but I woke up during the second one, and watched what they were doing on the monitor. The weird part about those was the stuff they give you to numb your throat. You'll get through it just fine

About closing the hole; I talked extensively with a heart cath. surgeon, and this is a pretty safe procedure. If I could have it done, I would, but unfortunately I have multiple holes and they think the rest of my septum is basically a sieve. I'm also severely allergic to nickel (which is in the patch). So open heart is my best option.

However, for the cath. procedure, you will only have a short recovery time...I just had a right heart cath. and I was up and walking in less than 2 hours. I've done a lot of research into the cath. procedure, and it's pretty low risk. I'm sure it will go just fine!

As far as coumadin though, I have strong feelings about that. Not to scare you more, I just want to give you my families experience...I think you are much better off getting the hole fixed than taking coumadin for life. My dad was on coumadin and it caused a major brain bleed (he acted like he was having a major stroke). After two weeks in the ICU and multiple brain surgeries, he's fine now...but I would do research into the effects of coumadin before committing to it.

I understand how big of a deal this is; I've been dealing with the same thing for the past 6 months, and just finally, on Monday, made the decision to have the open heart surgery. Give yourself some time, then do some reading on this. The Mayo Clinic has some good information on the closure procedure.

Good luck If you need to talk, feel free to pm me.

 

[Dan Murphy]

Vija, 's

Prayers are with you, I know you will make the right decision, and when you do, you will be better.

 

[C.Ann]

Update!

I couldn't bring myself to post yesterday, I was too emotional and overcome by the info.

Well, he wants me to have a transesophageal echocardiogram (TEE) first to determine how big, how bad, and the exact type of hole I have. THAT is very SCARY to me. I used to work in heart surgery and have seen the TEE's first hand. the tube they put into your esophagus is HUGE and I have only seen it done on completely anesthetized patients. Ughhh, I am terrified of that as they do not put you under for this. I told him that if I went down this road that I would want an anesthesiologist to sedate me. They can do more than RN sedation. I used to work in the GI lab and would administer the seadation drugs for endoscopies, so I am well aware of what happens when tubes go down your throat. He was fine with that, so at least I feel better.

THEN he talked about closing the hole. It is as previous posters mentioned... like a heart cath that they snake a long tube up into the heart and deploy the device. Of course he also has to mention complications and one of the scariest to me is the fact that the device could loosen over time and fall into the atria or ventricles of the heart. If they can't get it out then it requires open heart surgery. (having worked in open heart surgery I want no part of that!!!)

I am way too scared to deal with this right now. The doctor was AWESOME though, he took alot of time with me, never rushed me and in fact told me he didn't want an answer right away but to think on it.

THe other option is to take coumadin for the rest of my life. However he did say that it is not a 100%, and I could still throw clots. The chance is of course higher since I've already clotted. He also reiterated how lucky I am that the clot went into my arm, and not my brain, my kidneys, or intestines which would have caused stroke, or severe abdominal organ problems. I know I am lucky to be alive right now.

He also explained why I probably had such low oxygen numbers when they first intubated me for surgery. the pressure in the lungs was too great with the clots in the lungs, so the venous blood meant to go to the lungs was shunted through the hole into the left side which then goes out to the body. Another reason to fix it.

DH is adamant that I not do anything right away. My right arm is still a long way off from being healed, and I still most likely have the clots in my lungs. he thinks I should wait till at least January so that my body has time to heal before I undergo more procedures.

I am sitting here crying, scared of what the future holds. I can't stop crying

I can only imagine how frightened you are - but please try to calm down.. Crying and being anxious will simply further your heart issues..

I would get a second opinion - from the best - gather all the info - and then make your decision.. You are SO lucky to even be alive after the first incident, try to look at this as, "Thank God it's something they can fix!!"

If your anxiety persists, please speak to your doctor about it.. A short-term run of anxiety meds might be in order.. Meanwhile I will keep you in my nightly prayers..

Hang in there.. You can get this fixed!!

 

[SarahandPaul]

I am a pretty infrequent poster,but I am an RN in a cardiovascular lab where we do close both ASDs and PFOs via catheter. Definitely write all your questions down as they come to mind so you don't forget to ask during your next appt. I would be happy to answer any specific questions if you have any!

 

[bumbershoot]

DH is adamant that I not do anything right away. My right arm is still a long way off from being healed, and I still most likely have the clots in my lungs. he thinks I should wait till at least January so that my body has time to heal before I undergo more procedures.

I like the way your husband thinks. If it's at all possible, get a bit more healed up so this doesn't put too much stress on your system.

 

[DawnCt1]

Don't worry about the TEE...I know the thought of that procedure is scary, but I've had two done in the past few months, and it's really not a big deal, I promise! I barely even had a sore throat afterwards. They gave me something to help me kinda sleep through it, but I woke up during the second one, and watched what they were doing on the monitor. The weird part about those was the stuff they give you to numb your throat. You'll get through it just fine

About closing the hole; I talked extensively with a heart cath. surgeon, and this is a pretty safe procedure. If I could have it done, I would, but unfortunately I have multiple holes and they think the rest of my septum is basically a sieve. I'm also severely allergic to nickel (which is in the patch). So open heart is my best option.

However, for the cath. procedure, you will only have a short recovery time...I just had a right heart cath. and I was up and walking in less than 2 hours. I've done a lot of research into the cath. procedure, and it's pretty low risk. I'm sure it will go just fine!

As far as coumadin though, I have strong feelings about that. Not to scare you more, I just want to give you my families experience...I think you are much better off getting the hole fixed than taking coumadin for life. My dad was on coumadin and it caused a major brain bleed (he acted like he was having a major stroke). After two weeks in the ICU and multiple brain surgeries, he's fine now...but I would do research into the effects of coumadin before committing to it.

I understand how big of a deal this is; I've been dealing with the same thing for the past 6 months, and just finally, on Monday, made the decision to have the open heart surgery. Give yourself some time, then do some reading on this. The Mayo Clinic has some good information on the closure procedure.

Good luck If you need to talk, feel free to pm me.

Out of all the replies to the OP, yours are truly the most helpful. You have been there,weighed the risks, did the best thing going forward and making that correct, yet difficult decision again. Best of luck to you. Your attitude and optimism will certainly see you through very successfully. Back to the OP, this is very much in line with what her very competitant surgeon recommended to her. I hope that after she heals, she will make a similar decision as yours.

 

[PRINCESS VIJA]

THANK YOU!!!! To everybody!!!! The DIS is so supportive, and I really appreciate all of your good thoughts, prayers, well wishes more than you can imagine. it really means a lot to me.

I have calmed down a bit, and although I still feel a burden on my shoulders, I do feel a bit more calm. I will be researching this alot.

Don't worry about the TEE...I know the thought of that procedure is scary, but I've had two done in the past few months, and it's really not a big deal, I promise!
I understand how big of a deal this is; I've been dealing with the same thing for the past 6 months, and just finally, on Monday, made the decision to have the open heart surgery. Give yourself some time, then do some reading on this. The Mayo Clinic has some good information on the closure procedure.

Good luck If you need to talk, feel free to pm me.

Thanks for the info, and personal experience regarding the TEE. I feel a little bit better. I will certaily PM you today!!!

I am a pretty infrequent poster,but I am an RN in a cardiovascular lab where we do close both ASDs and PFOs via catheter. Definitely write all your questions down as they come to mind so you don't forget to ask during your next appt. I would be happy to answer any specific questions if you have any!

Thank you, I will be sending you a PM later today too!!!

 

[lisah0711]

Vija.

This is a tough time for you and you need to take care of yourself. You are a very strong person and you will get through this.

My SIL had a hole in her heart repaired last year -- she had had a stroke that she fully recovered from that alerted her to the problem. She was very glad that she had it repaired and is fully recovered.

Take your time deciding and ask as many questions and see as many doctors as you need to until you are comfortable with your decision.

I will keep you in my thoughts and prayers.

 

[ChrizJen]

OP, I can imagine you're scared. No one wants to hear bad news about their heart!!
But I just wanted to give you a few encouraging words. My 14 yr old niece was diagnosed with your same issue, and recently had the procedure done. It was done on a Thursday, she was able to go home on Friday, and she went out to the movies with friends on Saturday! She said she never had anything but a little sorenes. I went and saw her on that Thursday night after the procedure, and she was up and moving around!
It's truly amazing what technology allows surgeons to do these days!!

Try not to worry too much about it.

 

[PRINCESS VIJA]

My SIL had a hole in her heart repaired last year -- she had had a stroke that she fully recovered from that alerted her to the problem. She was very glad that she had it repaired and is fully recovered.

!!
But I just wanted to give you a few encouraging words. My 14 yr old niece was diagnosed with your same issue, and recently had the procedure done. It was done on a Thursday, she was able to go home on Friday, and she went out to the movies with friends on Saturday! She said she never had anything but a little sorenes. I went and saw her on that Thursday night after the procedure, and she was up and moving around!
It's truly amazing what technology allows surgeons to do these days!!

thank you both for your stories, it makes it a bit better to hear success stories! and thanks for the thoughts and prayers. Those are appreciated so very much.

 

[winnapooh]

Best of luck to you. Your attitude and optimism will certainly see you through very successfully.

Thanks