I'm scared! Update post 18

[PRINCESS VIJA]

Some of you may remember that I had bloodclots in my lungs and arm about a month ago, and I am very lucky to be alive. Well, tomorrow I go for a visit with the cardiologist. In the hospital they did find a small hole in my heart. It's what is supposed to close up when you are born. There are some people that have this deffect where it doesn't close up. This hole is the reason why the blood clots went from the venous system into the arterial system. I am SOOOOOOO lucky that the clot went down my arm, and not anywhere else.

Anyway I am terrified of what the cardiologist is going to say. I used to work in heart surgery and have seen way too many of these procedures to fix the holes. I am so scared they are going to tell me I need open heart surgery. I have to admit I am petrified. I can just imagine what my blood pressure will be when I get there tomorrow.

 

[MinnieTink]

Try to take a deep breath and relax. I know much more easily said than done. Hang in there.

 

[dislaney]

Hope you get good news tomorrow!

 

[Eeyores Butterfly]

I hope that all goes well tmorrow Vija. I know it's hard, but try to take deep breaths.

 

[indimom]

More than likely, if you've gone this long symptom free, you won't have to do anything. My father has this, my sister, my children. None of them have needed any treatment.

Since my children are still growing and changing, the ped does pay close attention to it, and we have gone back for additional tests from time to time (just in case), but at this point it appears they will follow the 'family tradition' and have this their entire lives, but with no medical issues.

Sometimes the holes simply do not close. (My children each have two holes in their heart, they gave me the names for their particular variety, but I've forgotten. They are quite common.) As long as they are not too large, they are nothing to worry about. Okay for sports, everything. Our cardiologist told us that one of the holes is common in 10% of healthy people, the other is commonly found in 15% of healthy people.

I'm glad you mentioned this in relation to your clot issue. I may ask DD's ped if this adds to the risk factor for people who use the pill? No need to add to any risks, if my daughter someday needs to use BC...I've heard enough scary stories lately about blood clots and BC use. (Two posters within a week here on the Dis.)

I'm so glad you made it through without further harm. Such scary stuff! Give us an update when you find out, I'll be thinking of you.

 

[The Mystery Machine]

Well holes suck.

My 19yodd has an atrial hole. She had open heart surgery as a baby to repair a heart defect called Tetrology of Fallot.

Her hole is necessary because she has backwash of blood.

Interesting about the birth control issue. My dd is not on it. I will have to talk to her about it. Good idea.

 

[winnapooh]

I have multiple atrial septal defects. Since I have become symptomatic, I'm having them repaired. I am going to have open heart surgery in the next couple of months, because that's the better option for me (they aren't positive what is going on despite an MRI, multiple echos, and a right heart cath., and I have a very high shunting ratio-a lot of blood is passing through the holes).

However, there is a catheterization procedure that they can do (through the groin) where they place a patch over the hole. It's a minimally invasive procedure (very little hospital time and a short recovery), and has a fairly high success rate. I would ask the cardiologist about it. You might have to travel to a teaching hospital (if you don't have one near you) to have it done, but if you are a candidate for it, and need to have the hole repaired, I would definitely look into it.

The only concern is that the patch is made of nitinol, which is a nickel-titanium alloy, and thus if you are allergic to nickel you might want to do a little research into that (it's not a proven fact that nickel allergies result in reactions to nitinol, but it's a possibility).

 

[PRINCESS VIJA]

Thanks everyone, I will keep you posted. Your supportive words mean so much!!!

More than likely, if you've gone this long symptom free, you won't have to do anything. My father has this, my sister, my children. None of them have needed any treatment.

I'm glad you mentioned this in relation to your clot issue. I may ask DD's ped if this adds to the risk factor for people who use the pill? No need to add to any risks, if my daughter someday needs to use BC...I've heard enough scary stories lately about blood clots and BC use. (Two posters within a week here on the Dis.)

I'm so glad you made it through without further harm. Such scary stuff! Give us an update when you find out, I'll be thinking of you.

So glad your family is symptom free. That is a blessing!

I am one of those posters. It was and still is truly scary.

thank you so much for thinking of me, it truly means alot!

I have multiple atrial septal defects. Since I have become symptomatic, I'm having them repaired. I am going to have open heart surgery in the next couple of months, because that's the better option for me (they aren't positive what is going on despite an MRI, multiple echos, and a right heart cath., and I have a very high shunting ratio-a lot of blood is passing through the holes).

However, there is a catheterization procedure that they can do (through the groin) where they place a patch over the hole.

Oh Gosh, I will pray for you. thanks for the info on the catheterization procedure. I will keep that in mind.

 

[minniebeth]

Best wishes for your appointment today~ I will be thinking of you!

 

[Disney Doll]

I had heart surgery for that when I was 7 years old (I am now 48).
I had a TIA last year and they found another small hole and I only have to take a baby aspirin.

Good luck!

 

[Desiree]

Thinking of you as well. I'm 2 years into discovering that I have a clotting disorder. If anything it has made me hyper-aware of my body and signs if there is something wrong, then to go check it out asap. Hoping the doc visit goes well. Fingers crossed.

 

[minkydog]

Some of you may remember that I had bloodclots in my lungs and arm about a month ago, and I am very lucky to be alive. Well, tomorrow I go for a visit with the cardiologist. In the hospital they did find a small hole in my heart. It's what is supposed to close up when you are born. There are some people that have this deffect where it doesn't close up. This hole is the reason why the blood clots went from the venous system into the arterial system. I am SOOOOOOO lucky that the clot went down my arm, and not anywhere else.

Anyway I am terrified of what the cardiologist is going to say. I used to work in heart surgery and have seen way too many of these procedures to fix the holes. I am so scared they are going to tell me I need open heart surgery. I have to admit I am petrified. I can just imagine what my blood pressure will be when I get there tomorrow.

I have a very good friend who went through something similar. She started throwing clots when she was 17 and had a full blown stroke. They always attributed it to her BCPs and of course, that was the end of those. She and her hubby elected not to have children because of the high risk to her of serious complications. Then last year, in her mid-50s(!) she started having some little heart palpitations, nothing awful, just bothersome. Went to the cardiologist, who did an echocardiagram and what do you know! She had that same little hole in her heart. All this time! Holy cow, when I think about that being untreated all these years. Anyway, she went in for an outpatient procedure, kinda like a cardiac cath. They gave her sedation(not general) and put a special IV in her leg and run it up to the heart. They put some kind of little clip in there and closed off the hole. Done deal in less than 2 hours!

Hopefully, you will have a similar experience. I know my friend has been very happy with her new clip and has had ZERO trouble with it.

 

[Magic Mom]

Some of you may remember that I had bloodclots in my lungs and arm about a month ago, and I am very lucky to be alive. Well, tomorrow I go for a visit with the cardiologist. In the hospital they did find a small hole in my heart. It's what is supposed to close up when you are born. There are some people that have this deffect where it doesn't close up. This hole is the reason why the blood clots went from the venous system into the arterial system. I am SOOOOOOO lucky that the clot went down my arm, and not anywhere else.

Anyway I am terrified of what the cardiologist is going to say. I used to work in heart surgery and have seen way too many of these procedures to fix the holes. I am so scared they are going to tell me I need open heart surgery. I have to admit I am petrified. I can just imagine what my blood pressure will be when I get there tomorrow.

I'll be praying for you.

 

[JVL1018]

My son had a hole in his heart-a large atrial septal defect. It was found when he was 12 months, he had it repaired via cardiac catheterization when he was 4.
He was in the hospital for 24 hours total-and was 100% fine afterwards, no recovery period at all for him.
I hope yours is as simple to repair!

 

[Mommy2three]

Hey there Princess! I had my followup appt. yesterday with my internal medicine doctor. My INR was at 2.06. He also checked some of my previous blood work from when i was in the hospital, he said my iron is low, I am pre-diabetic, and my thyroid count was high. so he ordered some more blood work to check my sugar count (lipids), my iron, my thyroid, my cholesterol, and another blood test that will tell him my what sugar count has been for the last 3 months. He also gave me some Xanax for my anxiety, but to start off taking only at night, and if that doesnt help with my anxiety to call him and he will have me take it 3 times a day. And if the prilosec ever stops working for my GERD then i have to go in for an endoscope. I need to do moderate excersise and diet since i am pre-diabetic. Diabetes runs in both sides of my family, and very heavily on my moms side of the family.

I was in pain again last weekend and went to the urgent care and the doc said it was just normal from the pulmonary emboli, but if i get short of breath then go to the ER. 2 days later i was pain free, but did tell me regular doc about it and he said the same thing. Keep me updated with what your cardiologist says tomorrow.

 

[Art 1]

Here's a prayer, relax and good luck.

 

[4nana]

Hoping your visit went well and am keeping you in my prayers sweetie. Know the anxiety, my lil DGS was born with a hole in his heart that thankfully is normal now.
Keep the faith ^j^

 

[PRINCESS VIJA]

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

 

[The Mystery Machine]

I am sorry for your rough patch you are going through. It must be very hard.

 

[Rosered]