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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

Issues after closure. now diagnosed with Diastolic Dysfunction?

In August I was diagnosed by double heart cath with diastolic dysfunction with left ventrical stiffening. An hour before the cath my cardiologist was suggesting I see a dr. closer to home since I really wouldn't need him and then a half hour later pulled in four cardiologists to look at my heart. They obviously could not believe what they were seeing on the screen. If you google Diastolic dysfunction you come up with heart failure. I have continued to have chest pain, shortness of breath, no energy, and a general feeling of terrible health. Five weeks after ASD closure this started up. I had a prior post but am continuing to have health issues and no one can find a reason. I met with my cardiologist AGAIN today (my third one) and he says I passed my stress test with flying colors. He says my heart is good to go! I am on several heart failure meds. Did anyone else have this happen to them?

He is suggesting a possible hiatle hernia and see a psychologist to help with my stress level. In the past two years I have had the following.. Emergency Hysterectomy Dec. 11, breast cancer April 2012, Heart issues followed by ASD closure Oct. 2012, Thoracic Fusion due to previous back injury 20 years ago. Feb. 2014. Thanks

Previous post from 1.5 years ago...

I am three months out from my ASD closure by Amplatzer device. It was about the size of a quarter. The doctor says my right ventricle is enlarged and "It's not that bad." He had another dr. look at it too.I am a 44 year old female and mother of two energetic boys.I did great after the procedure for a while. I had an increase in energy, less numbness in hands and feet, and a major decrease in shortness of breath. After about a month and a half that began to change and has continued to worsen since then. I have to wait a little while before seeing my cardiologist but I think I may have pulmonary hypertension. Here's what's going on. I am experiencing extreme fatigue, dizziness, chest pains with pressure feeling, leg aches, and some heart palpitations. The thing that really concerns me is my shortness of breath and inability to do ANYTHING. Just putting a load of laundry in causes shortness of breath and weird coughing. Tried to make some returns at a department store and could not walk across it without sitting down. I feel like I just can't breathe, just shallow breaths. When I see the doctor they are doing an echo. Are there any questions I should specifically ask? Thanks for your ideas! Happy New Year!

I had a open heart surgery in 2012 to fix my heart which had a 2.8cms hole.The surgeon was supposed to put a patch but he brought the 2 ends together and sewed it together, which got opened in 3 months and I was having very severe palpitations, dizziness(collapses) and shortness of breath., which was very strange to me and my family.

The cardiologist advised me to undergo another trans-esophageal echo cardiogram. He found a bigger hole, 3.1 cms. They posted me for a amplatzer device procedure. I had it last May, its been 1 year, I feel much better but get very ANGRY and FRUSTRATING as my questions were not answered by the previous surgeon and the Cardiologist covering the surgeon, his colleague...(I didn't get any justice. I was told that it will decided on the operation table of whether to put a patch or bring the two ends together and sew it, even if they inform that a patch will be put) I still feel tightness in my chest and pain like pulling and stretching especially when I am sleeping. I got diagnosed with HTN. The Docs tell me that every heart patient(even if my heart is fixed with the device) will have HTN. I am on high dosage of HTN medications but it doesn't work. Just have to live with it. It makes matters worse with a 3 year old to keep you on your feet all day long.But still, am thankful to God, He has kept me alive to see my daughter and a mother to my daughter.



Dkel9307 said:

P.S. Notice d you live in Western Australia. I live in South Australia - disappointed to hear that your doctors weren't so good. I thought Australian cardiologists would be better than that. I had a shocker for my first one, so I changed. I have found, as a general rule, it's better to get "younger" ones (say, in 40s) who are progressive and treat us as equals.



grace said:



Dkel9307 said:

P.S. Notice d you live in Western Australia. I live in South Australia - disappointed to hear that your doctors weren't so good. I thought Australian cardiologists would be better than that. I had a shocker for my first one, so I changed. I have found, as a general rule, it's better to get "younger" ones (say, in 40s) who are progressive and treat us as equals.

hi i live in the uk in scotland i had a asd closure through open heart surgery 6 weeks ago i had a patch put over the hole i have been pretty unwell since i started having seizures soon after the op then i was told that i have af. which puts me at risk of having a stroke so now on loads of medication which i was not on before the closure i wish i had not bothered with the op as i feel worse than i did before the op i can barely walk a hundred yards with out getting out of breathe.and i am so down because of it because i cannot go any where without some one being with me , and at that it has to be by car .lots of luv grace

Hi Stace,

I'm sorry to hear you're going through this. It's very distressing when you're told you'll feel better, then you do for a short bit, only to feel worse after surgery

I'm having very similar symptomatic complications that you first mentioned since my ASD/PFO closure 11 months ago with the Gore Helex device.

Two days after surgery I started having really bad shortness of breath, migraine auras every day, severe fatigue, exercise intolerance, racing heart, chest pressure, etc. I've stopped working because I barely have the energy to do laundry, let alone go to work. The two cardiologists I've seen are clueless as to what is wrong and tell me my tests look fine -- they seem to brush off my complaints that I feel bad even though tests say otherwise. I'm pushing to find out if I'm reacting to the Nickel/Titanium in the device by having the MELISA Metal Hypersensitivity blood test to check immune response to Nickel & Titanium.

Did you get tested for a Nickel allergy? If yes, how did the test turn out? How are you doing now since your last post? Hopefully better! :)

~ Katherine

I was tested for allergy. A poor attempt in my opinion. They taped the Amplatzer device to my back. SInce there is a prong in the middle of it I felt it never made constant contact. However, in my case that was just to rule out allergy and we moved on to other ideas. It took a long time to find out what I had. Like a year and a half. I felt horrible the whole time. Finally, they did a double heart cath and found that I have diastolic dysfunction which is a pumping problem in the heart. Every test I had always looked fine too. I am on lisinopril and it has changed my life. Within four days I was a different person. That was at 10 mg. Then, I started feeling bad again and I encouraged my cardiologist to up the dose. He did and again miraculous change. He still says even though I have heart failure it is not my heart. I don't buy it but am thankful he listens and has let me have the medication that is allowing me to work and live a somewhat normal life. I can even go for walks now but not too fast or I feel ill. I am learning my limits. It's hard at 46 to know you can't do what you used to do but I am doing great considering how I was doing. I guess I am a mystery to EVERY doctor. I had a broken thoracic disk with a severe stenosis issue that was fixed. My physical therapist thinks perhaps with the hole in my heart and nervous system damage it caused my heart issues to be more severe more quickly. As I read up on this I think she might be on to something. I am sorry you are dealing with this. Push for the double heart cath. My doctor didn't think I needed it and tried to convince me not to do it. Then, during the test (you are awake) he pulled in four cardiologists and asked if I had ever had radiation to my heart. Totally changed his tune. I'm glad he let me take the lead in that case. My other cardiologist wanted to send my to Mayo Clinic I wish I would have gone!! Take care!!



Fullenlove said:

Hi Stace,

I'm sorry to hear you're going through this. It's very distressing when you're told you'll feel better, then you do for a short bit, only to feel worse after surgery

I'm having very similar symptomatic complications that you first mentioned since my ASD/PFO closure 11 months ago with the Gore Helex device.

Two days after surgery I started having really bad shortness of breath, migraine auras every day, severe fatigue, exercise intolerance, racing heart, chest pressure, etc. I've stopped working because I barely have the energy to do laundry, let alone go to work. The two cardiologists I've seen are clueless as to what is wrong and tell me my tests look fine -- they seem to brush off my complaints that I feel bad even though tests say otherwise. I'm pushing to find out if I'm reacting to the Nickel/Titanium in the device by having the MELISA Metal Hypersensitivity blood test to check immune response to Nickel & Titanium.

Did you get tested for a Nickel allergy? If yes, how did the test turn out? How are you doing now since your last post? Hopefully better! :)

~ Katherine

PS My cardiologist is very young and a wonderful person who listens to me. Keep looking for the right one. Mine is at a teaching hospital I think that's the way to go!

HI Stace,

what tests did they do before the double heart cath?

I have had a heart MRI, tons of EKGS, tons of echocardiograms, stress echo, and Pulmonary function tests.

I think I need another heart cath as well, I know something is definitely wrong. I had my ASD closed with the amplatzer in fall of 2013 and my health has never been the same. I have same the issues everyone else reports -

shortness of breath, fatigue, CHEST PAIN, skipped heart beats, zero exercise tolerance, etc.

I am so glad you found a good cardiologist. Who are you seeing and where?

best wishes,

Jennifer

How are you now? Have you had a stress echo? What were your pressures post closure? A cmr?

Yeah. It’s awful. How are you now?

Hey Katherine,

Are you any better?

Hi Stacey,

What did they find on the Caths? Any ph?

Hey Jennifer,

It’s so crazy … I feel like I’m losing my mind… How do you feel now?

Hi,
My name is Chy and I had ASD closure done last May 2016. Days after the closure I’m experiencing rapid heartbeat time to time. It’s stops early 2017 but again it comes back just last month. And I’m so concern because the doctors can’t tell why. Just today I had it again that last almost an hour and I’m 6 months pregant. Does any of you experience the same? I really wanna know why this happens.

Thank you.