ladylunte
Member
In 1983 I was born with a CHD of pulmonary stenosis, meaning my pulmonary valve was defected and do not open like it should. This was found a few weeks after birth by my peditrician. At a few weeks old I under went angioplasty to try to open the value, it worked for a short time, but the the valve closed again. The angioplasty was done via OHS. At 4 months - Nov 1983 - I had another OHS to remove the valve - a valvetomy they called it. For 26 years I lived without a pukmonary valve and was not symptomatic at all. In Oct 2009, I went for a routine MRI and it was found that I had 60% regurgitation. The right ventricle was slightly enlarged but within boundaries. Because of the regurgitation, my cardiologist felt it was best to finally get a valve. On Nov 2009 I went in for my 3rd OHS and got a bovine valve. The surgery worked amazinging. Within 48 hours my heart was no longer enlarged and the valve was working perfectly. First time in my life I didn't have to worry about my heart condition. It was amazing.
Ten months later I found out I was pregnant. My husband and I were so excited. I had a very normal pregnancy, but the delivery of the baby in June 2011 was not so normal. Due to error made during my csection, I had severe postpartum hemorraghe and needed 14 blood transfustionsl. Due to all the blood products, IVs, antibiotics, etc, I left the hosptial with edema - severe fluid retention - which made me have high blood pressure for 2 weeks. After I was mostly recovered, I saw my cardiologist in Sept 2011 and he found that the pulmonary valve (the one replaced) had a mild/moderate leak and found the aortic now had a mild leak. This literally crushed me. I could not believe that I now had 2 valves leaking - one which I never had an issue with. He would not confirm, but most likely the edema caused the stress on the heart. I was to see him again in 6 months - March 2012. For those 6 months I was a mental mess. Fearful of everything I did. Working out scared me, lifting my child scared me, just living scared me. I was terrified I would injure my valves further.
Slowly March 2012 came and so did my appointment. This time the echo showed that the pulmonary valve was still leaking but very mildly - almost normal to someone without a condition. Even better the aortic was now showing from a mild leak to a trace. On 4-6 different views, the leak was only shown on one and not even enough to capture volume. I was elated. For the first time in 2.5 years I was told "see you in a year." For about 2 days it felt like the weight of the world was lifted off my shoulders. I started exercising again - something I had not done since before getting pregnant in 2010 - and that immidiately made me worry again. Even though i received good news, I felt like I could easily screw things up. I was under no restrictions, but I questioned every move. Here we are Sept 2012 and I am still so nervous and fearful of hurting my heart. Every fast heartbeat, mimic of a palpitation, every increased breathing rate, I become terrified.
So my questions....how do you not live in fear of causing damage? Also, when you go to your regular physician and they give you that weird look because they can hear the murmur of your artifical valve, how do you not question that something is wrong? I feel like all my other practicioners are so awkward around my heart and my valve, that their reactions make me fearful. I am in therapy and go 2 times a month and am on anxiety medications. But I do not think I will truly feel better until I can just cut the cord and remove the fear. Looking for any suggestions or tips.
Thanks for letting me ramble!
Ten months later I found out I was pregnant. My husband and I were so excited. I had a very normal pregnancy, but the delivery of the baby in June 2011 was not so normal. Due to error made during my csection, I had severe postpartum hemorraghe and needed 14 blood transfustionsl. Due to all the blood products, IVs, antibiotics, etc, I left the hosptial with edema - severe fluid retention - which made me have high blood pressure for 2 weeks. After I was mostly recovered, I saw my cardiologist in Sept 2011 and he found that the pulmonary valve (the one replaced) had a mild/moderate leak and found the aortic now had a mild leak. This literally crushed me. I could not believe that I now had 2 valves leaking - one which I never had an issue with. He would not confirm, but most likely the edema caused the stress on the heart. I was to see him again in 6 months - March 2012. For those 6 months I was a mental mess. Fearful of everything I did. Working out scared me, lifting my child scared me, just living scared me. I was terrified I would injure my valves further.
Slowly March 2012 came and so did my appointment. This time the echo showed that the pulmonary valve was still leaking but very mildly - almost normal to someone without a condition. Even better the aortic was now showing from a mild leak to a trace. On 4-6 different views, the leak was only shown on one and not even enough to capture volume. I was elated. For the first time in 2.5 years I was told "see you in a year." For about 2 days it felt like the weight of the world was lifted off my shoulders. I started exercising again - something I had not done since before getting pregnant in 2010 - and that immidiately made me worry again. Even though i received good news, I felt like I could easily screw things up. I was under no restrictions, but I questioned every move. Here we are Sept 2012 and I am still so nervous and fearful of hurting my heart. Every fast heartbeat, mimic of a palpitation, every increased breathing rate, I become terrified.
So my questions....how do you not live in fear of causing damage? Also, when you go to your regular physician and they give you that weird look because they can hear the murmur of your artifical valve, how do you not question that something is wrong? I feel like all my other practicioners are so awkward around my heart and my valve, that their reactions make me fearful. I am in therapy and go 2 times a month and am on anxiety medications. But I do not think I will truly feel better until I can just cut the cord and remove the fear. Looking for any suggestions or tips.
Thanks for letting me ramble!
How do I try to cope with the fear and anxiety?...I remind myself that one of the worst case scenerios already happened and I triumphed, and with positive thinking and prayer I can/will do it again. 
