K
karenm
Hello all! I am new here but have been reading your posts for a while as I gathered up information and courage for my upcoming PVR surgery on November 3. I was starting to feel like a peeping tom, so I decided it was time to come out of the shadows and introduce myself!! Some of you have endured my angst at ACHAHeart.org. I am an adult congenital heart patient, so like many here I started this long adventure at birth. I'll try to paint my history in broad, brief strokes so as not to take up too many electrons!
At birth in 1960 I was diagnosed with Tetrology of Fallot, I had a Blalock procedure to patch me up at 18 months and an OH at 5 years (had to wait to weigh enough to be on the heart lunch machine). Never could do the president's physical fitness test, but other than that I did fine until I was 16 and the new cardio thought it was time to take me off the digoxin. I spent the 4th of july in the ICU being shocked back into sinus rhythm. Boy did I see fireworks!
Fast forward to my 30's, some SOB with exercise but it came and went. When I started asking my cardio if I could have a child, she sent me to the cath lab to check out my pulmonary valve. It looked ok, but I was told that it likely had 5 - 10 years left before a replacement was in order! That was the first I had heard about this. When I had my beautiful son 6 years ago I promptly put all thoughts of new heart parts out of my mind!
About 18 months ago, a new cardio (always changing insurance, gotta change doctors) told me it was time for a pacemaker and coumadin due to my pronounced AFib. At age 44 I had a different opinion and decided to add aspirin and the reduced salt diet. He was not at all pleased with my stuborness (I tried to tell him it was what had kept me alive some 40 years ago) and over some months he informed me it was time to reduce my fluids and to learn about an ablation. I thought he was bonkers and as I was about to get a second opinion I got new insurance and a new cardio. This time an ACHD specialist (yeah).
The ACHD team found me in severe AFib the first day I met them in July ( I was nervous to meet them, it is almost always trigered by adrenaline.) This seemed to worry them more than me as I had been functioning with it for many years. They scheduled me for a holter monitor and started a beta blocker on the spot (after an echo and EKG). This is when the real fun started. I started the beta blocker and it had me so dragging that I reduced my dose to 1/2 (with the DR ok). After 2 weeks on the new meds I turned in the Holter on Thursday and went out of town for the weekend. When I was sitting at work on Wednesday afternoon, the DR office called me to request strongly that I have someone drive me to the ER NOW as I was at severe risk of sudden death due to the long breaks between heart beats while I sleep. They were wanting to monitor me and schedule an emergency pacemaker!
That was a fun call. I informed them that this was no doubt the work of the efficient beta blocker and that I was pretty sure that I would likely make it through the night. I had an appointment already scheduled for the next afternoon, and I would come in then to discuss this with the DR. The Cardio then called to repeat the message but finally agreed with me that I was probably going to make it one more day, and we both agreed that the beta blockers were not the best for me. I did not sleep much waiting for the grim reaper to visit!
On August 19, I arrived at the appointment bravely consigned to getting a pacemaker. At the appointment I was told that I needed more than the old cardio thought. I needed to start with a TEE then move to an ablation for the AFib. One that was done I would be needing a PVR and most surely a pacemaker. What had seemed difficult before (some salt reduction and a pacemaker) was a tiny piece of my future.
So, with that I scheduled a ablation on August 25th. The promised 1 hour procedure turned into an 8 hour marathon due to my complex circuitry and my years of AFib. I learned to never again refuse a catheter if the surgical nurse thinks that you just might want one, just in case!
I have not had the TEE, but have scheduled the PVR for November 3. I will have a coronary and pulmonary angiogram on November 2 just for grins. On the 3rd, I will be getting a new pulmonary valve, repairing an atrial/septal hole (is that spelled right) and possibly getting a new mitral valve and a pacemaker.
I have been trying to be brave. The words that Michelle and Jeff have shared have help quite a bit. I too have a 6 year old son that I am trying to prepare and reassure. I am heartsick at the thought that something will happen to me and he will be left in the care of others. I am trying to put that out of my head, but it is haunting me.
I am also trying to avoid thinking about my phobia of needles (the IV is a real trial for me) and not to think about the breathing tubes, yep- anything down my throat terrifies me too.
I know that you have all had these thoughts, and have made it to the other side with success. I am thankful that you have shared your stories and have let me see a glimpse of hope.
Whew ... if that was keeping it brief, imagine if I had tried to tell the whole tale! Thanks for listening, and I'll ask for your thoughts as I get nearer to November 3rd.
~Karen
At birth in 1960 I was diagnosed with Tetrology of Fallot, I had a Blalock procedure to patch me up at 18 months and an OH at 5 years (had to wait to weigh enough to be on the heart lunch machine). Never could do the president's physical fitness test, but other than that I did fine until I was 16 and the new cardio thought it was time to take me off the digoxin. I spent the 4th of july in the ICU being shocked back into sinus rhythm. Boy did I see fireworks!
Fast forward to my 30's, some SOB with exercise but it came and went. When I started asking my cardio if I could have a child, she sent me to the cath lab to check out my pulmonary valve. It looked ok, but I was told that it likely had 5 - 10 years left before a replacement was in order! That was the first I had heard about this. When I had my beautiful son 6 years ago I promptly put all thoughts of new heart parts out of my mind!
About 18 months ago, a new cardio (always changing insurance, gotta change doctors) told me it was time for a pacemaker and coumadin due to my pronounced AFib. At age 44 I had a different opinion and decided to add aspirin and the reduced salt diet. He was not at all pleased with my stuborness (I tried to tell him it was what had kept me alive some 40 years ago) and over some months he informed me it was time to reduce my fluids and to learn about an ablation. I thought he was bonkers and as I was about to get a second opinion I got new insurance and a new cardio. This time an ACHD specialist (yeah).
The ACHD team found me in severe AFib the first day I met them in July ( I was nervous to meet them, it is almost always trigered by adrenaline.) This seemed to worry them more than me as I had been functioning with it for many years. They scheduled me for a holter monitor and started a beta blocker on the spot (after an echo and EKG). This is when the real fun started. I started the beta blocker and it had me so dragging that I reduced my dose to 1/2 (with the DR ok). After 2 weeks on the new meds I turned in the Holter on Thursday and went out of town for the weekend. When I was sitting at work on Wednesday afternoon, the DR office called me to request strongly that I have someone drive me to the ER NOW as I was at severe risk of sudden death due to the long breaks between heart beats while I sleep. They were wanting to monitor me and schedule an emergency pacemaker!
That was a fun call. I informed them that this was no doubt the work of the efficient beta blocker and that I was pretty sure that I would likely make it through the night. I had an appointment already scheduled for the next afternoon, and I would come in then to discuss this with the DR. The Cardio then called to repeat the message but finally agreed with me that I was probably going to make it one more day, and we both agreed that the beta blockers were not the best for me. I did not sleep much waiting for the grim reaper to visit!
On August 19, I arrived at the appointment bravely consigned to getting a pacemaker. At the appointment I was told that I needed more than the old cardio thought. I needed to start with a TEE then move to an ablation for the AFib. One that was done I would be needing a PVR and most surely a pacemaker. What had seemed difficult before (some salt reduction and a pacemaker) was a tiny piece of my future.
So, with that I scheduled a ablation on August 25th. The promised 1 hour procedure turned into an 8 hour marathon due to my complex circuitry and my years of AFib. I learned to never again refuse a catheter if the surgical nurse thinks that you just might want one, just in case!
I have not had the TEE, but have scheduled the PVR for November 3. I will have a coronary and pulmonary angiogram on November 2 just for grins. On the 3rd, I will be getting a new pulmonary valve, repairing an atrial/septal hole (is that spelled right) and possibly getting a new mitral valve and a pacemaker.
I have been trying to be brave. The words that Michelle and Jeff have shared have help quite a bit. I too have a 6 year old son that I am trying to prepare and reassure. I am heartsick at the thought that something will happen to me and he will be left in the care of others. I am trying to put that out of my head, but it is haunting me.
I am also trying to avoid thinking about my phobia of needles (the IV is a real trial for me) and not to think about the breathing tubes, yep- anything down my throat terrifies me too.
I know that you have all had these thoughts, and have made it to the other side with success. I am thankful that you have shared your stories and have let me see a glimpse of hope.
Whew ... if that was keeping it brief, imagine if I had tried to tell the whole tale! Thanks for listening, and I'll ask for your thoughts as I get nearer to November 3rd.
~Karen
