Kathleen's Journal

3 years ago when I had my AVR there was maybe 2x my husband and I could hear a tick. I was standing in front of the mirror putting makeup on. Well now I hear it everytime. I even recorded it. Put a call in to find out if it's normal. I can not find anything on bovine valves and hearing them tick. They are setting up an appointment to make sure all is ok. I know my last echo was great. Not even a trace leak. It was almost 10m ago. A little concerned but not overly. I can't hear it in bed or walking around.

Monday was my CRT-D implant surgery. It's a synchronization pacemaker with defibrillator. It will pace my heart when I go below 60 and shock if I stay above 200. I am sore but doing well. Trying to get used to sleeping like crap again while I heal. :)

My last update was to wait for another echo and see if my heart would heal some. I have been wearing an external defibrillator in the meantime. Not issues with that thankfully just not a fan of wearing it. Well my echo in March showed no improvement at all. My ejection fraction was still at 20%. So this Monday April 20th I am have an ICD biventricular implanted. It is a synchronization pacemaker with a defibrillator. My left and right are out of sync so hopefully this helps especially with energy. Dr said he can not guarantee it will make me feel better but it will not make me worse at least. I am dealing ok just feel cheating since my valve surgery was supposed to be my fix. Now life long issues with heart failure. But...the alternative is worse and I have a family that needs me!

I had an appt today and the Dr said my heart is pretty weak and my rhythm is out of sync. However that was from an echo just over a month from surgery. So he wants to do another in March to see if my heart possibly heals more. If it stays the same or gets worse I will most likely have a pacemaker with defibrillator inplanted. For now while I wait since my heart is weak he wants me to have a life vest which is an external defibrillator. Chances are low I would need it but the chance is there he said. Frustrated but of course glad they are watching me. Cardiac rehab is looking after me. This appt was on Jan 30th and was rescheduled until Feb 18th. Rehab called the office today and somehow got me in today

So after the shock of hearing I may need a pacemaker now I finally read my paper from the dr. It explains more and gives me conditions to read. Apparently I developed a left bundle branch block after my AVR surgery. My left ventricle is affected and worse. It is not pumping evenly with the right side. Right before surgery my EF was 35% and according to my paper now 20%. (Pretty sure Dr told me 30%. Trying not to freak me? As he kept saying, there is no need to get depressed) I am ok and realize nothing is always like it should be. I am prepared for a possible CRT pacemaker and defibrillator. (cardiac resynchronization therapy (CRT) heart device) Reading it looks like there are many cases after AVR. So I am one of the lucky ones. (Sarcasm)

I went in yesterday for my echo results. I have good news and not as good. Good news is my bovine valve looks fantastic and does not have one bit of leaking. Also my other valve that had a small leak has stopped. My heart enlargement is also down so all good things. However, my echo and EKG showed something new. Dr said my heart sort of rocks when pumping now. Which causes one side to pump great but the other not so much. Once it starts the other is already finished so it doesn't get a chance. All this has caused my ejection fraction to actually go down since surgery. I was 35-40% and am now at 30-35%. Dr said case is interesting since the rest of my heart got better. Being referred to see if I am a candidate for a pacemaker. They could set it to have the side not pumping to start sooner so it has a chance to pump. If I am not a candidate for that he said we will talk about a defibrillator. I am a little overwhelmed and do not totally understand. Just wish my AVR solved everything. :/

6 weeks post op today! Feel a little emotional as this has been a crazy ride. So thankful for what I have and blessed to understand it more. I am doing great. Rarely nap but more I am a bad napper..lol I have several cardiac rehab classes down and have been feeling so much stronger. I can tell I feel better and do more as I have some sore muscles in my chest now. Not from lifting but just using my arms more. Echo next week to get a new baseline and see (and pray) enlargement went down and ejection fraction up!

Well surgery was Wednesday and it has been a tough start but thankfully I am finally coming back to the world. Im still in ICU but think they move tomorrow.

Tomorrow I will enjoy my day with my whole family since kids are off of school and husband off work. Thinking of setting up my tripod for a family pic and then relaxing with a pedicure and eyebrow wax. I joke so no one is teasing my chipped toe paint or eyebrows while I am asleep during surgery. I know I will have socks on but makes me feel better. It has been a rough few days. I have been up and down like a crazy woman. My littles ones just don't understand and my older ones just want me better. My husband is doing so much for me and has more to come. I know I am ready just nervous/scared of course.

Well my 2nd surgeon appt did not go as well. First waited for an hour in a little box room and my patience is not the greatest. Then he comes in and was nice until we mentioned our interest in possibly a tissue valve. He really bullied us regarding mechanical. Said at my age it may be hard to find a surgeon who would want to do my later surgery due to the higher risk for a 2nd or 3rd. So if I am choosing tissue no way I would let him do it as he totally disagrees with my choice. :( Sort of really stressed me today. Like it's not a big enough decision myself.

Ok 1st surgeon appt over. I have a few choices to make on styles of valves and procedures. They can do this as early as next week! So once we decide it will not be long. Now to figure out best time for us all. He just said he would not wait until the new year. They will replace my aortic valve and hopefully my ascending aorta stays where it is. Mine is dialated to 4.2cm and at 4.5cm they have to replace that too. Still a chance when they go in for surgery though. He will do mechanical or Tissue (Bovine) and can do standard open heart or less invasive. However it is just off to the side of my breast. He said they both hurt about the same and the broken rib may be even more. He looked at my chest and said actually cosmetically he thinks my sternum would be best and lower. Just how I am made. So choices to make and when. We are thinking week of Nov 10th.