Hope all is well. I just wanted to provide a quick update on me...
I realize I haven't had open heart surgery yet, and an ablation does not even come close to comparing. However, I also know that many people who have open heart surgery end up needing an ablation later on. I hope this post provides encouragement.
So here's my ablation story:
After finding out from the Cleveland Clinic that it wasn't time for valve surgery yet (and hopefully it'll still be a few years), I met with an EP in Atlanta. I sat in the room with cautious optimism. I was thrown off when he walked in and said he wanted me to have valve surgery before he worked on me, but I told him what I heard back from Cleveland Clinic. After that he agreed to continue treating the heart rhythm issues I've been having.
After studying the EKG, he could tell that my PVCs were coming from my right ventricle near the outflow tract. They weren't originating near the aortic or mitral valve or from my severely enlarged left ventricle. So he decided that I have a completely separate issue outside of my two faulty valves. He gave me an 70% rate of success and said if he can fix it, he expects my ejection fraction and heart size to improve. If that happens, there is also the possibility that my mitral valve won't leak as much (presumably my heart is stretched so much that it stretched the valve causing the leakage). He reassured me that he wouldn't be aggressive with his treatment and that he would be very "gentle."
He explained that wanted to do two things during the ablation:
1) Do an EP study to see if he could induce cardiac arrest (ventricular fibrillation or ventricular tachycardia). He thought since my heart was so enlarged that he would be able to. If he was, I would get an Implantable Cardioverter Defibrillator (ICD). This freaked me out...
2) Figure out exactly where the PVCs are coming from and ablate them.
I'm so happy to report that the ablation was a success. He was able to rid me of my PVCs (at least for now) and he was not able to induce a dangerous rhythm. In other words, it went as good as it could possibly go. I feel like a new person. Before I had that vibration in my chest 24/7 (similar to what you'd feel at a loud concert). Today it is gone. It's weird to not feel my heart beat at all. I'm hopeful that this will further delay any valve surgery by reducing my heart size, mitral regurgitation and improving my EF (currently 41%).
For those of you that are having an ablation...it was so much easier than I imagined. Here's the play-by-play (feel free to skip over this part):
I was back in a holding room for 2 hours watching "drunk" patients roam the area (people that had just had surgery). My husband was able to join me for the last 30 minutes before "go" time. I met with the doctor right before I went back. He reminded me that he was going to be very conservative and gentle as I listened with tears in my eyes. I said my goodbyes and was wheeled down the hall by two very sweet nurse anesthetists. I was able to get onto the table myself. I sat on the table while they applied cold patches all over me. They shot something in my IV and the last thing I remember saying was "talk to y'all later" (that was a little premature and I'll explain why further down).
I woke up to my husband and my mom in the recovery room. The first thing I did was look at the monitor to find a beautiful and normal sinus rhythm. They told me it was the surgery was a success and I cried tears of joy. Well it turns out that they give you something to prevent you from creating new memories so this cycle went on about 10 times (look at the monitor, ask how it went and cry). Ha! My shoulder hurt pretty bad (felt like heartburn), which is from referred pain from the heart. My chest was also sore. It felt cold when I took a deep breath and tight. This subsided within a couple days.
The doctor came in and told me I talked the whole time (although I don't remember it). I'm positive I annoyed him because he said he felt like it was a medical interrogation, but said he was impressed with my knowledge of the heart! I remember him telling the anesthetist to quit talking to me.
Anyway, I was very excited to learn that it had worked. I hope this provides encouragement to anyone about to have this procedure.
I'll probably take a step back from posting for now since valve surgery is on hold, but I will continue to post periodic updates.
This bicuspid aortic valve of mine is doing ok for now so I'm happy to sit back and hang out in the waiting room. In the meantime, I'll continue to check in and pray for all of you who are recovering or going through surgery.
Ready for this to be normal again...a whole new world of energy would be amazing!
Pressing on --- update from Cleveland Clinic
Journal posted on July 12, 2016
Firstly, I want to say that I'm sending all of my prayers to all of those that are having surgery this week.
The long awaited phone call from Cleveland Clinic finally came. The sweet nurse on the other end of the line explained that Dr. Gillinov and his team did not think it was time for surgery yet, but that it's definitely in my future. When it's time for surgery, he will be the first person I call. I have so much respect for someone that says it's not time. The surgeon I met with in Atlanta, was ready to do cut me open that day.
Turns out echocardiograms aren't always what they seem. This came as no surprise to me; however, I was surprised by how poor it was. Dr. Gillinov suggested that I travel to Cleveland to have a repeat echo there, but I turned down the offer since his opinion matched up with that of my Cardiologist here. The echocardiogram isn't all that it's cracked up to be and beyond diagnosing my cardiomyopathy and bicuspid aortic valve, it hasn't been helpful. Dr. Gillinov thought that my aortic valve only has mild stenosis.
Cue the MRI. Meanwhile, I get my report back from my cardiac MRI and it corroborates everything Dr. Gillinov and my cardiologist said. The MRI showed measurements that were far different from the most recent echo. The good news was that my bicuspid valve is only mildly stenotic. The bad news is that my heart is still severely, severely, severely enlarged.
So where do we go from here? Well to an EP of course who is suggested that I have PVC induced cardiomyopathy. It's a rare form of cardiomyopathy that can happen when a person's PVC burden is greater than 24% of total heartbeats a day. In my case, PVCs make up around 30% of my total heart beats; thus, the cardiomyopathy may be PVC-induced. That is the best case scenario because it means that diminishing the PVCs may allow my heart to heal and the mitral valve leakage to improve. The worst case scenario is that I have something called arrhythmogenic right ventricular dysplasia, which is a progressive disease where fatty cells invade a person's healthy heart cells, which causes arrhythmia and heart failure. The progression of the disease is unpredictable and it's also hard to diagnose.
So I now realize why my heart is so unique. I have two separate, unrelated issues in the bicuspid valve and the arrhythmic issues on the right side of my heart. Got the short end of the genetic stick it seems.
I met with the EP yesterday and he confirmed the PVCs are originating on the right side of my heart. They aren't in the common location of origin, and he won't be able to pinpoint exactly where they are coming from until he looks around. He gave me a 70-80% rate of success for eliminating or greatly reducing their number. He said an ablation is absolutely necessary and waiting is out of the question.
So on August 2, I'll be having an EP study and an ablation. In a way, I'm excited and I'm hopeful, but I am also trying to not get my hopes up. Seems like good news is hard for me to come by these days. He's going to do 2 things... (1) an EP study to try to induce ventricular tachycardia and fibrillation and if he can induce I'll be fitted with a shiny new defibrillator and (2) ablate the PVCs but if they are in a risky location, he won't be able to. I pray he won't be able to induce a dangerous rhythm and that he's able to successfully eliminate the PVCs.
The ablation freaks me out a bit. Would love to hear from anyone that's been through one about what I can expect. Also, appreciate any prayers and good thoughts for the procedure on August 2.
This bad boy is about to make an overnight journey to Cleveland. And the wait begins.
Being tossed around like a hot potato
Journal posted on June 9, 2016
The good news...
My heart has gone from severely dilated to within normal range...this news is amazing to me. My mitral valve regurgitation has done a 180 towards the good side. This is presumably from the heart shrinking. Also amazing to me.
Now onto the shocking part...I got a hold of my report and there it was, in the midst of all the good news... my aortic valve area is .66 cm2. What in the world? Anything below 1.0 is severe and anything below .6 is critical. I don't understand how this is being ignored? Perhaps cause I'm seeing a cardiologist that specializes in cardiomyopathy and not a valve specialist? Is it similar to having breast cancer and having a foot surgeon review your mammogram? I'm shocked that he doesn't seem to be concerned at all. I feel like I'm teetering on a very thin line here.
After reading that report...I was actually scared of waiting to have surgery. I've spent so much time trying to convince myself that it needs to be delayed and now I'm scared that I won't have it soon enough. I'm so excited that my heart has shrunk and my mitral valve is better (yay!), but it's being drowned out by this new fear. I went back and looked at previous echos... June 2015 - .9 cm; September - 2015 - .72 cm. The valve is getting smaller and smaller and quickly!
So I made some phone calls and now they're talking about an ablation for PVCs, a heart failure/cardiomyopathy specialist, an ICD - the whole thing...BUT no one is talking about the valve that appears so obvious to me. So I've made an appointment with an EP to address the PVCs and I'm sending my stuff to Cleveland Clinic tomorrow (I finally have it all together).
Praying for all of you that are recovering and have up coming surgeries! Stay strong!
I just hope I haven't waited too long... I'm no doctor but wow...just wow. That is all.
Fun trip to Cleveland! A really underrated city, in my opinion.
Waiting a little longer...
Journal posted on June 6, 2016
Ironically, I had to go to Cleveland for business this last Thursday. As my plane touched down in Atlanta, I wondered how long it may be before I had to take this trip again, but not for business. On my last journal post, I mentioned that I had an echo (a little over a week ago now). Well when I was leaving Cleveland, I decided to call the cardiologist to ask if he could give me an update over the phone (otherwise, I would be waiting 4 weeks until I see him). As I'm wheeling my bag through the airport in Atlanta, I get the call.
Here's what I found out:
1) The ejection fraction (heart function) is still around 45% - it has not changed in 6 months.
2) The mitral valve is no longer borderline with moderate-severe leaking. It's now just moderate. Presumably from my heart shrinking, but he did not mention this. He did say, he would absolutely not touch my mitral valve at this time.
3) The aortic valve is definitely bi-cuspid; however, he's not able to get a good picture. He said he thinks part of the heart muscle is getting in the way of the picture and making it look more severe than it actually is.
All in all this is good news, but I'm hesitant until I see a copy of the report and can see the numbers for myself. He said he would like to either try anti-arrhythmic medicines or an ablation for the 26,000 daily PVCs I'm having. He seemed very confident that if we get those under control, my heart will continue to shrink and the mitral valve issue will go away (assuming the valve also shrinks). Thus, I would only need surgery on the aortic valve some day in the future. If what he says is confirmed by the reports, then I think I this is a good game plan! I would love to only need one valve fixed in 10 years versus 2 valves fixed right now.
Although an ablation scares me, I would rather have this procedure then be on antiarrhythmic medicines since I'm young and they are not good long term. So it looks like I may have to wait a bit longer to see if this new idea works. Praying it does. I will update after I get my MRI results and speak with the EP. Thanks for all the prayers!
Today I'm feeling very refreshed from an amazing vacation. A week ago today, I sat on a private island that was only accessed by boat with my family. The gentle lap of the crystal clear waves, the salty ocean breeze, and the delectable taste of freshly fried grouper (that was speared by our boat captain) is not yet far from my memory. My baby girl slept in her hot pink tu-tu bathing suit basking in the same peaceful moment as I. My son ran around splashing in the warm waters with his beloved bucket of toys in tow. My husband and my parents chatting away as we enjoyed our temporary reprieve from this fast-paced crazy life.
I will say, that not once during my whole time in the Bahamas did I think of my heart. Not once. We were completely disconnected. It was an amazing feeling. When I got home I wondered how long I would've waited to see a cardiologist if I had not had this weird intuition that something was stirring in my body.
This morning I added onto my list of echocardiograms (about 11 in the past 2 years). This one is a big one, which will be followed up by an MRI on June 17th. This is the one that gets sent to Cleveland Clinic for review.
Part of me hopes that magically my heart will have shrunk and my mitral leakage will be deemed mild (which would mean my double valve surgery could be delayed), and while it could happen, I'm certainly not counting on it. After my last echo, my cardiologist exclaimed that my heart almost appeared to be functioning as normal and that my LV had shrunk by .8 mm (I think...maybe cm?). Hopefully the trend will continue. However, I feel the lightheadedness often in the Georgia heat and my muscles ached as I sloshed my way through uneven sand. It could be these medications I am on, as well.
A new girl that I did not recognize performed my echo this morning, she announced that she was excited for the challenge. I laid there for an hour with the low hum whirring in my ears attempting to read her face for any type of expression. Got nothing. I closed my eyes and drifted off to my happy place from last week and that's where you will find me in 3 weeks when they do the MRI and in 5 weeks when I hear the results. This is the memory I will cling to when I finally mail my package full of notes, images and messages for the team at Cleveland Clinic to review. No matter what news I get, today I am so thankful and happy that I am here to be present in these moments.
"If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me." Psalm 139:9-10
So often I wonder why my heart issues must be so complicated? My cardiologist never seems to forget to remind me that I'm not a "normal case." So a bad valve is not normal and I'm not normal for someone with a bad valve. I get it, doc. Thanks!
It's so hard to be positive when you keep getting bad results over and over. The most recent being today. I received the results of a 48 holter monitor. It showed 26,000 PVCs a day and almost 1,000 pairs. Yep, you read that right. Bad I know.
The crazy thing is that the last night on the holter monitor, I accidently doubled up on my beta blocker (which I've never done in the 2 years I've been taking it). Well what do you know...my PVCs increased by 2,600 in a 6 hour period after doing that. Maybe it wasn't an accident after all as now it seems that the beta blocker could be causing some of my issue?
My heart beats very slow (we are talking crazy slow) by going into the 30s at night. In fact my max heart rate during this 48 hours was 94. This is even after walking through a zoo for the afternoon.
Obviously, the medicine isn't causing my PVCs but now there's a new theory. Maybe the medicine is actually making them worse. The doctor said sometimes when the heart beats to slowly, it allows those escape beats to sneak in.
In the last 2 years, my heart has been relatively stable, yet my PVCs are getting worse. The only change has been an increase in the beta-blocker. So now he is switching me to a new one to see what happens. This one doesn't suppress the heart beat nearly as much.
In other news, he did schedule an MRI so once I have the results of this in 5 weeks, I will be sending my information to Cleveland Clinic. He keeps trying to talk me into staying in Atlanta, but I really want to go with the best of the best.
Cheers y'all! Hope everyone has a wonderful weekend and that everyone that had a surgery this week continues to recover well!
This made me smile.
While not a cure for anything, it can sure make me feel a thousand times better!
Update posted on...
April 26, 2016
Well I was hoping that my last visit to my cardiologist would move things forward for surgery. I really wanted to have an updated echo or TEE to send to Cleveland for their review of my records. However, my cardiologist does not seem to be ready. He put me on another holter monitor to see if the increase of my medicine resulted in a decreased number of PVCs. We've tried 3 times and it hasn't happened yet. He is still hoping that by reducing the PVCs, my heart will shrink, the mitral valve leakage will lessen and I can hold off on surgery for a bit. If the holter monitor still picked up a ton of PVCs, he's going to try antiarrhythmic therapy, which scares me. Those meds are nasty! He says I will have to be hospitalized for observation if we go that route. Yuck - that doesn't sound reassuring.
I so badly want to get my valves fixed and put this all behind me. Guess I have to wait a little longer. I go back in 2 weeks for the result of the holter monitor. If he doesn't agree to a new echo at that time, I'm going to go ahead and send all my stuff to Cleveland Clinic as is for a second opinion.
In the meantime, you can find me on a sandy beach in the Bahamas with a margarita in hand. I was planning on scuba diving with sharks and I was so excited but after researching it; it's probably not a good idea until I get the valves fixed. There goes my real-life metaphor about taking a leap of faith in order to see the beauty that awaits me. However, I'm excited to spend good quality time with my family given what the next several months will probably bring. Nothing a little salt water and sand can't heal.
Tomorrow I meet with my cardiologist for a check-in...I seem to have them every 6 weeks these days. I remember him telling me that I would know when it's time to have my valve replacement and somehow in the last 6 weeks, I've realized that it's time. I don't know what changed, but a sense of peace has enveloped me. I'm no longer asking "why me," but rather "what am I supposed to be learning from this?" I think I've realized that this experience has taught me to (1) slow down (2) enjoy every moment with my family and friends (3) that I'm stronger than I thought and (4) worrying does nothing. So tomorrow, I plan to tell the cardiologist that I'm ready. I am. I'm ready to put all of this behind me and move on with my life. I'm ready to be rid of the anxiety and the symptoms (whether they are from my heart or the lovely medicine). I'm ready to be the best me. I suspect that tomorrow, I will have a date for a TEE and once I have those results, I plan to send them for review by Dr. Gillinov at the Cleveland Clinic. I have a feeling that things will move rather quickly after that point.
I'm traveling to Cleveland for work on Sunday and I'm excited to explore the city where my heart will be fixed and a new kind of birthday will be celebrated.
Prayers to all of those having surgery in the next couple of days!
Does anyone have experience with frequent PVCs along with their valve disease? I know they use the MAZE procedure to treat AFIB during valve surgery, but I'm wondering if there's a similar type procedure for PVCs? The reason I ask is that I have enough PVCs a day to cause my heart to enlarge so if I'm fixing the valves, I would like to fix everything, including the PVCs. Maybe this means a subsequent ablation? Would love to hear from any of you that have experience with this. Thanks so much!
Praying for all of you heart warriors having surgery next week. Hope this weekend is one of relaxation and peace.
I've seen people post about adult coloring books during recovery. I found this at Hobby Lobby, which I plan to bring with me to the hospital. I thought this would be more meaningful and encouraging than a regular coloring book so I wanted to share.