Heart Surgery: Preparing for Round Two

Faith.  It is a word that has settled deep in my mind and my heart these past years.  Faith and Trust for all of the unknown things I am facing in life- questions unanswered, reasons behind the why, and in decisions made that affect others.  As I once again face a crossroads of decisions and questions, I have again clung to my Faith and pray for guidance daily.

This past March, I was sitting in my garage after working out, which as a cardiac patient (whose heart rate was not to exceed 130 max) only consisted of power walking, light elliptical training, strength bands, and recumbent bicycling.  I was talking to my sister telling her I had felt short of breath the last few days similar to how I felt before my open heart surgery last June.  I joked with her about COVID and my shortness of breath since the pandemic had just started to affect our area, even though I knew that wasn't what was causing it, and told her I was going to see if maybe I was just tired from work and if it would go away before messaging my doctor. I gave it about a week and then sent my doctor a message that I had been more tired than usual and experiencing shortness of breath, but hadn't noticed anything else out of the norm.  That was on a Friday and they wanted to see me the following Monday.   

I walked over from my office in the NICU late that afternoon, and he listened to me and looked over at his nurse and asked what the ECHO schedule looked like that day.  I was sent over for an emergent ECHO, which showed that both my mitral and tricuspid valves were severely leaking.  I cried the entire way back to my manager’s office where I broke down in tears over the new unknown future I was facing.  I had an urgent TEE done a few days later (which for those of you who don’t know, a TEE is a transesophageal ECHO which provides better images of the heart than a traditional ECHO.  You are either sedated or asleep during the procedure in which they put a scope down your throat with a camera on it to capture the images).  The TEE actually showed that my valves were not leaking as severely as the images showed on the regular ECHO.  I was elated.  My medication was adjusted, and although I knew I would indeed need surgery again at some point in the future, I was hopeful my body could hold off as long as possible.  My shortness of breath improved some on the higher dose medication and I altered my exercise routines to keep my heartrate lower than 120.   

But then in late June, I was riding home in the car while Stephen was driving and my vision began to tunnel in at the edges.  I put my hand up on my neck to feel my pulse and did not feel anything. I never felt my ICD (implanted defibrillator) pace or shock, but the last time my vision tunneled like that had been over 3 years ago when I was pregnant with Owen and had experienced an episode of Vtach.  I downloaded my device with my remote machine at home and called the clinic the next day.  The download confirmed I’d had a 14 beat episode of Vtach.  From that point, I had labwork done and another ECHO.  The ECHO again showed severe regurgitation of both my mitral and tricuspid valves, and the valve changes were thought to be the cause of my vtach.  Stephen and I met with the interventional cardiologist I see and she gave me a lot of information.  She also wanted to repeat the TEE I’d had done in March.  This would be my 4th TEE in the grand scheme of it all.  The TEE was scheduled for July.   

In late July before my TEE, my husband got COVID.  Before anyone judges, we wash hands, wear masks, use hand sanitizer, socially distance, and ALL the things you are supposed to do.  We were supposed to celebrate my grandmother’s birthday on the upcoming weekend, and on the Wednesday night before, he told me that his chest felt kind of tight, he’d had a headache, and he had gotten winded while walking up a flight of stairs.  I told him that was my norm and I wasn’t worried about it.  He had no cough, no fever, no sore throat, nothing that would point to COVID.  But because we have easy access to testing and were supposed to go see family that weekend, I setup an appointment for him to be tested.  When he went on Friday to be tested, he almost cancelled because he felt fine.  I told him to just to go ahead and do it so he wouldn’t worry about it and also because we were going to go see family.  Well, Saturday morning at 6am he woke me up and told me he was positive.  In a whirlwind, I had him situated and out of our house in just a few hours to go and quarantine for the next 10 days in his parents’ basement.  That Saturday night, he lost his sense of taste and smell but overall his symptoms were extremely mild and besides fatigue, headache, and congestion, he felt better by mid-week.  Meanwhile, I cleaned my ENTIRE house, but it was too late.  On Monday, I woke up with a slightly sore throat and Tuesday I had a low grade fever, body aches, and nausea.  And on that Thursday, I tested positive as well.  I never had a cough, but I did have increased shortness of breath above my norm.  I threw everything I could think of at the virus in regards to supportive care, and I did not have go to the hospital, for which I am so thankful.  Needless to say though, my TEE was delayed until late August.  And for those who may wonder, yes I had all 3 kids at home with me the entire time.  I believe 2 of the 3 did get the virus, but I chose not to have them tested since it would be traumatic to them and would not change their treatment.  One had symptoms that lasted 36 hours and one had symptoms that lasted 24 hours.  We all stayed quarantined at home together until I was cleared to return to work.

Right before COVID happened, I had already started collecting my records and information for a formal second opinion.  When researching my options for surgery last year, I had reached out to Cleveland Clinic and consulted them on my repair surgery.   I knew I would be reaching out to them this time too.  When I knew my valves were leaking again, I started doing my research on what I should do next and where I should go. They are the number #1 heart center in America.  Many people may wonder why I didn’t go there to begin with, but at the time many different factors played a role in my decision to have my surgery done locally.  I received multiple positive opinions on the local surgeon I had chosen and felt “lucky” to be able to have it locally and not travel.  A big part of my decision was also based on the fact that I was experiencing around 300 PVCs an hour then, and I didn't know how my body or my heart would react to such a major surgery, especially with a history of cardiac arrest.  Simply put, I was scared and extremely fearful to travel 10 hours away to a care team who didn’t know me on a personal level, and that, coupled with some other factors, solidified my decision to have surgery locally.   

Knowing what I know now, I don’t know if I would have had surgery locally.  But as a friend of mine who is living with metastatic breast cancer recently told me, she also had to have a “re-do”.   Now multiple surgeries later, she uses her experience to help others.  She told me, “We make the best decision we can at the time with what we know.  When we know better, we do better.”  And she is right.  Her words have helped me move past the what ifs and onto the okay this is what we are doing now. 

Cleveland Clinic reached out to me while I was out with COVID.  The surgeon wanted to try for a re-repair of my valves which brought up a lot of questions.  I setup a formal appointment to meet with their cardiology team in late August.  The lyrics of the song “Trust in You” by Lauren Daigle ran through my mind constantly.  Trust is hard when you don’t know what you are facing, when you don’t have answers, and when you are trying to make plans that will shape decisions for the rest of your life.  I don’t believe many 37 year olds spend their nights not sleeping because they are researching morbidity statistics in relation to mechanical valves, amount of heart surgeries one can have in a lifetime, valve on valve replacement procedures, and ICD extractions and relocations among many other things.  The things I prayed for the hardest prior to my appointment in Cleveland were clear answers and guidance on what to do.  And I got it in a couple of sentences from the doctor there. 

I had my TEE done locally in late August.  They actually put me to sleep for the first time instead of just heavy sedation, and it was the BEST one I’d experienced yet!  The TEE showed moderate to severe leaking of both my mitral and tricuspid valves, and they both appeared myxomatous, which is degeneration of the valve tissue.  I once again was left with more questions than answers though, and Stephen and I flew to Cleveland the next day.  Cleveland Clinic was exactly what I had hoped it would be for my appointment.  The hospital runs like a well oiled machine and you can easily see why patients rate them so highly.  Within minutes of meeting the new cardiologist, I had my answers.  He was very straightforward, definitely did not mince any words, and even though what we discussed was hard to hear, I appreciated the candidness as it was exactly what I had prayed for and needed.  My repair had been done very poorly and nothing was going to fix my heart but another surgery.  He wanted to discuss everything with the surgeon in Cleveland to see if he thought he would be able to re-repair my valve or if I needed to go directly to a replacement.  If a replacement was going to be my best option, then I would potentially want to wait until my valves worsened even more significantly since replacements only last a finite number of years.  Since I am young, we discussed a mechanical replacement as my best option should it need to be replaced.  This would also mean blood thinner medications for the duration of the mechanical valve, which requires diet and lifestyle modifications.  We left Cleveland and waited for the surgeon’s office to get back in touch. 

The following week the surgeon’s office called and they did want to try and do a re-repair of my valve.  So here I am, scheduled for my second open heart surgery on October 13th, exactly 16 months and one day from my June 12th, 2019 surgery.   I am anxious, stressed, and yet hopeful that this surgery, regardless of re-repair or replacement, will provide me with a heart that pumps efficiently for at least the next 20+ years.  I doubt this will be my last open heart surgery, but hopefully it will be the last one for a long time.  I am not sure what all will occur during the surgery.  I know my mitral valve will be re-repaired or replaced and my tricuspid valve potentially repaired.  Also, my current ICD has a lead that runs through my tricuspid valve which is secured into my right ventricle, so it may be extracted and replaced with a device that doesn’t have a lead going through my valve.  All of this will be discussed with my Cleveland team of doctors the week before my surgery and some decisions will not be made until they can physically see my heart.  We will be flying up on Oct 5th to prepare- I will have to have a CT scan, chest xray, labs, cardiac cath, meet with the surgeon, meet with electrophysiology, and get TWO covid tests.  The good news about the covid tests is that they do not do the deep nasal swab test so it shouldn’t be as bad.  I am praying that I will test negative by this time since I’ve read the virus can stay in your body in fragments for 90 days.  If I test positive still from my infection in July, I’m not sure if they will proceed with the surgery or delay it, but they do know I have had it. So, I’m hopeful that the surgery will happen. 

Please keep me and my family in your prayers in the coming weeks.  My daughter is now 10 and understands what is happening.  We have had a few crying sessions over the last few weeks since I set my surgery date.  I know my children will be well taken care of by grandparents while we are in Cleveland for at least 2.5 weeks, but I know it will still be hard on everyone.  When I had surgery last summer, I let my daughter wear my cross necklace that I never take off.  Stephen gave it to me for my birthday the year we got engaged.  I wore it on my wedding day and had it on the night I had cardiac arrest.  She wore it the entire time I was unable to during surgery last year, and she will be wearing it again this time.  I’m hoping it will bring her some comfort.  The boys seem ok, and Matt's understanding is that I am going to get the "doors" in my heart fixed again so they will close correctly.  But I think Owen will have a hard time when I come home and cannot pick him up for awhile again. Pray they all stay healthy while we are gone.  Stephen will be the only person in Ohio with me for the duration of the surgery.  Due to COVID, I can only have one visitor and he cannot stay overnight with me but can visit me the majority of each day.  Thankfully, there is a hotel that connects to the hospital there and that is where he will be staying.  Please pray for him since he will be alone while he waits during the surgery, digests information they tell him regarding my heart and surgery, and especially on the nights he has to leave me at the hospital.  I was told by the Cleveland team that recovery from a second surgery is typically longer, but if all goes well and I progress like an average patient, we should hopefully be flying back home around 10/22.  

Overall, I am ready to be on the other side of this surgery and on the road to recovery again.  I am truly grateful for every day and opportunity given to me.  It’s crazy all the twists and turns life brings, but perhaps I will be able to help someone else one day and that gives me a sense of purpose through all of this.  I am going to remain faithful over fear and trust in the plan that God has for my life, even when it’s hard.  Please keep us in your prayers over the next few weeks!!

 

Lamentations 3:21-24 

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness.  "The Lord is my portion," says my soul, "therefore I will hope in him."

2 Corinthians 4:16-18

"So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."  

 

 For more information on Mitral Valve surgery, you can visit https://my.clevelandclinic.org/health/treatments/17240-mitral-valve-repair