Lindsay's Journal

I hope you just sang that like the song from the 80's!

I am one week away and it's going to be a busy one.

Today I had a dentist appointment and I stop taking certain medications. Tomorrow is my pre-op appointment at the hospital and then a CTA. Thursday is oral surgery to get my dental clearance and then Friday is my last counseling session before surgery.

Tonight was special though...I went to my last bible study for a bit and I go to church about 45 minutes away from where I will be recovering with my parents so I know it could be several weeks before I'm able to go to church in person again and see some of these wonderful women. They took the last several minutes of our study to pray over me tonight and just loved on me. Even when they have their own stuff going on, they remembered me. I am so humbled and grateful for this community of women surrounding me.

You see, one of my prayers as of late has not been for my physical healing and recovery but my emotional and mental recovery. God has made it abundantly clear that He is with me through the physical surgery and recovery. Honestly though, I'm nervous about feeling isolated or lonely during the recovery. I won't be alone as I will have my parents and family around during the holidays and I am so thankful that they are committed to helping me recover. But a girl needs her friends too!

I've tried to take Adam's advice and make sure my support people know what I need from them during this time especially if they ask and I just tell them the only thing I need is themselves. Visitors, friends, family, quality time.

In other areas, I'm gathering my "communication plan" for my family of notifications that need to be done the day of surgery. Getting my Spotify playlist together that I want playing in my room 24/7...lol...I'm starting to pack and gather items that I will be needing at my parents over the next several weeks. My parents and I are also planning on staying at a hotel closer to the hospital especially since there is the potential for bad weather this next week.

It's getting closer and in several ways, I feel ready and at peace...in other ways I just don't really know what to expect but sooner than later, I'll be on the recovery side!!

So I have officially entered the pre-op time zone and it is speeding along like a high speed train! I could focus on the negatives and honestly, I just erased what I started writing because it sounded so negative. In reality, I am thankful beyond words.

God continues to show up in the little areas - I got some good news about my finances during my time off work and thank the Lord we are required to get a dental clearance before surgery that caught something I only would have known about through an x-ray.

Between staying busy at work, trying to get paperwork and appointments completed, planning ahead for Christmas, and moving in with my parents for 2-3 months, I haven't had much time to process my feelings or emotions this week. But it will catch up to me on the weekend. And I will process, and feel, and maybe cry a little. And that is ok. Jesus cried too even when He knew Lazarus would be resurrected.

There are still so many unknowns and while my flesh wants to quit, my spirit and heart are focused on my Creator...my loving Heavenly Father that formed me in my mother's womb. Who knew I had this defect before I did and who will use it for His glory.

It kind of reminds me of when Simon Peter walked on water. When he kept his eyes on Jesus, he had enough faith, hope, and trust to walk on water. When he took his eyes off Jesus, he began to sink. If I think too much about the details of what I'm about to walk through, I can feel my anxiety rise over my faith and trust. If I keep my focus on Jesus through worship, prayer, and the Word, the miracles He has already performed, and is going to perform through this, that is the only way I get peace.

There is a fine line between being informed and "knowing" too much. I need to be informed but will continue to trust God with the things I don't need to know.

Today was my consult with my surgeon, Dr. Marc Gerdisch. It did not go at all as I expected it too, but God showed up and showed out!

I honestly cannot say enough good things about Dr. Gerdisch and his team in my initial visit today. Not only were they friendly and personable but they were also sensitive to my feelings and did not rush me through the conversation. I wasn't expecting to meet his nurse practitioner but Cindy is just as great and I'm so thankful to have such a wonderful team on my side.

The first thing Dr. Gerdisch said when he walked in was that I had a little bit of a complex and unique situation. Now I'm an Enneagram 4 so it's not uncommon for me to feel different from everyone else but just sometimes I would like to feel normal and ordinary...LOL

He then went on to explain that my bicuspid aortic valve is a type 2 which means that there is a second fusion causing the narrowing and not the calcification. It was great news that my valve is actually in decent shape so he was really torn on if replacement would be the best path for me. He sat there and said "I'm trying to think if you were my daughter, what would I do or what would be best." Isn't that an amazing surgeon?

He ultimately gave me three options to choose from.
1. No surgery right now, keep monitoring stenosis, would still have symptoms and I may have another couple years before needing replacement but obviously no guarantee.
2. Valve replacement and aortic root enlargement - Mechanical OnX valve and no option for a tissue valve.
3. Possible aortic valve REPAIR by creating a "pure" bicuspid aortic valve keeping my native valve intact and postponing valve replacement surgery for several additional years, maybe even 10-15 years. Symptoms would be alleviated as well.

Ya'll...He said the word REPAIR for a BICUSPID AORTIC VALVE!!!

For those that don't know, if you Google treatment for severe aortic stenosis for a bicuspid valve, your search will most likely turn up aortic valve replacement...there is usually no mention of a repair possibility. If I was with any other surgeon, the word "repair" would never even be a thought! We have been praying for a big miracle and I wholly believe this is an answer to that prayer!

Another wonderful thing about Dr. Gerdisch is that not only is he confident that repair could be a viable option for me but he is wise enough to not force it if he opens me up and feels differently once he's in surgery. If he looks at my valve and doesn't think it would be best for me afterall or even if he does the repair but doesn't get the result he is looking for, he will just go ahead and replace the valve as discussed in Option 2.

He told me it was ultimately my decision and that he wanted to make sure I was comfortable with the path and that if I felt strongly about having surgery or not having surgery, that I could choose. I advised him that while not having surgery would be ideal, the fact that I would still have symptoms made me nervous that I would not be aware if they were getting worse as they gradually progress. Also, I wasn't sure that it would really give me the extra time that would be beneficial. I could end up needing replacement within months or even a year. I just didn't feel that was the best choice for me.

I told him I loved the possibility of a repair that would alleviate my symptoms and could potentially give me several more years before replacement. That would be my choice even with the understanding I could wake up to a replacement instead.

I chose open heart surgery.

Some may say I'm a little crazy for making that choice when I had an "out" but I firmly believe God has ordered my steps to this point and I believe He is extending an invitation for me to trust deeply and walk by faith as He orchestrates a miracle before our eyes.

Hi All! I'm gathering questions for my first surgeon consultation on November 26th. At this appointment I believe we will be discussing my surgical options, valve options, confirming tentative surgery date and possibly scheduling pre-op testing. I will be having aortic valve replacement surgery. If you have had this surgery, what is one question that you wished you would have asked ahead of time? What is a question that maybe isn't as common or that I may not think about asking? Thanks for your input!

I hope you read that title in the voice of Joey from FRIENDS..."HOW YOU DOIN'?"

So obviously, this is all a lot to take in and a lot to deal with. For the most part I feel like I'm doing OK considering there are still a lot of questions and details up in the air.

When I'm telling people about it or talking with medical professionals, I am removed emotionally for the most part. It's business and I'm making business decisions. However, when I'm alone in my car, at home, or after a conversation it will sometimes hit me - the depth and the gravity of what I'm about to go through. Sometimes it feels surreal and sometimes it feels like it's happening so fast.

I have also told people that in a way I feel like I'm grieving. Maybe not in the traditional sense but life as I knew it 2 weeks ago will never be my path again. The plans I had for the next year are null and void. I see God's providence of his intentional and intricately orchestrated details that led me here and I have seen his hand over this situation since my original diagnosis. I trust His plan is greater. I have peace that He is walking with me. Yet, just like Jesus wept and grieved for Lazarus even when He knew Lazarus would be raised from the dead, I am giving myself permission to grieve even though I know God is with me. The important thing is not getting stuck in the grief.

Sometimes I wonder if I'm letting myself "feel enough", especially if I'm not crying when maybe society says I should be and sometimes I feel like I'm letting myself "feel too much" because sometimes the floodgates open and they are hard to close. It's a fine balance and sometimes I just don't know how I feel either.

Honestly, the waiting game sucks. I'm starting to have stress dreams and had a dream last night that my surgery got moved up sooner than even Dec 16th. My acid reflux is being triggered because my body is feeling stressed/anxious so my stomach has been a mess for a couple days now. Oh and did I mention I'm on physical restriction? No working out, lifting heavy things, walking up a bunch of stairs (I currently live on the 3rd Floor of a Walk-Up Building), or just minimal walking in general. I know the restrictions are for my best though.

One of the things that made me nervous about not having a referral is that historically it takes months to see the doctor if you don't have one. After I took a solid nap when I got home from my TEE, I woke up enough to call Dr. Gerdisch's office and see if I could get an appointment or at least send my records over. The person that answered the phone said they needed a referral for billing purposes and told me to check again.

I made a call to my PCP to see if they could give me a referral, however, in the meantime I reached out to my friend's sister (who I hope will become a close friend as well because of this process). I asked her if she had any tips of how I could get an appointment if I couldn't get a referral.

One thing I didn't mention in my last post about my friend's sister is that she only works for Dr. Gerdisch part time now due to needing to be home more with her kiddos. Therefore, she only picks up shifts here and there. When she texted me back, she told me she was actually at the hospital on shift that night and she would see if she ran into anyone from the office.

A few minutes later she texted me back and told me she ran into Dr. Gerdisch himself in the hallway. He gave her a phone number for me to call and speak with his assistant, Nicole and to tell her that "Gerdisch said to send over reports and films."...I literally started crying when I read the text. I told her I would do that first thing in the morning.

The providence of God was so evident in this moment!

I got in touch with Nicole on Friday, November 8th. We penciled in my surgery date of December 16th. She said their surgery schedule is little crazy during November and December and that it's easier to move me later than to try and fit me in sooner. We also scheduled my first face-to-face with Dr. Gerdisch on November 26th.

I took my TEE disc to their office on Friday afternoon and picked up new patient paperwork in addition to Adam Pick's book "The Patient's Guide to Heart Valve Surgery". I read it front to back on Saturday and started making my list of questions. 35 and counting at this point. I also found this wonderful resource and community through that book.

The next step at this point is getting a call from Dr. Gerdisch and his office after he looks at my chart and records to have our initial discussion about my surgery.

If you can't tell by my corny titles, I like puns and a good "play on words". On November 4, 2019, I met with my cardiologist, Dr. Paleru. She read my 2-D echo report and was just as concerned as my PCP. She helped explain a few of the indicators that they were looking at to me and told me the next step would be another transesophageal echocardiogram (TEE) to confirm the severity of the aortic stenosis before surgeon referral. What I loved most about my appointment with Dr. Paleru is that she was empathetic when I got a little emotional but she was also very honest with me about my condition and what the future most likely held...which I greatly appreciated and was oddly comforted by. She asked when I wanted to do my TEE and I asked her when she wanted me to do my TEE. She said Wednesday or Thursday...I said "This Week?"...and she said Yes...OK Then.

Between Monday and Thursday, November 7th (when my TEE was confirmed for), I started researching surgeons. The way my cardiologist talked on Monday, I felt she was leaning towards surgery and the TEE was somewhat of a formality for insurance purposes and referral purposes. Since my cardiologist was going to do the TEE herself, I knew there would not necessarily be a waiting period for results. My dad was going with me and I needed him to advocate for me if she wanted to do an immediate surgeon referral.

I started going to a new church about 2 years ago and one of my closest friends there has a sister who is a nurse. Come to find out, she is a cardiac nurse and works for Dr. Gerdisch who specializes in heart valve replacement surgery. She highly recommended him. I started looking into his credentials and I just felt at peace about the idea of him doing my surgery. The night before my TEE, I had a conversation with my dad about my surgeon wishes and asked him to advocate for me (because I would most likely be asleep).

The morning of my TEE arrived and honestly, it couldn't have gone better. The nurse got my IV on the first try and almost a week later, there has been no bruising! That in itself is amazing! The nurses were wonderful and attentive. I had an anesthesiologist who monitored my meds so I didn't wake up during the procedure. Best of all...I didn't have to drink the nasty thick numbing medicine. Instead, my cardiologist just swabbed my throat a few times. It still tasted gross but was not nearly as bad as the first time.

When I woke up, there were bringing my dad back to my room and I started grilling him with questions about how the procedure went. He told me that Dr. Paleru told him an area less than 1.0 is considered severe aortic stenosis and per the TEE, I was at .90 so she wanted to do a surgeon referral. He told her I wanted Dr. Gerdisch and she said "He is the best, however, I can't refer you since he is with a different hospital network. I can give you a copy of the TEE that you can take to his office though." I was somewhat disappointed she couldn't do a referral but I'll take it to have the best surgeon.

October 31, 2019 I went in for a standard 2-D echo. I didn't feel nervous because I wasn't expecting anything major to show up. I started getting a little nervous when my blood pressure read 140/100. When I was with my PCP less than 1 month earlier, it was only 125/85 and honestly, that was the highest read I've ever had.

Then the tech actually started the echo. I was watching intently trying to figure out what she was seeing or make sense of it. If you have ever seen a baby ultrasound and not been able to identify where the baby was or what was a foot and what was a face, that's pretty much what a heart echo is like. I had no idea what I was looking at.

The next thing that made me a little nervous was when the tech turned on color to look at how blood was flowing. I was seeing the entire spectrum of color which I knew was probably not a great sign. The tech said nothing and gave me no indication of what she was seeing. I don't know how they do it?!?

I felt like she was more detailed in the echo than I remember my last one being but after about an hour, it was over and I was on my way to work. I had no idea when I would get my results and had a plan that I would call my PCP on Monday if I had not heard from them yet.

Friday, November 1, I went to a counseling appointment I had and within 20 minutes of leaving my appointment, my phone was ringing. I was actually in the Chick-Fil-A drive thru getting breakfast. My PCP's nurse basically read a note from my PCP word for word.

"The echo showed a bicuspid aortic valve." (Yeah, I already knew that) "However, it also showed severe aortic stenosis which is very concerning to Dr. Hall and she would like an immediate referral with Cardiology. They will call you to set up an appointment. Any questions?"

The only words I heard in that moment were SEVERE aortic stenosis...(what does that even mean exactly?)...and VERY concerning.

I almost couldn't hold back the tears until I got off the phone. My brain was fuzzy and shocked. I had no idea what this meant or that my life would look incredibly different so fast. Before the end of the day on Friday, November 1, Cardiology called me and I had an appointment for the following Monday with a FEMALE cardiologist (Yay for answered prayer...remember I was looking into this in "The Next 12 Years" post).

The first couple years after being diagnosed with a bicuspid aortic valve I continued to get check-ups with my cardiologist until he made me feel like I was an inconvenience. I don't remember him ever asking or telling me when to follow-up and one time I was there I told him I was getting lightheaded some and he basically told me it was stress-related. So I thought that if my cardiologist didn't feel my check-ups were necessary or important, then I wasn't going to waste my time and money.

All of a sudden, we are 12 years post-diagnosis and I feel pretty stable financially, work-wise, medical insurance, etc. I told myself after I sold my house this past summer that I would find a new cardiologist and get checked at the beginning of 2020 (so my deductible is met at the beginning of the year of course).

I knew after my experience with my last cardiologist and just doctors in general, I would feel more comfortable if I could find a female cardiologist, although, those are far and few and rare to come across. I started the search but it felt overwhelming. I was at my PCP's office for a physical and she asked when the last time I had an echo...it had been when I was originally diagnosed 12 years ago. She asked if I wanted to go ahead and get one. I asked if a 2-D echo would be sufficient or if I would need another TEE and she said that a 2-D can show the flow of blood which is what they primarily need to see. She said she could refer to Cardiology if needed after the echo.

I said "Yes" to the echo and it was scheduled for Halloween 2019.

I hope as we walk through this journey together that you will see God's hand over this from the very beginning. I know I have seen Him in the smallest details and God has made it evident He is walking with us every step of the way!

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalms 139:13-14

The backstory starts in 2008. I went on my first mission trip in August. We were helping do a small part of an orphanage build. A couple days into the trip, I stepped on a nail while we were working. About a month or so after we returned, I was still having issues with the wound in my foot and went to the doctor for an antibiotic for a minor infection.

At this appointment, the nurse practitioner asked me if I had ever been told I had a heart murmur. I think the look on my face gave her the answer because I thought she was crazy. I was 19 at the time and no one had ever told me I had a heart murmur before. I thought the doctor was a quack! I called my mom and she said that she vaguely remembered being told I had a heart murmur when I was born but that I would probably grow out of it. I knew I needed a 2nd opinion immediately.

My uncle ran a free clinic at the time that I volunteered at a little bit and they were open that same evening so I went over and had him and the doctor there take a listen. They both confirmed I had a fairly significant heart murmur that should get checked out further.

At some point I was referred to a cardiologist and had a 2-D echocardiogram done, however, they needed to do a transesophageal echocardiogram (TEE) to get a better look at my valves. The TEE procedure was traumatizing. I have a very sensitive gag reflex and had to swallow this really gross thick medicine to help numb my throat. Those that know me really well, know that I used to vomit when my parents would try to give me liquid medicine. BLEH! I also woke up mid-procedure with the tube down my esophagus and remember the feeling of them removing it as I gagged. I actually started crying in the procedure room when they were finishing.

This procedure confirmed my diagnosis of a bicuspid aortic valve. This is a congenital heart defect I was born with (hence why my mom was informed about my heart murmur when I was born). The aortic valve is supposed to have 3 leaflets that open and close allowing blood to flow out to the body and brain. I was born with only 2 leaflets causing my heart to work harder opening and closing and getting the blood flowing appropriately. Eventually, I would need aortic valve replacement (AVR) surgery.

My cardiologist assured me I would not need the surgery for 20-30-maybe even 40 years and that by the time I have it, it wouldn't even be open-heart surgery anymore...

Unfortunately, he was wrong.

Happy Sunday and Welcome to my AVR Journey!

When I first heard the idea of journaling through this process, I have to admit that I thought it was a little silly. I'm not much of a journal-er because it can be time consuming and sometimes I don't feel like I have the right words to put down on paper. However, I recently read a couple books that talked about how journaling can actually help your mental health and this community lets me know that there are others out there going through the same exact thing as me. I also noticed that as I was continuing through this process even in the short 10 days it has been since reality hit, it was hard to keep everyone updated and make sure those I cared about had all the latest information.

If you are family or friends and you want to stay up-to-date, please subscribe.

I won't promise these will be entertaining or short or succinct but I can tell you they will be thorough, probably too detailed, and authentically genuine. You will get it all...the good, the hard, and everything in-between.

So here I am...unfiltered...raw...and just Lindsay.