Sophie's Heart Valve Journal

❤️ Wow. I can't believe it has been two years already. I am so blessed and thankful for this anniversary of my open heart surgery with Dr. David Adams and team, and for the outstanding work they did repairing my Barlow's Mitral Valve and Tricuspid Valve. Yesterday I was given the opportunity to go to NYC with a friend for her consultation with Dr. Adams for a MVR. It was almost surreal to go trace my steps from two years ago. It brought so many emotions back to me and I can't tell you how blessed I was to be there for her as so many were there to support me. She has decided that this will be the best decision for her. I am so impressed with the amount of time the team spent with us going over all her questions.
I was also thankful to see Dr. Adams again. I am a sign painter so I brought him a sign that refers to him as a Mitral Valve Repair Extraordinaire" it was nice to see all the same people in the office like Therese King and Jose and the assistant surgeons too. I am also happy my friend is in the best hands, but I also understand how nervous she is.
Well earlier this week I decided to take our pony for a walk because the weather was beautiful. We have had so much cold and snow in the northeast and the driveway was finally showing. Well. she, having barn fever, decided to kick me right in the sternum. It almost took my breath away and I thought I would pass out. I did not , but the adrenaline was pumping! The first thing I though of was my sternotomy. It felt really sore but sound. I ended up going to my cardiologist on Monday to have my heart checked. Dr. Franklin ran all the testing to make sure all was well. Thankfully it was! Glad I didn't get kicked in the face or teeth! My sternum held up perfectly.
Earlier this year at my visit with Dr. Franklin I had an echocardiogram. I was so happy to hear that my repair was one of the best he has ever seen. This is amazing considering how mishapen my valve was. I needed a size 36 annuoplasty ring.
Overall I feel absolutely great! I have been keeping up with exercise and I am thankful for the endurance I now have! My scar is fading and it's almost hard to see now. I am still covering it with lots of sunblock out in the sun which hasn't been lately as we are still buried in snow! When I look at it I am so thankful. It is the visible evidence of God's grace and healing in my life and says "I love you " to my family. After losing my dad, I could hear the memory of him telling me to me to go to the cardiologist. I felt fine although unbeknownst to me some damage to my left ventricle had already occurred. When I was around 19 a medical professional heard a slight murmur but then attributed it to athletic heart. If I would have been diagnosed it's possible that I would have had a replacement as the repairing was not yet common. All the damage has been healed!
What a journey this has been. I am so greatful to be able to support others through their journeys and glad I have the strength - physical and emotional- to do so. my favorite verse for my heart surgery follows:
Isaiah 40:29-31 He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.... If you are going through recovery you will get stronger and stronger each day!
I am still overwhelmed with all the wonderful people who helped us during our time of need. All the encouragement, prayers and support will always be remembered.
Praying for all who are facing these tough times in your life. Remember Romans 5:3-5 "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts ❤️ through the Holy Spirit, who has been given to us. " My hope has increased in all of this and my trust in God has also grown. He never left me through this whole thing and I saw Him in so many of those around me who cared for me and my family!
Here's to Two! (not the terrible type)
Sophie

It was such a blessing to return to Mount Sinai with a friend yesterday for her consultation with Dr. Adams. I am thankful to be able to go with my friend because I know what she is going through and hope to comfort her. Two years ago today I had my open

Wow, I can't believe nine months have passed since I had both Mitral and Tricuspid Valves repaired by Dr. David Adams at Mt. Sinai Hospital in N.Y.C.
I feel amazing! Lot of things have happened since my last post which was a long time ago!
I went through eight weeks of Cardiac Rehab starting in April! I am so glad I did this because it gave me so much more confidence in my heart function! The nurses at Middlesex Cardiac Rehab were amazing and motivating! They got me back to running and in July I ran the Caroline's Miracle Foundation 5K. At the time I had a maximum heart rate of 150, so with the help of the Pear heart rate monitor and app, I could control my pace. I did need to walk a little bit of it to lower my heart rate, but I finished at 39 minutes which I was very pleased with! Since then all my limitations have been lifted and I am now running and going to Anytime Fitness which is great because the weather has turned cold.
In June we went to New Hampshire and while there we went to Gunstock Mountain's zip lines and aerial treetop adventure which is a series of zip lines and suspended obstacles that are up to 100' above the ground. My sister-in-law Kim and I made it through the entire challenging course! http://www.gunstock.com/summer/treetop-adventures/ We also did the long zip lines from the top of the mountain. That was an adrenaline rush! I can't wait to do that again!
In August I celebrated birthday number 43 and was moved to tears of thankfulness when I woke up that morning, because I was still here to count another and to be here to love the ones I love!
In September we moved into a new house in our town and I was able to keep up with everyone carrying boxes, lifting furniture etc. We are still settling in to our new house, now.
Last week my family and I returned from a Disney trip where I really got a chance to test out the ticker...we rode the Tower of Terror, Rockin' Roller coaster, Space Mountain, and Everest to name a few! It felt great to get to experience all my adrenaline-inducing favorites again! My daughter and I returned home with a cold from burning the candle from both ends. I am thankful that is the first sickness since my surgery. It's almost gone now, so that's good! Maybe we shouldn't have stayed out until 2 a.m.
The only thing that remains with me is the scar and memories, some scary and many warm memories too. The scar is a visible reminder of God's grace in my life. It's fading now and looks really good! (Scar-Away silicone sheets are great) Scary memories were finding out from Dr. Franklin, my cardiologist, that I needed surgery. Waiting and wondering what would happen, where to go and just a feeling of anxiousness. Fond memories include my nurse, Cymbie in the Cardiac Care Unit who's care was over the top, family and friends who came all the way to NYC to visit, delicious dinners that we were blessed with make me smile. Even the calls from the Cigna phone nurse who checked up on me often with helpful advice.
I am so very thankful for my surgeon Dr. Adams and his team! When I saw the before and after photos of my Barlow Mitral Valve, I was amazed! He is a master-craftsman! I am thankful for my amazing husband, Geoff, who supported me through the entire process. You did what you said you would do and I love you for being a man of your word! Thank you to my beautiful daughters for your love and support and for pushing me in my Cardiac Rehab! Thank you Mom, for traveling outside your comfort zone and stepping into the world of hospitals and Docs all the way in NYC to be there for me!
I am so thankful to Jesus for prompting me to go to see Dr. Franklin, my cardiologist when I felt no symptoms at all for He knew my heart needed work, when no one else did. He orchestrated all that happened and also answered so many prayers. He works all things together for good!
I pray for anyone who is facing surgery and is in the place I was in last year at this time. I have learned to be a more trusting person through all of this and my faith has also grown. I've relinquished some of my control-freak tendencies, too! So my physical heart is fixed, but spiritually, it's still a work in progress!
Happy Thanksgiving!!!!
Sophie Marsh

5 weeks post op visit

Before and After

Well, let me say our return visit to Mount Sinai today was so much easier than the last time we were here. Geoff and I walked down the same street we did on the early morning of February 26th, the day of my surgery. As I remembered the last time walking here, some of the emotions came back and I started to well up, because I didn't think I would have the strength that day to get my legs to walk in the direction of the hospital. That was the day when there was only one set of footprints on the sidewalk, the day when The Lord was carrying me Isaiah 40:11- " He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." Today it was much warmer. The sun was out and with my faithful husband by my side and a heart that is repaired better-than-new I felt a smile on my face and wave of relief.
We arrived early and were seen right away. I was given a before and after photo of my Mitral Valve. I was examined and I am healing well and fast. They did an EKG, and I figured they might do an x-ray, but they examined the sternum and said it is feels solid and is healing well.
Last week I visited my Cardiologist for the results of the Echocardiogram and Dr. Franklin was excited to tell me that there were no more leaks and even the area where there was slight enlargement has returned to the normal size. Thank God. I am still having some PVC's (electrical issue) but waiting to pass the three month mark to see if that may go away on its own. I am thinking about cardiac rehab and they said I should not start that before eight weeks post-op. I think it will be good to be monitored as I start some more vigorous exercise.
Geoff and I walked about five miles total today. We spent some time at the Metropolitan Museum of Art and walked all the way from Mount Sinai to Grand Central Station. Overall, I am feeling great and at times almost forget to be careful. As far as pain is concerned, occasionally I am just a little sore around the incision. I am sleeping well through the night, except last night we were awoken by a nearby owl. Figures, we had to get up early to catch the 6:15 train!
Oh yeah, I am also driving now, not too long of a distance, mostly around town and that feels great! I have been working on my posture, because it's easy to slouch when your pectoral muscles feel tight.
We are thankful for where we are on this journey. Thank you to all our family and friends for all your encouragement and prayers! It is absolutely amazing how fast a body can heal and how each and every day has been better than the day before. I have always trusted God, but through this trial, I have learned more of who He is and what an amazing Healer he is. He is a parent who has strong compassionate arms to carry a child when they are hurt and also knows when to set them down to walk on their own. I am amazed at the way He equips people to do His work and provides through them.
Smiling big! Sighing with relief!

It's hard to believe that three weeks ago at this time I was in the ICU at Mount Sinai Medical Center after my surgery with Dr. Adams and team and my husband and mom waiting for me to recognize them. I am so thankful each day that the surgery was a success and that I am progressing with my recovery! Tonight Geoff and I walked the track at the high school - 1.25 miles. I find once I start walking about 3 minutes later I need to slow down a bit to rest, but after that I don't seem to get short of breath the rest of the walk.
We visited my cardiologist a week ago and he said my heart is back to 100% horsepower. That is something to be thankful for as I lost some heart function a couple of months before surgery. I return this Friday for an echocardiogram. I can't wait to see the difference with my valves repaired. We are also looking forward to my post op visit back at Mount Sinai in the beginning of April.
I am sleeping better each night in my own bed with only one pillow. It's getting easier to shift from side to side now. I am also able to do some light housework like washing windows and folding laundry. Each day is getting better! The incision is looking great. In fact I have been thinking quite a bit about scars lately.
My scar represents the visible evidence of the grace of God in my life. The grace which allows healing to occur. Eventually I will not remember the exact pain because of the physical and emotional healing that has taken place. It will remind me of the grace which prompted me to call my cardiologist, Dr. Franklin, out of the blue to make an appointment at just the right time when I was still asymptomatic. His grace allowed me the time to research and find the right surgeon to do my repair. My scar says" I love you" to my family. My scar will show others that I understand what they are going through because I have been there. My scar will remind me of God's goodness to my family and myself.
I am looking forward to driving again. It seems like forever! Geoff has been joking around saying he is "Driving Miss Sophie". I am also looking forward to flying again. Coming home from church on Sunday, as we drove over the Baldwin Bridge looking out over Long Island Sound, I felt the urge to get in the airplane again and go flying!
On one of our flights in November, before surgery , Geoff and I were flying at 10,000 feet with no supplemental oxygen and I felt slightly out of breath. We requested a lower altitude and it made a difference. I thought it may have been psychological, knowing I had the heart issue, but now I do think it was a result of the thinner air and my heart function decreasing. So many things we have put on hold waiting to get through with this chapter, I can't say how good it is to have this behind us. A friend of ours promised me a ride in an aerobatic plane when I am recovered. I wonder how adrenaline is going to play into this? If I have to wait 4-6 weeks to drive, how long do you think I should wait to do barrel rolls, loops and hammerhead stalls?
I continue to heal and get stronger one day at time, taking the time to rest when needed and counting my blessings! We are so thankful for all the meals that friends have been bringing over, the many get-well wishes and continued prayers for our family. I am thankful for all the encouragement from heart valve journalers!
I will update again after my next echo!

Car ride home

Getting ready to go home

Here we are ten days later! I have so much to be thankful for!
The past five days at home have been great. Each night I am sleeping better and am now in my bed all night. We just get creative with the pillows and that seems to work well.
Earlier in the week I had a visit from Sharon, a local physical therapist who gave me some gentle stretches that would help with the tightness in the sternum/pectoral and neck area.
Seeing I had no limitations to laying flat, stretching the muscles really helped to loosen up.
Of course my wonderful husband has been giving me a back/neck rub right before bed and that too is helping lots!
My appetite has been great and we are so thankful to all our friends and family who have been bringing food by the house every other night. (Taste and see that the Lord is good; blessed is the one who takes refuge in him. (Psalm 34:8 NIV)
I have only been taking Tylenol when needed. Which is less and less frequently. My incision looks great and is healing really well! Still using the incentive spirometer. I am off the Lasix! That was dehydrating and I felt hung over. Don't overdo that one, when you get close to your normal weight call your Dr. I felt lots better when I stopped that.Heading to my cardiologist on Monday for a post op check.
I wanted to mention to those of you who are women and have surgeries upcoming to see if you can schedule your mammogram before then. I was able to get in for mine the week before. I can't imagine that would be much fun too soon after surgery!
We woke up this morning to more snow! Not sure I'll be walking outside. Thanks to my friends who reminded me not to go shovel snow! The girls are home today which is nice! Thankful for their care and for all the extra chores they are doing.
We are looking forward to our journey with my heart that has been restored better than new! I can't be more thankful for the care we received at Mount Sinai. Thanks from the bottom of my mended heart to Dr. David Adams, for your life's passion to repair hearts! Thank you, Percy, Margie and Ava and also Therese King in scheduling. You are all a very well-oiled machine! For these special nurses/caregivers who kept watch: Cymbie- We appreciate all you did. You even brushed my hair and then asked if you could French braid it. Jen, Karen, Jean, Gwen, George, Dorothy, Janet, Dhonna, Joel, Tracy, Delza... Thank you all for your amazing care! You all make a great team! Forgive me if I forgot anyone.
Looking forward to my 4 week post op. We can enjoy the day without the impending surgery looming.
I am thankful for our Valley Bible Church family who have continued to lift us in prayer and for my friends who braved the drive to visit us in NYC! Thanks to Linda, Ted, and Boo for taking care of the girls and dogs while we were gone. Thank everyone for your encouragement and prayers!
Better. Stronger. Faster...each day!

Remote, boss hog chair, Snuggie!

Welcome home banner- look 4 eagle

Before leaving Mount Sinai on Sunday:
Because my blood count was low I needed to receive two more units of blood on Sat/ early Sun. a.m. which helped with the low blood pressure issues I was having.
I also donate blood so it was wonderful to receive this gift that someone took the time to donate! This helped me feel more energy.
Well we got our walking papers at about noon yesterday and my husband/chauffeur pulled up and headed back home. The car ride was very comfortable and I am only taking Tylenol for pain. I dreaded this, anticipating that every bump would hurt, but I was very comfortable in the back seat with my heart pillow tucked under the seat belt. We stopped for lunch and a bathroom break. It felt funny to be out in the real world again.
We came home to a beautiful sign waiting in the driveway! We had a nice dinner waiting for us. Mom made us a homemade chicken soup with pistachio cake. I can't tell you how nice it was to be home eating dinner at our table with my family.
We all tucked in early for the night. It was nice to be home in my own bed with my husband. Before surgery I bought a memory foam wedge pillow that would keep my angle at about 30 degrees. I slept pretty well until about 3:30, but then needed to get up and stretch out. Fell back to sleep until 6:00 so that was great! Not sure if I may try the recliner for a little bit tonight.
I am fairly tired, but feeling much better each day. It's just so much of a relief to have this behind us and to be on the road to recovery. I am so thankful to God for his grace in allowing us to find out I needed this repair in my valves and for giving us the time to find a surgeon we felt was totally capable of repairing, not replacing these valves. This was His grace shown to our family. My thanks to my Best friend, Geoff who walks every single step of this with me, and for our daughters who stayed strong and brave through this. I will post more tomorrow which will be one week post-op.

Last night in hospital!

Hello family friends and heart valve patients!
I am so very relieved to be here on this side of everything! I originally had nausea with any of the narcotic pain killers and went to staggering Tylenol by IV with another non narcotic IV pain killer hat worked great.
Now I am solely on Tylenol and maybe will see if I can work some ibuprofen into the regimen if my platelets are good. I am happy to be losing the foggy head and walked two laps around the floor this morning. I am waiting for my first shower...yeah. Also on some Lasix. Holy cow, I gained like twenty pounds of water so looking forward to getting rid of that! I slept really great last night.
I had some surprise visitors yesterday and also on Wednesday! What a blessing!
I can't thank everyone enough for your love shown through email messages, Facebook posts, heart journal posts etc. Thankful for my wonderful husband Geoff and the rock of support he has been to me and for my mom who stepped out of her comfort zone to be here for Geoff and I.
My girls are coming to the city today! Looking forward to seeing them and Les and Amy!
I get an echocardiogram today to see how well the valve was fixed.
Here is my bible verse for this surgery:
He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:29-31 ESV)
This sums up everything. I will walk and eventually run again and enjoy this new beginning God has blessed us with!
Please keep us in prayer. I am so thankful for you all!

48 hours out of surgery

Sophie has been through a lot but has stayed very strong and positive. She has graduated to the last room before discharge that we are hearing should be this weekend. I think she will be ready to post an update tomorrow. Please continue to pray for her healing and comfort. - Geoff

Well this has been a long day but a great day! The heart surgery has repaired Sophie's mitral and tricuspid valves. Her progress in ICU has been incredible and they are planning to roll her into a cardiac room late tonight. She is in some discomfort with breathing but this is normal for this soon after open heart surgery. She remains very strong and is deeply touched by everyone's well wishes and prayers. Thank God today has passed and He has provided!
Geoff

Sophie is out of surgery and in ICU. The surgery went perfectly and she ended up with two repaired valves. I'm headed in to see her shortly and hopefully later this afternoon she will begin to awake and get the breathing tube out. I will post another update this evening. Thank you everyone for your support and prayers and thank God for this answered prayer!
Geoff

Ready for surgery

Well here we are and we can't believe this day is here.
I can't tell you how touched we are by the support we have received from family and friends! These include a list of meals that will be coming our way, hugs in the grocery store, teens who are praying, gift baskets with games and snacks to keep those who wait busy, lunch with a friend who wasn't afraid to show me her scar, emails with bible verses and love tucked in side, encouragement from everyone, prayers at church this past weekend....I could go on and on.
We left CT about 3:15 and had smooth sailing into NYC.
Not even in traffic one time. That's a miracle in itself!
We are staying at a great bed and breakfast...very clean and comfortable, only .4 miles from the hospital. Had plenty of time to unpack the car and tuck that away for the next few days, then had a nice dinner at a steak restaurant that had Bon Jovi playing. "I'll be there for you" played and I thought of Geoff and my mom who will be by my side, but mostly my Jesus who never leaves my side. In fact tomorrow will be one of those moments where there will be only one set of footprints in the sand.
Tomorrow I will need to be carried.
I am as ready as I can be, scrubbed down with some kind of hexadine wash. Need to do one more in the morning. This is not too bad, so don't worry if this is in your future. We are scheduled to arrive at 5:30...the first surgery of the day. Can't wait to be on the other side of this!
Geoff will update as soon as he knows anything. Please pray for those who wait as I will be off in la la land.
Our thanks and love to you all!

NYC hot dogs w mustard and kraut! Mmmm

Geoff, Allie, Mandy and I came in to the city last night and spent the night. We woke up to a beautiful sunrise over the East River and had a great breakfast. I randomly opened the bible that the Gideon's left in our hotel room and read Proverbs 30:5 "Every word of God proves true; he is a shield to those who take refuge in him." I sure need a shield and a refuge!
Our appointment at Mount Sinai was at 10:30. I had blood drawn, chest x-ray, etc. and went over the details with two very nice nurses and someone from the anesthesia dept. came in to talk to me. They sent me home with the "scrub" kits for next week. Geoff and the girls had some fun on Fifth Avenue while they waited for my call. Then we took a cab to Times Square and walked around. We stopped and had a hot dog from a road side cart. Later we made our own frozen yogurt sundaes at the plaza hotel...any time is a good time for fro-yo! We probably walked about five miles today in all which was a good thing despite the drizzle. Now we are on the way back to CT. We can't wait to have this behind us, but wish I could stop the clock at the same time. This time next week it will be done. Please continue to keep us in your prayers. Thank you everyone for your love and word of encouragement! It means so much!

Art for Hearts

Art for Hearts- verses include "heart"

Art for Hearts

Art for Hearts

My art therapy...Art for Hearts

Well I can't believe it's only ten days until my mitral valve repair surgery at Mount Sinai with Dr. David Adams. I have wanted to start this journal sooner, but actually doing so kind of puts it in stone, so I procrastinated! We have been busy preparing as much as possible. Thank you to Adam Pick for his book which has given us a look into his experience and is helping us prepare the best we can and for all the patient entries which have helped us in decision making. We are trying to take one day at a time and not worry too much. Thanks to all our family and friends for all your prayers and support so far! It will all work together for good. :)