So I've been trying to think how I could best contribute something to this amazing site as that would be helpful to others who are in the waiting room and on the recovery side. Some of my fellow heart warriors have done so much good things and I want to do my part to help out just a bit. So I’ve been trying to think what has been one of the most helpful parts of my journey (this doesn’t include my wonderful family and friends who have been with me the whole way).
Music…….I have found that listening to music has been such a powerful part of this whole experience. Now for me I put all of my musical focus on Christian based music for my journey, which for me was what I really needed, but we all have what works for us individually. That’s what is so wonderful about music we can all find what works for us in all the different types that are offered. So with the help of my wonderful best friend Stephanie we created a playlist of songs at the beginning of this journey that were just right for what we were going through. I can’t begin to tell you how many times I listened to that playlist (named appropriately Heart Valve). Whether it was before one of my pre op appointments all the way to my recovery while pounding out the miles on the treadmill at cardiac rehab. One of the most powerful moments was when we got up very early the morning of my surgery and I drove myself to the hospital on a dark and cold morning November 12th. I told my family that I just want to listen to my playlist and didn’t want to have any conversation. It was one of the most powerful moments and helped all of us in that vehicle very much as we drove that same route I drive almost everyday to work. Something I will never forget and often think about when I listen to that same playlist today. I’ve even added a few more songs as I keep finding new music that helps me appreciate how far I’ve come on this journey.
So if you look back in my journal we posted a song that was and is still so important to us by artist Josh Baldwin called Stand in Your Love. Talk about a powerful song! So I’d like to offer a new song for those who are in the waiting room. I recently just heard this one and it is exactly what I needed to hear at this moment in my life. I can’t stop listening to it. The song is called I’m Gonna Let it Go by artist Jason Gray. It’s already been added to my Heart Valve playlist and I’m sure it will help some of you who are in the waiting room. Here is a link to the song: https://youtu.be/qb5DgReyG4U
What a difference a year makes. I’m feeling really good and remind myself everyday to have a grateful heart for what I’ve been given.
Before and after picture of my aortic valve. Thanks Dr. Graeve, with all my ❤️.
Update posted on...
December 27, 2018
Feedback from ❤️ Warriors in recovery. I’m struggling at 6 weeks post op with exertion. I push it to a certain level and I feel slight deep shock (hard to explain) in my heart, and my HR excelerates into the 150s and can’t get a breath in my lungs. My HR rate does come back down pretty quickly when I decrease exertion level. Today, they captured the episode on the monitor in rehab and sent it to my cardiologist. I’m now waiting for an appointment time. Anybody having anything similar? Thanks in advance.
Today I had a 4 week post op follow up with my surgeon's office. Overall my progress is good and everything is healing. I'm still on full sternum precautions until January 7th. I am just beginning to find a better sleep pattern and I hope that continues to improve. I am taking melatonin only now and stopped the Ambien for sleep aid. I have been on extra strength Tylenol for internal pain and I do have sternum pain/sensitivity but that is a part of the healing process. I learned from a cardiac rehab patient that we can get 4% Lidocaine patches at the drugstore.
Today, they lowered my Metoprolol to once a day, instead of twice a day to help with dizziness and light headedness. My blood pressure will need to be monitored now since the dose was lowered. If it goes up, I will have to go back to twice a day.
Yes, I did start cardiac rehab, rather early it seems. I'm glad they did as this will be my 3rd week into it and it will end the 1st week of February. I'm assuming because I had transportation to get there but I don't know why they started me so early. I do treadmill and stationary bike right now, no upper body stuff. I go for an hour and it wipes me out but it's good for me and I do enjoy it.
I do have anxiety while out it public places. I guess it's because I feel broken and I'm afraid something will happen, so my outings aren't very long. I make sure Stephanie is close or I can maybe feel a panic attack coming on. This is all new to me, so I do hope it resolves as I heal.
Saw my X-rays today, pretty cool to see my valve and sternum wires. I won't have first echo until February. I'm really anxious to see the difference from an old one.
I did have my first cardiologist appointment last week, but that was very uneventful. He listened to my heart only, looked at my my incision and said see you in 3 months for the echo. He did comment on the before and after photos the surgeon took of my valve and he said that I had a sudden death valve and I am very lucky. I feel more than lucky, I feel Blessed.
UPDATE- CHECK OUT DAN V.'S OFFER BELOW IN THE COMMENTS.-
To a Heart Warrior that is just beginning their journey; I would like to send you my
gently used copy of Adam’s book The Patient’s Guide to Heart Valve surgery. It was tremendously helpful to me (and Stephanie) and calmed a lot of my fears in the very beginning. First person to let me know they want it in the comments and it’ yours. We’ll figure out a way to exchange information privately and Steph will get it in the mail.
Tomorow is 2 weeks post op ( 1st surgery anyway 😉) I’ve been getting my walks in and “grinding” out each day as they happen.
A HUGE Heart felt THANK YOU............
Journal posted on November 18, 2018
I'm not very good with words (Stephanie is much better at this than I am) but I needed ALL of you
to know how much your prayers, thoughts and comments have meant to me over these last
few days, I could truly feel the love and support but then Steph would show me updates from the
HVS site and it was only magnified.
This website has helped my family so much and I just needed you to know how grateful we both are
to all our supporters and friends!
I got back home yesterday and I'm so thankful to be on this side of it. We both kept telling each other
weeks before "just wait until we get on the other side of surgery" and now we're here.
I luckily did not experience afib and I possibly credit that to the amiodarone they put me on
the week before surgery.
Now it's just one challenge at a time, one day at a time, and when you heart warrior veterans
say "keep grinding out each day," it truly is a grind. ❤️💪🏻
Warrior: A Brave Soldier. That is NO JOKE with the mental/physical aspects ALL of you heart patients endure in becoming/being a heart warrior. ❤️💪-Steph
Journal posted on November 13, 2018
It’s with a very HEAVY heart that I make this post. I’ve been thinking I wouldn’t make it, but have decided to do so. Dan had some complications in the night, some bleeding and clots behind his heart. They just took him back to surgery to open him back up. Thank you all so much for the ❤️.
He's out of surgery and in Cardiac ICU. He's still not awake yet, but everything went well and the new valve
is doing great. They say he'll remain intubated for a couple more hours yet. The surgeon actually gave me a before and after picture of his valves. HOLY SMOKES what a difference. I would post a picture but I'm reluctant, as not
sure if everyone would like to see that picture.
Thanks for all the prayers, thoughts and words. It helped a TON
Well, we made it to the evening before surgery. It’s bittersweet, but we are ready for this. More so than we thought we
would have been 2 months ago. It’s been a tough roller coaster ride these last few weeks and we’re ready to get off now.
Our emotions at times would get the best of us and we would lose our Faith and Trust,
but as we look back on the time that got us here, we can see nothing but Blessings all along the way.
Tomorrow, in the mix of feelings will also be the sense of sweet relief.
To the Heart Warriors in the waiting room that are asymptomatic struggling mentally with the thought of having OHS when you feel fine, as if nothing is wrong with you: That WAS Dan upon test result findings in early September. However, he has became weaker each day these past 3 weeks. Sleeping has been met with anxiety because he would wake up gasping for air, not feeling well and unsteady on his feet. If he rolled over on his side while sleeping, which is his normal sleep position, it seemed to put pressure on his heart/valve and his heart rate would rapidly excel and he couldn’t breath. Those moments were met with the decision of do we go to the ER or not. We didn’t want to make the mistake and go to the ER and have unplanned valve replacement surgery as outcomes would be less favorable than making it to his planned surgery appointment.
We also didn’t want to make the mistake of not going to the ER. We were already warned of what happens if
you don’t make it there soon enough. His heart would do better at night sleeping up on a wedge pillow
or in the recliner. We say asymptomatic is the way to go.
The only proof necessary are the test results that say we need OHS surgery, so symptoms not needed nor welcomed. They are too scary, too emotional and you’re walking on a tight rope line.
To all Heart Warriors: Thank you for sharing your stories and journeys. Courage and inspiration are drawn for the both
of us from each of you. This website is a Godsend.
To our Friends and Family: Thank you all for your support, words, gifts, prayers and just an over all feeling of having a safety net. We are both so overwhelmed with everyone’s support. All our love.
Hello All. My surgeon is putting me on Amiodarone. He wants me to start it 7 days before my surgery. From what i can gather on the inter-webs it seems to be antiarrhythmic medication used to treat and prevent a number of types of irregular heartbeats. I currently have no symptoms that would cause me to have to take this right now, so I'm understanding it to just be a precautionary pre surgery med. Did anyone else have this prescribed to them?
All Pre-Op procedures are behind him👏 He’s mentally/physically exhausted. Now, just wait for Surgery date.
Update posted on...
October 9, 2018
They tried to go through the wrist, but artery is too deep, so groin it is 😬. The Good news of the day is that the rest of his heart is healthy. The bad news of the day, is that the valve is No Good anymore. Surgery has been moved up to next week or the week after. ( I guess the good news to come from that is the anxiety levels don’t have to much longer to build up). It’s good to have this knowledge than to not. It’s good that summer is over and we aren’t on our paddleboards in the middle of a lake. It’s all good and we both are ready. Rob is right. A transformation happens on this website ❤️💪
Thanks to all your posts here, we just ordered a recliner. Thanks to Donnie for finding a great one at Costco with infinite power positions and heat. It most likely will go on Craigslist when this is over. We can't wait to make that post!
Update posted on...
September 28, 2018
Cardiac Catheterization is scheduled for Oct. 9th. They were unable to do it while I was in the hospital due to more urgent patients showing up. Waiting to hear back on CT scan appointment date. Then, back to the surgeon’s office for final discussions and surgery date. Oh and I’ve decided to go with a tissue valve thanks to all the advice from your posts here. Going with the newer Edwards Resilia valve. Found Peace today making that decision. Everyone on this website sharing their story is an inspiration and motivator.
We’ve been at the hospital for 4hrs now. Dan had a little cardiac episode in the night. On the positive ,it looks like the heart cath test will be done today so that is a hurdle jumped sooner. Oh and twinkle twinkle little star just chimed through the speakers, 2 babies were born since we’ve been here 😃
We met the surgeon Dr. Graeve (try not to notice that it looks like grave and thank goodness it's pronounced gravy) and we REALLY like him. The next 2 steps are; 1-Cardiac catheterization to make sure there is nothing else wrong other than the aortic valve and 2- CTE scan to take a measurement of the valve because, you see, it's hard to decide between a tissue or mechanical valve. They both have their pluses and minuses. A tissue valve is only a 10yr (15 yrs if you're lucky) relationship. After that one fails, they can do another valve inside that valve BUT, apparently, they have YET to do a 3rd valve in a valve. So, Dr. Graeve wants a measurement and if that is a bigger number, he can get a bigger valve for the hopes of having the room to one day do a 3rd valve in valve should Dan decide to pioneer this one. Once these two appointments are done, surgery will be scheduled.
Thank you for the notes. We both love them! We can't thank Adam, the founder of this website and community enough for giving us a means to communicate with family and friends without the use of regular social media.
Surgeon’s office called us to come in early for our appointment. It’s a beautiful day today!!!
Journal posted on September 18, 2018
Hi!! We got news that Dan's appointment with the surgeon is Monday, Sept. 24th at 3pm.
We'll let you know what happens next after that. Thanks for the Love!! We're nervous to say the
least. We're enjoying some of our finer bottles of wine this week :)
Steph and I created this so that we can keep everyone that we want to know up to date on
when the surgery is. This will make things easier day of surgery to post updates here instead of everyone individually.