Mike's Heart Valve Journal

Pacemaker is in now. Hopefully I go home tomorrow

Ok all today is pacemaker placement day. Hopefully the last day of stuff and I can go home tomorrow. It’s been so long and I miss home so bad. My wife and kids both broke down crying last night cause they want me home. I need to be home.

Family spent the weekend with me at the hospital which was nice. C Diff is finally cleared and my colon is back to normal. Pacemaker Monday coming tomorrow and then finally get to go home Tuesday night or Wednesday morning. So ready to get back home and move on.

Hello all. Just wanted to let you know I am still in the hospital and hope to get out on Tuesday. It’s been a really rough two weeks and I will tell my story then.

Hello All

Well it’s been a little while but I have been stuck in the hospital since my surgery. Various complications that are still on going. I will due a full write up when I get home to a computer where it is easier to type long messages.

My sodium levels are low and they want them up. I am not hungry and not sure what else I can do. I don’t feel like eating right after these last few days. Seems to be my major hiccup facing me.

Finally moved to step down today from the ICU. This experience has been a tough one for me as I am hitting a bunch of speed bumps. I will do a full write up of my surgery someday soon when I get home

Hello everyone it has been quite the ride going through this OHS. Still in ICU today but I feel things are starting to get better. Sounds like I may not need a pacemaker as my electrical parts of the heart are starting to wake up. Found out I have an infection in the stomach that needs to be resolved or else I loose part of my colony. I don’t want to have another surgery so hoping these medications start to worry to. Let you guys know more details when I get a better time write everything.

Ok found out that I have heart block now and that is why I need a pacer. One of my chambers is not responding so that’s new for me.

This is so much harder than I thought it would be. 4 days in ICU and no answers yet. What something to change

Looks like it is a pacemaker for me. But they want to wait all 5 days to see what happens. No walking yet just marching in place. Hope to be out of ICU soon

Well everything went really well. Problem is that my chambers are not talking to each other so I might need a pacemaker put in. At least at this point waiting a few days to see what happens. Praying that it fixes itself

Kids wanted their bears with me

Still in ICU do to some issues. Hope to get out in a day or two. Surgery went well just other issues

Officially GO TIME

Well it is officially go time. The time has come to complete this chapter of my story. Tomorrow will mark the writing of my new chapter. Even though this chapter was really quick there was a lot that was written in it. From first diagnosis in February 2019 to OHS on May 6th 2019. What can I say the time went so fast and now onto recovery. I would like to say that I am 100% calm and not scared to go tomorrow but I know that is not true but I know I will be fine. Any major operation is scary and causes anyone anxiety. 24 hours from right now I will be up and into recovery mode probably still hanging out in the ICU. Once that occurs I will feel like this boulder I have been carrying with me is fully removed. I went to church today and prayed for myself and everyone of you that are going to be heading soon into surgery and all my OHS warriors that are recovering from past surgeries. I had a great weekend golfing, spending time with family and friends, and also enjoying some delicious dinners. The weather was perfect this weekend and got to spend a lot of time outside. I think God just wanted to let me get in some time outside before I have to get onto the recovery phase. So for now I am going to say thank you to everyone that is on this site that has helped me not fear as much as I was from original diagnosis. That has gave me advice and strength through this battle. God Bless all of you and I will be asking my wife to post tomorrow on the site to keep everyone updated. I am hoping myself to be able to check in and say hi on Tuesday or for sure Wednesday. Till then thank you and God Bless

Fun night with everyone last night. Tacos and some beers! Love the support from all my friends! Can’t wait till recovery.

One last round of golf till I am all healed. The best weather we have had up here in a long time today. Enjoying it as much as I can

RECOVERY PLANNING ANY INFO CAN HELP :)
So in preparing for my surgery and my time at home we have been discussing how to prepare. Some steps we have talked about is pouring some small servings of milk in separate containers so that I don't have to worry about lifting the jug and also bringing stuff that is too high to reach lower for me. We also have planned some meals that are easy to throw in the microwave for all of us to make it easier at meal time. One thing though that came up was showering and using the restroom. Do we need someone to help us shower and wipe our buttocks? I know for being in the car we need to make sure that I am sitting in the backseat so that the airbag does not hurt me if we get into an accident. Are there any other things that I should consider also during my recovery time? I think I have a pretty good amount of stuff figured out but anything else that I am missing. One thing I read also in Adams book was that opening pop bottles can be hard to do. Thanks in advance. Time is coming quick!

My Kids are getting tested after I am all better. This story breaks my heart so bad. How we don’t know what is going on inside us sometimes.

Girl, 10, 'died from excitement' halfway down a 270-foot water slide

https://www.dailymail.co.uk/news/article-6977643/10-year-old-girl-died-excitement-halfway-270-foot-water-slide.html

1 WEEK TO GO

Well here we are onto the final stretch. Emotions are all over the place. But fear is not really one that is getting to me. I have more of a sense of relief and excitement to be able to put this chapter of my life into the past. Yes of course I am a little anxious who isn't? Surgery is not something we find joy in doing. I don't know what I would be like today if I did not have real people to talk to and a community of OHS Warriors to give me strength. I really thank Adam for giving us this website to talk to each other and comfort one another. All of you that are going before me and all of you with surgery after me will be able to share our stories and push each other through the recovery phase. I truly believe in the power of prayer and our faith in God will definitely push us all to have successful surgeries and recoveries. So keep your head up, chest out and locks rock these recoveries and get back to normal lives again. Thanks to each and everyone of you that have been there for me through my journey from the first diagnosis to when I get to recovery. I am set and ready to go!!

Power of Prayers is so remarkable. Had to share this story about the boy that got thrown from the 3rd floor of the MOA. All of us in here have the power to help all of our OHS friends with just taking the time to say a prayer. It is so amazing and powerful. God Bless!

http://www.fox9.com/news/-doctors-were-amazed-test-results-of-boy-thrown-from-moa-balcony-called-miraculous

2 WEEKS TO GO!!

So two weeks from today is my surgery! Mixed emotions going on still but I am standing strong and positive. The anxiety and worry have diminished a lot since the first diagnosis but still linger in my brain. I know that everything is going to go well and I will be in recovery soon and ready to move on with my life and escape this bad dream. I see so many pictures go by for the upcoming surgeries and get a little nervous knowing mine is going to pop up very soon. But also it makes me feel comfortable by seeing all these pictures go by and see everyone on the recovery side. Prayers are with all of you that have surgeries coming up very soon. I am excited for you all to be heading to recovery very soon and ready to get life back. I am still trying to do all the normal stuff I have always done (at a limited capacity) just to keep myself busy. Walking a lot, trying to eat as healthy as possible, and spending time with my family. I am excited that golf league will be starting this week so I can get in 2 rounds of golf before the surgery! Maybe more since the days are so much nicer up here in Minnesota recently. All in all life is good and amazing! Everyone in recovery keep it up! Each day will get better as your body starts getting back to normal. And all of us sitting in this waiting room hold strong and have faith that our lives can be extended and saved. Prayers to all to my OHS friends!

Happy Easter to all my OHS friends and warriors. Thoughts and prayers for all those in recovery and those still waiting for surgery. 2 weeks from today I will be making my journey down to the Mayo for my evening before surgery. Thanking God today on this holy day for giving us the blessing of resurrecting our lives again with fixing our hearts. It was great to be with family and friends on such a special day.

So after reading some of my doctors notes I have found out that I have a unicuspid valve. After doing some google searching I found out this "Unicuspid aortic valve (UAV) is a rare form of aortic valve malformation, the prevalence of which is 0.02% in the adult population." Wow that is amazing! I have one of the most rare valves know to the heart valve world. It is amazing that I have lived 39 years and never known this existed in my body. I cant wait to see how I feel once I have a proper valve and normal blood flow through my body :)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4473628/

Hello All - I saw a few posts on here these past few days with people that were willing to share the book with anyone that needed it. I am heading into surgery May 6th and would love to use someones copy if at all possible. I will pay it forward when I am finished with it. Let me know and I will follow you so that you will be able to email me directly. Thanks again everyone and God Bless!!

So my surgery is one month away. I still feel really great and in good shape. Will keeping up with my exercise before surgery help me after in recovery. I wanted to try and get cardio work in 7 days a week. Nothing vigorous or strenuous just between 110 and 130 heart rate. Trying to be in the best condition I can be.

So it is official now. I have a date picked for my surgery as May 6th 2019. Going in with Dr Pochettino at the Mayo Clinic in Rochester. Glad to finally have a day picked and time to move on with this journey. I am so happy to finally get closure on this. Thank god I have found this when I did and getting it fixed so fast. Prayers to all my heart warrior friends in recovery and going through surgery.

Long day at the Mayo today. Waiting on my last appointment for an echocardiogram. Finally got to eat after fasting for the blood work. Hoping these days go by fast so I can get my date planned. I am just ready to go and get fixed. Prayers to all the warriors in surgery today. Hope all goes well and quickly. Recovery side is coming soon.

Wow this is an amazing story. For all of us going through heart surgery this little baby has us beat.

https://www.dailymail.co.uk/health/article-6877325/Six-month-old-girl-laser-surgery-heart-WOMB-finally-going-home.html

Well today is officially the last day of vacation and then time to go home and kick butt in getting this heart fixed. I am hoping for my day to be chosen on Friday and I want to push for as soon as possible. My emotions are so everywhere these pst few days. From sad to happy and anxious to excited. Vacation has been great but would have been so much better with this off of my mind. My heart warrior friends going in for surgery tomorrow my prayers are with you. There is a few on the docket for tomorrow. Without you guys and this community I would have been a real mess these last weeks. God bless and Godspeed

Vacation is going great so far. Learned how to play pickle ball yesterday and we played for about 1 hour. The kids are really trying to figure it out as I think it is something we can do as a family. Today is golf round #2. Trying to get as much in as possible. Friends fly in today and we are meeting up at Fort Myers Beach on Friday. Love Florida so much to do. Lots of swimming with the kids and walking the neighborhood. Also a few too many beers but I only a few more days to enjoy it. Been eating healthy since I got here and trying not to eat so much bad food. Fruit and bread for breakfast and salad and shrimp for lunch. Then something that is a bit better for dinner. Time to go get ready for golf! Thanks all for your support this past month.

Twins Spring Training in Florida with the family. Had second row seats behind home plate. Fun times with the family.

Vacation in full swing. Had a delicious gin and tonic while we took a break from the pool. Florida is so nice right now

Well I don’t have a date planned yet but got myself a brand new comfy electric recliner for post surgery. $250 is a steal of a deal. It is perfect for the time that I need it. Vacation starts tomorrow but have everything ready and planned for post surge

Coming To Terms!!

So it has been about 1 month since I decided to take an elective Echo to see how everything inside my heart was doing. I remember being born with a heart murmur and always told it will go away as you get older no need to worry about it. Well that was not true at all. Maybe that is why so many people that have our condition and never catch it till its too late are also being told. I have always been a healthy guy. Working out 5 days a week weight lifting, Cardio, and plenty of recreational sports. Never had a symptom of any kind and always feeling like I was still 20 years old.

Well the echo came back with a Bicuspid valve and an ascending aneurysm in my aorta. Then Mr. Google came to be my best friend or worst enemy when searching health stuff. Everything seems to either end in sudden death or sometime of cancer. But we still search it hoping to find the answer to our questions in life. For the next two weeks I began living in a life of panic and anxiety. Thinking I was just going to drop dead any second. Wondering and scared about everything I did. Losing sleep because I just wanted to wake up as much as possible and make sure that I was still alive. Bad dreams and also waking up worrying every single second about my heart and laying in the dark thinking when is the final beat going to happen. Then the tests started to be requested for me. My poor vein has had a needle stuck in it more this last month than in my total of 39 years of life. Everyday and thing a different experience from CT scans to MRA's to you name it (sure you all know all these tests). Finally got the chance to meet with a cardiologist. He made me feel 10x's better than I have felt in the past few weeks and also now I had a person I was able to email and ask questions to. After his appointment he told me to meet with a surgeon and discuss with him what he thinks. That meeting went a lot different from the making me feel better session I just had 5 days prior. I walked out again from the surgeon feeling doom was on my horizon again and there went my sleep again. But there is one thing he did that changed my story. He told me to come and check out this website that I am on today. He said there is a lot of information out there and it would be helpful to me in my journey. I started out just searching the site and reading some stories of people. Then I said what the hell lets just join and start talking about this with others.

Now 1 week later and after joining this site my entire perspective on this situation has changed. I see hope and restoration. Not feeling I am the only one out there with this. Listening to the stories similar to mine and even some much much different. Engaging with people that are here also for support and strength. Since then my attitude has changed. I have been able to get back to sleeping at night. Making lifestyle changes especially to my diet as I am eating more heart healthy. My exercise had to change but I am still doing it. Going to the gym and not working out so hard but still getting in my exercise. I am feeling happy again and more than ready to take on this bump in the road and move forward. And I wanted to say a big THANK YOU to all of you on here since you are the reason I am back to feeling as normal as I can. Finding the hope and living in the faith of God you all have shared. Just keep up the good fight as we will all make it through these tough times together. Thank you for reading and God Bless!!

Deuteronomy 31:8 It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.

Psalm 34:17 When the righteous cry for help, the Lord hears, and rescues them from all their troubles.

Another day in Minnesota as we got a few inches of snow. Quite the snowy winter this year. Thank God for good friends and neighbors to help me shovel out of this. 9 more days and off to Florida we go for two weeks. Hoping the snow is gone once we get back

Today I am having a high anxiety type of day. Trying to stay positive but worried all the time. Next meeting with a doctor is not till April 4th. Sucks I can’t get out of my own head sometimes thinking the worst will always happen to me. Meeting some friends maybe having some social time and a beer will calm down.

I have my first ever CT Chest Scan today. Quite the different experience taking all these tests that I have. I have never been through anything like this in my life. I am glad that they tell you what to expect before they do it since that contrast made me feel so weird and warm. I think I am going to get lucky enough to miss out on an angiogram or at least that is what I hope. One thing I was wondering was anyone told to stop exercising after they found out that they had these conditions? I have been told by my cardiologist and surgeon that I can keep exercising just nothing that is strenuous. This is hard for me as I have been lifting weights and doing cardio now 5 days a week for the last 12 years. I also play volleyball on Wednesdays in one league that I am in. I have moved on to light weights and cut the hard cardio down to keeping my heart rate between 115 - 125. I have a great resting at heart rate between 52 - 58 so that helps with some of these tests. Do you think I should continue working out as I do and will it help with my recovery when i have surgery? I know I read somewhere that Rob had stopped doing his exercise because he was worried. 12 more days till vacation in Florida so hopefully I can get away and have some time to relax and get my mind of this stuff. Also I need to get away from all this cold and snow up here.

Happy Wednesday to you all again. I have only been on this community for 1 day and I feel like I spend a lot of time out here reading everyone's stories. In ways I feel like I get excited to go and have it done since everyone has amazing stories to tell. I know the recovery to be 100% is long but it seems like getting back to doing some normal things in life can be pretty quick. I know I have only known of my issue for a short time I still feel anxious to get things going. I don't like living in the fear of having problems. Right now I am stuck in a spot of how I want to choose my surgeon. I have done a lot of research on the procedures and I have also done extensive research into the surgeon I met. He has outstanding reviews and everyone has seemed to have had great outcomes from the surgery. Then I think I want to wait and at least have a chance to talk to the doctors at the Mayo Clinic because I know that hospital does tons of these every year and is well known for how great they are. I am looking at doing my surgery at the end of April since we have a family spring break planned coming and the doctor said I am still good to wait off till then. We get back from vacation 4/2 and then I have an appointment with the Mayo on 4/4. Do you think I should just stick with the surgeon I met or wait to meet with the Mayo. I do not want to push this off but my surgery would not be scheduled till middle of April anyways. So I was not sure how quickly I can get one scheduled after I get back. I am not a patient person so I know something is wrong and I need it fixed I want to go immediately. But I also want to go to the best hospital I can. The other thing is the Mayo is 30 minutes further away from my house and I don't want my family to have to drive so much when they want to come see me. Either they drive 30 minutes to see me or 1 hour. I know I am overthinking this all because that is what I do as I let things consume me. Thanks for reading and also all your excellent posts that help calm the fears of my recovery. I am looking forward to get on that road to recovery ASAP!!

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence. Helen Keller

I was born with a heart murmur and all my life I was told by people that it would go away and nothing to worry about. My dad passed away at 47 from heart issues and I am reaching 40 this year. I recently thought that I would go and get an echo to see how my heart was doing and then setup to meet a cardiologist on how to manage my heart for the future. Well the echo came back with possible bicuspid valve and an aneurysm. I started doing some research and got myself almost to a panic attack. I finally pressured the cardiologist to get me in for an MRA to see how everything measured since the numbers were high in my echo. The MRA did reveal that I am bicuspid and have an aneurysm but not as big was initially shown in the echo. I finally met with a surgeon on 3/4/2019 and he wants me to get surgery in April. Everything has come so fast for me and I have not really had a chance to process this. I am also going to go to the Mayo Clinic to get a second opinion and also talk to their surgeons. I did some research and Mayo is 2nd in these surgeries next to Cleveland and they are one of the best in the world so I am hoping to get in there to have my surgery. Thanks for taking time to read my story and maybe help me through this journey.