Dan's Heart Valve Journal

Our holiday picture! I'm living the dream because of them with a new longevity!

Today is a big day for me. It marks 3 months since my bicuspid valve was replaced with an Edwards Inspiris Resilia tissue valve by Dr. Patrick McCarthy at Northwestern Memorial Hospital in Chicago. I can't believe how normal and good I feel! In fact, sometimes I forget that I had open heart surgery. The 3 month mark is a big one because I can switch from Warafin to a baby aspirin plus I can begin weight work at cardiac rehab! Tonight, I will be celebrating with my friends and a few beers and tomorrow at cardiac rehab I can switch from 50 minutes of cardio to 30 minutes of cardio and 20 minutes of weights. As always I am so thankful for this community. I appreciate all the knowledge I have attained and the friendships I have made with my fellow Heart Warriors! I could never have done this without you!

For all of you in the waiting room keep a positive outlook. I know it can be hard and scary but this surgery has come a long way. I feared this surgery my entire life and here I am at 3 months post op living a normal and improved life. Select a great surgeon who is affiliated with a great heart hospital and place your fate in their hands. Once you get to the other side, grind everyday. Walk, walk and then walk some more. Then go to cardiac rehab and crank it up a few notches and you will be as good as new!

Here is a good article on the Edwards Insipiris Resilia tissue valve. A lot of research is going on by everybody in the waiting room and you probably hear different valves being tossed around in this community. This is a good piece of information to read and absorb. Best wishes fellow heart warriors!

https://www.rbhh-specialistcare.co.uk/aortic-valve-replacement-patients-benefit-from-the-new-inspiris-resilia-valve/?fbclid=IwAR3nVKk6xur96HX-UYKjfMuYDssQ7mQJjhAzWDyOX2EBKtLsuKKL8mjNNYk

I can't believe it has been 2 months! I still can't believe I did this! I am now 100%! Pain free. Medication free. Tylenol free. Doctors free. I'm working my normal hours and just completed my 11th cardiac rehab session. My scar is fading. Life is good. I am happy. My wife and daughters are happy again!

As always, its great to be a part of this community. I could NEVER have done this without you!

Today is 7 weeks since my AVR surgery for my BAV. Not a whole lot to report which is a good thing. I am feeling great - 25 years ago great. I am completing my 2nd week of cardiac rehab and a typical session is 25 mins on a bike and 25 mins on a recumbent step machine both at level 5 which is challenging but good. Discomfort in my chest in mostly gone. No doctor appointments on the schedule for the rest of the year which is a great feeling. My wife and two daughters are starting to get back to normal and are smiling again. I am saddened by the grief and pain my health experiences this year caused them. At the same time, I couldn't have done all of this without them and they are the main reason I worked so hard. That's about it for now. As always thanks so much to everyone on this site. You have all made this very tough experience a tolerable one and I am in shock that I have my life back as I knew it in just 7 weeks!

While reading everyone's great posts and comments on this awesome site along with reflecting on my own experience I can't help but think how open heart surgery has changed in the last 50 years. A very close uncle of mine who lived with me when I was growing up had open heart surgery in 1977 when he was 44 years old.. He had a vein harvested from his leg and it was used to bypass a blocked artery in his heart. It was all very scary at the time because they only had been doing this procedure for about 10 years. Following his surgery, my uncle spent about 10 days in the hospital and his recovery wasn't too much different than now. He began feeling better in about 4 months but due to the significance of this relatively new surgery he was considered disabled and collected disability benefits from the federal government for 10 years! Ronald Reagan was in office when he received a letter from the federal government requiring him to go for a physical to determine if he was in fact still disabled. At the time he received the letter, he was 54 years old, felt 100% and was living the life of a retiree. Well he passed the physical and had to return to work because his benefits were cut off.

And look at us now. After heart surgery we are out of the hospital in 4 to 7 days. Back to work in a month or so. No disability benefits. Thousands of these surgeries are performed each year and it has become almost routine compared to 50 years ago. We now have online communities like this one to support each other, books (thanks Adam), YouTube videos of the different surgeries (I watched 7 different valve surgeries), expert doctors, well trained hospital staffs, online communications with our doctors, test results on My Chart which arrive on my phone many times before I even hear from my doctor. If I had all this information 40 years ago when I was first diagnosed with a heart murmur I would like to think that I wouldn't have been as terrified and avoided doctors completely. In any event, thankfully we are all in good hands. All of us can feel confident because we live in an era that has done so much with the heart and we have communities like this great one to help us along the way. Thanks again everybody for giving me a forum to share my thoughts.

Today is a big day. 6 Weeks Post-Op which means I get all my physical restrictions lifted. I am now able to do simple things like carrying a case of water into the house and lifting both hands above my head which is a great feeling. Yesterday also was a big day. I went for my baseline echo which will be used for future echo comparisons. Also yesterday, I was walking to my car after cardiac rehab and I said to myself wow I feel great. Great as in 25 years ago great. Things seem more clear and I have a skip to my walk. I find myself getting out of bed earlier. I also ditched my incision shield and am not taking any Tylenol during the day.

I will be forever grateful to this community. Thanks to the information and great people on this site I transitioned from googling "I am having heart valve surgery and I am scared" back in June to changing hospitals and surgeons to the no. 7 hospital in the country (Northwestern Memorial) and to one of the top heart surgeons in the world (Dr. Patrick McCarthy). There is NO WAY I could have done this on my own. I ran from my heart murmur and doctors for 40 years after being diagnosed when I was 18. Last month I walked into the Northwestern on September 6, 2018 and stared surgery in the eyes. I walked in on a Thursday and walked out the following Sunday.

I am also taking part in 2 heart valve research projects at Northwestern to pay it forward. 1) Bicuspid Valve Study and 2) New Echo Software and 4D MRI. Additionally, I am guiding both of my adult daughters (25 and 28) through the process as well. They will both have echos to determine if they have bicuspid valves. My oldest had hers and she does not have a bicuspid valve. My youngest is scheduling her echo before the end of the year.

Well this is my 6 week report. I will now get back to my insurance bills and insurance company. In 2018, my 3 hospitalizations leading up to and including heart valve surgery now totals $540,363.50! Thanks everybody and thanks Adam for all you have done!

This past March, I had a very serious bleeding episode while having periodontal surgery to get ready for my valve surgery. At the time, no one at my local hospital could discover what was causing the bleeding. As detailed in "My Valve Story" I ended up having 3 surgeries to stop the bleeding and was in the ICU for 2.5 weeks. Following this experience, I was told to see a Hematologist prior to heart valve surgery to determine if it was safe to undergo surgery. I met with a Hematologist at Rush University in Chicago. He administered 27 blood tests. Only 1 test was considered low and it was my Von Willebrand Factor which is a bleeding and clotting disorder. It was low but not low enough to cancel surgery. The Hematologist at Rush recommended that I get an IV of Humate-P just prior to surgery which would raise my Von Willebrand Factor to help prevent bleeding during surgery. When I met with my surgeon Dr. Patrick McCarthy at Northwestern prior to surgery he they would research my situation and administer the Humate-P if needed. My surgery was a success and I didn't bleed excessively or need any blood transfusions. While at Northwestern for valve surgery, a Hematologist (Dr. Kwaan) was notified to investigate my situation. He visited me in my step down room and said that he had been studying my situation and believed that my calcified bicuspid aortic valve could be the cause of the Von Willebrand disease that I had. The rushing of the blood across the stone like calcification on my valve could break down the clotting factors of my blood. Von Willebrand Disease is either inherited or acquired. Post op I have been working with Dr. Kwaan and he wanted to examine my blood after the new valve was in place. As a result, it turns out that my blood is now normal and there is no evidence of Von Willebrand Disease which confirms that I had acquired it as a result of my very calcified valve. My valve was severe/critical. The AV area was .80 and the indexed area was .43.

This community has been a wealth information for me. I just wanted to post this information just in case there are people in this community who have severe/critical aortic stenosis who have experienced bleeding issues especially during dental procedures. In dental procedures, bleeding tends to be more prevalent.

This is another area that I have learned a lot about so if anyone has any questions about Von Willebrand just let me know.

Happy Sunday Heart Warriors! As we all know best. The past is History. The future is a Mystery. Today is a Gift, that's why it's called the Present. Unwrap your gift of today and enjoy!! GO BEARS!!

Make sure you check out Adam's interviews today from the Heart Valve Summit with Dr. Eric Roselli (Cleveland Clinic) at 9:00 a.m., Dr. Steve Bolling (University of Michigan) at 2:30 p.m. and Dr. Patrick McCarthy (Northwestern University) 3:30 p.m. on Heart-Valve-Surgery.com's Facebook Page. If you miss the live session, the interviews should still be on the page afterward. Knowledge is power and a lot of great information will be provided. Dr. McCarthy was the surgeon I selected for my surgery.

My incision at 5 weeks. Dr. McCarthy and his team at Northwestern really did a great job. I am very pleased and recommend them highly!

I can't believe it has been 5 weeks since my surgery! Time really flies on the recovery side. For all those in the waiting room, life is much better on the other side as well. The biggest difference is peace of mind. My heart is healthy and I feel healthier in general. I am back to work. I am walking 30 minutes a day at a 3.0 mph pace as a workout. I begin cardiac rehab in 2 days. The plan is for me to participate in cardiac rehab through the end of the year. The biggest thing since my surgery is that I am back in my bed without a wedge pillow and my sleep in normal. I find myself waking up refreshed and wanting to get out of bed earlier. Looking back even though I was asymptomatic I think I had become lazier. It has been a long time that I wanted to get out of bed earlier. Now I have a desire to get out of bed and start my day. I feel more alive. I still have some discomfort/soreness/sensitivity in my upper chest. The Incision Shield which is sold on this site helps out a lot. I use it during my workouts or when I am going to be walking a lot. Because I had a bicuspid valve my 2 daughters (28 and 25) are being tested. My oldest daughter had a echo this morning so we are anxiously waiting the results. Other than that, all is great and I feel much better than I thought I would and the surgery was not as bad as I thought it would be. Keep grinding Heart Warriors and keep a positive attitude because it really makes a difference. I will close with one of my favorite quotes which is very pertinent to all of us …. Some people feel that their glass is half empty and spend the rest of their lives looking for the other half. My glass is half full and I'm going to spend the rest of my life sipping it!

Today I had my first post op appointments with my cardiologist and surgeon. Great News! I am excited to report that I can drive, return to work at my office, sleep on my side, get enrolled in a cardiac rehab class and move forward with my life as I know it. The best news is that my cardiologist wants me to have a baseline echo in two weeks and said he doesn't need to see me for a year!! My surgeon said he doesn't need to see me anymore unless something pops up!! This entire experience has been amazing. The heart surgery that I ran from my entire life was nowhere near the experience I envisioned. This community has meant everything to me on this journey. You all, Adam and this website have helped transition me from a terrified individual needing an aortic valve replacement to a prepared, knowledgeable and confident patient who in 4 weeks after surgery has most of their life back. Thank you everybody and Adam! If anyone needs valve surgery or is looking for a 2nd opinion I recommend my surgeon Dr. Patrick McCarthy, my cardiologist Dr. James Thomas, and the professionals at Bluhm Cardiovascular Clinic and Northwestern Memorial Hospital in Chicago HIGHLY.

Today is 3 weeks since my bicuspid valve was replaced with an Edwards Inspiris Resilia bovine tissue valve. I am very pleased on how my recovery is going. The biggest thing is that I am walking 1 mile twice a day usually after breakfast and prior to dinner. I am either working 1/2 days at my office or working from home with my phones forwarded live. The discomfort in my chest seems to be reducing. I am wearing an incision shield when I leave the house which helps with my clothing contacting the incision area. It is not the incision but more the surrounding area which is very sensitive. While at home I am wearing a button up shirt open which prevents any contact. I am managing my pain with Extra Strength Tylenol during the day and Norco during the night if needed. I am now sleeping a lot better using a wedge pillow in my bed which has helped a lot. Getting a decent night sleep really helps although I still find myself napping during the day. My follow up appointments with my cardiologist and surgeon are next week so I am hoping I can get my driving privileges back at that time. Each day I try to just march forward and walk and work as best as I can. Thanks again everyone here for your support. I can't believe it has been 3 weeks already/

Good Morning from a cool brisk Chicago! 1st of 2 - 28 min daily walks!

Day 15 Post Op - Back to work 1/2 days plus 2 - 20 min walks totalling 1.8 miles. Lets go!!!

Wow I can't believe I have been on the "other side" two weeks already. Things are going good. Feeling stronger every day mainly because sleeping on my back is improving. This past week I moved from my recliner to my bed with a wedge which seems to be working better plus it allows me to have some normalcy back in my life. I am walking twice daily and increasing the walks 1 minute per day. Today I am up to two 19 min walks which amounts to about 1.6 miles per day. The only discomfort I have is in the chest area. Not only the incision but the surrounding area as well which was obviously compromised during the surgery. When I walk the movement of my shirt causes some pain to to my chest area. I ordered The Incision Shield which I am expecting today. Other that my life on the recovery side is going good. For those in the waiting room it is true - as Tom Petty use to sing "the waiting is the hardest part!" Keep that in mind and also visualize a successful surgery and hospital stay. Put your fate in the hands of your surgical team and hospital and do the trust fall Also the day of surgery focus on waking up and not the crazy stories and fears you hear on here. When you wake up you will deal with the breathing tube and all the other stuff just fine. Thing positive gang and make it a great day!

Good Morning H-V-S.com World! Happy Saturday! Live more, complain less. More smiles, less stress. Less hate, more blessed. #begreattoday#day9postop

Wow. Can't believe one week ago I was in pre op waiting to be called into surgery. Its been a great week! Unlike anything my mind thought it would be. I am siiting on my front porch drinking a coffee as I write this journal entry. My days consist of getting up early, showering, eating breakfast and going on one of my three daily walks. We increase our walks one minute each day so today I will be walkng thee nine minute walks which will be about 1.2 miles total. I am in no pain and just feel discomfort in my incision area. The discomfort level ranges on a scale of 1 -3. I have been taking 6 extra strength Tylenols each day and a 5mg Norco twice during the night. I own an insurancy agency and have been working from home daily. My phones aren't live yet but I am returning phone messages and emails. The only challenge I am having is sleeping on my back every night because I am a side and stomach sleeper. I sleep mostly in a recliner which seems to be getting alittle better. My wife Donna and two daughters, Nicole and Alyssa, have been by my side everyday. Well thats it for now. Make it a great day today everybody. If you are waiting for surgery or on the recovery side take it one day at a time and fill your mind with positive thoughts and visualizations!! Ciao!

5 Days Post Op and Enjoying the Recovery Side!

I always wondered how my new valve performance would compare to my old valve on the echo reports. Using the 3 categories to determine the severity of aortic stenosis here is how my new valve is comparing, My old valve was severe to critical in each category. Its unbelievable!

Valve Area (cm2)
Old valve .48 New Valve 3.12

Maximum Aortic Velocity (m/sec)
Old Valve 5.0 New Valve 1.9

Mean Pressure Gradient (mmHg)
Old Valve 54 New Valve 6

Me and my mini on Dischsarge Day 3 of post op. Hello recovery side! Can't believe I am here!

Breakfast 2 Days After Surgery

Happy Saturday! Moved to a step down room yesterday 24 hours after surgery. Just have a pace maker wire/device and a small chest drainage tube connected to me. Went for a walk half way around my floor yesterday. Also ate for the first time yesterday and had a nice piece of salmon with a honey mustard type sauce which was very good. Last night I took Norco for pain plus I slept in a recliner which which worked out much better. I will be walking more today and will work with physical therapy today. Also hope to catch some some college football games. Pain is not too bad just feeling tender in the chest.

Hi everyone!

This is Dan's daughter, Nicole. Dan's surgery went very well. Dr. McCarthey said the new valve is working great and his heart is also working great. Dr. McCarthey also performed a mini sterotomy and his incision is 3-4 inches long. He also said his valve was definitely bicuspid and very calcified! The breathing tube came out an hour after he was brought to his room in the ICU and he said it wasn't bad at all. He is talking with us and he is in great spirits and is very excited he can watch the NFL opening game tonight! He is also as motivated and positive about his recovery as he was for his surgery.

We are very excited that he is doing so well and he has overcame this huge hurdle. Thank you everyone for all the support and kind words you have provided my father leading up to surgery today. It truly helped him cope with the looming surgery day.

Its Gameday! Today is my surgery day. I have known this day was inevitable for the last 40 years. After avoiding doctors for 40 years due to my "heart murmur" terrifying me to being rushed to the hospital this past January and learning I have Type 2 Diabetes and a "Bicuspid Aortic Valve" with serious/critical stenosis to having a life threatening bleeding episode this past March under the care of a different cardiologist and hospital.... here I am. It's been like a yellow brick road which has taken me to Northwestern University and Dr. Patrick McCarthy. Thanks to this community I can honestly say that I have never been more prepared for anything in my life. Let's go! I am off to Northwestern for surgery this morning at 8:30 a.m. Thanks again everybody and I will report back when I can. Ciao!

Getting ready for my S-Day Thursday and I'm packing Adam's 5 Invisible things in my mind from his book.

COURAGE
TRUST
HEALTHY THOUGHTS
PATIENCE
LOVE

Lets goo!!

Good Morning World!! Happy Sunday and Happy Labor Day Weekend. "When life throws lemons at you make lemonade with them!" Boom! Be great today everybody! 😊🤙

I have heard others express how they felt when they have seen their pictures pop up on the Upcoming Surgeries list … now there I am. It is a weird feeling lol. Still distracting myself each day, thinking positive thoughts and visualizing a successful surgery, hospital stay and recovery. I appreciate everyone here for being so supportive and informative. It really has helped a lot and has made it easier to get to the place I am currently in!

Here is the link for Cardiology and Heart Surgery Rankings.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery

Question for the people on the recovery side of the equation ... How did you nourish your mind prior to surgery knowing the seriousness of your condition? I am asymptomatic with severe aortic stenosis. I am finding it difficult to tune out the thoughts of the seriousness of my condition while exercising. I am just walking 1 -1.5 miles twice per day and not doing anything difficult. Prior to the new diagnosis and surgery being scheduled my mind was at peace and free. Now I am waiting for symptoms to develop when there aren't any. As far as the surgery, my research and hospital/surgeon choice has allowed me to place my fate in their hands. Being in this holding pattern can be kind of scary due to all the information that has been provided. Any thoughts would be appreciated. Thanks in advance.

Edwards Inspiris Resilia Aortic Valve.

I made my decision today to have minimally invasive aortic valve replacement surgery (approx. 6 inch incision) at Northwestern University. The surgery will be performed by Dr. Patrick McCarthy on Thursday, September 6, 2018. The replacement valve being used will be the Edwards Inspiris Resilia tissue valve. The surgery is projected to be 3 - 4 hours and the hospital stay is projected to be 4 days. I also decided to participate in Northwestern's Bicuspid Valve and ECHO/MRI study programs. And now the 6 week waiting period officially begins. BOOM! LETS GOO!

I'm feeling anxious today because tomorrow I am heading to Northwestern University Hospital in downtown Chicago for an echo and meetings with the surgeon who I have researched and chosen, Dr. Patrick McCarthy, and the cardiologist he works closely with Dr. James Thomas. I was there yesterday to deliver my records which were about 250 pages along with a CD of my most recent cath, ct of the chest and echo. I have spent a lot of time on this site along with researching bicuspid heart valves and it feels good to be able to put my fate in the hands of these professionals and Northwestern University. I am asymptomatic and am eager to hear my options. Tomorrow at this time I will have a much better handle on things. I passed on my evening walk tonight because I just want to lay low and watch my Cubbies take on the Arizona Diamondbacks, I am a partial season ticket holder and I was supposed to be at the game tonight with one of my best friends and my 2 daughters but chose not to go because of my early start tomorrow. Stay tuned!

On Facebook Live tomorrow, July 18th. Look up Northwestern Medicine and join live at 1:15 CST.

For those of you that are on Facebook, the hospital and surgeon I will be most likely be working with, Northwestern University in Chicago and Dr. Patrick McCarthy will me making a 30 minute Presentation on Facebook Live tomorrow, Wednesday, July 18, 2018 at 1:15 pm CST. The presentation is entitled Advances in Cardiac Surgery. Cardiac surgery is one of the most rapidly evolving fields of medicine. Learn how Northwestern Medicine is pioneering these incredible advances! Just look up Northwestern Medicine on Facebook tomorrow at 1:15 PM CST and join in.

I have a bicuspid aortic valve that needs replacement due to aortic stenosis and it being tight. I am also asymptomatic. I am a research nut and am currently reading Adam's book and I am finding out that if just the aortic valve needs to be replaced that the minimally invasive approach is being used instead of the full sternotomy. In preparation for my next set of meetings at Northwestern University I just to have confidence in my questions and want to have a better idea if this minimally invasive approach is the best way. I am all for less invasive and a quicker recovery. Sometimes I feel when I ask these questions I feel like I am looked upon as "wimping out" but I really do just want to take advantage of the technological advances and be as current and knowledgeable as possible. If you are or were in the same situation I would love to hear your thoughts. I feel comfortable asking this community because I am sure most know how I am feeling and that its not about wimping out. Thanks in advance!

Question for those who were asymptomatic prior to valve surgery. Following your valve replacement did you feel better than you did prior?

Due to my severe bleeding problem following gum surgery to prep for heart valve surgery, I had to see a Hematologist for surgery clearance. I just received clearance for surgery from Dr. Gezur at Rush University in Chicago. In his opinion, he wasn't able to find anything after taking 20 tubes of blood. He feels my bleeding issues were due to an overdose from Lovenox. I bridged from Warafin to Lovenox for 5 days prior to gum surgery. He also is recommending a tissue valve and not mechanical. Next up is an appointment with my cardiologist which will be on June 29, 2018.

My heart is not just mine. This is all for my girls

Me and Donna. She has been by my side every step of the way!