Hi All! This journal entry is for those of you in the waiting room or who recently had surgery. I always wondered what my life would be like 1-2 years after surgery so this report is for all of you.
My heart valve surgery was on September 6, 2018. I had my bicuspid aortic heart valve removed and replaced with an Edwards Inspiris Resilia tissue valve at Northwestern Memorial Hospital by Dr. Patrick McCarthy. Today was my 1 year follow up with my cardiologist Dr. James Thomas at Nortwestern. My echo this morning was my 2nd echo since being out of the hospital. My 1st was 5 weeks after surgery to create a baseline and today was my 2nd. I am very pleased to report that Dr. Thomas said my new valve is functioning GREAT and I don't need to return to see him for 2 years!!! He said I am living in the "sweet zone" and to just follow up regularly with my family doctor. He also said that this valve should last 15 to 20 years and is built to receive a TAVR in a "valve in valve" procedure when the time comes. I also had a blood pressure medication adjustment and he said would like to see me lose 20-30 pounds (I have been enjoying life since surgery!) I told Dr. Thomas when I return in 2 years I will be down 30 lbs. This is now my focus and my new main goal. Its tough when you feel back to normal to not do the things you really enjoy. Growing up in an Italian family, eating was our medicine and celebration and I have probably been taking in too much. LOL
This site gave me the strength to move forward with heart valve replacement. I found HeartValveSurgery.com because I googled "I need my heart valve replaced and I'm scared!!!" The comradery and knowledge I attained from being a regular here was the most wonderful thing! It was here that I developed the strength and confidence necessary to move forward with heart valve replacement.
So to all in the waiting room and to those who recently have had surgery, develop your support system on this site and continue to stay close and march forward together. Think positive and let me be proof that you will get your life back and there will be a day when your cardiologist says "See you in 2 years!"
For those in the waiting room, life does go back to normal. Here I am 8.5 months Post Op. at my best friend's daughter's wedding! Boom!
7 Months Post Op!
Journal posted on April 6, 2019
Today is 7 months post op. Feeling great and often times I forget I had surgery. Only residual discomforts I notice are some aching in my left shoulder and my heart pounding when I lay in my right side. Not bad for undergoing major heart surgery! I am back walking outside on trails and in my neighborhood. My workouts slipped alittle during the winter months and I got bored with the "dreadmill." All in all, I feel atleast 10 times better than I thought I would going into this experience. Everything looks brighter! I am sleeping very well. My breathing is very normal. For those in the waiting room think positive and visualize a successful surgery, hospital stay and recovery and put your fate in the hands of your surgeon and hospital. For those on the recovery side, keep on grinding everyday!!
TIME FOR REFLECTION! I can't believe it has been 6 months since my AVR at Northwestern Memorial. I feel wonderful! Everything seems brighter. My mind is at peace. I am so proud of the health transformation I made this past year. It has been ALOT of hard work but very rewarding. 15 months ago, I was somebody who never went to a doctor and didn't even know that I had a severe/critical aortic valve, Type 2 diabetes, and Von Willebrand's Disease (a bleeding disorder acquired due to my heavily calcified valve). Now, for the first time in my life, I have a healthy heart and I am under a doctor's care. My blood pressure is normal! My Type 2 Diabetes is in control and I'm off insulin. My A1C has improved from 13 to 5.9. My Cholesterol has improved from 198/221/38 to 122/114/42. The Von Willebrand bleeding disorder I had acquired is now gone since my heavily calcified valve has been replaced! This has been one crazy ride. I could NEVER have done this without all the support and information I have received from this site. You all gave me the strength and the confidence to make this transformation. For all of you in the waiting room or recovering from surgery, keep grinding and marching forward each day!!
REDEMPTION DAY!! I am 5 months post op and am feeling 20 years ago great. My journey began a year ago in January when I went down due to a dizzy spell as I was walking into the United Center for a Chicago Bulls game. This led to a full year journey consisting of 3 hospital admissions, 30 days total in the hospital and heart valve replacement surgery in September. As I have been recovering from heart valve surgery and working hard on my type 2 diabetes I have been wanting to redeem myself so bad my marching into the United Center for a Bulls game. Well last night was the night. Below is a picture of my daughter Alyssa and I next to our courtside seats. Keep grinding everybody and thank you so much for your love and support!
Snowblowing during a snowstorm 4.5 months after AVR sugery. For those in the waiting room, think positive, keep marching forward, visualize success and be confident that your life will go back to normal.
4 Months Post Op
Journal posted on January 8, 2019
I had AVR surgery to replace my BAV on September 6, 2018. My 4 month anniversary past right by and I missed writing in my journal on the 6th of the month. In previous months, I couldn't wait until the 6th of the month to write an update in my journal because there were so many developments and I had so many emotions and so much to say.
This month the only thing new is that I completed cardiac rehab. However and MOST IMPORTANTLY my life is 120% back to normal and I feel 20 years ago great!! At times I shake my head in disbelief that I had open heart surgery.
As always, I couldn't have done it without my fellow Heart Warriors on this site. Thank you everyone from the bottom of my NEW heart!
Our holiday picture! I'm living the dream because of them with a new longevity!
The Big 3 Months!
Journal posted on December 6, 2018
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!
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!
The evolution of heart surgery makes me go hmmmm....
Journal posted on October 24, 2018
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!!
Heart Valve Summit
Journal posted on October 11, 2018
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!
5 Weeks Post- Op
Journal posted on October 11, 2018
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/
Day 15 Post Op - Back to work 1/2 days plus 2 - 20 min walks totalling 1.8 miles. Lets go!!!
2 Weeks Post Op
Journal posted on September 20, 2018
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
1 Week Post Op
Journal posted on September 13, 2018
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!
UNBELIEVABLE - Echo Comparisons between Old and New Valve
Journal posted on September 10, 2018
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
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.
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!
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!
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.
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!