Deb's Journal

Hi all! Long time no post and planning to post from shortly after surgery to now over the weekend. Today, at 10 weeks from sternotomy, wondering if anyone has experienced mental fog, causing some attention to detail issues and blur when thinking outside focus. I excelled at these skills and critical thinking before bicuspid failure and surgery so will they return? I work in a high mental demand role and mental fog is very disturbing. Has anyone experienced this symptom? Is this anesthesia lingering, my beta blocker medication, or just my recovering and mental fog will clear at 3 - 6 months after surgery?

I’m back.  Well nearly back, but certainly well enough to post. 

Open Heart Surgery was a success on Thursday afternoon, August 31^st and feeling great on Day 13, Wednesday, September 13^th (having the day of the month equal to the days since surgery makes day calculation easy).   Recounting the day of surgery, I clearly recall being rolled from the operation preparation room to the operating room, chatting with the OR nurse on the way, and joking with the OR Team before the mask was positioned on my face and I was out. The next thing I remember is waking up in the recovery room with severe pain in my right shoulder.  My research called that “referred pain” from air trapped in my chest (I experienced this in my c-section with the birth of my oldest son). Thankfully, they were able to remove the intubation tube in the recovery room before I awoke (so my breathing and lungs were good), and as a result, I was able to talk easily without any discomfort, but the pain from the shoulder was acute. From the nurse's timeline, they then moved me to the ICU, and Greg joined me about 2 to 2 ½ hours after surgery ended.  Although I was conversant, the early moments were of course foggy. Greg told me he left at around 10 PM that night after being allowed in the room at 7 PM.  Not a lot was said. I was in and out of sleep of course. The next morning, I started walking the halls with the aid of a walker and a nurse pulling the stand with all my tubes and wires. I remember my legs shaking and telling the nurse, but she said it was okay even though I was within the first 24 hours of surgery. They also gave me two breathing devices (spirometers) to practice ten times four times a day each and told me I must walk four times a day. Both my surgeon, Dr. Riley and my cardiologist, Dr. Klassen visited me in ICU and were happy with my recovery progress. Dr. Riley was excited he was able to insert a size 25 Inspiris Reilia Aortic Valve for the valve in valve replacement valve capability in 15 - 17 years. A 220 lb. man could use this size, so he was happy that he was able to get it to fit well during the surgery.

Although the first few days I was alert, I also still had the lingering effects of the surgery. For instance, I found out yesterday, I responded to her text on September 1 (the first day after surgery). I had no recollection of doing that (and really had limited desire to even look at a phone, or talk to anyone other than nurses, and Greg/sons). Despite the brain fog, and since I was doing so well otherwise (vitals, eating, and walking, etc.) in ICU, they moved me to the Cardio wing on Saturday afternoon, September 2^nd, after the nurses removed the bulk of my wires and tubes. I asked a nurse in the cardio wing what was the culture of their area, and she told me it was like “boot camp.”  While there, they taught me how to shower with the incision. I was required to sit in recliner during the day and move to bed in the evening. I don’t know if by design, but they stripped the bed of linens during the day, making wanting to lie down (vs reclining), not possible or desirable. Each walk (4 per day), the nurses encouraged me to go farther and farther.  Mind you, we are talking about a hall at first which turned into a loop around the halls by the time I was discharged.  I will admit that I did not want to do the final walk the first few days of recovery (usually around 7 PM), but the nurses insisted I try.  After each walk, it was an invitation to take a long nap. The 2^nd night, Greg said he left before 8 PM after my final walk and put in my newly made bed.  That pattern continued during my hospital stay.   

Walking further, eating more, having clear lungs, a steady heart rate, lower blood pressure, and a “can do” attitude, they sent me home on Labor Day, September 4^th a day earlier than expected. I was greeted at home by two of my three sons (my other son who coaches college football could not join).  A nurse, Savannah, followed us home to observe my recovery areas at home, help Greg with the pill box that he now needed to manage, and start the routine we would take in documenting my vitals each day.  She even went to the pharmacy to pick up a few prescriptions. The first three days at home were the most challenging – which took me to the end of the first week. However, it seemed that each day I felt a new part of my body/senses turning on.  The first was my taste and smell.  On Wednesday night, I could feel my brain “reboot”. That night, I had the most vivid dreams (has anyone else have that experience?)

By Day 8, Friday, September 8^th, I was starting to walk outside and was able to stay up the entire day, sleeping from 9 p.m. to 7 a.m. (normal sleep is 7.5 hours per night). I started to feel refreshed from sleeping versus tired from sleeping (did anyone also have that sensation?). 

Over the last two days, Greg and I walked over 20 minutes in my neighborhood (.9 miles), which is a milestone that enables me to drop the three additional planned walks. I walk around the house or on errands each day as well. So, I am not idly sitting still. I have also started to add more normalcy. I am communicating with others more. I will say that until the last few days, the desire to log on to the computer or even look at my phone was non-existent. Talking was hard enough.

I feel that I am 80% of my recovery and will find out more at both my doctor’s appointments (surgeon and cardiologist) tomorrow. Also, I will start cardio rehab with orientation tomorrow afternoon. Anyway, sorry for the delay in my posting, but I want all to know that I am so thankful for all the thoughts and prayers over the last 13 days.  I really did feel the impact from all the love and support.   Special thanks and love to Greg who was the most amazing caregiver in helping me through the whole journey, with more, yet less harsh, to come. For those who read this and are awaiting your surgery, if you have any questions, I will be happy to answer them for you, and please know I will be praying for you too. 

Today's the day! All packed and ready to go! Enjoy the last days to have fun and relax a bit. Felt more calm yesterday than the day before the postponed surgery. Thanks to Grace's post on what to bring. Other things to add is that should not bring any lip balm with petroleum as it is flammable around oxygen. Also found out not to get color in my hair after 4 weeks before surgery as the chemicals in the anesthesia and medication mix poorly with the ammonia in the hair color. Both were points I was glad to hear about in my preparation. Off I go! I've got this!

Decided to update "My Story" to include from first discovered to present, and make it a living document until I am beyond recovery, especially now that I am within days of my sternotomy. Will post on "My Journal" when I make a major update like today.

My story begins when I was in my mid to late forties and I first became aware of my heart condition. Before this time, I had consistently had normal to low blood pressure with little above normal. But that changed when I discovered my blood pressure had risen and was quite erratic, plus I was having heart palpitations. My GP referred me to my cardiologist, Dr. Kevin Klassen, and that is when I found out I had a bicuspid aortic valve. Had annual echocardiograms until he felt we could move to every two years due to my consistency with the echo results. But in October 2022, I had my first echo with stenosis present and that was the start of the road to surgery.

Met with Dr. Klassen in May 2023 to discuss where I was 6 months after my stenotic aortic valve echo and how my fatigue and memory issues (not directly a symptom, but symptom of considerably less energy/fatigue) could be early symptoms. My 5/26 echo was scheduled then and did not qualify me for surgery, but the 6/30 echo with contrast at HonorHealth (HH) Shea Hospital did, but it was borderline. On 7/17 I had a cardiac catheterization to see if I had any blockages, and while having none, it did confirm my qualification for surgery.

For every meeting with doctors and preadmission, I brought 10-17 questions and my last 4 weeks blood pressure log. I am thankful I prepared for each session as there are many factors needing clarification I addition to the questions you think of when you are in the consultation.

Met with Dr. Robert Riley and his team of four for over an hour on Tuesday 7/25 and it was an outstanding consultation. I feel extremely comfortable with his team after the genuinely open conversation. They heard me loud and clear that I want to have my surgery to replace my stenotic bicuspid aortic valve as soon as possible because I am physically uncomfortable with the symptoms as well as mentally frustrated with feeling this way along with the wait. At this time, my CT scan was ordered for 8/11.


When Dr. Riley's office contacted me with my surgery date of 8/28, I was thankful, but frustrated that I would have to wait another month and began the process of getting a second opinion. After watching the Heart Valve Surgery 8/27 webcast on "The Lifetime Management of Heart Valve Disease" I became aware of the capabilities of a "center of excellence" or a hospital tied with a university, hearing Dr. Johnston's story. Using the surgeon finder tool, I was able to find two doctors in the Los Angeles area to pursue, with LA being an hour plane ride, 6 hours’ drive in car, and home to two of my three sons and their family.


USC Keck Medical Center called me the morning after my submittal on Heart Valve Surgery.com Surgeon finder and my support coordinator told me they could arrange for a sooner surgery than 8/28, but I would need to meet with Dr. Baker the following Tuesday, 8/8. Dr. Baker opened with “How about Adam Pick and Heart Valve Surgery.com that he started. What a resource to patients like you.” I felt like I was in a special club as I was meeting with the chief cardiac surgeon at Keck. Dr. Baker had all my test information and told me that I would need to have the sternotomy to limit the risk of aortic aneurism and the risk of a calcification on my valve coming loose and causing a stroke. I agreed that this was reasonable and asked for when I could have surgery. "How about next Thursday, 8/17" and I almost fell out of my chair. I moved forward with this surgery option analyzing the multiple factors between the doctors and recovery details. But I could not make my decision until my meeting with Dr. Riley to find out about the CT Scan findings and my surgery type.


Met with Dr. Riley and his team for over an hour on Tuesday 8/15 to discuss the CT scan finding and his determination for my surgery type. He explained that I will have the sternotomy due to the small size of my aortic valve and aortic root, drawing a picture to illustrate the capabilities open to him with open heart surgery.


Decided to go with Dr. Riley as I preferred being discharged to home instead of to a hotel. Also, the number of days between the surgeries was only eleven, so it became not as significant of a matter to stay with my later one in Scottsdale. Dr. Riley stated my recovery could be 3-5 weeks and I might be able to start back to work in three weeks if I initially worked part time to build up my stamina.


Tomorrow, 8/24 is my Pre-Admission Testing at HH Shea. I understand I will get a big binder with information for my surgery. Planning to bring my questions and list of what to bring to the hospital (thank you Grace!). I just found out that a friend of mine from Mesa just had his sternotomy at USC Keck but with Dr. Starnes (1-2% worldwide population have bicuspid aortic valve). Heard from PCP office that the first 3 days are the worst and to make sure I have my medication every 6 hours - set an alarm. Now I am researching helpful tips for Greg, my husband, for while I am at the hospital and when I come home.


Thanks to Heart Valve Surgery.com and Adam Pick for this amazing resource and community!

Met with my surgeon, Dr. Robert Riley, today to discuss the findings from the CT scan and I will have the sternotomy on Monday, Aug 28th, due to my small aortic valve and aortic ring.  I am happy with this decision as the second opinion also had me with the sternotomy for similar reasons.  My surgery will be 3 hours, 4-5 days in hospital, and incision will be 8 inches, but will only need Tylenol for pain management. Expected recovery is 3-5 weeks due to good health going into surgery and I should be able to return to work after 3 weeks if start part time for a couple of weeks.

Getting a second opinion for my AVR surgery with Dr. Craig Baker at Keck Medical Center of USC and my consultation is set for the morning of 8/8. Very impressed with the Surgeon Finder capabilities and got a call from Keck on Monday after submitting appointment request on Sunday, the day before. Love that Keck has a dedicated support coordinator that is so responsive by email and phone (she says when I will hear from her next and then she fulfills it) and that Dr. Baker can see me next Tuesday. Trying to find out if I can get my surgery sooner than 8/28. Fed up with the symptoms, the wait, and I want to get back to work and my life.

I am soon to be 62 and excited to have my surgery date set for August 28th to replace my bicuspid aortic valve in severe stenosis. I really enjoyed meeting the cardio surgeon, Dr. Robert Riley, and his team of 4 in a one hour consultation. They were all genuinely interested in getting to know me and my concerns, plus they informed me of my risk of aortic aneurism that is sometimes associated with bicuspid aortic valves. Riley also spoke of lifetime management of heart valve disease and since I am interested in the tissue valve, would like to set me up for when it is time to replace my valve again in my 70s with the "valve in a valve" opportunity. Have CT scan on 8/8 to find out more about the size and condition of my aortic root and ascending aorta to see if I would be eligible for the mini-SAVR, but happy to have any form of aortic valve replacement surgery to get a fully functioning aortic valve, like the sternotomy. I am not a fan of the stenosis symptoms, so looking forward to beyond recovery.

I am having a left heart catheter from the wrist procedure tomorrow at the hospital with a doctor from my cardiologist office to help understand my shortness of breath symptom. Has anyone had this procedure before their aortic valve surgery? My consultation with the surgeon, Dr. Robert Riley, is next Tuesday, 7/25.