Sandy's Journal

Hello Heart Warriors:
Six months today! Doing well. Many of us go through the side effects of surgery. Those include side effects from the actual surgery, medication, life style adjustments, emotional adjustments etc. I have had some of those too. My blurry vision continues and occasionally I  get numbness in my fingers and toes. Neither of them last too long and nothing too concerning. I am a 'type A' personality so I have made some adjustments to my lifestyle and how I approach life. Certainly learning to approach life one day at a time and keeping it positive and healthy.  The only one thing I have not given up is chocolate. A lot of recovery has to do with attitude and finding a way to self motivate to make changes in your life to live a better, healthier, happier life with you in the driver's seat. It's not always a easy task but very doable. Sending blessings to all of you.

For the first time this summer I  got into the pool. My 9 year old grandson challenged me to laps around the pool. Took things really slowly but managed to complete a few even though I couldn't keep up with his energy or his speed. One day at a time, adding one thing at a time and living life.

This morning I  completed my Rehab! Few lessons learned from my classes. So I  generally workout at a higher pace and was always surprised that I never did lose the pounds like I wanted to. For women, especially older women, workout is recommended at a moderate level at least 5 days a week, weights should be done on alternative days, and 30 to 60 minutes is adequate with workout including at least 3 different routines. So there is not much gain from longer or harder workouts. Also, in talking to other patients in the program I learned that the side effects of medication is very real for a lot of patients so my advice would be to make sure you know all the side effects that you could encounter as a result of your medication. There were a few folks who required medical attention while in classes attributed to medication. All in all I found the classes helpful. Being monitored was important to me as I got back to normalcy. 

June 1st marked my 3 month point since my Aortic Valve and Root replacement via full sternotomy. I have had two baseline echos since with no issues. I continue to have blurry visions periodically but very little discomfort as I plug through rehab. On my off days I work out on my own. Sometimes, I forget to caution myself about doing things I should not. My appetite is back but I am careful with what I eat. For most part life has returned to norm and I am getting on with it. Hang in there heart warriors ♥️.

Milestone - exactly 2 months since my surgery and I am doing well. Happy to be around to spend another anniversary with my rock today.  For all those that are on your way to surgery - Life  DOES go on and get better each day after surgery. There will always be ups and downs but in my soon to be 67 years, I  have learned to smile and fight back with a little grit and hope you will too. Happy Sunday and God Bless Always.

Hi All - Officially started my rehab yesterday. Came home and crashed. Workout was not difficult but I hadn't done anything but walk in months so perhaps that is why I ran out of steam. I felt the same way after picking up the house on the weekend - extremely tired. Both routines were a little harder than I thought it would be. Needless to say I have to build up strength. I am on my 8th week so I expected to have a lot more stamina. I have very little pain from the full sternotomy, sleeping a little more on my side and even driving myself around a bit on errands. Had a couple incidents where my BP got elevated at night but I kept monitoring it. So life does get better ... at a slower pace than we want. Hang in there fellow ohs warriors!

Had my cardiac rehab orientation today. Filled out a bunch of questionnaires to help them determine if I needed other professional help like a psychologist, a chaplain etc. Glad that I don't need these folks but I  guess some people do. Other than feeling sad for no reason at all sometimes, getting light-headed sometimes, some blurry vision, I have not had many issues. My progress has been within the acceptable range so I am glad for that. I am curious how long the norm is for rehab. I am scheduled for 8 weeks. I am not sure if I need 8 weeks though. 

Wishing all the Heart Warriors a Blessed Palm Sunday. This is a religious week for many cultures so may all those blessings shine upon each of you. God Bless

Quick update - Post OHS visit with the cardiologist this am.  Very satisfactory results with cardiac rehab monitoring and three month Echo scheduled.

One of our friends mentioned feeling sad after surgery, had some of that set in this week for me but I  am good at talking myself out of things and did so. But it is a feeling that doesn't have any basis to it. 

Yesterday was my first day out driving. I picked up my grandson from school and took him for a milkshake.  The ride was less than comfortable. I  think driving after a month after full sternotomy is a little tough so I  am going to go easy on myself even though I love spending time with my grandkids. Residential roads are not smooth and toss you around a little more.

Today was my one month visit with my surgeon. Also, I got  another  CT scan at the Heart Hospital this morning. Everything checked out as the surgeon expected. Thank God! No fluid in lungs, no swelling, the wound was healing well, first time I saw the work the surgeon did. That was a clean bill. Released to drive, full use of arms, option to turn on my side and sleep, no shower assistance required, walking up to 2 miles for now (thinking I could do more), cardiac rehab set for May after my full 60 day recovery period. Now a little bit about the surgeon - what I got and went with was someone who knew her stuff, had the education, experience, knowledge and straightforward approach to get me through one of the toughest things in my life. I struggled with my decision - I believe a lot has to do with the hospital system and that's unfortunate. My journey has definitely taught me a lot of lessons so far - one never stops learning.

Another pretty nice day in Texas which allowed me to go walking in the sun. Felt really good. When I started the morning with throwing up, I thought this was going to a bad day but I put on some clothes and got on with the day - working on taxes, had a little bit of Thai food for lunch too. Taking each day, one day at a time.

20 Days after my surgery.  I walked for over 30 minutes  today! My husband continues to be my biggest supporter and caregiver, keeping track of my BP, temp etc  I still have blurry vision  and some numbness and chills. I contacted the surgeon's office.  The medical professional has changed considerably over the years. I have not needed to be in the system before now and I  had not realized the extent of the changes that have occurred.  34 Years ago when I had surgery I remember being called by the surgeon, doctor,  even the hospital to find out how I was doing when I got home. It's rather disappointing that this profession has become a 'business' model. Post surgery in the hospital I had lots of docs pop in and out but none of the them ever touched me. Big difference from what I  used to think. This online community's shared experiences help patients equip for MAJOR surgery and handle problems that otherwise goes unanswered. So the other person I am more than grateful to is Adam Pick.
For the women getting ready for surgery, please invest in some wireless comfortable bras, not sports bras because you are going to need them 24/7. I had to send George to shop for me - as I  said he's done things he did not sign up for! I tried the wedge pillow before surgery and returned mine but my niece sent me one and it has worked out very well. I put a regular pillow on the wedge and both my sides to make me comfortable in bed. We also purchased a reclining sofa but I  have slept on my bed. George has helped me with my showers but we got a shower chair that gives me some independence. Final update for today - gone an entire day without pain medication.

 

Day 10 after my surgery and I took a slow walk up and down the street in our neighborhood - felt like a moon walk, step by step. Keeping my faith and strength that this too will pass.

Good Evening All -
Thanks everyone for keeping me in your thoughts and prayers. Surgery went as expected. No complications. Did collapse the day after surgery with low BP and low oxygen and gave my family a fright. My eyes have very sensitive to light. No appetite but retaining water weight. Hope to go home soon. Most of the staff and personnel have been great. My husband, son, sister, niece grandkids as well as my South African family have been extra special. I have friends that have gone out of their way to show support and send encouragement - incredible. I am touched by everyone's generosity. Now I wait to go home and recover

Today I am scheduled to finish the pre-op testing. Tomorrow at this time I will be well into the surgery. I want to take this time to thank those people that have helped me through the past three months. My husband and my rock, my family and friends, this community, the people who have prayed with me for God's guidance - including people who did not know me - and the professionals like Dr. Pool and Dr. Chari who generously clarified my confusion while staying in their lanes, my gratitude goes out to you. We chose Dr. Harrington even before meeting her because we wanted someone who did this surgery enough times to know the ins and outs of it. Everyone that asked about the doctor we chose has had nothing but good things to say about her, so we know we made the right choice. My husband and I are sticklers for details. and perhaps asked too many technical questions, rightly or wrongly we will never know but what I do know is Dr. Harrington is the right person for me for my surgery. For those that having to make a decision on full or mini sternotomy, here are some questions we asked - 1. Who is the room and what do they do? Are they … doctors, nurses, surgeons? 2. Is the person who administers anesthesia a doctor or nurse? 3. Are there are two surgeons in the room during procedures? 4. What is the size of the sternum cut ? 5. What does the root enlargement entail – grafting? What does the Valve and Root Replacement entail? 6. What size and what valve? Edwards Inspiris Resilia ? 7. What size net/net so you can determine mini or full given what the gain would achieve? 8. What are your safety concerns – bleeding, infection, your ability to access the heart, does it affect venting the heart? 9. How long is this procedure? 10. What is the recovery time? 11. Is the gain of using stentless valve vs stented valve for future TAVR justified by full or mini sternotomy? 12. Is there risk to damaging other vessels in the organ? 13. What are your safety concerns – bleeding, infection, your ability to access the heart? 14. How long on the bypass machinery for each option and what are the risk factors? 15. If there issues before the scheduled surgery who should the patient be talking to? 16. Do you have a direct contact telephone number? Most people get these questions answered during their visits, but dont hear or remember the answers because anxiety takes over really. So writing or recording is a good idea. I think the hardest decision is being given a choice and the patient having to make that decision. I made the decision to go harder and riskier now for easier and less riskier later trusting that God walks beside me in this journey too.

My decision was a difficult one. I am more than thankful to all those that sweated this decision with me. I have a small valve and root and mini sternotomy would give me a fair landing for TAVR but the full will give me a slightly better landing. In my lifetime, it is estimated that I would outlive the valve replacement. I am not old enough for the TAVR. I debated with whether I should do the mini and chance in the development of better and improved procedures that may benefit me later. I decided to go with what I know today and what will better for me later on as assessed today. Today, I got to have a video call with the surgeon. The call gave me a little more of an uplift. I tried to stay brave, put my big girl's pants on and handle this process without losing my dignity but everyday has been different and difficult. Without my husband (who has seen the nutcase that I was becoming), family and friends my journey to this decision would have been truly harder. I know I chose the harder route. No matter how I evaluate my situation, I keep thinking about all those people that don't have a chance to change their futures and my fear becomes miniscule in comparison.

The support from my family and friends has continued to be tremendous therapy for me. Some of my conversations are hours long but they make me feel good. Btw, today we got our reclining couch so I told George we should try sleeping on it tonight - he did not buy into that! I really don't blame him since he too will sleeping on the reclining sofa after my surgery. A few days ago, I decided to share my story with my FB family and friends with a link to this site. If I can help one person by sharing as this community shares, I think it would be worth it. Happy 2.22.22

The home stretch of waiting is turning out to be much more difficult. As I combed through details of all my tests, doctors notes and correspondence, I realized that this may one of the more important things anyone under going surgery should do. My Assessment doesn't read correctly, least not from what we were told our options were. Another day wasted on the phone trying to get clarifications in the midst of preparing for the surgery. I have read every test report, doctors notes and googled things I could get an answer to and still don't know what my decision will be. I think I am mentally whacked of all energy.

I continue to get support. Yesterday, I had long chat with one of our daughter in laws and two grandsons who called to wish me a happy V Day. Today, I picked up two of my grandkids from schools and on our way to get ice cream, the 13 year old was trying to educate her 9 year old brother about Gramma's 'bad heart' and he calmly responded 'yes I know, I heard Dad talking to her on the phone but we don't have to get tested until we are forty' I try to keep it light and laughed. When we explained to our curious 13 year old, we explained that I have the chance to get better and used the kids in the St Judes ad to explain how they bravely they face challenges - she said that she understood because a kid in her class was getting cancer treatment. Reality check! Also, chatting with our young neighbor today, I learned that her 5 year old son, our little buddy, prays for 'Sandy and George' every day. These 'little' hearts making my day brighter! Finally, I usually text our older grandkids (we have 7 between us) but today I shared a special memory with each of them that touched my heart ❤️ and showed them how special they are to me!

Today the doctor's office called and confirmed my surgery schedule and pre-operation testing details. I only take one prescription med and my others are OTC. No vitamin E for 10 days prior to surgery. Hospital stay is expected to be 5-7 days. Pre operation visit is with the nurse practitioner not the surgeon. Also, pre-op tests and Covid test are to be done at the hospital. Sadly, no interaction with the surgeon. I don't know if that's the norm but I am finding this to be a hard pill to swallow.

I am acutely aware of the changes my body is going through since my diagnosis. I have just a little over two weeks to go before my surgery. Every new symptom is a little more unnerving. For the last couple of days I have had a sharp pain running down from behind my left ear down my neck and a little numbness. The pain is not constant. Taken a couple of advils tonight. I spent time doing taxes today so I have something else to think about than the surgery. I updated my pcp, cardiologist and surgeon but it's unlikely that I will hear from them. They are not very responsive on portal as a result my husband and I are continually doing research and ended going to bookstore and looked for medical books on BAV. We are certainly getting educated - my husband jokes that he could put me on the kitchen table and do the surgery (trying to keep me laughing through my anxiety).

This is an African saying - it really does. take a village This morning I got my daily check up calls from both of my sisters - from the US and South Africa. Almost every day, I hear from people that want be to show their support. Late last night we talked to our nephew from Hawaii and I was honored to learn that he was planning to be here in Dallas for my surgery. Since my diagnosis, I have been talking to friends and family, getting advice, support and encouragement. It 's helped me keep my head screwed on in the right direction. Initially I thought I just want to keep this quiet and get it done and get on with it. There is strength to be gained from people around you, especially if there is a waiting period. My husband is my rock!.

November 12, 2021 - Diagnosis - Heart Murmur EK-G and referred & saw to Cardiologist - EKG December 1, 2021 - Second opinion with Cardiologist December 2, 2021 - CTA Scan December 2, 2021 - Echocardiogram December 6, 2021 - Cardiac Cath - recommended TAVR - stenosis of the aortic valve January 12, 2022 - Clinic Testing - Nurse Practitioner Visit, Labs, EKG, Pulmonary Function Testing, CTA Chest, CTA ABD PELV, CT HRT AORTI, Carotid Ultrasound - diagnosis severe stenosis of the bicuspid aortic valve - recommendation mini open heart January 20, 2022 - Second Opinion with Thoracic Surgeon - critical stenosis of the Bicuspid Arotic Valve - recommendation full open heart February 3, 2022 - Virtual visit - Procedure Q&A February 16 - Hospital admissions Q &A February 24 - Visit with Surgeon H&P and Assessment Notes Questions February 25 - Covid Test February 28 - Preop Tests, Bloodwork, Ekg, Chest Xray. During this period my husband and I spent a lot of time researching and trying to get answers to our questions. Also, we did try to communicate with the providers on the portal. This did not work for me. Found out second opinions are hard to get. Also, during this time I am trying to get my house ready for post surgery. Research recommends sleeping on a recliner so we have been shopping to replace our tradition couch with reclining sofa - so my caregiver (husband) can also sleep on the couch. I ordered post surgery bed pillows etc. The worse part is the wait, the inability to sleep at night. Of course I have become more aware my symptoms - for example the pain in arm isnt because I may have been sleeping on it or the numberness in my toes wasn't because it was cold. The reason is that the blood circulation is becoming more difficult. I have propped up my head with more pillows and use a pillow for my feet which seems to help ... until my surgery,