Candas's Journal

Hey everyone, I have a question. I live in LA, I have noticed since my valve replacement in January, I am way more sensitive to poor air quality days. I have tightness in my chest and have a hard time breathing, it isn't too bad. I know I do not have these issues at the beach or on cleaner air days. Anyone else have this happen? Did you get an inhaler or just stay inside. I cannot imagine being on an inhaler with a heart valve replacement.

My shoulders were not getting better, still so painful. I decided to get them looked at. I fould out that my right shoulder has two tears, one pretty significant and one not too bad. THe plan is physical therapy and re-evaluate after 5 weeks or sooner if the pain gets worse. I have not slept well since my surgery in Jan.

Hi everyone, I am 3 months post bicuspid aortic valve replacement and I am having super painful shoulders. After surgery I felt like I had been in a fight and was beaten up, I was so sore in my chest, neck and shoulders. I did as I was told to heal my sternum. I have done what I know how to do, but my shoulders are still very stiff and painful. Anyone else have these issues??

Al little over two weeks...good thing it is raining like crazy in LA, I would probably be doing too much. I can now walk around my block 2-3 times, get on my spin bike for a bout 20 min going very slow, just sitting up, not leaning on the handle bars. I am sleeping better, but still wake up at 5 am, it just hurts to lay down on my back and not be able to roll onto my sides. Still coughing a bit, the breathing/lung strengthening "incentiviser" is making steady progress. I had my cardiology check in today, all sounded good. He told me my valve was way more diseased than they thought, it was really good I got it done. Still struggling with the new medication regime, I just never wanted to be held down for survival with a pharmacy. I am a bit sad today, I just didn't know I had so many issues with my heart. I am so thankful to my family for helping me, just sad this is so not normal for anyone because we have always been so proactive. Hanging in there.

Hi all, just super tired after a great morning of walking around. I felt great this morning, now so tired. I took a nap and forced myself to get up because I was starving!!! I shoveled down pizza, not the best choice but readily available. My family is doing a great job, but I wish I could figure out how to import my mom to cook for me. Trying to keep my chin up, I have tons to be thankful for. So far all reports have been good news, BP is holding in a healthy range. I had issues with it dropping so low. Hoping to walk outside this afternoon. Hugs!

Dr. Ardehali did a great job with my heart at UCLA. I had bicuspid valve replacement, closure of an ASD (aortic septic defect) AND he found a small aneurysm!!! WOW!!!! I do not have much of a family history because my father's family came from Poland. My dad was put in an orphanage around 4 years old. I had NO idea I had any of these heart issues because I have always been incredible active. My nickname given to me at 6 years old was CandyWamo! Spelled wrong because my friends were in the first grade. I somehow threw a frisbee further than any kid at my entire school. Tiny mighty! My father, Dadems as I called him, was everything to me. We share the same green eyes and golden hair. My whole family growing up reflected my mother's commitment to health and sound nutrition. My mom made really healthy bread, incredibly delicious and healthy food and still does today. We were not even allowed to have sugar cereal, if we did is was considered dessert. My father sadly did die of a sudden heart attack on New Year's Eve 2004. About a year after that I did start to have stabbing pains in my chest in the exact same as my aortic valve . At the time we lived in Atlanta, I went to Emory and explained to the cardiologist that I am not a drama girl, I can't explain why I feel stabbing pain, I also told him I was very tired. I attributed the tiredness to having twins, working as a teacher, working as a group fitness instructor (Spinning) and just not wanting to miss out on life. The ran tests and found NOTHING!!!! A year later I called again and said I am still having these very bothersome stabbing pains and my intuition is telling me to come back. This time they found the bicuspid aortic valve. I began to be monitored and over time they found the ASD. Fast forward to 2017, I am back living in Los Angeles. My scheduled surgery was on 12/26, I came down with strep throat and they rescheduled the surgery on 1/4, my mother's birthday. Everything went incredibly well. I can't thank the UCLA team enough. Their level of professionalism and commitment to their job reflects the legacy of John Wooden. So here I am today, super surprised to know what it feels like to have a fully functioning heart beating so ridiculously strong. At first it really scared me, nurses, friends and even the doctor had to explain this is what it feels like to have a fully pumping heart. I had to recheck the monitors every 5 min to make sure I wasn't beating off the charts! Now I have to put my Candywamo ways into resting and keeping my incision healing and RESTING!!! Hugs everyone. This is incredible and scary too!

Hi All, I made it home today. Just tired but feeling so thankful for the super smart doctors and amazing nurses at UCLA Cardiology. More later, just enjoying my family.

I spoke to my family in Tulsa. I so wish they could be here. Jan 4th is my mother's birthday. I tried not to really think about it, I did not choose the date. My surgery was postponed because I came down with strep throat in December. So actually kind of glad because I would have been at UCLA in intensive care with Carrie Fisher. I like things super calm. Mixed blessing and the fact it is on my mom's birthday is significant.