Claire's Journal

I cannot believe it's been FIVE MONTHS since my open heart surgery to replace my aortic valve/repair aortic aneurysm with a graft/repair my aortic root (April 3, 2019). It has been a wild ride, with lots of ups and downs! I have received so much support from my online and in-person heart families as well as from close friends and family, most especially from my husband. He should get an award for his stamina and patience and ability to keep the household running while I continue to recover! Some updates: I graduated in early August from the Ornish Intensive Cardiac Rehab program at UCSD, which was one of the most enriching and transformative experiences of my life! I highly recommend it. I am going back to work full time on Weds., after working part time for the last few weeks to ease back in. Nervous, but ready. I had a CT angiogram last week and my sternum still hasn't healed completely. Frustrating and painful, but I have to just keep moving forward as there is currently nothing to be done about it. If the pain continues after a year they might remove the cables around the sternum. In the next week or two I am going to have a MRI on my brain to see what's causing headaches, short-term memory loss, fatigue and some minor balance issues. Apparently "pump head" caused by being on the heart/lung bypass machine, plus being under the deepest form of anesthesia for so long and the fact that they blast the chest cavity with carbon dioxide can cause some cognitive issues. I am of course hoping there's nothing major to report on that front, and I am told it can take 6 mos to 2 years to recover completely. I am still trying to find my new normal and sorting out my priorities, but I have show a lot of improvement and I am walking between 2-4 miles per day. It's hard to explain how much this surgery impacted my life. I am not the same person I was before, and I am rebuilding the "new me" day by day. Thank you for your support and thoughts and kindnesses along the way. Love, CKB

Hi friends! I am halfway through the nine-week Ornish Intensive Cardiac Rehab program at UCSD and I cannot recommend it enough! If you have this program available to you and your insurance covers it (Medicare covers it as do most others, including Blue Shield, etc.). It's twice a week for four hours each time and goes for nine weeks. We exercise for an hour, do stress management/meditation for an hour, eat an on-site chef-prepared vegan meal for lunch, and finish out the day with an hour-long support group. I love my cohort so much that I feel like they have become my family. They "get it." It's hard to explain the connection, but it is life-changing. I am the youngest at 46, and our oldest members are in their late 80s, proving that it's never too late to change your lifestyle! Anyway, I love it. The program, plus constant support from a few key people have kept me going strong on my long road to healing. I had had an echo a couple of weeks ago and my valve is doing it's job as it should be. The surgeon was very pleased with his work and all restrictions have been lifted with the exception of anything that gives me sternum pain. Yes, this is still a persistent, frustrating, and exhausting problem. I am to have another CT scan in 8 weeks to see if there's been any progress in the sternum healing (I have nonunion and he doesn't want to do anything invasive). My life has changed so much--from my outlook, to how I process feelings (anger, sadness, feeling let down, anxiety, etc.). I eat and exercise and meditate and am on the hunt for sliver linings wherever possible. But this sternum pain situation is brutal and really wears me down. I've found in my research that that tends to happen for women more than men and that doctors don't really have a plan or answer for how to deal with it. It's bone pain, nerve pain, skin and scar pain. It's layered. It's frequent. It's intense and exhausting and boring as hell, but something that is always humming in the background of every second of my day and night. Nothing helps it because of the layered levels of pain. What works for nerve pain does nothing for the bone pain and vice versa. Bored yet? Me too. I am planning to return to work part time, working from home, in August, after Cardiac Rehab ends. I drove a short distance for the first time since March a few days ago and though it felt really natural I was also not super comfortable with the seat belt yet (I do have a cushion, but even with that the pressure is on my sternum). Another thing I've learned is that life goes on. With you or without you, it goes on. I am doing more things and am starting to actually feel "busy," which makes my husband laugh. P.S. Laughing hurts, but in a good way. Love and stuff. CKB - OHS 4/3/19, aortic bovine tissue valve, aortic aneurysm graft/repair, aortic root repair

I started the Ornish Intensive Cardiac Rehab program at UCSD this week, and it has greatly improved my mood! It's four hours, twice a week, for nine weeks! First hour is exercise (while hooked up to EKG, nurses on hand to take blood pressure, etc.); second hour is stress management, which includes meditation, deep breathing exercises, and imagery; third hour is a health lecture with a nutritionist/chef prepared plant-based lunch (amazing flavors!); and the last hour is a facilitated support group. I'll go through the entire program with the same people: Go Cohort 15! If your city has the Ornish program I highly recommend it if your insurance covers it, because it is incredibly comprehensive and designed for creating healthy habits for life. My sternum still hurts beyond what I ever expected and I am not yet driving or working because I don't have the flexibility and cannot even stand to have water or clothing covering my incision. It's like every nerve ending is screaming constantly. I've had hives (no known cause) and I am starting to experience insomnia which is rough, but I'm hoping daily practice of meditation and exercise will take care of that eventually. I definitely have more energy and I have been doing more activities (seeing movies, going to my son's concerts, BBQs, etc.) but I only have a few hours in me to do these things. John went back to work and though I miss having him around I've had to become more independent quickly! Thankfully, I have lots of support to keep me going. My BFF is down for the summer and seeing her makes me so happy! She makes me laugh and we problem-solve and walk and talk and I'm going to miss her terribly at the end of summer! Chandra is like an antidepressant in human form. Just her presence makes me SO HAPPY. She also drives me to rehab once a week, which is so helpful (and fun!). I wish she could just live with me forever!! My friend Julie from PA has got to hold the world record for sending supportive cards. At first it was every day and now I still receive at least 2-3 cards per week. Her dedication to keeping me motivated and cared for is absolutely amazing! Her partner, and my oldest and dearest friend, Denise texts me pretty much daily to check in and offer comfort and laughs! She is one of my lifetime pillars and I am so grateful to have her and Julie in my life! I guess I'm feeling pretty grateful today. Rehab has given me hope. On Tuesday when I was on the treadmill--for the first time since my surgery I thought, "I got this." Thank you to everyone who calls, texts, sends cards, visits, or walks with me weekly (Ldub!). It means more than you will ever know. XO Claire

My sternum pain is unrelenting. Doctors know & say it will take time. I thought it would hurt less by now! Still waiting on clearance to start rehab & still walking about an hour a day. Doing my best to stay positive, but it’s really tough some days. ❤️🐄

It's been a wild week. I had some bleeding issues earlier in the week and had to go off of Xaralto (blood thinner) and became rather anemic. I started on iron supplements but still don't feel quite right. I often wonder if I will ever feel normal again! I am also taking on fluid again for reasons unknown (I am following cardiac diet, low sodium!) and am back on Lasix and the dreaded potassium horse pill. My sternum is my biggest pain point--literally. But I finally found the right kind of supportive bra so I am hopeful that will help. I felt pretty sorry for myself on Thursday and binge-watched "Society" on Neflix for about 9 hours (if you're into dystopian teen dramas I highly recommend!) . I realized at the end of that, that I was depressed because my work team was headed off to Washington, D.C. to do our annual & important work there to advocate for music education in schools, and I was supposed to be there with them. It's my favorite thing that I do in my job, and so it hit me hard. So, yesterday I stopped moping and went on my longest walk yet with my dear friend Laura. We walked and talked for an HOUR, which I could barely do before surgery, so this was a big accomplishment for me! I'm also noting that I can do the stairs in our house w/out stopping, though I am winded at the top. I am becoming more and more independent and my brain now wants to RUSH to the finish line, but my husband keeps reminding me to "be cool" and let the healing continue. Home health care discharged me from home nurse visits, which, of course, is good news, though it still scares me. Speaking of, I am working on my anxiety with going out in public. I am so scared someone is going to bump into me or that I will need to react to something suddenly or that I will fall and my sternum will scream in pain. I think this "feeling like a newborn baby" thing is going to actually be my biggest hurdle to get over. Referral is in process for me to start cardiac rehab, and I decided to give the Ornish Undo-It program a try. It's a four-hour program, twice a week, for nine weeks! It seems very comprehensive (exercise/plant-based diet prep/support group/stress management). I am, at the very least, looking forward to having some structure again. That's about it. I am working things out and walking and staying (mostly) positive. This experience is so strange--it's kind of like when someone dies and everyone is around you every second for the first couple of weeks and then everyone else goes back to normal, but you're still in the sh*t. Can't wait to start therapy! :-D Hope all of my #OHS warrior friends are doing well and getting stronger by the day. I am. I am. I am.

Hi friends and family, I have had a busy week of appointments! I had a CT scan and saw both my cardiologist and my surgeon because I was hearing a "clicking" sound in my sternum. Turns out the very top of it did not fuse together and so that is causing the click. Nothing to do about it except hope with time it stops. Otherwise, the CT scan showed that my heart/valve/aortic root/aortic graft were all functioning perfectly! Other bits of good news are that my lungs are FINALLY clear of fluid and the giant clot in my neck seems to be dissolving from the blood thinners. I still have considerable pain in my sternum as well as the right side of my chest, but I am just taking Alleve or Tylenol at this point. I will be able to start cardiac rehab in about two weeks and I am looking forward to it! I am still battling with residual throat trauma issues from the tubes during surgery, but again, they are telling me it will just take time. I walk 30-45 minutes most days and am still super exhausted and take long naps. I get a fair amount of visitors from good friends and will be discharged from home health care early next week! Has anyone done the Ornish "Undo it" cardiac rehab program? UCSD is certified in doing this and I am very interested, but I've always been a Scripps gal so I am undecided still. My dr.'s are fine with whatever I choose, so I thought I'd ask if anyone here has any experience with the Ornish program. Thanks and I hope all of my #OHSWarrior pals are doing well. XO CKB

I feel super gross today. Mostly massive indigestion & nausea. I just took gaviscon & took Zantac earlier & haven't eaten much bc my stomach is whack! I have no energy but forced myself to go for two walks. Yay me 💪🏼. I’m seeing an ENT on weds. about possible throat trauma from all the tubes 😣, but it feels like my esophagus is in a constant spasm. This morning I noticed clicking in my chest 🤢 when I took deep breaths but *only* when I was laying flat. I'm assuming all of this is normal but I've been in tears most of the day bc I feel miserable 😭. I guess I'm just seeking confirmation that this is all part of recovery & will pass 🙏🏻🤷🏻‍♀️? I also reached out to my home health nurse. Thank you #OHS💪🏼❤️🐄

OHS ppl, did you notice MORE intense sternum pain 2+ weeks post op? I was in tears last night & it hurts to move around today. (17 days post op). 😭🙏🏻

I’m seeing my cardiologist weekly now to get a grip on on the meds. I’d been so sick & wasn’t eating or able to do much of anything. Dr. Stopped the amnioterone (sp?) for afib & it was amazing how much better I felt! Still have fluid in my lungs & a clot in my neck - started xaralto blood thinner for the clot & need to do a vein study on my jugular. I’m feeling so much better now that the nausea is gone! I’ve been walking 2-3 times a day & trying to be religious about using the incentive spirometer hoping to move that fluid. I shower every day & am sleeping through the night though getting to sleep is still a challenge. I have a pain/tugging sensation when I walk that’s unsettling but I’m guessing it’s the old sternum jostling around 🤢. Having two good days in a row after so many bad ones has been such a gift! 💙🐄

I’ve been having low blood pressure issues & headaches with extreme fatigue since Saturday. I’ve been in touch with my cardiologist & I see him tomorrow. I feel spacey & far away & like all I want to do is sleep. Anyone else? Had my first big cry since being home 😭 today. Felt good to relieve that pressure & I am mindful of depression. My brain feels like it’s detoxing from something & I am sure with all the meds I’ve taken & gone off of it could be anything. I’m down to regular Tylenol for pain with tramodol at night, aspirin & an afib drug. Pretty light I think. I’m working on being patient, but it’s hard to get used to this good day followed by bad day thing. I take inspiration from your posts! ❤️🐄

Yesterday was a good day. Laughed carefully, but often. Thank God my husband is funny! We even grabbed a quick lunch out, which felt really nice and normal. I walked, did the spirometer, stayed downstairs all day, and then it was time for bed and whammo. I couldn't sleep. I was having weird sensations like I was swallowing air bubbles and have you guys and gals had the sensation that when you lie still and your heart beat physically moves your body? I was not prepared for that. It feels like the bed or couch or whatever is moving side-to-side. But it's not. I keep checking to see if the dog is leaning against something or if my husband is bouncing his legs. Anyway, odd feeling. Also, I have a biovalve, so I do not have the ticking sound that the mechanical folks do, but sometimes my heart beats so loud it is literally deafening! I guess I didn't realize how weak it was before. I'm working through some fluid and clotting issues and this brings me to my next question: Have any of you had to make a decision when your cardiologist and surgeon disagree about something? That is happening. I am probably going to go with my cardiologist. He's known me a lot longer and will be following me closely, whereas I don't see the surgeon again for another 3 months. Home health nurse comes today and hopefully that won't lead to another trip to the ER! Issues requesting advice on: sleep newer, faster, louder, stronger heart sounds/and feelings cardiologist v. surgeon Thank you all. #OHSwarrior

Dang, recovering from heart surgery is rough. I knew it would be, but I feel like everyone tries so hard to be positive that some of the real horrors don’t get talked about. I was released home on Sunday 4/7 & by Tues I’d gained 10lbs of fluid & developed a clot in my neck. Can we talk about the neck pain from the three ports?! Saw my reg cardiologist & he doubled lasix and that’s heling a lot with the fluid issue. Only doing aspirin as a blood thinner but will see what Dr. Hemp says tomorrow. Stairs, walking, spirometer, and lots of Netflix & sleeping! It has been amazing being home. So today when the home health nurse came to visit & was concerned enough about my high blood pressure, breathlessness, chest pain & headache to call the surgeon it was off to the ER! I was frozen in panic: I didn’t think I was going to die but I did think they were going to readmit me. My experience in the hospital was traumatic. The all-night screaming roommate haunts me. I thought I heard her in the ER today! Emotions are piling up. My parents went back to Jersey today & my husband is trying to learn to tie ponytails & dry my hair. We have one 12 yo son who is in the throes of his own preteen middle school dramas & I used to be one he talked to. But everything is thrown off. Yes, temporarily, but nonetheless, our lives have been upended in ways I hadn’t imagined or planned for. I bought so many surgical bras & laugh-cry to look at them bc the pain would be insane. We’ve had a steady meal train which has been a godsend & when my parents were here things were easier bc my husband could take breaks. But now, just the three of us - it’s hard. Really fkg hard & maybe I missed those posts but I just wanted to acknowledge that for some of us, the immediate after is harder than anything we could have imagined. So, I’m home, packed in by pillows in my peculiar way. My husband brushed & blew dry my long hair after my shower & while trying to get our son to bed. He & the other care takers who are in the room to keep us recoverers on task, filled with nutritious food, learn to do a low & high pony, & take our son for sleepovers & organize meal trains & gofundme campaigns are the lights in this very dark tunnel. Thank you. You know who you are. ❤️🐄

Hi all, surgery went well. Was out of icu after 24-ish hours. Had a bad case of AFib (200bpm)!on Thiurs. Terrifying! I’m anemic & have some edema, but I’m Hoping to go home today bc I cannot sleep here! ❤️💪🏼🥺

Tomorrow is the big day & I am oddly calm. I don’t have much to say. I hope Kevin & my other April 3rd #ohs buddies come through with flying colors & I can’t wait to see how we all kick heart surgery’s a$$! Clear eyes. Full hearts. Can’t lose! ❤️💙💜♥️💚

Two days to go‼️ Started antibiotic nose ointment & got my mani/pedi💙. My parents arrive today & I’m checking things off my to-do list. Time is going by very fast! 🚀❤️🦁 #ohswarrior

I had my pre-op appt today and had all of the tests--blood, EKG, chest x-ray, in addition to the CT scan yesterday, which showed the aneurysm at the same size as it was a few weeks ago. We also got to talk with the surgical nurse who was informative, but there was a lot of info that washed over me. Thankfully, my husband was there to take notes! Because between the antibiotic nose swabbing twice a day three days before surgery, special soap scrub twice before surgery, no ibuprofen or aspirin a week, starting today; and the range of how long the surgery will be and how long recovery night take my brain is not retaining anything! I mean, no one said there would be so much math involved :-p Complaints: I am exhausted but struggling with insomnia at night; I am super itchy and it's driving me nuts. I think it might be from the 25 mg (an extremely low dose) of Trazadone for sleep? I dunno. But I am going insane. I have reached out to my GP about this. Could it be from the CT contrast? Crying spells continue. Exhaustion is getting to be overwhelming. I am winding down at work, but have to keep working until Friday b/c of PTO/SDI issues. Something is always going wrong with appointments or insurance, and I'm like, "you literally do this for a living!" The research and recovery tips are geared toward men. I have been working on finding good post surgical bras and other such women-specific concerns and there is a real lack of info out there. Amrite? It's 2019, let's get with the program already and address that women have different needs in their recovery! All normal stuff, I am sure. I guess the bright spot about all of this is that by the time April 3 comes around I"ll be so tired and worn down that I will be relieved to just stop having to do all of these things and sleep uninterrupted for 5-8 hours! :-D Good luck to all of you #OHSwarriors going in for surgery tomorrow. <3 CKB

I have a CT angiogram today and my pre-op scans/tests/labs tomorrow. MRI of my head and carotid artery study were both normal. I wanted to make a joke about the head scan, but I'm not quite as quick-witted as usual these days. The emotional part of this is hitting hard and often. Everything brings me to tears. I am sleeping a lot, but also working remotely and trying to keep things normal for our son. That's the hardest part--I simply don't have the energy to do the things he wants to do and I think he is frustrated and confused and mad about it. I get it. He's a kid. But, dang. It's rough. I'm seeing a new therapist today who specializes in medical stuff so I am looking forward to that because I am a real crybaby lately! Thinking of all of you other #OHSwarriors out there. CKB

Big day of testing today. I had the MRI of my head, which was interesting. They put a Hannibal Lechter contraption on my head and had me listen to smooth jazz, which, as it turns out, is not relaxing! Three hours later I was back to the hospital for the carotid artery study. I had to nap in between. I am so dang tired. I don't think I've ever been so tired in my life! The first time at the hosp I ran into my cardiologist, Dr. Bruce Kimura, who has been with me since 2003 or so, and it's always so wonderful and comforting to see him. He's calm and kind and very deliberate. The second time there I ran into my surgeon. I guess this is turning out to be a rather small world of cardiology. I appreciate so much the well wishes and thoughts and I am sending out all of the positive energy I can muster to those of you who are going through similar feelings and who have surgeries coming up. I wish I could @ people in my post, but I am just going to express blanket gratitude here to all of you who take the time to offer comfort when you're in the midst of your own crises. #OHSWarriors

The emotional fallout is beginning. I am so tired and stressed about the financial part of OHS and everything is so overwhelming. I wrote a long, poetic post and then accidentally deleted it. It's been that kind of day. Met with HR today to go over SDI and all of that highlighted the sticker shock of OHS which I haven't been paying attention to quite yet. But now it's all I can think about. Tomorrow is MRI of my head and ultrasound of my carotid arteries (same hosp, three hours apart, c'mon!). I'm tired and sad and everything is overwhelming, but I am grateful for an incredible network of friends and family who are supporting and loving me through this surprisingly lonely experience. Best of luck to all of the OHS warriors going into surgery in the next few days. I'm right behind you. XO CKB

Hello, I don't have much to say except that surgery date is set for April 3rd. We have two weeks to get ready. I am focused, and calm, but also freaking out. Mostly, I am exhausted and ready to feel better. I have to have an MRI of my head and an ultrasound of my corotid artery. No CT scans since I had those done in 2017. Since we are in the "getting ready" stage I would be grateful to know what people wish they'd known or had at the hospital or at home for post-op recovery and comfort. One step at a time. #Amrite?

Dr. Hemp's lovely nurse Michelle called me to talk through some of my medical history before my appointment on Monday. I appreciate the efficiency! We went through family heart history--lots of info there, but it's tough, b/c my mom died in 2001, and I don't know much about her history. I guess it doesn't really matter. It's my history now, bishes! I tried to get some of my 20 million questions answered but Michelle was masterful at saying, "Good question! Be sure to ask Dr. Hemp on Monday." Touche, Michelle. Touche. The second call was to let me know insurance approved an MRI of my brain and two CT scans of my heart. I'm sure this is totally normal protocol, but it's like the minute medical people start talking to me, my ears go, "LET'S FILL UP WITH STATIC SO SHE CAN'T HEAR THIS!" I think she said CT of my aorta and a pulmonary CT scan, but who can say. I guess I will just have to listen to Michelle and ask Dr. Hemp on Monday! Question for other heart people here--I broke out in a rash last night. I am so itchy on my neck and chest! No new meds. Only new thing is a lovely soft blanket from dear friends. We are washing it to see if that is the source, and am hoping it's that and not an infection. Had dental work done yesterday and I know there's always a risk of bacterial infection from that thanks to DR. GOOGLE. Was cleared for surgery by my dentist! Checking things off the list.

Symptoms question: has anyone with bicuspid severe aortic stenosis/ascending aortic aneurysm felt FREEZING ALL THE TIME? I don't know if this is an actual symptom or if I am just cold :-p Thanks, Claire

On Friday, March 8, 2019, I was told by my cardiologist it was time to see a surgeon because my bicuspid aortic valve, which had been holding steady at AVA=1.3 cm for 8 or so years deteriorated this year to AVA= .9 cm; peak velocity=3.5 m/s; peak (mean) gradient of 49 mmHg; aortic aneurysm measuring 4.5 cm. So, it's time for valve and aorta replacement and/or repair. Since then I've been bounced around between my cardiologist and surgeon's offices and had my first major breakdown cry this morning out of frustration. Good news is that I have my first appointment with the surgeon on Monday, March 18 at 7 am. Progress! I've developed an annoying, but semi-persistent dry cough that reminds me of kennel cough! Ha. I hope it is unrelated to heart stuff. I have a pretty intense work schedule with three trips (two cross country) in the next three weeks and I am wondering if I will be able to do them. Two of them are major opportunities for my professional development and I am mourning this timing! I'm so grateful to have a place to post this. Thank you. Claire

Hi! I am new here. Trying to figure out how this site works--is this like a care page but specifically for heart valve surgery? I am waiting for my first appointment with a surgeon, hopefully in the next week or two. Thank you. Claire