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 ...Read more
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
Rita Savelis Happy 5 months to the new Claire. Always nice to get an update from you.
Wishing you the best. Take c ... Read more
Rita Savelis Happy 5 months to the new Claire. Always nice to get an update from you.
Wishing you the best. Take care.
Marie Myers Happy anniversary! I totally agree about not being the same person after surgery, and rebuilding the ... Read more
Marie Myers Happy anniversary! I totally agree about not being the same person after surgery, and rebuilding the “new you”. Wishing you many more healthy anniversaries!
Mike Roskowinski Hey Claire so good to hear from you! Its been a while but it sounds like you are moving in the right ... Read more
Mike Roskowinski Hey Claire so good to hear from you! Its been a while but it sounds like you are moving in the right direction. I have not seen Kevin posted either in a long time. Hope that the MRI goes well and there is nothing else that you need to deal with here in the future. Keep it up and keep pushing!!
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 ...Read more
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
Joy Vera I was just thinking about you & wondering how the Ornish program was going. It sounds great. Not so ... Read more
Joy Vera I was just thinking about you & wondering how the Ornish program was going. It sounds great. Not so great is the sternum issue & I do hope that can be resolved for you. Like the new do!
Carlos Banuelos Sorry to hear about your sternum pain, but thanks for the info re cardiac rehab. I’m going to chec ... Read more
Carlos Banuelos Sorry to hear about your sternum pain, but thanks for the info re cardiac rehab. I’m going to check it out when I get back into town. Do you know if scripps has a similar one too?
Nicole DuPont Sorry to hear about your pain, but it’s nice to hear how you’re coping and doing your best to mov ... Read more
Nicole DuPont Sorry to hear about your pain, but it’s nice to hear how you’re coping and doing your best to move forward. The Ornish program sounds amazing!
Mike Roskowinski Hey Claire Great to see your message. I was wondering how things were going for you since your surger ... Read more
Mike Roskowinski Hey Claire Great to see your message. I was wondering how things were going for you since your surgery. Sorry to hear about the pain in the sternum that must be frustrating. Congrats on the cardio rehab keep it up.
Rita Savelis Thanks for the update Claire. Life does go on. You write the smartest things. And I REALLY want your ... Read more
Rita Savelis Thanks for the update Claire. Life does go on. You write the smartest things. And I REALLY want your pain to end. XOX
Tracy Fallu Hi Claire-
I’m with you on cardiac rehab- it is necessary in my opinion, especially for the mind. Y ... Read more
Tracy Fallu Hi Claire-
I’m with you on cardiac rehab- it is necessary in my opinion, especially for the mind. Your statement “life goes on” is so true! Therefore, we must make the best of it. Sometimes the focus is to get through the next hour, or the current day. We can all do it!
LINDA ROBERTS You have a good attitude and outlook. I am hoping Time will be your healer for the sternum pain.
Claire Kreger-Boaz Thanks, heart fam. I have had some very dark moments and decided to wait to write until I was feeling ... Read more
Claire Kreger-Boaz Thanks, heart fam. I have had some very dark moments and decided to wait to write until I was feeling better. I have advocates going through my case to make sure everything was done properly. The biggest concern/issue was that I wasn't put in a binder or bra post-op, which is apparently important for women who have OHS. It's extremely frustrating to know I might be feeling a million times better now if they had done that then. I hope that women facing OHS read my journals and DEMAND their doctors put them in a binder bra immediately post op. I also learned from my surgeon that an orthopedist wouldn't be the way to go, and that they send sternum injuries, etc. to thoracic surgeons! So, I am trying to avoid getting stuck in the darkness and pain because I am also grateful for new valve, aorta, and aortic root!
Claire Kreger-Boaz @carlos Scripps has cardiac rehab, but it is very different in that it is primarily exercise-based. T ... Read more
Claire Kreger-Boaz @carlos Scripps has cardiac rehab, but it is very different in that it is primarily exercise-based. They have other classes you can take, but you have to sort of cobble them together on your own. I needed more structure and support. If you're a "go-it alone" kinda person then that might work well for you. But I need lots of support and community to keep me going. Best of luck!
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! ...Read more
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
Joy Vera I was interested to see how you found the Ornish program - thank you for that description. I have to ... Read more
Joy Vera I was interested to see how you found the Ornish program - thank you for that description. I have to think the meditation will help with the insomnia too. Lots of other positives here as well. So nice to hear that!
Mike Roskowinski That is awesome Claire. It is great to be surrounded by so many friends and family to help you out.
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 ...Read more
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. ❤️🐄
Hello Claire!
Sorry to hear about your sternum pain.
I had sternum pain for several months followi ... Read more
Hello Claire!
Sorry to hear about your sternum pain.
I had sternum pain for several months following mitral valve repair surgery late last year.
I think typically the pain does lighten up over time (as long as you DON'T do anything to exacerbate the pain, like lifting something too heavy or moving your arms in any way that causes strain on the sternum before it is completely healed).
I think you'll be fine. Just give it some time as your body heals from the trauma of open heart surgery.
And remember, everyone's experience with recovery is different. For some it's a breeze. For others, not so much.
We have to work within the confines of our own experience with each step of progress in our recovery.
Peace and blessings to you and your family!
Tee Ad I’m so sorry the pain is unrelenting!! Along with tramadol and extra strength Tylenol I relied on ... Read more
Tee Ad I’m so sorry the pain is unrelenting!! Along with tramadol and extra strength Tylenol I relied on icepacks almost 24-7. Good luck!!! It will get much better.
Judy S Claire I think it’s amazing that you’re walking an hour a day despite the pain! I hope the pain s ... Read more
Judy S Claire I think it’s amazing that you’re walking an hour a day despite the pain! I hope the pain subsides soon but kudos for your strength!
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 ...Read more
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.
Joy Vera I'll bet that cardiac rehab is going to be just the thing to help you rejoin the "world". I know fro ... Read more
Joy Vera I'll bet that cardiac rehab is going to be just the thing to help you rejoin the "world". I know from having recovered from a 2010 surgery that things definitely do return to normal. Even so, there are up days & down days on the way back. Best wishes on the rest of your recovery.
Catie B Oh my! That's a lot to deal with, Claire. Soooo sorry for the bleeding! I hope you'll feel like yours ... Read more
Catie B Oh my! That's a lot to deal with, Claire. Soooo sorry for the bleeding! I hope you'll feel like yourself again soon. Congrats on expanding your walking and on getting started soon with the cardiac rehab program. So glad you have a close friend to walk with! You probably realize you might not want to reduce meat consumption till you get the all-clear on your anemia. (I was found to be a little anemic last year.) Best to you!
Diane Esposito Hi, Claire; I’m glad you were able to get off the Xarelto once it was determined that there was ble ... Read more
Diane Esposito Hi, Claire; I’m glad you were able to get off the Xarelto once it was determined that there was bleeding; Thank goodness you recognized it so you could put it behind you. The cardiac rehab sounds fabulous I wish we had it in CT. I know what you mean about everyone being around the first couple of weeks and then they’re not...for me the biggest issue affecting my recovery is the isolation and boredom of everyone else is working and I can’t drive yet so I’m stuck in the house. Hopefully that will change soon. I agree with Catie that it would be great to have a walking partner.
Tracy Fallu It’s a great feeling when you notice progress, isn’t it!! How wonderful to enjoy a long walk with ... Read more
Tracy Fallu It’s a great feeling when you notice progress, isn’t it!! How wonderful to enjoy a long walk with your friend. From one educator to another, take one day at a time, when there is a bump in the road, tackle it and remember they will become fewer as time goes on.
Rita Savelis Hello Claire. So nice to to hear from you. I always relate to what you say. OHS recovery is strange ... Read more
Rita Savelis Hello Claire. So nice to to hear from you. I always relate to what you say. OHS recovery is strange, that's for sure. Therapy is a one way to deal with all the crazy emotions that it brings up. Binge watching of Netflix is another. And your comprehensive rehab should be helpful, especially if it includes a support group and stress management.
Eating lots of lentils might help build up your iron. Take care!
Claire Kreger-Boaz Thank you all! I am having terrible sternum pain this week. Nurse says it's nerve pain. It's crazy, t ... Read more
Claire Kreger-Boaz Thank you all! I am having terrible sternum pain this week. Nurse says it's nerve pain. It's crazy, these ups and downs!!!
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" ...Read more
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
Peter Eglinton Nice report! Continuing to send best wishes.
Diane Esposito Claire, I’m so happy that you’re doing so well! I’m not familiar with Dean Ornish’s rehab pr ... Read more
Diane Esposito Claire, I’m so happy that you’re doing so well! I’m not familiar with Dean Ornish’s rehab program but now I’m curious and will look it up. Keep up the good work!
Rita Savelis Thanks for the update Claire. Nice to see you moving forward and some of those side effects fading... ... Read more
Rita Savelis Thanks for the update Claire. Nice to see you moving forward and some of those side effects fading... take care.
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 ...Read more
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💪🏼❤️🐄
Noreen Kitchen Recovery is hard and we are all different so we all have different recoveries. Go easy on yourself. Y ... Read more
Noreen Kitchen Recovery is hard and we are all different so we all have different recoveries. Go easy on yourself. Your body has been through a major trauma and it needs time to heal. One of things that I found most difficult was mentally recovering. I really struggled in the first few weeks with trying to get myself back to how I was before and the stress of that made me feel worse. There is no rush. Just let yourself heal. I’m two years post surgery and have never felt better, but it took time. It gets better.
Kevin Bradley Claire, Noreen is right. We all recover differently so don’t beat yourself up and mange the bumps t ... Read more
Kevin Bradley Claire, Noreen is right. We all recover differently so don’t beat yourself up and mange the bumps the best you can. I have the clicking in my chest also. It feels weird but I know it’s part of the recover and should go away so I don’t stress over it. I haven’t had nausea, but the last 4 days I’ve been dealing with lightheadedness when I stand up from sitting or lying down. I’m thinking my doctor may need to decrease the heart medicine I am on. Hopefully I can stop taking it in a few months. Otherwise I am feeling pretty good. I’ve been walking everyday about 2 miles and going out a little for dinners and hanging out with friends and family. Keep your head up because it will get better! 😁❤️💪🏻
Rita Savelis Thinking of you Claire and how hard emotional recovery can be when you are dealing with various side ... Read more
Rita Savelis Thinking of you Claire and how hard emotional recovery can be when you are dealing with various side effect probems. Nausea and indigestion are the worst. Don't know what meds you are still on that may be causing this. I only know that you have been through too much. Wishing you some answers and some peace. Although i never had nausea or clicking or afib i feel i had everything else one could have. So many ways yr body can react. Take care.
Marie Myers I know what I experienced as clicking in my chest turned out to be the physical sensation of a better ... Read more
Marie Myers I know what I experienced as clicking in my chest turned out to be the physical sensation of a better/greater cardiac output with each beat. For me, when I took a slow, deep breath, I felt the heartbeat stronger. It really was not clicking for me, only the sensation of a stronger heartbeat. When I took shallow breaths, I did not experience the clicking/strong beats. This is a totally normal thing. Hope that helps!
Susan Lynn Claire - I was under the misconception that every single day would be better than the day before, but ... Read more
Susan Lynn Claire - I was under the misconception that every single day would be better than the day before, but that wasn't the case. There are ups and downs during recovery and you only have 3 1/2 weeks behind you. There are so many things that can also contribute to feeling "super gross" - not the least of which are the drugs. My recommendation is to keep up your strength - eat whatever you like even if it's junk food and ice cream provided it's low in Vitamin K and excessive salt. I realize you're having indigestion, but that could also be the medications on your empty stomach. You will feel better with a bit of nutrition and the good days will be more frequent, but it does take some time. It's a process and unfortunately, not a straight line to the end. Hang in there - you will get through it.
Dan Baltazor Some days feel like big set backs. Someone here told me to let 3 weeks pass and then look back on t ... Read more
Dan Baltazor Some days feel like big set backs. Someone here told me to let 3 weeks pass and then look back on that 3 weeks. I saw improvements that way in 3 week increments. Hang in there, recovery can be tough some days.
Claire Kreger-Boaz Thank you all. I woke up feeling much better today. I appreciate the reassurances!
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). 😭🙏🏻 ...Read more
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). 😭🙏🏻
Kevin Bradley I can’t believe it’s been 17 days already!!!! I’m not sure if I should be doing this but I am a ... Read more
Kevin Bradley I can’t believe it’s been 17 days already!!!! I’m not sure if I should be doing this but I am able to get somewhat comfortable on my left side at night but still not sleeping through the night. It doesn’t hurt when I lay on my left side but I do get stiff when I get out of bed lol.
Claire Kreger-Boaz You must be super-human! I’m craving side sleep but it hurts too much! How are you painwise?
Kevin Bradley It comes and goes. I just deal with it knowing it will eventually go away. Lol it seems the more I do ... Read more
Kevin Bradley It comes and goes. I just deal with it knowing it will eventually go away. Lol it seems the more I do things and move around the less stiff I am. When I rest for too long I get sore in my sternum.
Susan Lynn Claire- you may have nerves regenerating. My surgeon froze several of mine during surgery and there ... Read more
Susan Lynn Claire- you may have nerves regenerating. My surgeon froze several of mine during surgery and there was some discomfort and sometimes numbness. Hopefully, some over the counter meds will take the edge off. You're getting closer to full recovery every day. Keep the faith! ❤
Gina Fiorentino Yes, that sounds familiar. My sternum still is very sensitive 1 year later... but nothing compared t ... Read more
Gina Fiorentino Yes, that sounds familiar. My sternum still is very sensitive 1 year later... but nothing compared to the first month or so. I remember I traveled as a passenger with my husband driving (with the pillow between me and the cross body seatbelt) 2-3 weeks after surgery. He tapped the brakes suddenly to avoid another car, and I immediately felt a stretching/crackling sensation up my sternum followed by a strong pain. It scared the crap out of me, but the aftercare cardiac nurse told me I probably just strained my muscles. I had trouble putting any pressure- especially if I layed on my chest (for many months after)... and my incision gets "angry" when rubbed or touched near where the wires are. I understand this is all normal.
Catie B For what it's worth, I was told by cardiac nurse at hospital not to turn onto my side for six weeks.. ... Read more
Catie B For what it's worth, I was told by cardiac nurse at hospital not to turn onto my side for six weeks....
Claire, I hope your pain eases soon.
T.C. Sayles Claire, I can't say I had that exactly, but even now 10 weeks post, there is still tenderness. The wo ... Read more
T.C. Sayles Claire, I can't say I had that exactly, but even now 10 weeks post, there is still tenderness. The worst for me was the neck and shoulder pain on the top right sides. That still gets stiff when I walk and I have to swing my arm in circles or stop walking so it can rest and now move and stop hurting.
Tracy Fallu I’m sorry you are having pain Claire. I remember the chest pain for several weeks. If it eases your ... Read more
Tracy Fallu I’m sorry you are having pain Claire. I remember the chest pain for several weeks. If it eases your mind, there is absolutely nothing wrong contacting your surgeons office.
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 ...Read more
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!
💙🐄
Tim Saint I'm hoping for you minimal bad and many good days ahead. The toughest times are in the rear view mirr ... Read more
Tim Saint I'm hoping for you minimal bad and many good days ahead. The toughest times are in the rear view mirror. Keep moving forward. All the best 👍
Susan Lynn Great progress! Wishing you more and more good days! Hang in there, Claire!
Kevin Bradley Sorry to hear about the little bumps in the road. Keep your head up and know they are only temporary. ... Read more
Kevin Bradley Sorry to hear about the little bumps in the road. Keep your head up and know they are only temporary. Everything will get better in due time. The worst is over.
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. ...Read more
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! ❤️🐄
Peter Eglinton Hang in there! Sending healing thoughts your way.
Susan Lynn Claire - I'm was on many drugs when I was first released from the hospital and I swear the anesthesia ... Read more
Susan Lynn Claire - I'm was on many drugs when I was first released from the hospital and I swear the anesthesia took a long time to work its way out of my system. I felt better than I thought I would, but it takes a long time to feel truly like yourself. The exhaustion is difficult, because it lingers for awhile. Rest. Walk. Relax. Repeat. That's all you need to do right now. The healing will happen in time. You've already come a long way in 12 days! Hang in there! ❤
Kevin Bradley Hey Claire, I know you are dealing with some of the effects of OHS, but I am so glad you are finally ... Read more
Kevin Bradley Hey Claire, I know you are dealing with some of the effects of OHS, but I am so glad you are finally over that hump and recovering. I too have deal with some of the same effects. I’ve been dealing with headaches, spacey, full head feeling as well as slight depression and sleepiness. It’s also stinks not being able to move as quick as my mind wants to. My mind and body are on 2 different pages at the moment. I had my fist sneeze yesterday and I felt my soul leaving my body!!!! It brought tears to my eyes! I know things will continue to get better and that is what keeps my head up. I have my follow up tomorrow as well. Let me know how you make out, friend.
Alan Jamieson You're doing great, and you'll get through it all and be better than ever! Chin up!
Mike Roskowinski Hey Kevin and Claire. Sorry to hear about the bumps you are facing. Just keep pushing through. I am s ... Read more
Mike Roskowinski Hey Kevin and Claire. Sorry to hear about the bumps you are facing. Just keep pushing through. I am sure there are days that are worse than the other but you just need to keep pushing. Keep your head up and have the strength and faith in the process.
Rita Savelis Claire, the weeks after OHS are exhausting! There are no words to describe the exhaustion. Your heart ... Read more
Rita Savelis Claire, the weeks after OHS are exhausting! There are no words to describe the exhaustion. Your heart has been traumatised. My surgeon told me "You'll do one thing and then you'll be exhausted for the rest of the day". This was true. In hospital (where I stayed awhile) I remember that after eating breakfast (which was delivered to me!), I was too exhausted to imagine doing ANYTHING else that day.
Your blood pressure may be low because of meds you are on - possibly betablockers (which slow your heart down to give it a break after surgery).
In any case, it's such a weird time, the weeks following surgery. You want to be "better", but better isn't immediate. It's easy to do too much and then be tired. Your hormones are out of whack, your family and friends think that because surgery is over you are now fine and fixed.
Keep writing. Your posts are real. It helps tpo be real. Post surgery can be hard... and then you get better. Maybe not tomorrow, but somewhere down the road. So be easy on yourself. It's okay to just watch TV or stare out into space and not get anything done. Healing is already a big chore for your body. Take care.
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. ...Read more
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
Mike Roskowinski Hey Claire! So glad that you were able to get out of the house and go get some food. I am sure that ... Read more
Mike Roskowinski Hey Claire! So glad that you were able to get out of the house and go get some food. I am sure that is probably an amazing feeling after what you have been through these past days. I hope that you get past these few issues that you are having with recovery. I am sure they are a pain in the ass but push through. As for the cardiologist vs the surgeon that is a great question. I have seemed to notice that these two are often not on the same page about some things. In my experience before scheduling my surgery my cardiologist (C) was way more laid back than the surgeons(S). I was told by the C that I can wait off a 3-6 months and then get it reevaluated. The S was a little bit more on the lets get it done sooner side of things. In my situation I knew I was going to need surgery no matter what and if I can just go now and get it over with and not worry I sided with the S. I know the C is good and knows you probably a lot better but I would really look into what the S is saying. They do the surgeries and maybe have a little more insight. Just my opinion so far on my journey. Good Luck and God Bless!! Hope you get better soon.
Meredith Bray Hi Claire! My sleep cycle didn't regulate for several months, and it never returned to pre-surgery rh ... Read more
Meredith Bray Hi Claire! My sleep cycle didn't regulate for several months, and it never returned to pre-surgery rhythms. During my recovery, I could only sleep at most 3 hours at a time, but there were many nights the first month where I watched a LOT of Netflix at night.
My entire chest area felt super-sloppy/sloshy for about 2 months. I didn't like laying flat to begin with - I'm a side sleeper. My best rest post-op was in the recliner, with my head supported by a U-shaped travel pillow, and my arms supported by bed pillows wedged underneath.
Cardio vs surgeon? I don't know - my cardio recommended one type of valve, and my surgeon recommended another type of valve. I listed to both sides arguments and went with the surgeon's recommendations because he sees the results first hand. My suggestion would be to talk to a cardiac nurse. Your insurance provider may have someone you can talk to, or ask around for a friend of a friend you can bounce ideas off of.
Good luck - each day gets a little easier!
Meredith
Holiday, FL
Rita Savelis Sleep can be hard for the months after OHS. I took sleep meds sometimes just to get some rest.
That ... Read more
Rita Savelis Sleep can be hard for the months after OHS. I took sleep meds sometimes just to get some rest.
That loud beating heart is a side effect of surgery. Eventually it becomes yr new normal.
Surgeons know more than cardiologists but really care more about surgery than following patients
You'll see yr cardiologist more often., so you should like and trust him or her. And it seems like you do.
Marjorie Murphy Sleep was very hard for me. I tried melatonin, Benadryl,, trazadone. Nothing worked. I think so ... Read more
Marjorie Murphy Sleep was very hard for me. I tried melatonin, Benadryl,, trazadone. Nothing worked. I think some nights I didn't sleep at all. My cardiologist said it was PTSD. Finally after about 2 months I saw a clinical psychologist who specialized in PTSD. You know we have been thru a very traumatic experience. Both physical and mental! I am doing better. Also I am taking Ativan at night about 1 hour before bed. It really helps the anxiety. Good Luck. You will get thru this!!!
William Fults I’m of the opinion that the surgeon sees a problem, fixes problem, and moves on. Your cardiologist ... Read more
William Fults I’m of the opinion that the surgeon sees a problem, fixes problem, and moves on. Your cardiologist is the one where science and art meet more closely, knows you, and that’s the doctor to listen to. But listen to yourself too, I’ll bet you have a good idea of what’s going on and you should listen to that voice.
Rob Sparling Claire, the heart will calm down. It needs to re-learn what it is expected to do. It had been turboch ... Read more
Rob Sparling Claire, the heart will calm down. It needs to re-learn what it is expected to do. It had been turbocharged and now you are asking it to tap the brakes. It will take time.
Sleeping may settle into a routine if you do. Set up a routine each night — including hot shower and meds — and hop into bed. You’ll wake up in the wee hours for awhile but eventually it eases. It took me 4-5 months to fully settle in. My Fitbit used to gripe at me for “inconsistent sleep patterns” I was pissed! 🤐
Cardiologist vs Surgeon? Have them both explain and sit in the same room with you at the same time. Balance the two.
You are there! Let it peel off and fall away. 👍
Marie Myers All good advice and thoughts from the gang. I will add that the new stronger heartbeat is still with ... Read more
Marie Myers All good advice and thoughts from the gang. I will add that the new stronger heartbeat is still with me at 2 years...Especially when I take in a deep breath. The increased cardiac output is still quite noticeable to me. If I sit quietly and breathe in a shallow, slow manner, my heartbeat is not as noticeable. I think it is my new normal.
Jennifer John Claire, glad you’re on the mend. Takes time for the heart to heal. Check out some of past Journal p ... Read more
Jennifer John Claire, glad you’re on the mend. Takes time for the heart to heal. Check out some of past Journal posts about recovery. Might give you a chuckle or two.❤️💪🏼
Shannon Gray The stronger heart beat is normal, believe it or not. My surgeon explained to me that the heart is ma ... Read more
Shannon Gray The stronger heart beat is normal, believe it or not. My surgeon explained to me that the heart is maneuvered during surgery, closer to the front of your body... leaving us to feel more stronger heartbeats and feel like our bed is even moving. That will settle down over time. Best wishes for an easeful recovery.
Civita Fahey Funny you say that the heart beats are so strong it feels like your body moving.. I felt the same way ... Read more
Civita Fahey Funny you say that the heart beats are so strong it feels like your body moving.. I felt the same way.. I actually could look at my chest and see it move.. it was scary at first but I was told it was normal. sleep well that's still a problem.. I wake up several times at night, go back to sleep and wake up.. not sure if its the OHS or just old age..lol..
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 ...Read more
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.
❤️🐄
Peter Eglinton Thinking of you and sending healing thoughts.
Tom McDonald Hang in there Claire, you will get through this bump in the road, remember baby steps. You are on the ... Read more
Tom McDonald Hang in there Claire, you will get through this bump in the road, remember baby steps. You are on the recovery side and thats great news!
Mike Roskowinski Hey Claire sorry to hear about these issues. It is hard to know what our bodies will do after such a ... Read more
Mike Roskowinski Hey Claire sorry to hear about these issues. It is hard to know what our bodies will do after such a surgery. It is day by day that you need to take it and hopefully get to the better part of recovery soon. Our prayers are with you during these times and I see you do have a great support system there to get you meals and stuff done around. Keep fighting and soon enough you will be better.
Alan Jamieson So sorry to hear that you're having a rough time, but glad you have some support around you! You'll g ... Read more
Alan Jamieson So sorry to hear that you're having a rough time, but glad you have some support around you! You'll get through this!
Barbara Wood It can be a really tough go at first, your recovery sounds a lot like the way mine went. It does impr ... Read more
Barbara Wood It can be a really tough go at first, your recovery sounds a lot like the way mine went. It does improve...sounds like you have a great attitude too - lots of good wishes sent your way Claire.
Rita Savelis Oh, Claire, I hear you and second everything you say. It's hard. Fkg hard. So you have to acknowledge ... Read more
Rita Savelis Oh, Claire, I hear you and second everything you say. It's hard. Fkg hard. So you have to acknowledge that. It helps to say it all. And then you move slowly forward. It takes time to heal. OHS is a big deal. There are many repercussions that take time to get used to. Keep your eye on the light at the end of that tunnel. Take care.
Kevin Bradley Claire, we are now on a new roller coaster! We are going to experience things we’ve never had to be ... Read more
Kevin Bradley Claire, we are now on a new roller coaster! We are going to experience things we’ve never had to before, but know it’s all part of the process. Keep your head up and keep pushing! We got this!!!! ❤️ 💪🏻
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 ...Read more
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!
❤️💪🏼🥺
Mike Roskowinski Sorry to hear Claire but you are now in the recovery side. Glad to see you almost ready to go home. H ... Read more
Mike Roskowinski Sorry to hear Claire but you are now in the recovery side. Glad to see you almost ready to go home. Hope the blues go away soon.
Susan Lynn Great to hear from you, Claire! Sorry you've had some post-op complications - hopefully they're tem ... Read more
Susan Lynn Great to hear from you, Claire! Sorry you've had some post-op complications - hopefully they're temporary. You'll feel much better when you get home. Speedy recovery!
Marie Myers Glad you made it to the recovery side! I hear you about the not-sleeping-thing. I could not sleep in ... Read more
Marie Myers Glad you made it to the recovery side! I hear you about the not-sleeping-thing. I could not sleep in the hospital either. You will love being home!!
Diane Esposito It’s so good to hear from you Claire and I’m glad you’re almost ready to go home. Great to hea ... Read more
Diane Esposito It’s so good to hear from you Claire and I’m glad you’re almost ready to go home. Great to hear that the surgery went well. When I was hospitalized in December when my mitral regurgitation was discovered, I was so sleep deprived from being awakened every 2 hours for vitals or bloodwork etc. Couldn’t wait to be in my own bed, so I sympathize with you.
Catie B Congratulations on your surgery. So sorry about the afib--that happened to me, too. Hope everything s ... Read more
Catie B Congratulations on your surgery. So sorry about the afib--that happened to me, too. Hope everything settles down and that you'll have steady healing, day by day.
Rob Sparling Claire, so sorry to hear about the a-fib scare. I can only imagine. Glad you are going home! You e ... Read more
Rob Sparling Claire, so sorry to hear about the a-fib scare. I can only imagine. Glad you are going home! You earned it. Get a lot of rest, get into a routine — especially at bed time — and walk when you can. You did the hard stuff already! ❤️💪
Joey Hardee So happy to see you are getting better and looking to go home soon. That is awesome. Time to get your ... Read more
Joey Hardee So happy to see you are getting better and looking to go home soon. That is awesome. Time to get your recovery on! …..Wait... You can't sleep at a hospital? Say it isn't so!!! : - ))
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 ...Read more
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! ❤️💙💜♥️💚
Herb Greenberg Great attitude. Positive thoughts your way.
Marie Myers Good for you being calm! Gotta trust the science.. Praying for a smooth trip for you all!
Mike Roskowinski That is awesome Claire. You will be in recovery very soon. You will be in our prayers tonight and thr ... Read more
Mike Roskowinski That is awesome Claire. You will be in recovery very soon. You will be in our prayers tonight and throughout your recovery.
Lisa Guinan You’ve definitely got the right attitude to come through with flying colors. Won’t be long til yo ... Read more
Lisa Guinan You’ve definitely got the right attitude to come through with flying colors. Won’t be long til you’re enjoying the best ice chips you’ve ever had.
Dan Baltazor You've got this Claire. Your attitude is awesome and that will help you so much on the recovery side. ... Read more
Dan Baltazor You've got this Claire. Your attitude is awesome and that will help you so much on the recovery side. I'm praying for you and will be looking for the thumbs up photo when you feel up to it.
Louanna Miller You will be on the side of recovery soon. Praying for a successful surgery and recovery. Take care ... Read more
Louanna Miller You will be on the side of recovery soon. Praying for a successful surgery and recovery. Take care of you.
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 ...Read more
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
Peter Eglinton Thinking of you and sending positive energy!
Mike Roskowinski Just think you will be on the other side of this soon. Wish I was going to be on that side soon. I ha ... Read more
Mike Roskowinski Just think you will be on the other side of this soon. Wish I was going to be on that side soon. I have 3 straight days at the Mayo starting on the 3rd. Maybe I will then get my date picked out.
Susan Lynn You're going to do great! Time to join the recovery club!
Christopher May You’ll be on the recovery side before you know it. Try to relax. The next couple of days will fly b ... Read more
Christopher May You’ll be on the recovery side before you know it. Try to relax. The next couple of days will fly by.
Tom McDonald The waiting is almost over Claire, then onto recovery. I look forward to reading your posts, post sur ... Read more
Tom McDonald The waiting is almost over Claire, then onto recovery. I look forward to reading your posts, post surgery. Sending you positive vibes, somerimes its hard to stay positive when you are facing all of this. Praying for all our surgeons and, team to work there magic when our time comes. Your in my thoughts and prayers for speedy recovery. Take care!
Diane Esposito Claire, you’ll do great! Best of luck to you!
Tracy Fallu You are going to do great. Soon you will have a great nap and your trusted medical team will take phe ... Read more
Tracy Fallu You are going to do great. Soon you will have a great nap and your trusted medical team will take phenomenal care of you.
Alan Jamieson The waiting is the worst, isn't it! You're going to do great, and good on you for knocking out those ... Read more
Alan Jamieson The waiting is the worst, isn't it! You're going to do great, and good on you for knocking out those to-do list items! Stay strong!
Judy S You’ve got the right attitude and soon will be on your way to a smooth recovery!
Louanna Miller Claire, be sure and rest the next few days. It’s very important going into the surgery that you ha ... Read more
Louanna Miller Claire, be sure and rest the next few days. It’s very important going into the surgery that you have rested. I was told this by someone who had OHS for valve repair and I believe he was correct. Rest and be at peace.
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 ...Read more
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
Civita Fahey Claire, they gave me a surgical bra in the hospital but truthfully, I used my normal one when I got h ... Read more
Civita Fahey Claire, they gave me a surgical bra in the hospital but truthfully, I used my normal one when I got home.. I didn't have any issues. my scar is about 5" long not a total 8" so it ended right where the bra line was., so maybe that was it..but other people on this site have had good recommendations for after surgery bra. stay strong, you will be on the other side soon.. prayers to you for a successful surgery.
Dianne A They gave me one in the hospital. I had also ordered a front hook comfort bra from Amazon.
Mike Roskowinski Hey Claire I bet it is all overwhelming. I don’t even have my date set yet and that is also frustra ... Read more
Mike Roskowinski Hey Claire I bet it is all overwhelming. I don’t even have my date set yet and that is also frustrating. But like so many others here this waiting and pre-surgery stuff seems to be the most stressful. Think you will be back in your feet soon and ready to get back to normal.
Rita Savelis If there is anyway you can get by without a bra for a few days, weeks, I recommend it for comfort. Ot ... Read more
Rita Savelis If there is anyway you can get by without a bra for a few days, weeks, I recommend it for comfort. Otherwise, the hospital will give you a surgical bra. And if you search on this site you will find many recommendations for after-OHS bras.
You are completely spot on in saying that this is all different for women. I still wish women could post bare chested photos of their scars 24 hrs after OHS like men do, but it doesn't happen.
Know also that no matter when your last period was, the hormonal fluctuations of major surgery can mean you may get a period in hospital right after OHS. Yes. But you'll get through it. There is so much you can't be prepared for it, and you get through it anyway. It's out of your control. Beathe. Recovery happens with or without you controlling being prepared. It just happens. Give your body the time and the rest it needs. Wishing you some peace.
Dianne A So the nurses in the hospital told me they want women wearing a OHS bra as a sternum protection. the ... Read more
Dianne A So the nurses in the hospital told me they want women wearing a OHS bra as a sternum protection. the one I got is like a super deluxe no bounce sports bra with 6 center hooks. The one I ordered from Amazon is more like a comfort / lounging bra than a sports bra. It was nice to have a spare for laundry. But .... I learned something yesterday. I am in week 5 post op, and the home OT coordinator was here discharging me. He (note the HE) asked if I had any questions. I had been meaning to ask my home OT about this bra situation, SHE has been so helpful with other tips and tricks. I'm at the stage where all those hooks are aggravating the tender scar. So I wanted to know if I could switch to a back hook bra that just had decent no underwire support. So I asked HIM. His answer was, well you aren't allowed to reach behind your back to hook your bra, and you can't wear a pull on. Ummm, I can hook my bra in the front then pull it around? Maybe men don't know these things .... So that is what I am doing today.
Dianne A I hadn't been sleeping well for months before my surgery because I couldn't breath if I layed down, s ... Read more
Dianne A I hadn't been sleeping well for months before my surgery because I couldn't breath if I layed down, so I was trying to sleep propped up. And I was coughing non-stop. I was just miserable. Oh, and if I did manage to fall asleep inevitably I would have to get up to go "make water" because I was on a high lasix dose. I was never so glad for surgery day.
Claire Kreger-Boaz I love all of these responses!!! Rita and Dianne, please keep sharing these stories. I agree that wom ... Read more
Claire Kreger-Boaz I love all of these responses!!! Rita and Dianne, please keep sharing these stories. I agree that women should be allowed to share their scar pictures, and I didn't know we weren't able to! Well, I am going to b/c that BS. I have ordered 6 different post OHS bras and most of them don't fit great now so I am sending them back. I ordered a zip front sports bra that looks like it's going to be the best of the options. I will report back! I also have the hook front one from Amazon. I have been wondering about how PMS and having my period will play out post OHS, and I imagine it will just make everything more uncomfortable b/c I get breast pain before and during my period. Well, as my good friend's father once said, "There's nothing to do but do it!" I am finding purpose though in this women's need for good info and sharing that isn't censored!
Kimberly Kristensen I am wishing for you the best of recoveries and will be looking forward to you sharing your journey w ... Read more
Kimberly Kristensen I am wishing for you the best of recoveries and will be looking forward to you sharing your journey when possible. We see the surgeon today to discuss scheduling my husbands OHS for aneurysm.
Lisa Guinan I wore the surgical bra from the hospital for 2 weeks. I'm almost 6 months post-op and have given up ... Read more
Lisa Guinan I wore the surgical bra from the hospital for 2 weeks. I'm almost 6 months post-op and have given up on wearing underwire bras. They just aren't comfortable with my scar. I'm not too well-endowed so it's not really a problem.
Susan Lynn Claire - I feel for you. I remember the sleepless nights and reality setting in with the pre-surgica ... Read more
Susan Lynn Claire - I feel for you. I remember the sleepless nights and reality setting in with the pre-surgical week nose oitment and antibacterial soap. I was exhausted by the day of surgery and was running on pure adrenaline. However, as I was waiting for my turn in pre-op, I was filled with positive anticipation. The waiting was finally over. Between the anesthesia and the drugs, I had the best sleep I had in awhile.
It's easy to say don't stress yourself out, but everything will go as planned. These professionals will take care of you.
When you get home, you'll figure out exactly what you need to do to maintain momentum in your recovery. Yes, of course we plan, but there will be times you will improvise.
I delayed the dreaded bra for about two weeks, but found that some of my 'built in' bra summer tops gave me enough support in the interim. You're going to be doing a lot of relaxing and napping. By the time you need to go anywhere important, you'll probably be able to use one of your regular bras.
Hang in there- you're going to be better than fine when this surgery is in the rear view mirror. ❤
Dianne A My first day of wearing a standard decent support no underwire bra went well. Surprisingly, even th ... Read more
Dianne A My first day of wearing a standard decent support no underwire bra went well. Surprisingly, even though I've lost over 15 lbs, my bra that use to be a bit loose was very quite snug. I had a full sternotomy 5 weeks ago.
Meredith Bray Insomnia, exhaustion, & crying jags - all normal. I got a surgical bra in the hospital, and took it o ... Read more
Meredith Bray Insomnia, exhaustion, & crying jags - all normal. I got a surgical bra in the hospital, and took it off as soon as I got home, I wore a close-fitting cami/tank under layers. Your body will likely have to relearn how to regulate body temperature, and you'll have cold and hot flashes, so wear easy layers. If you haven't hit menopause yet, be prepared to get your period in the hospital. My poor, poor first-year male nurse :/ hahaha I ended up wearing disposable underpants a very kind mature female nurse got for me from the maternity ward.
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 ...Read more
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
Bradley Dunn I never told my kids bye. I didn't want them to worry. If I didn't make it I'm not sure the effect i ... Read more
Bradley Dunn I never told my kids bye. I didn't want them to worry. If I didn't make it I'm not sure the effect it would of had on them.
Kevin Bradley Claire, keep your head up! You are doing a great job. My surgery has been rescheduled to the same day ... Read more
Kevin Bradley Claire, keep your head up! You are doing a great job. My surgery has been rescheduled to the same day as you now. We will be forever heart warrior buddies :). Don’t hesitate to reach out if you want to chat to clear your mind.
Mike Roskowinski Claire you are going to be just fine. You have similar chances of getting in a car accident as you do ... Read more
Mike Roskowinski Claire you are going to be just fine. You have similar chances of getting in a car accident as you do with the surgery. I have faith you will be perfectly fine. I thought about leaving goodbye messages to my kids but don’t think I can or will. Trust your doctors and surgeons as they do this stuff for a living.
Kevin Stevens Claire, You appear to be a wonderful, caring person. You will find lots of help along the way. I ... Read more
Kevin Stevens Claire, You appear to be a wonderful, caring person. You will find lots of help along the way. It’s a big deal but Everything is going to be fine. You were on your way to healing .
Claire Kreger-Boaz Thank you all. What a gift this site is. I'm not thinking in terms of saying "goodbye." I am just mak ... Read more
Claire Kreger-Boaz Thank you all. What a gift this site is. I'm not thinking in terms of saying "goodbye." I am just making sure everyone knows how much I love them. I don't want anything left unsaid. I know I am going to be better than ever and I have complete trust and confidence in my surgeon. He's my Dr. McDreamy. Full disclosure: I have never seen a single episode of Grey's Anatomy. :-D
In other news, have terrible insomnia and am waking up every hour. Today is my pre-op.
#OHSW
Christopher May What you’re feeling is normal. I think we all do this. I surely did. Everything I did in the weeks ... Read more
Christopher May What you’re feeling is normal. I think we all do this. I surely did. Everything I did in the weeks leading up to my surgery, such as getting a haircut, I wondered if it was the last time I’d do that. Even though I knew the chances were slim that I’d even have a complication, the mind wanders to these types of thoughts. I just wanted to be close to my kids at all times. In hindsight, I was overreacting. And you’ll see that you’re doing the same. You’ll realize when you wake up in ICU and the subsequent days, that this whole thing is a piece of cake. The hardest part is the fear and unknown leading up to surgery. You’ll be fine and smiling and rolling your eyes about how worried you are right now once you get to recovery. I promise.
Rita Savelis Crying is normal. It's okay. This is all hard. And you push through it. Take care. Wishing you the be ... Read more
Rita Savelis Crying is normal. It's okay. This is all hard. And you push through it. Take care. Wishing you the best.
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, ...Read more
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 ...Read more
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
Civita Fahey OHS does take an emotional toll on us.. but, you will get through this and you will do great. take it ... Read more
Civita Fahey OHS does take an emotional toll on us.. but, you will get through this and you will do great. take it one day at a time and try some relaxation tapes, those help a lot. Talk it out to people who understand what you are going through, we are here and if you need to talk let me know. it helped me a lot to talk to people that had gone before me.
Kevin Bradley Claire, keep your head up because it will be done and over with soon. I totally understand the emotio ... Read more
Kevin Bradley Claire, keep your head up because it will be done and over with soon. I totally understand the emotions that you are experiencing as I have felt more than I’ve expressed on here, but I take deep breaths and know we are in good hands. I also had a little feeling of calmness on Monday after my Pre-op. Thank God for this community that is here for us to keep us together and fight through this difficult time. I am here as I know everyone else is here if you need to talk, but you only have 6 days until I go in......lol. Take care.
Dianne A Going in, everything seems insurmountable but afterwards it all works out in the long run. Most hosp ... Read more
Dianne A Going in, everything seems insurmountable but afterwards it all works out in the long run. Most hospitals will work with you for a interest free payment plan with terms that aren’t a reach for you. Another option is to open a new credit card that has a long interest free period.
Josh Souliere I recently went through Aortic Valve replacement in November, and experienced all of the same emotion ... Read more
Josh Souliere I recently went through Aortic Valve replacement in November, and experienced all of the same emotions. Hang in there, and you'll be fine. It's hard, but be strong. Lean on your supports. We're looking forward to pics of you and that heart pillow!
Mike Roskowinski Claire stay strong and know that your life is more important than the financials. You will figure out ... Read more
Mike Roskowinski Claire stay strong and know that your life is more important than the financials. You will figure out a way to pay for the surgery. What we have done before is have fundraisers at a bar with silent auctions and stuff like that. Just worry about your health the rest can be taken care. Prayers are with you and your family
Tom McDonald Claire,
Im feeling the same as you lots of emotions and "overwhelmed" and, my surgery isn't until 6/ ... Read more
Tom McDonald Claire,
Im feeling the same as you lots of emotions and "overwhelmed" and, my surgery isn't until 6/4/19. The waiting is the hardest part, my mind starts to think of all the what if's and staying positive. Keeping busy helps me cope. I always tend to over think thing too much sometimes. It sounds like you have a great support system, also know you are not alone, "we" have this great site and community of heart warriors praying for us all. I can't thank them all enough. Claire, I wish you all the best in your upcoming surgery and a speedy recovery!! Everything will work out. Sometimes it's hard to see in the moment. Prayers to you and your family.
Claire Kreger-Boaz Thank you all for your wonderful words of encouragement. I am so happy I came across this community. ... Read more
Claire Kreger-Boaz Thank you all for your wonderful words of encouragement. I am so happy I came across this community.
Christopher May Claire, this is a process and it’s all worth it. You’ll find that the side you’re on is the har ... Read more
Christopher May Claire, this is a process and it’s all worth it. You’ll find that the side you’re on is the hardest. Once you get to recovery, it’s great! Piece of cake. Focus on your family and getting to recovery. The rest are just details that will work themselves out.
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. ...Read more
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?
Don Brown I will pray for a quick recovery for u. I dont know what to say to be prepared for. Just know you wil ... Read more
Don Brown I will pray for a quick recovery for u. I dont know what to say to be prepared for. Just know you will be foggy and little discomfort and little pain when u first start waking up after. It was emotional for me when i woke up and saw my wife and so damn happy i made it through.(all in a good way). Its easy for me to say not to stress it too much but impossible for u to feel knowing u are going through it..i think a good support family and friends will help you too. I will pray for u and ur family and will await to hear from you on your journal when you write back after you surgery. God bless and speedy recovery.
Bradley Dunn A good spouse is all you need. The rest will take care of itself.
Dianne A I had 4 weeks notice from "whats the deal with all of these tests" to surgery day. Tomorrow will be ... Read more
Dianne A I had 4 weeks notice from "whats the deal with all of these tests" to surgery day. Tomorrow will be one month post op! My husband says the very best thing I did was load the freezer up with components to throw together quick and easy low fat low sodium meals. I roasted and individually froze chicken breasts. Used the skin and bones from roasting the chicken to make a lot of no salt added chicken broth. Cooked and froze in small portions beans and also whole grains (farro, wheat berries, hulled barley). Stocked up the pantry with low-sodium veggies and diced tomatoes. Frozen fish filets, frozen veggies.
For me, I'm super glad I brought out all the pillows, with fresh pillow cases, and had them strategically staged near the bed and near a comfy chair and footstool.
Susan Lynn Claire - Getting the date is a big step! It's a relief and pretty scary at the same time. You're go ... Read more
Susan Lynn Claire - Getting the date is a big step! It's a relief and pretty scary at the same time. You're going to be just fine! It seems that you're mentally prepared to rock and roll!
I agree with Dianne- having food prepared in advance is very helpful. I also found that having enough pjs and loose clothing for two weeks worked for me. ❤
Kevin Bradley Claire, I am happy you finally have a date and will be on the road to recovery soon shortly after me. ... Read more
Kevin Bradley Claire, I am happy you finally have a date and will be on the road to recovery soon shortly after me. A week to the day to be exact! I will be waiting for you to join me and the others! I am trying to get everything in order before I go in next Wednesday. Today at my pre op was very overwhelming, but I finally feel a sense of calmness and ready to be fixed!
Mike Roskowinski Congrats Claire. That is awesome. Time to get fixed and move forward. Prayers are with you and your f ... Read more
Mike Roskowinski Congrats Claire. That is awesome. Time to get fixed and move forward. Prayers are with you and your family. You will be on the road to recovery quickly and soon back to normal life.
Marie Myers I wish I had asked for a sleeping pill while in the hospital. It was very difficult to rest with the ... Read more
Marie Myers I wish I had asked for a sleeping pill while in the hospital. It was very difficult to rest with the constant overhead pages, and the frequent wake ups for weighing, Bloodwork, pills, ect. I read on this site that someone requested "no disturbance "from 11 pm-6:00 am. Did not know that was possible, and sure wish I had asked for that. I was exhausted from lack of sleep during my in hospital recovery.
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 ...Read more
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.
Catie B I hope the rash turns out to just be irritation from the blanket or something like that. I did have ... Read more
Catie B I hope the rash turns out to just be irritation from the blanket or something like that. I did have a chest CT to evaluate my aorta and check size of aneurysm. I trust you can get your list of questions answered during your appt, and answered well.
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 ...Read more
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
Catie B This may not help... But I've always been a freezy person. Feet get especially cold. This unfortunate ... Read more
Catie B This may not help... But I've always been a freezy person. Feet get especially cold. This unfortunately did not change after surgery.
Michael Andreas I also had a BAV/AAA and was 59 at surgery. My hands have always been cold but after surgery I was pr ... Read more
Michael Andreas I also had a BAV/AAA and was 59 at surgery. My hands have always been cold but after surgery I was prescribed coumadin for 4 months and I was freezing. Once off the blood thinners, I'm back to short sleave shirts all year round.
Lisa Kane Maybe it’s your thyroid Claire, low thyroid can cause you to feel cold all the time.
Claire Kreger-Boaz interesting point, Lisa! I will ask about this. It's been crazy. My husband has been putting a blanke ... Read more
Claire Kreger-Boaz interesting point, Lisa! I will ask about this. It's been crazy. My husband has been putting a blanket in the dryer every night and throws it over the two comforters and 12lb weight blanket b/c I'm so cold, esp. at night.
Lisa Kane Hi Claire, I would definitely have your doctor check your thyroid. (Labs) I’ve had hypothyroidism f ... Read more
Lisa Kane Hi Claire, I would definitely have your doctor check your thyroid. (Labs) I’ve had hypothyroidism for years and being cold all the time (I can relate) is part of it and red flag.
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 ...Read more
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
Mike Roskowinski Hey Claire I know how you feel. I just found out that I even had an issue as of February of this yea ... Read more
Mike Roskowinski Hey Claire I know how you feel. I just found out that I even had an issue as of February of this year. So exactly one month ago. I am glad that I have made it this far without having to worry about it but once they found I have issues I have been back and forth for testing and different things. I am glad I get to get a vacation here for a few weeks to relax and spend time with my family before I come back to 3 straight days of visiting the Mayo Clinic and doing more tests. Hopefully I will know more by 4/5 on next steps and have a date planned. At this point I want to just get it done and over with so I can get into recovery and start moving forward with my life. Good luck and I know its hard but keep your head up and you will get through it. Try to keep busy and enjoy your life. This is a great site to post and express your feelings because there are a lot of us out here that are either going through this or have been through it. Lots of hope and great people.
Claire Kreger-Boaz I wish you the best of luck, and hope that you get some direction soon. I am having a hard time b/c I ... Read more
Claire Kreger-Boaz I wish you the best of luck, and hope that you get some direction soon. I am having a hard time b/c I've known this was coming pretty much since I was 19 but was always told it would happen in my 50s or maybe even not at all! Are they going to do surgery, or is that not known yet?
Kevin Bradley Claire, I understand where you are coming from. I was born with a heart defect, but had it monitored ... Read more
Kevin Bradley Claire, I understand where you are coming from. I was born with a heart defect, but had it monitored over the years and never gave me any issues until recently. I guess I took it for granted and thought I would be ok living with the defect the rest of my life, but I was wrong. I am scared as heck to have surgery, but also realize that if I don’t get it fixed I could be facing more issues! I have my days where the anxiety kicks in, but finding this site and the “family” here has given me the positivity to get through it and recover.
Claire Kreger-Boaz Kevin, I am so happy that I came across this site! So many of our stories are similar. It is especial ... Read more
Claire Kreger-Boaz Kevin, I am so happy that I came across this site! So many of our stories are similar. It is especially comforting to connect with people who are on the same timeline as me, because, I don't know about you, but it's like I either want this surgery to happen TOMORROW or NEVER. I am terrible at "waiting." Thank your for commenting and I hope that you get some answers soon! I just read your story, and your options. Hoping for #1!
Kevin Bradley Claire, I totally agree with you and feel the same! LOL! The waiting game stinks and eats me up insid ... Read more
Kevin Bradley Claire, I totally agree with you and feel the same! LOL! The waiting game stinks and eats me up inside at times, but I guess I should look at the bright side that I’ve been given the chance to get “fixed” as some don’t. It’s pretty amazing how we all have been brought here because of our hearts to help each other fight through these difficult times and build some new friendships! I look forward to following your success!
Mike Roskowinski So true Kevin... That is my exact feelings as well. I see yours is coming up soon and you will be r ... Read more
Mike Roskowinski So true Kevin... That is my exact feelings as well. I see yours is coming up soon and you will be ready to start that road to recovery. Thoughts and prayers are with you!!
Michael Cline Claire, The anticipation leading up to the surgery is far worse than the event itself. Trust your sur ... Read more
Michael Cline Claire, The anticipation leading up to the surgery is far worse than the event itself. Trust your surgeon and know that you will be on the recovery side soon. Then you can resume your career.
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 ...Read more
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
Catie B Welcome, Claire! There's heaps of information available here, as well as support from others for your ... Read more
Catie B Welcome, Claire! There's heaps of information available here, as well as support from others for your consultations, tests, surgery, recovery, etc. I had a similar surgery to the one you're needing in 2016. I hope your appointment with your surgeon will go very well!
Marie Myers I pretty much had the same surgery as Catie (above) 2 years ago this month. Although it sounds daunti ... Read more
Marie Myers I pretty much had the same surgery as Catie (above) 2 years ago this month. Although it sounds daunting, it is very doable. Good luck with your surgeon visit. Ask any questions that you have both at your surgeon and on this site. We have all been in your shoes. Wishing you a smooth ride!
Mike Roskowinski Welcome Claire. Good to have you join us out here. This website is awesome. Lots of information and s ... Read more
Mike Roskowinski Welcome Claire. Good to have you join us out here. This website is awesome. Lots of information and support to help us get through our special lives. Make sure you keep active in here and also take the time to read peoples journals. Amazing stories and lots of hope can be found in them. Our family will keep you in our prayers with all the others.
Tom McDonald Welcome Claire,
This site is a wealth of info, you've come to right place. Ask lots of questions. Al ... Read more
Tom McDonald Welcome Claire,
This site is a wealth of info, you've come to right place. Ask lots of questions. All the best on your journey.
Steven Liebowitz Welcome to this wonderful site, which is loaded with factual information and an increasing number of ... Read more
Steven Liebowitz Welcome to this wonderful site, which is loaded with factual information and an increasing number of fellow heart warriors who are willing to share their stories and be a solid support group for you!
Claire Kreger-Boaz Thank you all! I just had my first MAJOR crying spell b/c I am in a hellish loop between my cardiolog ... Read more
Claire Kreger-Boaz Thank you all! I just had my first MAJOR crying spell b/c I am in a hellish loop between my cardiologist and surgeon's offices and still do not have my first appt with the surgeon yet.
Wishing you the best. Take c ... Read more
Wishing you the best. Take care.