Carmen's Journal

Deena Z  Hope at discharge you are feeling ALOT better.  It's a hard enough recovery due to the incredible exhaustion, let alone having any complications. Looks like you have been in the hospital for over a week.  You must to so want to go home.  

Rose Madura  Carmen, stay strong 💪.  Recovery is tough and sometimes there are complications. Wishing you a smooth recovery from here on our! ❤️‍🩹

Valerie Allen  I got great advice from others here. Get a first class or seat close to the front. The airlines say they will bump others if there is a medical need. Sign up for wheelchair assistance for each flight coming home (both ways if needed.) Carry your heart pillow so others are aware and for bumps. And in my opinion give yourself a few extra days to build energy. Our trip home was fine, even with a 2 hour Atlanta layover. And because of my heart pillow, a fellow heart patient came over and gave me a pep talk! 💕

Carmen P  I have requested both wheelchair and assistance on the way home.  Our layover through Atlanta is less than an hour.

Pamela Gregory  Hi Carmen. I had Dr. Roselli at CC October 2022. I live in DE so they recommended flying also. Went first class to be in the front, walked before I got on the plane, and had a very uneventful smooth flight. Definitely request a wheelchair so that you can sit and also they will take you to the front of the line at the airport. Make sure to have one at the other end too. You can always walk next to it for a while but it is sure nice to be able to sit if needed. Good luck to you!!!

Anna Ma  It is not hard if you give yourself enough days of recovery before flying. It is recommended to fly two weeks post surgery. I felt much better on day 13.

Trygve Harris  I was driven home (2 hours). But if you want to fly, then, give yourself plenty of time, and request assistance for sure.

Patricia Miller  No.  They don't have a hair dryer.  I couldn't have raised my arms to dry my hair.  I had a great dry shampoo powder that worked really well though.  I was discharged on day 11.  Only washed hair once.  Do you have some compression socks packed?  I enjoyed my favorite tea bags that I packed.  Felt good on throat.  Floors in heart building have ice/water/coffee/ hot water station.  There is a shared fridge/freezer as well.  Pillows aren't the best at CC so if you have room to bring your own, I'd recommend bringing one. Are you feeling better?  When is travel day?

Valerie Allen  Yes, they actually tell you not to raise your arms for ? Weeks. I’m forgetting now. Maybe 4 or 6? That’s why they suggested to get things out of high cupboards that you think you may need at home, unless you have someone to do it for you.

Suzette Schear  Hi Carmen you'll probably be better off with dry shampoo. there are no silly questions.  Everyone’s journey is different. After my ohs they put me in icu unit until I could walk to my reg room You are not supposed to lift you arms. For me I had tubes and drains attached. I also had one on my neck. I had a hard time moving freely at first , Depends on your journey you might be on pain meds and uncomfortable.  A family member can help wash your hair and blow dry it if you feel uncomfortable with your hair.  I also packed wet wipes so I felt refreshed.  Best wishes on your surgery and travels and for a healthy recovery. 

Carmen P  My second open heart. I know I can't raise my arms, the hair dryer was for my husband to dry my hair.

Carmen P  Thank you both for all the information.  I agree, a window with a great view, does wonders for making me feel better.  

Rita Savelis  I didn't wash my hair until weeks after heart surgery. It's really okay to not wash it, to not do anything except rest and heal.

Suzette Schear  Carmen you have a wonderful husband.  Didn’t realize it was your 2nd - your a pro at this.  Still wishing your a safe journey and good wishes for a healthy recovery. 

Suelynn Hanegraaf  My husband helped me blow-dry - kinda funny (he is bald so he is unfamiliar with using hair tools)!  I ended up drip-drying my hair for a few weeks. 😂

Carmen P  Anyone that needs a hair dryer on the cardiac ward at the Cleveland Clinic in the next two weeks, is welcome to borrow mine.  I brought mine from home.

Suzette Schear  Hi Carmen wishing you lots of luck best wishes for your procedure.  Adding some prayers in as well .  

Valerie Allen  You are in the very best hands for aortic surgery! You will be well taken care of. I head back there next week for my 3 month checkup Aug 2!

Sue Maize  You’re in great hands Carmen! Will be praying for you! Safe travels and keep us updated as you’re able to. ❤️‍🩹🙏🏻

Patricia Miller  Carmen- You will be in good hands w/ Dr. Roselli, his OR team, nurse practitoners, MD fellows, Cleveland Clinic nursing staff and many others. I was fortunate he was able to save my aortic valve (David procedure).  It is a delicate surgery, and he does it ALL the time.  I truly believe he is the best out there.  It was a second surgery for me as well.  You are well prepared and the calmness will settle in soon.  I will be thinking of you.  
btw. We enjoyed take out from a restaurant in nearby little Italy.  Just a couple miles from CC campus.  Night before my surgery.  If you have time, take a drive on Martin Luther King jr drive towards Lake Erie.  Green space w/ statues called Cultural Gardens.  Shady beautiful drive.  Very pretty.

Pamela Gregory  Carmen, I had Dr. Roselli October 2022. While it is definitely no walk in the park it was not nearly as bad as my mind had me believe it would be. You can definitely do this!

Gillian Hanson  Due to your aneurysm and valve problem You will probably have your aortic valve and aortic root replaced. Mine was replace nearly 24yrs ago in New Zealand.  I have a donated aortic valve and aortic root from a 52yr old male. Slightly too small but I am still fit and well.  Now aged 82 years! Good luck xxx

Gillian Hanson  Forgot to mention, I had surgery due to a severely calcified small  bicuspid aortic valve (2 leaftet) birth defect. Gillian

Sue Maize  Hi Carmen, I had my aortic valve replaced with a bovine valve and my Tricuspid valve repaired. I also had emergency single
bypass surgery. I’m recovering well—it was 4 weeks ago. 

Anna Ma  I just had my aortic valve and ascending aorta hemiarch, aortic root replaced in March. It was the aneurysm that I had to have the surgery done. I found out that my surgeon used the edward lifescience’s pre-assembled valved conduit. Basically the resillia valve and the aorta graft all pre assembled. Your doctor may use the same. I see you have Dr Rosilli, you are in good hands.

Anna Ma  As far as expectation goes, it probably will be a lot like your first surgery? This is my first surgery, so I don’t know what to compare. My recovery has been relatively uneventful. The first few weeks was painful, but I get better almost every week. Now three months post surgery, I don’t have any restrictions. My energy is not back yet and my heart rate is still a bit high.

Adam Pick  Hey Carmen - I have not had a heart valve reoperation surgery. That said, I have talked with a lot of patients that have. The good news to share with you is that you have found an extraordinary surgeon in Dr. Eric Roselli. I have been fortunate to know Dr. Eric Roselli for over 30 years. He is an incredible human and a world-renowned surgeon that specializes in complex aortic valve and aneurysm surgery. From what I understand, finding a highly- skilled surgeon is paramount for this type of procedure. And you... You have done just that. Great job! My thoughts are with you. If you need anything, please let me know.

Carmen P  Thanks for the encouraging responses.  The nerves are starting to kick in and I really appreciate the feedback. 
Adam, I found my first surgeon, Kevin Accola, by joining Heartvalvesurgery.com over 9 years ago.  I encourage everyone I know to join this amazing website.  
Heartfelt thanks for creating what is an ever updating source of information for those of us who have no idea of how to navigate or even where to start when receiving a heart problem diagnosis.   
Again, thank you.

Andrea Babcock  Best wishes for your surgery and a really good outcome and good recovery! You are lucky to have such a good surgeon. 

susan sperry  My first aortic valve lasted 12 years and was done in Syracuse, NY.  I had a redo in 2014 with Dr. RosellI at the Cleveland Clinic.  I did get a pacemaker at that time.  A  small price to pay so not a big deal.   It's now 2024 and I'm great. I had my last echo a month ago and everything is stable.  The pacemaker is working as it should and I do whatever I want.  I've never had any restrictions.  I'm sure they have improved everything since my first and my second surgery.  I had the valve and the root replaced both times.  The first valve actually was too small but hey, it lasted a long time so no complaints.  My second valve they no longer make but it's doing well so no complaints either.  I just turned 70 and think how  I could have died when I was 48.   I'm sooo grateful for modern medicine and the improvements they continue to make.  It's normal to be anxious.  I then, and still tell myself, they know what they are doing.  It's going to be Ok.  Death is rare now and that's what I cared about.   Do what they tell you and it's going to be OK. 

Lilly Black  Hi, Carmen. What kind of surgery did you have 8yrs ago? I'm asking because in 2007, I had my aortic aneurysm repair. It was called a Tyrone David procedure, a valve-sparing aortic root replacement using a Dacron graft. Then 7 years later I had my aortic valve replaced with a bovine valve. I haven't had any issues since. However that was 2 open heart surgeries. I'm hoping I will be a good candidate for a TAVR when my bovine valve begins to fail in the future. I hope you have a great outcome with the surgery!!

Denise Kirchner  Hi Carmen,
You are in good hands with Dr. Eric Roselli.  He did my mitral valve repair surgery (thoracotomy) in  2012 and  my mitral valve 
re-repair operation (full sternotomy) in 2016. Granted, not the same surgery as yours, but wanted you to know you chose a great surgeon for your te-operation - he’s one of the best in the country! 
I did have an easier recovery after my second surgery because I knew what to expect and knew I was in good hands with Dr. Roselli and his team, and had faith that God would see me through it.  Keeping you in my thoughts and prayers and sending hugs.
❤️‍🩹🙏🏻❤️🤗

Suelynn Hanegraaf  Hi Carmen, my aortic valve was replaced twice - first one (bicuspid) in Feb 2011 and the second one on April 8, 2024. No aortic aneurysm. Biggest difference was I wasn’t as fearful the second time. Also nicer weather to recover & walk outdoors! My first one was minimally invasive; second time - full sternectomy. I am now two months post op and it is different from my first one in the length of the incision and the healing of the rib cage. My personal experience has been that the healing seems longer (but hey, I am older 😉) and there are twangs and twitches in my chest area but like the first one, not very painful.  Where I feel aches & pains is in my left shoulder blade area and upper back. It is getting better each week through PT and their wonderful massages. (I start outpatient cardiac rehab next week.) The other difference is that I developed a-fib a few days after surgery and my hospital stay was extended to 10 days and I was given add’l meds. All manageable. If you have any add’l ?s, please post. This ❤️‍🩹 community is a brain trust!

Glenn Nicholas  Hi Carmen,  These things always look better in the review mirror.  I would count on that being the case again. I am 70  and post 12 weeks from an aortic valve and aorta replacement procedure.  For me, the hardest part of the whole process so far was coming out of anesthesia. I hope this time will be easier for you as you as you have previous experience and know what to expect. 

Valerie Allen  So your aneurysm was very small and not done 10 years ago I guess? I think you are extremely wise to go to CC for a redo! I can’t imagine better care. Keep us posted!

Patricia Miller  Carmen- I am so sorry you are facing another open heart surgery.  I went through a second OHS this past January for an aortic root and ascending aorta aneurysm.  I had a robotic minimally invasive surgery 5/2022 for severe mitral valve regurgitation.  Done at local university hospital.  My recent OHS was done at Cleveland Clinic by Dr. Roselli.  My recovery has gone much better than my MVR.  I was considered a redo as well for this surgery.  I think CC does more redos than other hospitals, so it was the right choice for me.  Excellent care.  Having a surgery far away is daunting at first, but it's doable.   I do think having the past experience helped w/ preparation, but this HVS community has helped me more than anything.  

Rose Madura  Carmen, I'm so sorry you must go through another surgery.  Please keep us posted. I will be praying for you. You are a true warrior 🪖❤️‍🩹

Kelly Whalen  Thank you, Carmen, if you want an additional opinion, please consider Dr. Jeevanandam at the University of Chicago Medicine. He has a special interest in treating patients traditionally considered inoperable or high risk. He has repaired damaged hearts in several patience awaiting transplant enabling them to forgo transplantation. (Not that you’re that serious but he is world renown for his skill.). Look him up. 

Pamela Gregory  Hi Carmen, I had Dr. Roselli and he is amazing. I am sure you have researched him, but if you haven't you will find only great things.

Carmen P  Thank you both for the information.  I'm more nervous this time around than the 2016 valve replacement.  I have an appointment at CC the middle of May.  Not sure what the Echocardiogram and the CT scan will show, but I feel that whatever is decided, my husband and I will be in good hands.  Wish me luck.

Phyllis Petersen  I didn't have any bad pain, but have had issues with blood pressure. Mine has been all over the chart. It was high enough last week that the cardiologist told me to see my PCP and have him put me on any of the blood pressure meds. I guess just to be on the safe side. I was told that the BP criteria in the year after heart valve surgery is less stringent then usual, allowing both a higher systolic and diastolic. You were right to consult your cardiologist so that you can have some peace of mind.

Carmen P  Thanks for responding Phyllis. My Doctor has decided to run some tests to rule out any problem. So glad he is doing that. The cardiologist I was seeing before my surgery was not following me very closely and I was the one making follow up appointments and it was me, requesting tests.

My BP is down this morning, so hoping it was only an anomaly. Just frustrating, since I have worked so hard in rehab. Oh well, two steps forward, one step back.

Phyllis Petersen  When I first went off the metoprolol, I did okay, but a couple of weeks later, my blood pressure was too high in cardiac rehab. They allowed me to continue but at a much easier rate. I was getting bored to tears by the time they heard from the cardiologist and could clear me to push harder again. Hopefully, yours will straighten out.

Darlene Smith  Ahhh yes, I can totally relate! My pleual effusion hit after two weeks and stayed around for another two months. I had to have the fluid drained once, and then was on several different meds to get it under control. And it was much more painful than the heart surgery itself. I hope your resolves quickly!!

Phyllis Petersen  Two miles twice a day? I have not been able to get my stamina up there yet. Thankfully, my pleural effusion hasn't returned. I'm glad yours didn't require draining. Keep up the great work!

Carmen P  Phyllis Petersen. My husband probably has a lot to do with the walks. The morning walk is the easiest. The afternoon walk is more of a challenge. I do have to remind him to slow down sometimes.

Phyllis Petersen  My first long walk with my cousin, I had to slow her down and then take a few minutes break half way through. I'm generally a fast walker, so I have to remind myself too.

Tom Dadisman  My heart rate is 66-90ish, I'm on a calcium channel blocker. My doctor did me too your heart rate post surgery generally follows your before heart rate plus some percentage. Mine before surgery was 55 which is what its been most of my life.

Roseline Rosario  Glad your doing well.. No fever?.you just might need a bit more atenolol...call the nurses from the floor they know a lot

Susan Lyons  I had mine done on the 14th and rate is around 120 and I think it is what is making me feel so wiped out. I get wiped out walking to the bathroom. Have only gotten one walk outside.
My body is actually moving with each beat.

Elaine Cutri  It should go down in a while - let your doctor know. I let my doctor know, but he wasn't too concerned - BP was the focus right after surgery - not to get too low. My HR was running in the 85-110 even with Metoprolol (25mg/twice a day) for about 8 weeks after surgery. It settled down into the 70s and lower after that. It still will speed up into the 80s just before going to bed. This is annoying because the valve still seems loud, but I can still get to sleep - just takes a little longer than I use to. Best Wishes.

Carmen P  Thanks for all the comments. It seems that a rapid heartbeat after surgery is normal for some of us. I see the cardiologist on Tuesday and will let you know he says, Susan Lyons.

Meredith Bray  I was at 85-100 all through rehab even on metoprolol. You're heart is thinking, "Man, this is sooo easy now, look what I can do!" It took about a year before I was consistently below 80. Like you, prior to surgery i was super low - like 60-65. maybe dangerously low? Regardless, it'll change!

Rita Savelis  A high heart rate is definitely part of the process and one of the "side effects" of OHS that we are not all prepared for. I imagine you are probably on betablockers to slow your heart down after all the trauma it's been through. You have to give that amazing organ some time to get over its ordeal.
Take care.

Nap Garcia  I'm four months post-op and just completed 10 weeks of rehab, I still hover between 84-104, but I'm not taking any meds, whether betablockers or otherwise. I feel great, but I do hope it goes down in time. It's encouraging to see some of you said it could take up to a year. I'm still continuing an exercise regimen which I was doing prior to surgery and continuing after rehab (albeit not as intense as pre-surgery because my body is still healing, but I'm pushing harder as I'm coming along).

Rita Savelis  It's been 18 months since my surgery and my heart rate is high (100). My cardiologist said I am okay (and "protected" since on anticoagulants for 2 mechanical valves), that's it's okay to have a high heart rate if it doesn't "bother" me. That I can take a betablocker to lower it, but for my "comfort" and not because it's necessary. So I don't take betablockers and am learning to live with a high heart rate.

Susan Lyons  my heart rate has slowed down to 80's-90's. Tomorrow makes 3 weeks since surgery. It does go above 100 when I have done any walking. Home nurses,PT and OT all seem happy with my stats.

Phyllis Petersen  Good to hear from you! I'm a couple of days behind you in recovery, but had an easier procedure. Most of the pain I get comes from the pull on the incisions and trying to clear out my lungs. I went 12 hours overnight without pain meds, but plan to keep on a controlled plan during the day. When I think of what my body has been through, I'm amazed at how well it's doing.

Roseline Rosario  Prayers things will be normal. I have to fly out to Maryland Sunday.. surgery Monday! Keep praying stay safe!

Tom Dadisman  Had my surgery last Tuesday and I'm doing well. I was most surprised by the lack of pain. I also had a great surgical team all 8 of them who pushed through a tedious 8 hour surgery. My vest wishes to Dr Kevin Miller who's a very skilled surgeon. Also the hospital staff could not be better! My best wishes to Carmen and her family 😁. Tom

Carmen P  I feel very confident after meeting Dr. Accola. My husband, Alan and I feel that he is the "one". I am scheduled for a heart cath on Monday and surgery on Tuesday. Hotel reservations are made. Hoping there are no snafus with the insurance and trying to tie up all the loose ends. Hoping that Hurricane Matthew takes a turn to the east. Praying for God to guide Dr. Accola's hands on Tuesday.

Phyllis Petersen  As if you don't have enough on your mind! Hopefully, it moves east or hugs the coast and doesn't affect your surgery. I know power can be a big concern over there.

Carmen P  Roseline Rosario Can you tell me why you are going to John Hopkins rather than having surgery at Florida Hospital Orlando? Or do I want to know???

Phyllis Petersen  It's scary to have someone going into your heart! I think we all feel the same. I hope your testing goes well and you get your appointment set, so you can start looking forward to the other side of surgery.

Ruth Valenzuela  I know exactly how you are feeling but I think once surgery is over, you'll think it's not as bad as you imagined. It's no walk in the park but it's really amazing how well you'll go through it. I had the same diagnoses as you and I had my surgery one year ago on the 29th of Sep at the age of 63. My aortic valve and part of my aortic root were replaced with surgery taking 5 hours. The worse part for me was waking up with the breathing tube in my mouth and I really stressed to the surgeon to make sure I couldn't remember that. He couldn't promise me that so I told myself if I woke up with it to remain calm and let it do it's job. I did remain calm and it wasn't bad at all. It stayed in me for another 13 hours after I woke up but it really didn't bother me much. As the nurse was ready to remove it, she told me I might gag a little which I did (not bad) because it promptly comes out. Recovery is actually rougher than the surgery but each day gets better and better. My prayers are with you! I'll also pray you don't remember the breathing tube (most people don't)!

Roseline Rosario  Getting all your ducks in a row is also a process...at least for me it was, so I know how you feel. Good luck with your appointment!

Jim Whipple  Hi Carmen, I'm going through a lot of the same stuff. Trying to get tests done and trying to get every test I could possible need. Do the heart cath on the 11th and another echo done before that on the 4th. Asked my cardiologist what other things they might want but felt as if I didn't get a straight answer. Tell me what kinds of tests are you getting? From the info on the CC website and the info they sent me I think this is all but I would hate to get there and not have all they need and have to go through testing there over a several day period. Any help any one can give me or advise who wonderful people have concerning pre testing information would be greatly appreciated. Thanks to all of you and good luck Carmen.

Carmen P  Jim Whipple. I have had an echocardiogram, a CTA and an aorta ultrasound (lower). I have not yet had a heart cath. I have had a wonderful person named Julie at my doctor's office that has stepped up and smoothed my way for the tests I needed this week. Without her help I would have been lost.

Adam Pick  Carmen, Congrats! You found a great surgeon and team in Dr. Accola and FL Hospital. Many patients from our community have had awesome results with Dr. Accola.

Adam Pick  In case you haven't seen it, here's a video about Dr. Accola - https://www.youtube.com/watch?v=jDBzGkrVZXk.

Carmen P  Thanks Adam. Your website is the reason I went with Dr. Accola. We were in a panic about hospitals and doctors that could perform my surgery. Thanks again. I'll try to keep posting through the madness.

Meredith Bray  Hello Carmen! I had my surgery done at Morton Plant Hospital in Clearwater, and I know that Shands is highly regarded as well. Talk to people in your community, there are a lot more of us heart-surgery folks than you'd think. Once i started asking questions, it seemed like everyone I talked to either had surgery, or had a close family member that had heart surgery. I had a bicuspid aortic valve, and went in to surgery knowing there was a possibility of having part of my aorta replaced as well.

I know heart surgery is an awful thing to face, and there are people here who have shared their stories so you can get an idea of how not-awful the experience will be. In my opinion, the hardest part truly is where you are right now - the planning, the waiting, the uncertainty. We're here for you Carmen, with all your questions and insecurities and worries and concerns. Bring it on!

-Meredith

Carmen P  Thanks Meredith. I live in the Panhandle. I will need to travel for surgery and haven't a clue how to find a good surgeon. I'm looking at Shands and Florida Hospital Orlando, but choosing the doctor is the scary part.

I've gone from moderate to severe since last year and now apparently the race is on to get this done. Wow, I thought I would have more time.

Thanks again for all your advice. I have made calls to friends and family hoping to garner information. I'm sure the questions are just beginning.

Tammy Pilcher  Hi Carmen, I had my bicuspid aortic valve replaced almost 2 years ago at Florida Hospital Orlando. Dr. Kevin Accola was my surgeon and I am so very thankful I found him on this site! You are welcome to read my journal and I'll be glad to answer any questions. By the way, I live in Freeport, FL. God bless!

Meredith Bray  You're welcome, Carmen. It seems pretty typical that all of the sudden things start to change quickly! I went for 10 years waiting, then in a period of 12 months I went downhill pretty quick. I was fortunate that my cardiologist is part of a valve replacement team, and works very closely with the surgeons. Can you get a referral from your cardiologist?
-Meredith

Carmen P  Tammy, so glad to hear from you. I live in Fort Walton Beach and I have been looking at Dr. Accola at Florida Hospital Orlando. My daughter is helping by contacting her clients for referrals at Shands. I feel that your post might just be the sign from above that helps make my decision. God bless you also. I am so worried about making the right decision

Tammy Pilcher  You're welcome, Carmen. I know how you feel about making this decision. If you do decide to go see Dr. Accola, I know you will love him. He is an awesome surgeon and a wonderful person, too. I wrote a post in my journal detailing my surgery experience that you might find helpful. If I can answer any questions for you, I'll be glad to. I'll be keeping you in my prayers.

Carmen P  Good morning. My husband, Alan and I spent yesterday talking to the insurance co and doctor's offices. It was very stressful.

Meredith Bray  Carmen, I agree about being stressful! I think the worst part of preparing for surgery was arguing with the insurance companies and the doctor's office staff about what was covered and what wasn't. I was fortunate to have an insurance company representative on-site at my employer, to help me navigate and get the best care.
Meredith

Cathleen Weed  Hang in there Carmen! I had the same exact genetic issue. If there is ever a "good time" to have heart surgery it's now because technology is amazing and you'll be well taken care of :). Sending you lots of peaceful thoughts and love xo

Cathleen Weed  I do...it's super frustrating and the unknown is scary...just know that many others on this site have walked in your shoes. It gets easier xo

Catie B  My heart goes out to you, Carmen. The anxiety is tough. After years of watchful waiting, my surgery time is nearing. Keep educating yourself, reassuring yourself, know that others are on this same journey and are coming out the other side.

Kevin Lee  I had the same news on May 31 after a life time of monitoring the condition. Good news is they decided not to replace the ascending aorta once they actually saw it. But they did replace the Aortic Valve. I am a month post op now and doing great. The words open heart surgery is scary. But Cathleen DeWitt was right. These medical technology has this down to a science compared to 100 years ago. Do all the research you can. I recommend Adam Pick's book as well.

Nancy Lewis  We were all screaming on the inside when we first get the news. This site will help. The people here are wonderful survivors and super supporters. Bless you.

Carmen P  Thank you all. We've been on the phone all afternoon trying to determine which hospitals and doctors are on the insurance. That is the truly scary part.