Carmen's Journal

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 DeWitt  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 DeWitt  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.