Carol's Heart Valve Journal

Jim Hernandez posted a note for Carol that says: Hi Carol! Adam forwarded me your journal because I am preparing to have my first surgical consult at Brigham and Womens this Thursday with Dr Byrne. I was hoping to pick your brain and experiences, other than what you described thru your journals, about B&W and your thoughts,experiences and interactions with Dr Byrne. It is between him and Dr Adams at my Sinai in NYC to try and repair my mitral valve if not replace it...

Terrie Syvertsen posted a note for Carol that says: Dear Carol- First I am going to refer to you as Carol(Attleboro) as there are other Carol's!
I am Terrie (from Calif) and came to your guest book to talk to you about your recent post about what appears to be recurring episodes with your "SVT". I realize this must be frustrating to say the least but would like to share a bit of my story with SVT's.
My first episodes with SVT"s that took me to the ER happened while I was at the computer. I had been getting ready for my surgery for Aortic Stenosis and a valve repair and had had a few off and on again odd palpataions. I took them to be just the heart responding to the laps I had been swimming or my bike riding. The first times went almost unnoticed. On March 31st. I had a neighbor come and take me to the ER as I was having symptoms that frightened me as I had never had the heartbeats not back down on their own before. I was to spend a few hours there.
At first they tried to give me meds thru I V's but they wouldn't slow it down. I am sure you know the feeling. At some point they added some Cardizem thru the drip lines and it finally returned in time to regular rhythm. I was sent home with instructions on what to do if it happened again and told that I had had an SVT episode according to the EKG's that had been taken while at the hospital. I was given a prescription for the pill form of Cardizem and told to see my cardiologist.
I saw him the next day and was informed of what SVT is (which you know as well).
I was assured that it had nothing to do with the heart valve problem. I was told that it might be "cured" by having an ablation. At the time they thought my heart could take the ablation prior to surgery for the valve. I made plans. I ended up with a phone call just before the scheduled ablation whereby the surgeion said we would have to address the SVT after the heart surgery as something came across on the EKG from the hospital which would put me at risk doing it prior to the valve replacement. I took the meds which were increased to 120 capsules once in the morning and once at night of the Cardizem Sr(also known as Diltiazem). From March until Sept. 13th of this year I had not one episode of the SVT. On Sept. 13th(close to my 13th. day out of surgery for my valve) I had been walking at the park across the street and the palpitations came back and wouldn't back off. My husband and I got in the car and headed for the ER. Because of the recent surgery we were afraid I was having a-fib which is common after surgeries. They hooked me up to an I.V. and ran an immediate EKG which began picking up a "new" episode as we sat there. So it was caught within minutes. (I will note that they hospital had taken me off of the Cardizem while having surgery and the cardiologist had taken me off of another blood pressure med and lowered the dose so I had no idea what was going on. It turns out that by 7:00 that night and another EKG or two a cardiologist agreed with the physician specialist at the hospital had said it looked like SVT to him. They agreed and put me back on the Cardizem and sent me home. I saw my regular cardiologist on the 19th for first post op visit and he had looked at results of tests at the hospital and said it was the SVT back. He increased my meds back to the dose I had been taking and I haven't had any palpitations since the hospital on the 13th. I also was placed on a "Heart Monitor" on the 15th. and have not shown one episode since putting it on so far. So for now I am going to have to continue the medicine and be aware that if it starts up to report or go to ER. We are already discussing a possible Ablation to see if it will stop these episodes after my heart has had time to mend properly.
I do know that SVT's are common. I know that the choices we have is to ride through them or take medications. The only other thing is to have an ablation. I am writing to let you know of at least another person who has the same diagnosis. I realize the frustration and abruptness of changes it puts your life in at times.
I know that the majority of episodes will stop on their own if I remain calm and sort of talk my way through them. What bothers me is I don't know if certain exercise levels will bring them on. I plan on going laps when my sternum is healed and the Dr. gives me the go ahead but that is awhile off. I also bike indoors and outdoors and want to be sure I wait until it is safe to proceed to more activity which is not tight now. For now I have to be happy adding more and more space to the daily walks. I just wanted to touch base with you in case you wanted someone to bounce things off of. So I hope you are able to move forward with good information and your health care professionals. Terrie

Carol Jackson posted a note for Carol that says: Carol,
Congratulations on your 1 year anniversary! I remembering following your journey while I was getting ready for my surgery on Oct. 8, 2013! My anniversary is coming up! Glad to hear you are doing so well(even if you have to take meds!) Great photo of you at your child's wedding. Take care.

Carol Jackson posted a note for Carol that says: Hey Carol,
Hard to believe that we are both at the 6 month mark. I'm glad we are 6 month post op and not 6 months pre op!! It sounds like you are doing great. Sounds like your exercising is going well. I find that I really need to exercise my upper body everyday otherwise I feel like my skin on my chest feels tight. (kind of hard to explain!) Enjoy planning the wedding. We are both so blessed.

Bert posted a note for Carol that says: Hi Carol. Sounds like we're pretty close in time to our surgeries, and I think you also had a mitral valve repair?

I just past the 5 month post-op. Like you I was very active before surgery and then this smacked me. But I've known about it getting worse for many years.

It seems like we're also in about the same boat with our recovery. I'm just now starting some super slow tentative jogs again and some gym weights. Good luck on your recovery and I hope we're both at our max again real soon!

Jim Jones posted a note for Carol that says: Carol:

It is WONDERFUL to see how well you are doing! I am real glad that things have settled down for you and that you are back exercising. I know how important both these elements are for our lives and peace of mind.

Enjoy wedding planning and keep up your good health! (I am not due back at BWH until September.) All the best!

Ernie A.S. posted a note for Carol that says: Yay Carol! Glad to hear you are doing well and still getting better. Keep it up.
Good luck and good health to you.

Renee Radocaj posted a note for Carol that says: Hi Carol!! So glad you are doing better. I took a long break from posting too. I have WPW and will undergo an ablation in May. It's amazing what a difference 6 months make! Keep it up - you already looked fabulous but how fun planning a wedding!! Wishing you all the best!!

Aubrey posted a note for Carol that says: Hope things continue to get better. From you last note, I did a little research on SVT. Interesting in that is is mostly benign and common is kids. Can manifest like yours and it normally responds to medication. Good luck with this do keep working with the doctors. They should know how best to help you through this. One question, I am taking metoprolol, 12.5 mg twice a day, is that the same as yours, except your is the long acting kind?

Also, taking a medication daily is not the end of the world. For the heart, I take an enteric coated 81 mg per day aspirin to keep the blood slippery and have for a few years now. Once you start this, it is advised to stay on it unless your doctors says otherwise. Also the metoprolol mentioned above, which is a low dose and it still keeps my blood pressure a little lower than I like but it has been good so far. The real reason I am not pressing the cardiologist to get off of it is that I had afib about six years ago and do not want to take a chance of it coming back, even though my heart is in excellent shape otherwise. Not sure getting off of a low dose of this stuff is worth the risk of a worse afib problem. I am kind a risk manager mentality and prefer to err on the side of lowest risk. Have that conversation with the doctors about what are the short medium and long term risks and how to manage to the lowest risk you are comfortable with. For me it has been about a lot of choices along the way with the advice of the doctors. Good luck and keep healing.

Pam posted a note for Carol that says: Carol,

OK, so no easy route for you I see......hang in there. This IS hopefully the answer and you will now heal. HAPPY THANKSGIVING MY FRIEND!!!!

Love you neighbor,

Carol Jackson posted a note for Carol that says: Carol,
Glad they found out what was wrong and that you have meds and a monitor. Happy Thanksgiving. We all have much to be thankful for.

Ernie A.S. posted a note for Carol that says: Starting to piss me off now woman! I knew you were going to be trouble the first time I ever met you. You start getting better now and healing right or I'm going to send Aubrey over there. They call him "THE ENFORCER", and believe me, you do NOT want Aubrey over there. If you think things are difficult now.....

But seriously, I'm wishing the best for you that things get resolved and you get on the fast track to full and speedy recovery.

Susan Smith, a very grateful HVP posted a note for Carol that says: Carol, glad they have a name for it, even if I can't pronounce it. Sounds like there is a solution for you and that is great. Will keep you in prayer as the heart monitor registers what is going on with it. Do keep us in the know and have a blessed Thanksgiving. We all have much to be thankful for.

Priscilla posted a note for Carol that says: Wow, Carol! Supraventricular Tachycardia Try saying that three times fast!! Let's hope they have the diagnosis right! It's why medicine is a "practice." Sometimes it's impossible to know until they've tried a few things. Hopefully this monitor doesn't mess up holiday plans, and that it doesn't create more stress! Am curious - hope you haven't gone back into the office. My thoughts & prayers continue to be with you kiddo.

Jim Jones posted a note for Carol that says: Carol
Thank you for the progress report. I am glad you have gotten relief from your symptoms. I hope the 21 day monitor and your heart healing get you to the point of a completely heathy heart without the need for meds. Happy thanksgiving, Carol!

Linda posted a note for Carol that says: Carol,
You are in my heart and prayers for a speedy diagnosis and recovery. Rick said that you are in his prayers also; he knows what you are going through. My friend Tom had this same diagnosis several years ago; stayed in the hospital until they could regulate his meds (his blood pressure would drop with the initial dose until they adjusted it). However, Tom went off the meds within three months with no adverse effects. His Mom had a pacemaker for 25 years and lived to be 96. There is hope; God will carry you through this ... he will find a way where there seems to be no way. In the meantime allow God and the doctors to work their stuff.

Lots of love and hugs to you and your family.

Ernie A.S. posted a note for Carol that says: Alright woman! Don't make me come over there. You start getting better quickly or you're going to start pissing me off. Don't make me angry; you wouldn't like me when I'm angry!


Get to feeling better soon.

Jim Jones posted a note for Carol that says: Hey Carol
I am thinking of you today. I hope that you are making progress today and are feeling better. Best.

Susan Smith, Sharing and Caring posted a note for Carol that says: Now that you are finally in at Brigham I hope and pray they can get things under control for you. Hang in there and let them do their magic. You will be fine as you are in good hands.

Jim Jones posted a note for Carol that says: Carol
So glad you are finally at the Brigham. I hope they will be able to diagnose and treat you quickly so that you can get back on home. Thinking of you. All the best.

Priscilla posted a note for Carol that says: Good morning, Carol,
I hope you slept reasonably well last night. Am wondering what is going on, if you were indeed transferred to BWH, if they've figured out the problem, and what they say is the prognosis. You are on my mind and in my prayers.
Take care my friend.

Dan Sinclair posted a note for Carol that says: Carol,
Seems we are on a journey not a quick trip. Hope you are back home soon and continuing on the healing portion, rather than the what the hell is going on now portion.
My best friend of 42 years,was born in Attleboro, and still has a lot of family there. His mother is of Portuguese descent but married, their name is Mullaney. I will have to find out his mothers maiden name. It is a small world and I bet you know some of the family. Take Care.

Priscilla posted a note for Carol that says: Good morning, Carol. Hope you got some rest last night. I emailed Ben to get his medical opinion, and here it is (keep in mind he is not a cardiologist):
Hard to tell if the dysrhythmia she's having is from the surgery or the chronic mitral valve issues that required the surgery to begin with. Basically one area of her heart is generating "beat" signals early and very fast and those are being conducted to the main muscle chambers (the ventricles). The medicine is being used to slow down this abnormal conduction, but the better long-term fix is to zap those abnormal cells directly so they don't produce any early beat signals.

Linda posted a note for Carol that says: Carol,

I just spoke with Rick Smith ... he has another form of tachycardia and would like to speak with you at some point in time about his experience. He also said that he will ask his heart doctor about the form of tachycardia that you have. AND he will keep you in his prayers.

Lisa kahn posted a note for Carol that says: Hi Carol,

Wow, I am praying for you... you are in the best of hands. Positive thoughts!

Linda posted a note for Carol that says: Carol,

I didn't hear about your heart episode until late yesterday afternoon. I wanted you to know that I am still keeping you in my prayers. Everything is in God's hands; trust in him and he will find a way and be with you through it all.

Deb Ziegler posted a note for Carol that says: Hi Carol,

Sorry to hear you are having problems. I also had bad palpitations and some Afib that started about two months after surgery. After many months of very irregular heart beats and monitors, I was told they were not dangerous and I should try to live with them. They drove me nuts, and I felt like crap for a whole year. I finally found a new cardiologist and he put me on a beta blocker that helped tremendously. They considered doing an ablation for me, but I was told they don't always work ( at least not for what I had.....lots of skipped and extra atrial beats) so be sure to ask about outcomes and side affects. I am happy to say that after a year on the beta blocker, my heart beats pretty normal most all the time, and I feel good.
Good luck and God Bless,

Carol Jackson posted a note for Carol that says: Carol,
Oh my! Sorry to hear that you are back in the hospital. I hope they find a room for you. . I'm sure they will find out what to do, hopefully with meds. I will keep you in my prayers.

I just followed up with my new cardiologist yesterday for my 6 week check and he said I was doing great but wanted some blood work done to rule out anemia so I will have that checked tomorrow. I am still doing a lot of sleeping- 8 hrs at night and a short nap in the afternoon.

Pam & Neal posted a note for Carol that says: Carol, So sorry to hear you are going through this but you are in good hands. They will take good care of you. We are sending prayers your way. Keep us posted, your neighbors,

Priscilla posted a note for Carol that says: Holy Moly Carol!!!! Just read this b4 turning out the light tonight (Wed). I'm so sorry to hear of your set-back. I will pray for you. And will ask others to send up some prayers also. You rest and get better. Your family needs you!!!!! We all need you!!! Cuz we love you!!!

Jim Jones posted a note for Carol that says: Sorry, Carol. I mis-read your post. I hope you get to the Brigham quickly and get this solved. Best.

Jim Jones posted a note for Carol that says: Carol
So sorry this has come up. I have nothing for you but I am glad you are at the Brigham. I hope they can diagnose and solve this for you quickly. My thoughts are with you. Please keep us up to date as you are able. All the best, my friend.

Rebecca a posted a note for Carol that says: Carol, I work in a pediatric cath lab. An electrophysiologist can diagnose for you via a cardiac cath and can ablate during the same procedure. Often it's done under sedation. We do them all the time for kids.
Take care if you.

Aubrey Elmo Jones posted a note for Carol that says: Great progress Carol. Take the first work week easy as you can. You got this but still, slow and steady increases work the best. Really glad to see you doing so well.

Pam posted a note for Carol that says: WOW, back to work already, make sure you take it slow. You, of course, look wonderful in the cruise pictures. I can't wait to hear all about Bermuda. I'm so glad you had a wonderful, restful vacation. Family bonding time is always the best too.

Lynn Ennis posted a note for Carol that says: Way to go Carol! You are very determined and you did it. I bet the cruise put some emotional,distance between the surgery and now- that's great!

I go in for my aortic valve change on Thursday 11/7. So excited to finally get it over with!

Start slow at work- you just got back home! best,

Jim Jones posted a note for Carol that says: Carol
Your photos look wonderful! And Howie is spot on! So glad you had a great cruise. Sounds like it was just what the doctor ordered. Back to work so soon? You really are doing well. All the best as you get back to work. Now, please don't overdo it. ( that is the same thing you would tell me, I suspect!). Enjoy your new health! Best.

Priscilla posted a note for Carol that says: So glad you had a great time on the cruise. Too bad you gotta go back to work in the a.m.!!!!

You look fabulous in the cruise pictures!!! But then again, you always look fabulous!!!

Have a good week and don't overdue at work!!!!!!!!

Aubrey posted a note for Carol that says: Way to go Carol. Keep it up and keep posting.

Linda posted a note for Carol that says: GREAT!!! With the help of God and your own perseverance you will be whole and well again very soon!!! Have a wonderful cruise ... I just got home from my timeshare week and will be back to work on Monday. I look forward to seeing you since I didn't get a chance to share in the hugs when you came to CAAS.

Pam L. posted a note for Carol that says: I am not one bit surprised. You are a fighter, keep up the good work. Have a wonderful time on your cruise.

Love,

Aubrey posted a note for Carol that says: Excellent progress. Keep going and even though you feel good, there is still. Progress to be made and healing will continue. Keep posting so we can celebrate your successes.

Ernie A.S. posted a note for Carol that says: Go Carol, go!!!

Rebecca S posted a note for Carol that says: Yay, Carol. You are doing really well. Have a great time on your cruise!

debbiej posted a note for Carol that says: Glad to hear you are doing so well. I wish I was but soon I am sure. Have fun on the cruise

Jim Jones posted a note for Carol that says: Carol:

If the Red Sox do as well as you they will win the World Series! Delighted to read how well you are doing. I sure agree with top hospital/top surgeon advice. Now, don't you deserve some new clothes for your cruise???! Have a great week. Go Sox! Best.

debbiej posted a note for Carol that says: sounds like you are doing awesome. I am not and not sure why. I am still in a lot of pain. All the pain you say, so I still take the pain pills here and there. I was sent home with in house nursing care every other day and something they hooked up to my computer that takes all my vitals and sends them in every morning. I am just having a tough time getting my strength back.

Lynn Ennis posted a note for Carol that says: Sounds good Carol! You are doing super well!

Linda posted a note for Carol that says: Carol,
Don't be discouraged by this setback; healing takes time ... God is still taking care of you. AND you are still in my prayers. I'm leaving for my timeshare in NH on Friday but will continue to pray for you and your family.

jeff o posted a note for Carol that says: Carol, great to hear you're doing well. At about 2 weeks my family started taking me for walks, though I think they were shopping. Walking was liberating, it was good to gain a bit of independence. Keep moving forward.

Igor: No, it's pronounced "eye-gor."
Dr. Frederick Frankenstein: But they told me it was "ee-gor."
Igor: Well, they were wrong then, weren't they?