Marjorie's Journal

Bonnie Stone-Hope  Hello Marjorie.
Following my mitral valve repair, no blood thinners.
After the second OHS, mitral valve replacement with tissue valve, I was started on Eliquis because of A fib, hence the “risk of stroke” and must stay on it indefinitely.
Best wishes, Bonnie

Rose Madura  I was on Eliquis for just about a week when I had my Afib attack. But took me off of it to have my second surgery for pericardial window. Then, they never put me back on it. I believe it helps to prevent strokes when you have afib.

Susan Lynn  Marjorie - Throughout my life I've been at the low end or below normal in my platelet count and that was without medication. You may find that increasing foods with vitamin k is all you need to get back to the normal range. I was surprised after OHS, how sensitive my INR was based on my diet. I ate a bunch of blackberries and threw the number way off! Don't panic - your physician will get to the bottom of it. All the best to you! ❤

MARIE PICUN  My patelets count also goes up and down. I check out on Google what foods will raise my platelet ups. Started to eat the foods and my platelet count went up.

Marjorie Murphy  Thank you for your comments. Now the hematologist wants me to have an ultra sound of my spleen and liver. I am freaking out. My white and red blood counts are normal. Not elevated at all. Liver functions are also normal. Is he just being overly cautious. What was number. Was your low platelet count?
Thanks again

Susan Lynn  I can't help you with your question, but I hope one of our heart warriors can. Wishing you all the best, Marjorie!

Sommer Russell  I could feel my PAC's in the beginning. They felt very different from the PVC. I remember reading up on the PAC's and came across an article saying the PAC's are so common that almost 99% of people have them and could be thought of as a variant of being normal. I don't really feel PAC's much anymore, but I still have PVC's. I have them during cardiac rehab, but I don't feel it- I just saw it on the EKG print outs. I do feel them at night. Mine pass so very quickly- in like 5-10 seconds. They are common for everyone, not just us cardiac patients. My cardiologist had me to cut out alcohol, dark chocolate, and caffeine (basically any kind of stimulant). I could tell my PAC's went away almost immediately, but the PVC's are still sticking around. It is scary!

Marie Myers  I had frequent arrythmias for many months after surgery.. The highest number of them occured in the first several weeks postop. Luckily, the episodes were short-lived, each lasting less than 15minutes. They gradually decreased in frequency, and now I feel them only occasionally. Hopefully yours will decrease in frequency, also.

Marjorie Murphy  Thank you for your comments. I am going to eliminate my glass of wine/beer and coffee. Hope that will help!!!

Joey Hardee  Hey Marjorie. I haven't had surgery yet but I am a PVC machine. No PAC's, or at least none that I feel. I think my aortic regurgitation is at least partly responsible for the PVC's I have. I was hopeful a valve that opens and closes properly would reduce or eliminate the PVC's but I guess you don't know until you try. :-)

Catie B  Unfortunately, yes. Esp. PACs. And because I had post-op afib for awhile, I kept having to be sure the palpitations were innocuous. Things gratefully calmed down. Also, several non-cardiac meds cause me loads of palpitations, so I stay away from them.

Marjorie Murphy  I have eliminated caffeine a nd alcohol. Hope this helps. Reduced my metoprolol to 12.5 mg at night about 2 weeks ago was taking 25mg twice a day which made BP extremely low along with heart rate. Maybe it's taking system awhile to adjust. Also was told to drink a lot of water.

Civita Fahey  I started having PVCs at about 8 months post op. I had a Holter monitor and it showed over 20,000 in a day which I never felt. But, I was put back on Metropolol 25mg and its seems to be taking care of them. I only feel them when I'm stressed out.. it seems to be a trigger for me and I also have eliminated caffeine and I don't drink alcohol. So, I guess they are normal, though we don't want too many.. my lask EKG had none!

Marjorie Murphy  Civita
Is the metoprolol you are taking metoprolol tartrate or metoprolo ER succiinare? Do you take 1 25mg a day. Or spit it and take it twice. Is your BP and heart rate normal! I am thinking I might need to up my dose to the 25 mg a day. Currently I don't feel as good as I did! Thanks

Civita Fahey  I take the 25 mg. ER succinate, once at night.. My BP is normal and so is my HR. it ranges in the mid 50s to low 60s.. except on exercise, which it goes to around 110.. never really goes much higher. I saw an electrophysiologist also.. she was really good about explaining the PVS issue etc..she is the one that re- started the Metropolol.

Marie Myers  I stayed on metoprolol tartrate 12.5 mg twice a day since my surgery. My resting heart rate is 52-58, and will go up to the high 70’s if I am on the treadmill . I cut the 25mg tabs in half, which is only easy because I am so nearsighted. I feel a rare pvc/pac every now and then.

Mike Roskowinski  Hello Marjorie. I would talk to your cardiologist about the Beta Blockers. They put me on them but my resting heart rate was in the upper 40's and when sleeping I was down to the low 40's upper 30's. I have a naturally low heart rate so they just moved me to a blood pressure medicine which helped a lot.

Marjorie Murphy  Thank you. I have an appointment in a week. My HR dropped to 30 yesterday. Still feel fine. Crazy.

leslie terjesen  Yes I would check on the beta blockers. I took one Tenormin from my 30's to s few years ago(68 now). Think my body got used to them and my cardiologist switched me to Bystolc which worked great. I had my aortic valve replaced on 2/19, came home on metapropel but my cardiologist switched mr back to Bystolic, for now twice a day, each 5mg as my heart rate was over 100 although my b/p perfect. I saw my cardiologist down here the other day and he's hoping I'll get back to one a day. I have been wearing my Fitbit and my heart rate is actually in the 70s so guess it is working or everything is just healing wonderfully. My occupational therapist and I went walking yesterday and it was great to be out walking. Not out of breath or anything but then I was also totally asymptomatic before the surgery with critical stenosis. As Adam says, go to a doctor who does this all the time and a hospital that does this all the time. Wise words which I am borrowing these days.

Dan Vechiola  I am on Metropolol and my heart rate is lower as well. Its at 60 as I am typing this after drinking 2 mugs of coffee.

Marie Myers  The Holter monitor should give you some answers. Until then, try not to dwell on the negative. Easier said then done, I know...

Marie Myers  Yes, I had/have sleeping issues. Just can't seem to sleep through the night unless I take a temazepam 15 mg. I limit myself to 2-3 times a week, on the night before I am going to work. Otherwise, I rarely sleep more than 6 hours unless I am physically exhausted.
If I have a long exhausting day at work or I played tennis that day, I can usually sleep well. Otherwise, I tend to wake up after 2-3 hours, and will eventually fall back asleep. I usually listen to calming videos on UTube at night if I can't sleep. Hope you find some answers! Ativan works well, but that family of Meds (benzodiazepines) can be addicting.

Dan Baltazor  I was prescribed amiodarone 1 week prior to my surgery to prevent afib. I never did experience afib, so I assume that preventative measure worked. I did not continue the drug after I was discharged. I think you have to be gradually dosed down to discontinue the drug. I'm sorry I'm not much help, but I completely understand your concerns with the drug. Hopefully they can start to take you off of it soon.

Barbara Wood  Hi Marjorie, I was on amiodorone for about 5 months after mitral valve repair. I had had several afib episodes prior to surgery & another about 2 weeks after. I was also on 12.5 mg metoprolol. I was taken off the amiodorone after going 5 months with no afib & wearing a 24 hour holter monitor. It is a powerful drug & you are right to be concerned - my thyroid levels & lung function were monitored while I was on it. I don't remember any particular side effects, but definitely felt better once I was off it. I think I was taken off cold turkey, it remains in your system for months afterwards, but I'm not sure about that. Definitely do talk to your doc about it. Best recovery wishes to you!

Marjorie Murphy  My cardiologist will be taking me off amiodarone cold turkey the first of January. I can't wait. He said it stays in your system at least 52 days after you quit taking it. Currently I am still having trouble going to sleep. My brain will not shut down. And then the anxiety starts. PPC has me on Ativan. Don't want to medicate myself. Any suggestions???

John Lant  I had an A-Fib event almost 8 weeks out from my surgery, but thankfully they gave me some meds at the ER and brought my heart rhythm back to normal. I am now 4 months post surgey and I feel great. Your PTSD or panic attacks will subside as you feel yourself getting stronger and your doing more activities. I would recommend to you to go to cardiac rehab, this will help you rebuild your strength and get you motivated again. Wishing you all the best on your recovery.

Rita Savelis  I hear you. Insomnia is common after OHS. And PTSD can occur as well, especially for someone like you who has had multiple surgeries. I feel for you. It's hard. I would take meds to sleep for now, because your body needs the rest. I normally try to avoid meds, but my doctor convinced me that my body needed sleep after OHS so I took them every few days. Do what you have to do to sleep, take naps, go on the sofa, whatever works for you. Metrapolol made me feel pretty low energy. I encourage you to see a therapist to talk about PTSD and anxiety. You've been through a lot and it helped me to be able to talk about it with an outside person. Take care.

Susan Lynn  Marjorie - Congratulations on your 7 week anniversary! I haven't slept well for amount 20 years, so I actually slept a little better after OHS since I was so exhausted and also on metoprolol. I had a huge sense of relief that surgery was in the rear view mirror, but if you're not feeling that way, I agree with Rita that you could probably benefit from addressing the ptsd. I also recommend going to cardiac rehab. I met such fantastic people there and it reminded me that we're not alone in this journey. The exercise will also build your endurance, confidence, and may even improve your sleep. All the best to you.

Marjorie Murphy  Thank You everyone for your comments. I am starting cardiac rehab tomorrow. I know this too will pass!

Marie Myers  I did not sleep well at all while in the hospital. And yes, I had a couple of times when I felt panic/anxiety during my stay. One time was during the removal of the neck line, and I had to lay flat for a while. Another time was during the night when I could not sleep. No fun at all...Hoping things will be better at home- I am sure they will.

Nancy Luth  Marjorie, I am so glad you were released but so sorry about the panic attacks. Will the Drs. let you take Valium or some other anti anxiety drug?

Rita Savelis  You made it through a physical ordeal and now you are experiencing the emotions of all you went through. I am sorry that you have to go through this. Post anxiety is as normal as pre anxiety. Sleeping can be very hard after OHS and then it's easy to have anxiety. I encourage you to take meds to help you sleep to give your body and mind the rest they need. I don't normally take sleep meds but was encouraged by doctors after OHS to do so if i had spent too many sleepless nights. Take care.

Dan Vechiola  Marching right with you all! Visualizing our successful surgeries and uneventful hospital stays for us all and thinking about us on the recovery side next week at this time. Lets go!!

Paul Kurf  Marjorie, prayers and all the best to you! I am just under 6 weeks out after my AVR+double CABG and am still doing incredibly well. Had very little pain and feel markedly better, though still prone to getting tired, easily. Just take things as they come along and trust in your medical team--they really are there for you as are we. We look forward to your posting good news about your procedure and recovery!

Sue Tom  Marjorie, I am right behind you and Dan by 1 and 1/2 weeks with surgery on 9/18. We can all do this!

Jennifer McInerney  God bless everyone heading to surgery in the near future. Praying that you have successful surgeries and speedy recoveries

Jennifer John  Marjorie, it’s funny what we do to fill our minds. I reorganized my files, cleaned out every closet and drawer! I had OHS via sternotomy in 2001, then MV repair via thoracotomy on 5/31. Scar tissue was a factor in how my surgeon approached this second surgery. See my journal posts for more insight. Keep the faith — and trust the science.❤️

Marjorie Murphy  Thanks Jennifer, I am going to talk to my surgeon. Even if I have had a previous sternotomy they can do the thoracotomy? I am having to have two valves replaced. Aortic and Mitral I guess I need to quit trying to be in control and let God and the surgeon handle this.

MARIE PICUN  I have been in the waiting room two years. Some of our warriors left letters in there drawers just in case. Every one of them made it. We all go through our emotions some more then others.

Jennifer McInerney  Oh my goodness, the things that come to mind as we go through this process. I started thinking about my funeral and getting it arranged, just in case. Hopefully the plan won’t be needed. I never thought about family birthdays. That is now added to my list. It’s all too much. I think I need a glass of wine!

Dan Vechiola  Distract Distract Distract! When my mind goes there I distract my mind and think of the 1% fatality rate. I would be all day on those odds. Also if my mind goes there during the day I go for a walk with someone or loud headphones, If I wake up in the middle of the night (usually when my mind goes there) I turn on my tune in radio app and listen to a station or podcast I enjoy. I am trying to stay busy to distract my mind. Also, I think of what EVERYONE on here says that the waiting is the hardest part. What we are feeling just prior to surgery is normal but we got this!

Marjorie Murphy  Thank you everyone!! I would be completely freaked out if I didn't have this website. You are all such a blessing. It is so helpful to know that I am not the only one having these horrible feelings. As I have said before. Do not worry about tomorrow. God is already there.

Robert Bach  I remodeled my condo before I had mitral valve surgery a month ago. My reasoning was that I'd be spending more time at home during recovery, but the main reason was that I needed something to keep my mind occupied. Condo turned out well and so did my surgery. I know your surgery will, too.

Dan Vechiola  No symptoms have to be better than having symptoms. This will help you in recovery. Keep on keeping on and distract your mind with positive thoughts. We will do this!

Marjorie Murphy  Thanks Dan Wow Now I see my picture in upcoming surgeries. I want this done and over with. 'Don't fret or worry. Instead of worrying, pray...Before you know it a sense of God's wholeness everything coming together will come and settle you down'. I AM TRYING!!

Dan Vechiola  Yep its crazy to see our pictures there. We will be on the recovery side of things before you know it. Everybody seems to say that the waiting is the hardest part. I am just going to try to keep myself busy. I have something going on the next 5 days then boom it is Labor day and then hopefully get a sense of calm as others say as well. We got this!

Anna Jones  Hi Marjorie Murphy. I think most everyone feels the same way as you are feeling. So, you are in good company. I'm so sorry you are having to go through this a second time. Try to keep in mind that heart surgery has really advanced within the last 13 years since you had your first surgery, you are going back to a top hospital. Around 5% of valve repairs need to be re-done within 20 years, so there is ample evidence that even with 2 replacement valves you will be just fine. Sending best wishes and prayers for an easy surgery and gentle recovery.

Susan Lynn  Marjorie - I suspect we all lost it at least once before surgery - some of us more than once! It sounds like you have a fantastic husband and so many adventures ahead. While it isn't easy to face surgery when you feel well, you have time to prepare emotionally. You'll be ready when your surgery date arrives and we'll be here with you every step of the way! Keep thinking those positive thoughts!

MARIE PICUN  I am 64 and I had coritation of the aorta;43 years ago. Now I am looking at my Aortic valve surgery. Going for a Cath test on Monday. The surgeon will look at my test and let me know. Scared of the Cath test. Last time I try pulling my arm out. They say things are different now. Hope so. May God put his hand on all of us in this room

Dan Vechiola  I can share your feeling. I am asymptomatic as well and I wake up in the morning shaking my head realizing that this is all happening. When I question things I look into the my wife and daughters' eyes and feel stronger and like I am doing the right thing. We have to get it before it gets us. I am set for September 6th so I can relate to that feeling as well. I have been trying my best to think positive and visualizing a successful surgery. We are all in this together and there really is strength in numbers!

Marjorie Murphy  Yes. My daughters paid me a visit Sunday. We talk a lot and I kinda opened up. Kelp visualizing a successful surgery and recovery. I will be praying for you all

Marjorie Murphy  Marie.
I have a catch scheduled for September 6. I have never had one. Or if I did it was during my last surgery when I was out. Really don't know what to expect

Anna Jones  Marjorie Murphy, the heart catherization is really easy and painless. You will have a chest X-ray. You will have a blood test. Then you will be wheeled down to the cath lab. The cath lab is really cold. You will be placed on a table. Usually the table is warmed in some manner so that it feels nice. You will be given an injection to make you relax and to be in a twilight awareness. You will not have too many memories because of this medication. You will be shaved. Then you will feel a little prick either in your wrist or your groin. You will feel warmth as the dye spreads through your body. You can watch the monitor to see what the interventionist is seeing or you can do like I do and close your eyes. In what feels like minutes you will be told it is all over. You will be placed back on the bed and wheeled back into the waiting area where you will lie for a few hours. There will be a bandage on you. The next day you can take the bandage off.

Try to remember to ask to have your cath burned to CD and given to you before you leave. Keep the CD for your records.

Susan Lynn  It definitely gets real after you have the date, but that means you're closer to putting it in the rear view mirror. You're a pro, since you've done this before, and you will get through this round, too. Enjoy your vacation.
Marjorie- you'll be just fine! 💖

Marjorie Murphy  Thank you Susan for the response. I need to quit getting on the internet and checking mortality rates for re-operation.

Susan Lynn  I was a research junkie after my diagnosis! I know what you're going through. Be careful not to take this stuff out of context. Since people and their medical situations are all unique, it's difficult to draw definitive conclusions with aggregated statistics. There's only one YOU and you're going to be great!

Willie Radl  You're in good hands at Mayo I just had my Aortic valve replaced there in April. Everything went extremely smooth and care was exceptional. I was very happy with my outcome and experience.

Kelly Stoll  There is always risks and it is always a little scary, no matter how many times you go through it I'm sure. Plus no one likes pain. Having been through it you know the advantage and disadvantages (like pain) all the better. Hang in there and continue to fight. Hoping things go well for you and you heal well.

Rose Madura  I think it's normal to be scared. The odds are in your favor. I wish you a successful surgery and uneventful recovery.

John Lant  You will do just fine after the surgery and your recovery will be great. But if I may ask you a question about your Mytral Valve, have you researched a surgeon who can also repair your Mytral Valve instead of replacing it. My first surgeon said he has only a 60% chance of repairing my Mytral Valve. That I kind of frowned on and I then sought a second opinion with Dr. Adams who told me he can almost garrantee my mytral valve can be repaired. I went with Dr. Adams and I am glad I did.

Marjorie Murphy  Actually my valve was repaired 13 years ago. It is doubtful that it can be repaired again as there is calcification. Bummer!

Barbara Blackwell  Hi Marjorie! Feeling many of the same thoughts that you've expressed. I too had my MV repaired 18 years ago at the Cleveland Heart Clinic. I now live in England (3 yrs) and am staring a replacement surgery straight in the face. No surgery date yet , and try to educate myself as much as possible without scaring myself too much! Will keep an eye out for any updates from you and wish you all the very best. Hugs.

Anna Jones  Hi Marjorie, welcome to the group.

I've read a million times that if you have a mitral valve repair it will last your lifetime and if you get a valve replacement there is a high certainty that you will need surgery again in XX years.

But I asked my surgeon if he would be able to repair my mitral valve and how durable the repair would be. I was really shocked when he replied that 95% of patients don't need surgery again for 10 years and a similar amount are good for 20 years, but 5% will need surgery again in that time. In point of fact, I didn't believe him and thought he had a really sick sense of humor!

But I looked it up on the Internet and saw the same statistic. So, I'm not surprised that you have regurgitation or after 13 years you may need surgery again.

At any rate, don't jump your fences. I'm hopeful that you will be given good news at the Mayo Clinic. The surgery has advanced a lot in the last decade, and TAVR is becoming an option too.

Sending best wishes. Please keep us posted.

Susan Lynn  Marjorie - welcome to the group. I was told my MV repair was for my lifetime - was 57 when i had it done.

Is it possible to repair a repair? Maybe you won't need two valves replaced. I think there have been many medical advances since your last procedure. You're certainly going to one of the best facilities. Don't worry, they'll take good care of you. Best of luck!

Debbie Chatzky  Hi Marjorie! I had my mitral valve repaired with a ring 21 years ago. From very early on it started having stenosis. Now it is severely stenotic and regurgitating. Also my atrium became severely enlarged and I get adobe from time to time. I was also told the repair would be for life. But on May 31st I will have a second surgery to replace the valve.

Petey Bello  Good luck to you Marjorie. I had my mitral valve repaired with the sorin ring at age 56. My surgeon told me it would last a lifetime & my one cardiologist told me it would probably need to be repaired again in my 70's and yet another told me it would last a lifetime...so I'm not sure they really know and all our bodies handle things differently. I'm only two years out from my surgery so I guess time will tell. The one positive I felt was the advancement of modern medicine. It sounds as though you are in good hands, hang in there!