Autumn's Journal

Terrie Syvertsen  Autumn- Sorry to read about your sternum issues as I had never heard this happening until now. It is important information and good of you to take the time ... Read more

Terrie Syvertsen  Autumn- Sorry to read about your sternum issues as I had never heard this happening until now. It is important information and good of you to take the time to pass it on to our community. I wish you success with the
surgery and wish you a smooth healing process. This can't be easy for you and appreciate your thoughtful attitude. Take care...

Cathleen DeWitt  Sounds like zero fun. Since they won't be breaking (sawing) any bones or cutting muscle you shouldn't experience the swelling etc as we do with OHS. Sorry this ... Read more

Cathleen DeWitt  Sounds like zero fun. Since they won't be breaking (sawing) any bones or cutting muscle you shouldn't experience the swelling etc as we do with OHS. Sorry this happened 🙁. One thing to consider is to ask them to excise the old scar if possible rather than cutting through and resuturing old scar tissue. With my re-do OHS's the cardiac surgeons at Cedars Sinai had a plastic surgeon come in and do that part. Good luck!

Catie B  Oh, that is disappointing! I can well imagine that in your profession, this may have to be fixed. And it sounds like something that shouldn't be left hanging ... Read more

Catie B  Oh, that is disappointing! I can well imagine that in your profession, this may have to be fixed. And it sounds like something that shouldn't be left hanging fire anyway. But this is new to me. Like Stephanie, I didn't realize such a thing could happen. I hope you get good answers about the condition and treatment.

Autumn Griffin  Thank you all for your help . Apparently, it is pretty rare I think he said it happens in 4% of patients. I just found out that my position at work has been ... Read more

Autumn Griffin  Thank you all for your help . Apparently, it is pretty rare I think he said it happens in 4% of patients. I just found out that my position at work has been eliminated. So I guess I need to get this surgery done because I will probably not find a job where I don't have to lift anything. I will see my surgeon next Thursday for further consultation. I only have insurance until the end of the month. I guess I will find out the details at that time. I do think he is breaking the lower half of my sternum to repair it because it did not heal correctly. However, they put in brackets so I think it will be more stable and less painful.

susan kotansky  You are working 40 hours a week and had surgery in March??? Of course you're tired and definitely still in recovery. My surgery was 10 months ago and I didn't ... Read more

susan kotansky  You are working 40 hours a week and had surgery in March??? Of course you're tired and definitely still in recovery. My surgery was 10 months ago and I didn't start to really feel somewhat back to "normal" for 5 months or so. Give yourself time. I've often heard that it takes a full year to recover, of course in increments. I think it is also normal to be eager to return quickly to an active symptom free life and i'm sure you will. Just be patient with yourself. I wish you the best in your recovery!!!!

Kate Watson  As Susan said, it takes time to really recover, and can be a year for the heart to heal and energy to return. Be kind to yourself, you definitely aren't lazy ... Read more

Kate Watson  As Susan said, it takes time to really recover, and can be a year for the heart to heal and energy to return. Be kind to yourself, you definitely aren't lazy but still recovering. And having an inflammatory condition on top of it can definitely be a fatigue factor too.

Rita Savelis  You are not lazy! 40 hours a week of work is enough! You are amazing. The tiredness lasts a long time for many - for me it was at least a year. I was back ... Read more

Rita Savelis  You are not lazy! 40 hours a week of work is enough! You are amazing. The tiredness lasts a long time for many - for me it was at least a year. I was back at work (part time) after 3 months but that was about all I could do. I spent a lot of time on the sofa. I didn't do anything last summer (my surgery was in April 2015) My doctors told me I would feel tired for a LONG time and I was glad they did. I am always so surprised by patients on this site who appear to be running marathons 2 weeks after surgery. What's that all about? I am 15 months post OHS and still get tired on stairs and on inclines. Sometimes I suddenly get tired for no reason. I just rest, then. Life is not a race.
I hear you on the frustration. It is frustrating. The higher the expectations you put on yourself, the more frustration.
Be easy on yourself.
Take care.

Ron Broadhead  It does take time. I returned to work after 8 weeks, but I'm afraid I wasn't very productive for quite a while. Probably at 5 months my energy really started ... Read more

Ron Broadhead  It does take time. I returned to work after 8 weeks, but I'm afraid I wasn't very productive for quite a while. Probably at 5 months my energy really started to return but didn't max out until about 8 or 9 months. After 9 months I was able to run long distances again (though slowly), but had to take life easier and more slowly and build up my running very, very slowly and methodically starting at 4 months after surgery. Patience is a real virtue on this one. You've been through a lot. Just take it day-by-day and be kind to yourself during the recovery process. Full recovery will eventually come. And its different for all of us.

Alina FH  Hi, Autumn!
Wow! I got tired just reading all your activities! You are way more than 'normal', you are way over-worked, in my opinion. Sure, everyone is different, ... Read more

Alina FH  Hi, Autumn!
Wow! I got tired just reading all your activities! You are way more than 'normal', you are way over-worked, in my opinion. Sure, everyone is different, and I can only speak for me, but ... I had my surgery on February 11 and outside a 30 minute walk around the neighborhood about 2-3 times a week, and going to rehab for an hour in the morning 4 times a week, I did nothing outside the house for a month. Even after that, if I did all you did in one day, I would have to completely rest the next day, I was good for nothing!
I did not go out to eat till 5 weeks from surgery - just worried about colds, etc. and I wanted my immune system to work on healing my surgery first. You have not even hit the one month mark yet!!
My surgeon said, in his words 'this is a loooong recovery, Alina! You've got to be patient!'.
I think smaller bouts of activity for 2-3 hours and then resting will keep you active every day. But it sounds like you did a ton in a very short time with very little rest.
I hope things get easier but really: take some time to rest!!!
Also, if you feel like something might be wrong with your heart, or you're light headed, or cough, or have chest pain more than what you get from surgery, or you're running a fever, etc, do talk wit your doctor. It could be more than just tiredness.
Much health to you and things WILL get easier.

Michael Meyer  Autumn:

Typical recovery based on the data is 6-8 weeks. You may see some folks at 4 weeks. I spent a lot of time napping and like Alina I was not around ... Read more

Michael Meyer  Autumn:

Typical recovery based on the data is 6-8 weeks. You may see some folks at 4 weeks. I spent a lot of time napping and like Alina I was not around people for about 4 weeks to ensure I did not get any illnesses/infections from people. My time was spent walking my Brittany one/more times a day, reading, napping.

I would not have been able to the function at the pace you are discussing. Open heart surgery is major surgery even though we leave the hospital in five days. Takes time for the stamina to come back.

Judith Collins  it takes a lot more time to get over OHS than 3 weeks. Does your husband not realize you had major heart surgery and your body was really traumatized? My ... Read more

Judith Collins  it takes a lot more time to get over OHS than 3 weeks. Does your husband not realize you had major heart surgery and your body was really traumatized? My doctors said it would take 6 months to 1 year to get back to normal. You are not even supposed to drive for 6 weeks!! I volunteer for mended hearts here in Lexington, Ky. and some of the patients are in the hospital 1 to 2 weeks. He needs to understand the heart has to heal form all the trauma and the rest of your body too.
Hope you get rest and feel better soon.

  Hi Autumn, completely normal to feel tired after those activities. I started back to work 6 weeks post op and went to climb up stairs and had to stop and catch ... Read more

  Hi Autumn, completely normal to feel tired after those activities. I started back to work 6 weeks post op and went to climb up stairs and had to stop and catch my breath in between floors which was worse than I was feeling before I had surgery. My cardiologist said that I needed at least 6 months to let my body heal. I am almost 4 months post op and in the last month, I have felt so much better and stronger. Hang in there and let your body tell you what you need.

Wanda Mroz  Wow... I wasnt doing half that at 8 weeks! You had major major surgery! To a major organ... It takes the body a long time to recover from that! You aren't ... Read more

Wanda Mroz  Wow... I wasnt doing half that at 8 weeks! You had major major surgery! To a major organ... It takes the body a long time to recover from that! You aren't considered totally recovered for up to a Year! Give yourself a break... Feeling tired is very normal and will get better over time. Rest and let the body heal.

Terry Shermeister   Hi Autumn, you will feel better after your surgery. I cannot speak to the issue of your symptoms as I did not have any before my surgery. However, you are ... Read more

Terry Shermeister   Hi Autumn, you will feel better after your surgery. I cannot speak to the issue of your symptoms as I did not have any before my surgery. However, you are dealing with a lot of emotional stress thinking about your surgery. It's a constant in your life at this point. You are not making a big deal out of this, and you are the most important one here. Go with your "gut" and call your cardiologist as it can give you peace of mind.

Tammy Pilcher  Autumn, I agree with Terry that you should call your cardiologist because it will probably give you peace of mind. I had been having symptoms for a long time ... Read more

Tammy Pilcher  Autumn, I agree with Terry that you should call your cardiologist because it will probably give you peace of mind. I had been having symptoms for a long time before I found out about my bicuspid aortic valve. It was already critical with an AVA of 0.39cm2. I had all the symptoms you described including extreme fatigue. Since having my valve replaced Oct. 31, 2014, I feel great with no more symptoms. Prayers and best wishes for you, Tammy

Kelly Weisgarber  Hi Autumn. I can relate to your symptoms and to your last post about not thinking straight. I was diagnosed in February with a bicuspid aortic valve and severe ... Read more

Kelly Weisgarber  Hi Autumn. I can relate to your symptoms and to your last post about not thinking straight. I was diagnosed in February with a bicuspid aortic valve and severe regurgitation. I have another echo on Oct 1st at the Cleveland clinic to see where things stand and if it's time for valve repair/replacement. It's hard to think about anything but that looming surgery and I think that's even harder when you're not feeling well. I'm from Massillon (bolivar now) so we are like neighbors. Hope you feel better and you get some answers at your upcoming appointment

Rita Savelis  I definitely had lots of "symptoms" before surgery. Lots of tiredness. That was a sign it was time to do the surgery. To be honest, I still have lots of tiredness ... Read more

Rita Savelis  I definitely had lots of "symptoms" before surgery. Lots of tiredness. That was a sign it was time to do the surgery. To be honest, I still have lots of tiredness but have been told it is normal to take many many months to recover.

Autumn Griffin  I don't really want to have surgery and I don't know if my doctor will say that I need. However, if I do it and I feel better in the long run it would be worth ... Read more

Autumn Griffin  I don't really want to have surgery and I don't know if my doctor will say that I need. However, if I do it and I feel better in the long run it would be worth ever second of the pain from surgery recovery. I am tired of feeling like crap and I am tired of hearing myself complain about it.

Ruth Reshad  Hi Autumn. you posted a message for me about visiting me at the Cleve. Clinic when I'm there after surgery. I am hoping that your Cardiologist is at CC. They ... Read more

Ruth Reshad  Hi Autumn. you posted a message for me about visiting me at the Cleve. Clinic when I'm there after surgery. I am hoping that your Cardiologist is at CC. They have the best record of anywhere in Ohio for heart problems. I don't know if you would really benefit from seeing someone the week of surgery because the first time around I felt pretty out of it and felt I looked like Mrs. Frankenstein. We can talk more about it.

Steven A Husted  hi Autumn yes i felt tired before surgery and short of breath to the point of telling myself i have to get this done even tho i dont want ohs because i am so ... Read more

Steven A Husted  hi Autumn yes i felt tired before surgery and short of breath to the point of telling myself i have to get this done even tho i dont want ohs because i am so scared of it but now it is all done i am one year out and i am doing great best wishes and prayers your heart brother

Wanda Mroz  I had a few symptoms.... More than I realized because now my heart is very quiet. Chest pain was not one of them but each of us is different. Lots of info ... Read more

Wanda Mroz  I had a few symptoms.... More than I realized because now my heart is very quiet. Chest pain was not one of them but each of us is different. Lots of info on this site and good people who've been through it. Please ask questions... We're here to support you.

Elaine Cutri  Yes, I have. Prior to surgery I know my judgement and decision making process was under a lot of stress (the unknown of surgery outcomes). Even for simple things, ... Read more

Elaine Cutri  Yes, I have. Prior to surgery I know my judgement and decision making process was under a lot of stress (the unknown of surgery outcomes). Even for simple things, I had to slow down and go through my mental check list to make sure I was doing something correctly. I focused on just the essentials. Are you doing any meditative or breathing exercises? I found it helpful. Best wishes!

Terrie Syvertsen  Autumn....Nix the Dumb Dumb critique on your brain lady. It isn't you being dumb when your mind isn't concentrating well but I believe a brain that was handed ... Read more

Terrie Syvertsen  Autumn....Nix the Dumb Dumb critique on your brain lady. It isn't you being dumb when your mind isn't concentrating well but I believe a brain that was handed a diagnosis that brought about an overwhelming place in which the brain had to begin the searching of feelings, and rebalance of emotions as the information started to enter your mind. You have a lot of things to sort through but you will do it and if your mind wanders off track because information or questions you have seem to throw you in different directions you have only to flip the switch and you will be back on track and back to thinking clearly. This is a time where your emotions alone take you so many places as you try to sort what this surgery means to and for you. I hope when your mind seems disconnected you let out what things are on your mind so that someone can listen and make things seem less intense. You are going to make it through this so don't hesitate to talk or write about what you are in need of. We are all here to listen and will help you along the way to understand as you become more aware of what lies ahead you can feel good and positive about it and look forward to a positive outcome. I also found working in the garden, taking walks and bicycling daily took my mind off of things and gave me fresh air first thing in the mornings. Keeping a schedule of light exercise depending on any symptoms you are having makes the day go by with other thoughts and images in your mind and lessens the load! I hope that you able to keep moving through each day leading up to your eventual surgery we the main thing being that once you are on the other side of it you can start over in
life with that mended heart of yours! Take care .

Autumn Griffin  You have so much wisdom Terrie. Thank you so much for sharing it. I need to exercise but I have rheumatoid arthritis and a lot of joint pain and with the fatigue. ... Read more

Autumn Griffin  You have so much wisdom Terrie. Thank you so much for sharing it. I need to exercise but I have rheumatoid arthritis and a lot of joint pain and with the fatigue. I feel lucky to make it through my work day. I know exercising will make me feel better but it is easy not to do it when you feel so crappy all the time. Before my rheumatoid arthritis I was a on again of again exerciser. But I was in decent shape . But now don't feel well and use that as an excuse. I can't even keep up with my household chores, or other things I need to do. It is so frustrating!

Terry Shermeister   Hi Autumn: You are going through a lot of thought, stress and worry. There is so much to process it's very common to lose a train of thought and be forgetful. ... Read more

Terry Shermeister   Hi Autumn: You are going through a lot of thought, stress and worry. There is so much to process it's very common to lose a train of thought and be forgetful. This is perfectly normal. Try to stay in the moment and not get ahead of yourself. For many of us who are people persons, it's a challenge to put us first. Stay strong and be gentle with yourself.

  Oh Autumn, I know exactly how you feel. I have autoimmune diseases also with pain and fatigue. The fatigue isn't as easy to push through as some may think. ... Read more

  Oh Autumn, I know exactly how you feel. I have autoimmune diseases also with pain and fatigue. The fatigue isn't as easy to push through as some may think. I also feel lucky when I make it through a day and that usually doesn't always include keeping up with house chores. It's overwhelming. And add stress to that, stress about illness and stress about not keeping up and then the stress causes MORE fatigue. It's difficult. Every morning I wake up and say, TODAY I will walk on my treadmill. But then I don't feel well and there are yesterday's dishes staring at me that didn't get done yet and the pile of laundry that should have been done days ago or maybe even over a week ago. Walk on the treadmill? It ends up not happening once again. But I need to do something. I need to be healthier before I have heart surgery. I need to lose weight. And then those thoughts cause more angst and more fatigue because I feel like I'm letting myself down by NOT exercising. I'm still looking for an answer to how to tackle this. I sometimes think people think I'm just making excuses. I don't even try to explain anymore. It's definitely a struggle that we need to figure a way around. If only I could clear the fog that has settled in my brain. Hang in there Autumn, you're not alone.

Meredith Bray  I called it Mashed Potato Brain. So much to think about, to plan, to do. I made a lot of lists. Drove my coworkers nuts. But if I didn't make lists and set ... Read more

Meredith Bray  I called it Mashed Potato Brain. So much to think about, to plan, to do. I made a lot of lists. Drove my coworkers nuts. But if I didn't make lists and set alarms, I would not have known what to do all day. It gets better!

Terrie Syvertsen  Karen and Autumn- My dear Heart Sisters. I have been where you are in many ways. I understand the both of you want to be healthy when your surgery time is set ... Read more

Terrie Syvertsen  Karen and Autumn- My dear Heart Sisters. I have been where you are in many ways. I understand the both of you want to be healthy when your surgery time is set so that you can enter into your surgeries offering up the best and healthiest you can be. I think the immense energy we go through while getting the diagnosis and tests set up along with other issues we individually are facing makes it difficult to do the exercises it would take to do this whether or not you are in great shape or not. I entered into my surgery overweight and frightened how this would affect my surgery and dwelled on it for months before I went in doing the best I could with my biking and walking but I was nowhere near where I would have liked to have been when surgery arrived. The truth is ladies, there are many things that have to take precedence in your lives that may keep you too from being exactly where you want to be but the most important thing you can do Is not beat yourselves up as the time wasted on belittling yourself prior to surgery will hurt your minds and immune system and you don't need that. Take any time you can first to make sure you eat right, do the jobs you know you have to do and let yourself make sure you are getting enough rest so that each day you wake up you can do what you can and if time permits for a walk or anything else then do it but don't make yourself sick over it, please. There will be time to get back into shape when your surgeries are behind you and you don't have all the stress on your shoulders. Keep your beautiful minds as free of the "clutter talk" inside your head and know that you are two wonderful women who are up to the tasks ahead that will get you to your surgeries and home again.
Spend this important time now patting yourselves on the back for all you are accomplishing everyday to care for yourselves and getting ready for your futures. Sending my love and prayers to you both!

Jean Raber  I can't really add to what anyone else here has said, except ditto. I am first in line to get called whenever my mom has a medical crisis, I have a kid living ... Read more

Jean Raber  I can't really add to what anyone else here has said, except ditto. I am first in line to get called whenever my mom has a medical crisis, I have a kid living at home, my husband is starting that geezer thing where he provides unsolicited commentary during the entire news cast, and I'm trying to keep up with a lot of new innovations in the workplace. All those things are a full plate in themselves. Add the health ailments, and your brain starts going like a ping-pong ball and you feel the urge to just bite people.

barrett burris  Since I was diagnosed w BC aortic valve and aortic aneurysm then told about impending surgery, I've noticed the same w my memory and thought process. Was thinking ... Read more

barrett burris  Since I was diagnosed w BC aortic valve and aortic aneurysm then told about impending surgery, I've noticed the same w my memory and thought process. Was thinking maybe it was due to blood flow to brain-glad to know I'm not the only one. This helps. Thank you.

Terry Shermeister   Autumn I don't want to contradict your husband but knowledge is important. You may or may not need surgery to correct this. I had a Mitral Valve repair in ... Read more

Terry Shermeister   Autumn I don't want to contradict your husband but knowledge is important. You may or may not need surgery to correct this. I had a Mitral Valve repair in May. When I was in your place I perseverated on what "might" be a head. It's important to communicate with your cardiologist. I encourage you to connect with this community. Unless one experiences this condition one cannot relate. For me, I needed to attain as much information as I could. It helped, and it helped sharing with others who were in the same place as I was, with those who had experienced what I might be facing, and with those who could related. Prayers and peaceful thoughts.

Autumn Griffin  Thank you! I think my husband thinks if we don't think or talk about it it will just go away. I just am so worried I will have to have surgery I am trying to ... Read more

Autumn Griffin  Thank you! I think my husband thinks if we don't think or talk about it it will just go away. I just am so worried I will have to have surgery I am trying to read what I can to find out so I can be prepared. I just watched one of Adam's videos about leaky valves and the doctor on there said aortic valves almost always have to be replaced so now I have to think if I have to have something done with it , what valve should I get? I appreciate all the help everyone on here gives me.

John Lyons  I just went through a MVR (mitral valve repair) about 4 weeks back. Like you, since the first doc spotted it 3 years ago I needed information before any appointment. ... Read more

John Lyons  I just went through a MVR (mitral valve repair) about 4 weeks back. Like you, since the first doc spotted it 3 years ago I needed information before any appointment. Knowing your medical terms, conditions, and any questions before any appointment was very helpful.

Knowlege is power.

Jean Raber  I think it's pretty normal to go into warp speed with info gathering when you first learn you might need OHS. You may not need surgery for a period of years, ... Read more

Jean Raber  I think it's pretty normal to go into warp speed with info gathering when you first learn you might need OHS. You may not need surgery for a period of years, and the nerves will settle down eventually as you accept your situation.

You are also learning about how your husband responds to a serious condition, and that's good info to have. Don't try to change him (because it doesn't work), but you'll know what you've got to work with (or work around).

If you don't look or act sick, it may be hard for husbands to wrap their heads around the fact that you have a serious condition.

It's like when you tell them you hear a rattle in the hot water heater. They will insist they don't hear anything or "it always sounds like that" until you drag in a plumber who tunks everything with a pair of pliers, hitches up his pants authoritatively, and and explains that the intake valve connected to the vent gasket has ruptured the hydromembrane and that's creating a vibratory harmonic in the tank shell. Or whatever.

Your husband might also be in overload mode. It might help to go to a movie or go to a concert or watch something on TV or do some other activity that promotes bonding without talking.

Mary K  Dear Autumn, I had a similar experience. People confront stressful situations in different ways. After finding out that I needed OHS, my way was was to become ... Read more

Mary K  Dear Autumn, I had a similar experience. People confront stressful situations in different ways. After finding out that I needed OHS, my way was was to become very emotional, (I must have cried a gallon of tears), reach out to all my friends, and research voraciously. Did I watch open heart surgeries on YouTube? Absolutely. Read about possible complications? Of course.. Read all kinds of scientific papers on aortic valve replacement? Yep. Read all the info on this site as well as all the blog entries? You bet.

I was told that I was making it worse by over focusing on it. I do not believe so. I am ten weeks out, recovering well and grateful to be alive. My suggestion is to do what you need to do, find support where you can.

Looking back on it, some sessions with a psychologist probably would have been helpful. All the best to you, heart sister. Sending hugs.

Nancy D  Autumn- you are in a situation you can't control much. But you can learn about a subject that is now important to you! Knowledge is power and to be able to ... Read more

Nancy D  Autumn- you are in a situation you can't control much. But you can learn about a subject that is now important to you! Knowledge is power and to be able to understand what the doctors are telling you, and ask questions (write them down, I always forget something if I don't- and you will need to ask!) to better understand then you feel a bit less out of control. Scrambling to research replacements and things will add to the stress, allow yourself time to do what you need to do. Take good care of you!! ((HUGS))

Cheryl Batzing  Autumn, I amen what all have said above.. Research & knowledge is so helpful beforehand, and can help you prepare for whatever might happen. We all have blips ... Read more

Cheryl Batzing  Autumn, I amen what all have said above.. Research & knowledge is so helpful beforehand, and can help you prepare for whatever might happen. We all have blips in the road to recovery, but knowing what they might be helps you stay somewhat calm and just know it's normal. I knew for 22 years I'd need mitral valve surgery at some point, and actually had my surgery mid Dec. I had researched alot the final 3 months prior to surgery date, and I was so glad to know what to expect, what to ask for prayer for, etc. I had a dear friend who had emergency valve replacement surgery recently and he had no time to prepare, research. He had a much harder time than I did. If you don't allow yourself to dwell on the negatives, what ifs, etc....but instead pray for peace, I believe you are being very wise!

Steven A Husted  yes i agree with all of the above knowledge is a plus i know after my doctor told me i needed ohs i started my research right away and did not stop till my ... Read more

Steven A Husted  yes i agree with all of the above knowledge is a plus i know after my doctor told me i needed ohs i started my research right away and did not stop till my surgery and adams book and this site were the best information i found and gave me the most comfort

Autumn Griffin  Thank you all so much!! I don't want to be the person who only worries about me, but at the same time I don't want to stick my head in the sand and act like ... Read more

Autumn Griffin  Thank you all so much!! I don't want to be the person who only worries about me, but at the same time I don't want to stick my head in the sand and act like nothing is wrong. I clearly don't feel well and haven't for awhile, didn't know the whole reason why but I do have rheumatoid arthritis so I blamed it for all of my fatigue, my shortness of breath on being out of shape even though it happens doing the stairs at my house which I have done for 21 years. Anyway, I don't want to stick my head in the sand and I need to talk about things so thank you everyone.

Rosemary Resler  Autumn, I've been on this site since I found out I had to have surgery about six weeks ago. I was wondering the same thing, but I think it's natural for some ... Read more

Rosemary Resler  Autumn, I've been on this site since I found out I had to have surgery about six weeks ago. I was wondering the same thing, but I think it's natural for some people to want to know every little detail and dwell on it. How can you not dwell on it, this is huge! I went into a very bad depression after I got my news even though I've been followed for over 15 years on my aortic stenosis, it still came as a shock, I refused to see or talk to anyone and just sat all day dwelling on this. Coming on to this site and reading everyone else's fears and how they've managed through the pre and post surgery journey is a HUGE help to me. Like you, I also have rheumatoid arthritis and when it flares you just feel so wiped out, but I also thought that I was so tired all the time because I'm now retired and being home makes me more tired. Since I know what the issue is now and read everything I can get my hands on about my problems it does help a lot. If this helps you manage keep reading and posting, I personally like to hear what everyone has to say, good or bad.

Rita Savelis  Your husband is experiencing this differently. If you end up having surgery, your experience will be different from his. Neither one of you will be able to ... Read more

Rita Savelis  Your husband is experiencing this differently. If you end up having surgery, your experience will be different from his. Neither one of you will be able to imagine what the other one is going through. Keep that in mind. Don't judge him, just be honest with him about how you feel. I think therapy can help, because there is so much to say and to think through, and partners go through a lot. It's hard to be a partner. As hard as experiencing OHS. But you certainly are doing what you have to do to get through this and I'm sorry it's hard for your partner.

Rodrigo Ponce  So let's not call it "focusing on what's wrong" because there's nothing wrong with you, or any of us for that matter. Call it... knowing how to make it right ... Read more

Rodrigo Ponce  So let's not call it "focusing on what's wrong" because there's nothing wrong with you, or any of us for that matter. Call it... knowing how to make it right because it can.

I think everybody that's here has been afraid at some point. It's a normal human response not only because it's unknown to us, but also because it's our lives we're talking about.

So don't call it "focusing on the wrong". Call it "fighting for you life". I'm sure your husband is just as scared as you are, but most likely he will not say it. Maybe he doesn't even know it.

Terry Shermeister   I know how you are feeling. Be thankful that we now have the capacity to repair/replace these leaky valves. You are young and healthy. You have touched many ... Read more

Terry Shermeister   I know how you are feeling. Be thankful that we now have the capacity to repair/replace these leaky valves. You are young and healthy. You have touched many on this site by your honesty and sincerity. I always thought that by going through this it would make me a stronger and better person. I believe that it has. For me what was helpful was taking charge and advocating for myself. Asking the doctors, nurses, and surgeons what I needed to, and by becoming as knowledgeable a about this as I could. I did get Adam's book. It was helpful. I didn't do this but others have asked their significant others to read the book so they had an understanding of what one goes through physically, emotionally, and mentally. The feedback from those is really on the money. Prayers and healing thoughts.

Autumn Griffin  I don't know how to thank you all for insight and kind words. I was so lucky to find this website and my new friends. It is unbelievable how much it means to ... Read more

Autumn Griffin  I don't know how to thank you all for insight and kind words. I was so lucky to find this website and my new friends. It is unbelievable how much it means to me to get feedback from everyone. You are right I know my husband is silently freaking out. He doesn't like to talk about stuff or admit that things bother him. I am very worried about him because I know if I have to have surgery and he sees me in ICU afterward he will be a hot mess. Anyway, once again thank you all!!

Jean Raber  Autumn, yes, he will be a hot mess, and you may want to tip off the hospital staff or show him some pictures of people post-op.

But part of being able to love ... Read more

Jean Raber  Autumn, yes, he will be a hot mess, and you may want to tip off the hospital staff or show him some pictures of people post-op.

But part of being able to love is to empathize so much that you feel someone else's pain. If he doesn't turn into a hot mess, or at least have his little private "moment" in the family room with the door closed, I'd worry about him more.

I was as prepared as anybody could be after my mothers OHS. I'd worked in hospitals, had seen intubated people with all kinds of drains who were groggy and scared. But after hours of waiting in the family room and actually seeing a family member in that position is a whole other ball game.

Terry Shermeister   I'd rather have a "hot mess" than a cold one! My son saw me with the breathing tube and he had a rough time. Luckily I had many friends, and a wonderful nursing ... Read more

Terry Shermeister   I'd rather have a "hot mess" than a cold one! My son saw me with the breathing tube and he had a rough time. Luckily I had many friends, and a wonderful nursing staff to help. I will tell you the from my heart. If you do have surgery concentrate on YOU!! Your hubby will be fine. Healing thoughts and prayers.

Gloria Savannah-Austin  Autumn- I have had similar response and concern from my own husband. I has not slowed my desire to educate myself and connect here. I felt totally armed today ... Read more

Gloria Savannah-Austin  Autumn- I have had similar response and concern from my own husband. I has not slowed my desire to educate myself and connect here. I felt totally armed today talking to my Cardiologist asking intelligent questions about my vale issues, Ross procedures, etc. It is for me the only way to manage and accept the things going on with my heart. Knowledge is power, you are among friends here. Don't have a clue when my heart surgery will be, but just grateful for this site and the great people here too.

Nancy D  well, I didn't celebrate my 1st anniversary this week like a birthday, but I do think I should! ;-) It is like a second chance at life- a chance I never thought ... Read more

Nancy D  well, I didn't celebrate my 1st anniversary this week like a birthday, but I do think I should! ;-) It is like a second chance at life- a chance I never thought I would need, but need it I did! I plan to acknowledge this annually from here on out! I worked hard to get the progress I have had, and am going to try not to take it for granted! The waiting to get fixed was harder for me than the active participation in my healing! Be well, and take care!!!

Rhonda Rawles  I tried to be all practical and started to put some things in writing before surgery but in the end when it came to trying to write goodbye letters to my family ... Read more

Rhonda Rawles  I tried to be all practical and started to put some things in writing before surgery but in the end when it came to trying to write goodbye letters to my family I just couldn't do it. I felt like that was a good sign and that if I couldn't write them, they wouldn't need them. Hey it worked, here I am!

Mary K  Fatigue is a troubling symptom, but yours is very extreme. Any possibility of an earlier cardiologist appt? Have you thought about letting them know how poorly ... Read more

Mary K  Fatigue is a troubling symptom, but yours is very extreme. Any possibility of an earlier cardiologist appt? Have you thought about letting them know how poorly you are doing? Sometimes they will bump ypu up if they know how symptomatic you are. Maybe ask to be called if they have a cancellation?

Jacqueline Cook  Hi Autumn. I just went through something similar when I moved from Seattle to PA. I have mitral valve prolapse. My cardiologist in Seattle told me that my regurgitation ... Read more

Jacqueline Cook  Hi Autumn. I just went through something similar when I moved from Seattle to PA. I have mitral valve prolapse. My cardiologist in Seattle told me that my regurgitation had progressed from moderate-severe to severe. When I was still under his care and in the moderate-severe range he always said that I need to call him immediately if I have "any" symptoms that might point to a change in my condition. At my last appointment in Seattle, he told me that it was time for surgery. Yet, when I saw a cardiologist here he seemed to feel that there was no need to move too fast. When I told him that I was experiencing bouts of shortness of breath, he said "maybe you are adjusting to PA." To his credit, he did go ahead and schedule me for a stress test and a TEE. BUT he did not want to see me back until October 5. Well, I had the TEE on Wednesday. My regurgitation is indeed severe. I've changed cardiologists. I have an appointment on September 4 and will begin preparations for surgery. All that to say....I, like Mary, am wondering if you can get an earlier appointment?

Steven A Husted  i agree with the above i had similar symptoms shortness of breath and tired and when i went to my cardiolgist he sent me right to the hospital to see my surgion ... Read more

Steven A Husted  i agree with the above i had similar symptoms shortness of breath and tired and when i went to my cardiolgist he sent me right to the hospital to see my surgion and he set me up for my ohs right away i guess there are good and bad doctors some care and some dont i am praying for you your heart brother steve (popeye)

Autumn Griffin  Thank you all. I did just have the echocardiogram about 2 weeks ago. And I do have two valves that are bad- both moderately-severe. However, last night I ... Read more

Autumn Griffin  Thank you all. I did just have the echocardiogram about 2 weeks ago. And I do have two valves that are bad- both moderately-severe. However, last night I had some concerning symptoms-if anyone has had any of these symptoms- when I layer down to sleep last night I had a lot of heart fluttering, feeling like my heart was flipping over. I felt like it took my breath when it did it. I have had this before but it seemed worse last night. Maybe I am just freaking out now because I know something is wrong. My husband thinks it started because I was nervous about it. But I know I didn't get nervous until after it started. It felt better after I propped myself up on pillows.