Amy's Journal

He likes to be the big spoon 💕

My new baby 💕

Hello everyone. Thank you for all of your comments and guestbook messages. I am just back from my trip to Cleveland Clinic. I can't tell you how many emotions hit me the moment I walked into that building for the first time since surgery. It was like a flush of emotions came over me and memories of the first steps into that building on surgery day hit me and how scared I was and everything I went through and where I'm at now just overflowed inside of me. I was caught off guard by the powerful feelings from that.

As far as the testing went, I met with the cardiologist, had numerous blood work tests, and also met with the neurologist. So far all of my tests came back normal and they still cannot determine where a blood clot stemmed from, but they did determine that the stroke was caused by a clot and not the areas in my brain that are now there post surgery. They also cannot determine what caused those brain bleeds. There are numerous scenarios they say could have caused them including being on the bypass machine during surgery… But they said they don't have enough studies on post surgery MRIs to make any conclusions. They did keep reinforcing that the risk of clot is much higher than any risks in my brain right now with the bleeding and I should stay on my aspirin regiment until further notice. So unfortunately I don't have any answers still and no clue how those things got in my brain.... but if everyone is telling me I need to be on aspirin then I am staying on it and hoping for the best.

While I was there my father went into the hospital for a heart cath and it was determined he needs to have triple bypass surgery… So I'm a little bummed that he's going to have to go through an open heart surgery. It's a completely different issue than what I had but its still open heart surgery. His date is next week so I will be heading back next weekend to be with him for a few days. He's not having it at the Cleveland clinic though.

As always, we keep moving forward and living life one day at a time. Since my surgery I have adopted a dog so now I have some company and life is so much better each day! :-) My workouts are nothing like they used to be, but heck my body has been through a lot and now since the stroke I have days where I am full of energy and then the next day completely exhausted, so I am still working through the stroke recovery process. Im so thankful I have recovered from that and just pray it doesn't happen again.

Hi Everyone. Strange news. It's just under 1 year post heart surgery...about 10 months now. I just turned 40 at the end of May, and on Memorial Day I had a stroke. Welcome to my new decade!! Ugh...I'm headed up to the Cleveland Clinic next week to see the cardiac and neurosurgeon teams to figure out what happened.

I did not have a valve replacement but rather a repair. The repair is holding strong and they could find NO traces of a clot anywhere at the emergency room here in VA. I lost my speech for a a few hours and had to stay in the hospital for 3 days. My MRI showed numerous microbleeds all over the place in my brain that were not there before my heart surgery. One rather large one in the exact area of the stroke. My cardiologist here was unconcerned....the neurologist does not know my history as he was just the one on duty the day I was in there. He said he has never seen this in someone as young as me and he would have to research it. I still have not heard back from him. I however am very concerned because I did not have any of these spots before surgery and now have numerous ones in my brain. I did some research and discovered that Aspirin causes these in some people, and the red flags went up because my cardiologist just increased my Aspirin by 4x's because if the stroke and his assumption is it happened because of a clot they never did find. I emailed my surgeon at the Cleveland Clinic and he contacted me within minutes advising me NOT to take the Aspirin and get up there for evaluation ASAP, because it sounds more like a brain hemorrhage caused by the Aspirin. Yay me.....so off to Cleveland next week and hopefully will have a better team of people helping me than I have here and hopefully some answers.

Well it's been quite some time since I updated everyone. It's now been 11 or 12 weeks since surgery and I'm finally feeling almost 100% normal. I just went back to work October 1 which was much longer than I had expected I would be out of work.
I still have a lot of discomfort from nerve damage and muscle being cut from surgery, and still my right lung is not 100% yet, but I'm not wincing in pain constantly just breathing and moving so I'm a happy camper. It seemed like the pain was never going to go away! I went through six weeks of Cardiac Rehab and graduated on early release because everything with my heart and heart rate progressed quickly. I am back to my presurgery cardiac output level and right now just starting to integrate my weight training again although I have to be careful because I have a shoulder issue from the surgery and being immobile on that side for so long. I'm in physical therapy for that now. My resting heart rate is still rather high however I notice it is coming down more than it has been. Overall everyone says I look great and no one including myself can really believe I went through all of that major surgery and recovery. Overall I feel like I have become a changed person from the experience. I can't really put it into words but I'm sure others who have been through heart surgery Can relate. I feel I have become much more patient and laid-back and able to deal with much more than I used to. I guess your mindset changes when you face something like that and make it through the other side. You realize what circumstances are worth stressing about and what circumstances aren't worth it at all. I have found that most everything is not worth it actually. It's a strange kind of peace I have about life now. Anyway, I am so thankful to be on the other side of that and really looking towards the future with a lot more hope.. If I can make it through heart surgery I can make it through anything!! 💪🏻💗

I want to say thank you to everyone on this site who has listened and supported me every step of this journey! From my first days of complete shock and fear to slowly learning this process, and through my good and bad days! I know I post a lot… I have a lot of friends and family all over the place so I post for them mostly and the handful of people on here that comment often. I apologize if it's a lot… You are always free to scroll past me LOL!
I am so thankful to have a place where I can express my feelings through this whether they are good or bad, and also a place where I may be able to help someone else. This site has done wonders for me and I'm so grateful for it! Thank you to Adam for creating this website for all of us, and for his amazing book that helped me learn what I was about to go through! If you haven't gotten Adams book yet I highly recommend you do! Here's to all of us through our good and bad days! 💗💗💗

Hi everyone. I'm looking for information or other experiences of ocular migraines post heart surgery. Almost daily I have migraine auras without pain since heart surgery. Most of the time it's jagged colored wavy lines that vibrate and lasts about 30 minutes. Sometimes it's just seeing stars or dark spots out of nowhere. Ive tried to research this and find that it is common after heart surgery but I'm wondering if there's a resource that can offer information as to why this occurs....what causes it? Will this go on forever? What does it mean? I can't seem to find that info. I'm so thankful there's no pain accompanying this! Just wondering what the correlation is with heart surgery. I mentioned it to my cardiologist and he didn't seem concerned about it.

Well today was day two and while I am moving at a snails pace in there it has still been challenging because I am still having a hard time breathing with this lung thing and that's been causing some irregular heartbeats. Today they actually slowed me down to slower than a snail's pace because my heart was doing some funky things… And even though I barely felt like I was moving, I was having a hard time. I am so thankful to be going there because every second someone is monitoring me and not only is it going to help me progress properly, but it's like finally someone can validate how I've been feeling physically, because everyone says I look good but I definitely haven't been feeling good with this breathing issue and my heart rate and BP shows it on the screens. We still haven't gotten a baseline yet since it's only day two and there were some sporadic irregular beats again, but it feels good to know everything is being monitored and I know I am in good hands. It just feels good to be around people that understand all of this!
I'm making another trip to my doctor tomorrow about this breathing issue and my lung and ribs. Also the migrating pain in my chest and incisisions it flaring up. Probably due to the nerves and muscles repairing I'm assuming. Hope everyone is feeling better each day one step at a time💗💪🏻

Wondering who else had the robotic heart surgery. Seems like most people have had full sternum or different minimally invasive procedures. Who else has had the robotic mitral valve surgery?

Hi everyone. Just hit week 5 and grateful to be feeling better than I have been. Still dealing with the tightness in my rib cage on the right from the pleural effusion. They won't do anything because they say it's "small" but it's still one of the things I feel is holding me back the most. Over the past couple weeks my incision site has gone from numb to nerves awakening and repairing so that's a bit uncomfortable. The incision site in my groin has flattened out a lot more… Still slightly raised but doesn't look like there's a finger under there anymore. Now it's more like one of those straws you use to stir your coffee. Today was my last dosage of the beta blocker and I'm looking forward to seeing how I feel being off of it. Hopefully there's no drastic side effects since I've only weaned for about a week. My newest after effect is joint pain in my right shoulder which I'm sure is normal. I'm trying not to get "frozen shoulder", however it's difficult to know what to do with my arm since all of the muscles and nerves are healing on my right side and I don't want to disrupt the healing process. Cannot stretch that area so my shoulder is getting really stiff and pained. Today is also my first day of Cardiac Rehab. I went for a consultation a few days ago and they said I'm a little bit early but we will take it really slow. The nurse was worried I would overdo it too quickly so we will see how it goes today. I would not miss Cardiac Rehab for anything just to make sure I progress properly.
I hope all of my fellow post surgery friends are progressing and hanging in there. Some people have better experiences than others going through all of this. I was thinking recently about how I went into this with a positive mindset and some fear, and after some trauma in the hospital I came out of this feeling emotionally distraught and traumatized. That caused a whole other healing process I wasn't expecting to have to go through but my point is, I'm finally at a point where I'm starting to feel better and I didn't think that was going to happen. Sometimes reading how great others did makes it hard to relate when your situation was completely different even though it's great to hear that! You might start beating yourself up wondering why your situation couldn't have been like that. I want to encourage others who might be feeling at a loss or negative about their recovery. It will get better!! 💗💗💗

Wondering what everyone's experience has been with the groin incision site after heart/lung bypass machine. I'm in week 4 and the incisions are healed up nicely but it still looks like there's a finger underneath my skin. It's raised up way above the skin and looks and feels really gross. I know everything takes time. Just wondering if everyone's incisions do this and how long it takes to go back to normal.

Saw my Cardiologist today. He was so impressed at the quality of the valve repair by Dr. Gillinov. He could not believe what a great job he did and we compaired before and after echos. It was cool to see the difference. From a severe leak to zero leak! We talked about my effusion, anemia, and other symptoms. He thinks it best I get off the beta blocker because it could be causing a lot of my symptoms as well and because I already have low blood pressure and that makes it even lower so we start weaning off that tomorrow. Seeing the pulmonologist tomorrow. The x-ray I had taken the other day with my PCP shows a "small" pleural effusion, but it sure is annoying and driving me crazy not being able to breathe, so I really hope the doctor has something to offer to relieve me because it is not going away on its own. I'm not sure what is considered small but it's huge to me because it affects everything.

Also spoke to a lady in the waiting room today that had just had her surgery in June. It was neat to compare stories. She had the same procedure I had except she got it done here in Virginia by the surgeon my cardiologist was referring me to here. I didn't choose him because he didn't really specialize in mitral valve repair. She ended up having a full sternum surgery so we were comparing our experiences. Even though I didn't have the best experience in the hospital after surgery at Cleveland Clinic, I'm still glad I went there and had the surgical team I had. Feel pretty lucky.
Looking forward to cardiac rehab next week. 💗💗💗

Met with my primary care physician yesterday. He was concerned about the pleural effusion I still have at week four and ordered a visit to a pulmonologist to check it out. He also kept reiterating how painful a pleural effusion is which makes him the first doctor to justify the extreme pain I have been in for weeks. Post surgery I made two trips to the ER because of pain and was told it was just postop pain. I've had a difficult time breathing and so much pain in my lung and ribs. I am just happy someone finally seems to take me seriously and understand what I've been trying to say. So I will see the pulmonologist this week as well as my cardiologist. We discussed my anemia now that I am anemic since surgery. I've had a lot of other symptoms that seem to be holding me back so we are going to be monitoring that and I will be starting a prescription iron supplement. Some of the symptoms include blacking out when I stand up, inability to take more than three steps without having to stop and feeling out of breath, dizziness, hair loss, seeing stars out of nowhere, and migraine auras in my eyes without the headache. I have come to terms with the fact this is a longer process than I had anticipated. I think some people were trying to make me feel better by telling me I would be fine in three weeks since I was not having a sternum operation… But those are the same people who have never been through a major heart surgery LOL. Overall in the grand scheme of things I have come a long way since the week in the hospital. I'm looking forward to starting cardiac rehab which I think might start next week once I speak to my cardiologist tomorrow. I think if I didn't have the anemia and the pleural effusion I would be further along, but this is where I am right now so I'm dealing with it. I gained over 20 pounds in the hospital in water weight, lost it all before I was discharged and then lost an additional 16 pounds. Most people would love that but mine is mostly my hard-earned muscle so that's a bummer, but again, I am thankful and that just means eventually when I get back into the gym I can start from scratch with my improved heart. 💗 When your life and career is fitness and all of a sudden you don't have that anymore, it's pretty tough, but I know it's just temporary so my mindset has been a lot better. Everyone has been so supportive and kind on this site and in my life. I'm very lucky and thankful for that. 💗💗💗

Back home in VA. Still feeling like crap but good to be home. The emotions have stabilized thank goodness. I think some of that was due to coming off the opioids along with everything else. Loads of doctor appointments coming up and cardiac rehab soon. My brother has been making jokes that I am the bionic woman now because I have some sort of implant ring in my heart valve. He likes to pick on me but I guess it's true because I just got some card in the mail that I have to carry around with me that has this implant device serial number on it LOL. Weird. Still have fluid in my lung and pain while breathing and moving. Can't inhale completely yet. I get dizzy when standing and black out for a few seconds… I am anemic right now so I'm thinking it's some deficiency there that I have to work on. I still have those days where I can't go more than three or four steps without needing to sit down which is so insane to me still. It's almost impossible to sleep at night still working on that. Getting between two and three hours now. Looking forward to meeting with my medical team here and getting back to normal eventually. Slowly but surely. 💗

Not trying to sound depressing or anything but this week has been hard emotionally. I'm not used to having these emotions so it's been extra hard. I think it's a combination of feeling like no one understands what I'm going through and not feeling like myself anymore but I've cried more in my alone times this week than I have in a year. I know that it's probably part of the process and I'm trying not to let it take control. I just can't find the comfort I need to feel better inside right now. It's so weird. I feel like such a loser that can't stop crying.

I still have fluid in my right lung that no one seems to be concerned about. It shows up in my online medical reports but no one has told me anything about how to get rid of it. Im still having a hard time breathing because of it. It seems like the right lung is taking a really long time to heal.

I'm still at my dads house and due to be back in Virginia this weekend. I have appointments with my PCP and Cardiologist next week. Hoping one of them can help me with the lung issue.

I don't know. Maybe I'm stir crazy from not being able to do anything and feeling alone. Hoping the water works subsides. It makes me isolate myself even more which probably isn't good. I just needed a place to vent this because I hate the way I'm feeling.

After surgery, did you have days where you could be pretty active and then days where anything you did made you exhausted? I'm still early on after surgery… Just over two weeks, not really knowing what to expect and finding it strange that one day I can be perfectly fine with minimal pain and the next day the smallest activity takes me out for the entire rest of the day. I can't really figure out a routine yet because it's such an every other day thing right now. Today I walked 20 minutes and it completely kicked my butt. I was exhausted and slept pretty much the entire day after that, whereas two days ago I walked for an hour and felt fine. my blood pressure is still in the low category and my heart rate is still high. I'm done with all of my postop appointments here in Ohio and will see my cardiologist in another week and a half. Just trying to figure out what is normal now because I have no idea and that is scary to me.

Wondering how long it takes for the heart rate to go back to presurgery levels? My heart rate was between 47 and 55 as a very athletic person. Since surgery it hovers between 98 and 108. I'm on medicine that is supposed to bring it down but it so far is not doing anything. Some people get pacemakers to regulate the heart beat. I don't have one of those. I'm just trying to deal with all of the changes. I really hope my heart rate goes back to normal but I'm wondering how long will it take?

I was discharged on Wednesday last week and have had 2 trips to the ER since. Once on Friday for excruciating pain which they told me was just post op pain and possible cracked ribs, and then yesterday on Sunday because I woke up from a nap and my left forearm was swollen. ER confirmed I have a blood clot in my arm. They said it is "superficial" meaning not in the deep veins yet. Well that kind of freaked me out, but they said to monitor it and keep it elevated with a heating pad to help break it up. I'm not on any blood thinners so I guess I am at higher risk for clots? I emailed Dr. Gillinov and he said the same thing...so just another bump in the journey. Still feeling the pain and never really comfortable, but taking it one day at a time. Some days I can do my walking with no issues, and other days just barely walking a 1.0 on the treadmill kicks my butt. Still hard for me to get over this level I'm at from where I was with my fitness level before this. It's amazing how difficult a basic walk is now. Post op appointment in a couple days. My incisions are healing nicely. I have a 5" incision on my right side, a 1" incision on my breast, and a few small incisions on the side. One is in the center of my arm pit so I haven't been able to shave that arm pit yet!! It's gross but my family keeps making jokes I should dye it pink or blue😂😂😂

Yesterday was probably one of my worst days pain wise. I could not even use my spirometer Because my ribs hurt so bad I could not take any deep breaths. My breathing was so shallow I was short of breath and every time my body had a hiccup or something it would bring me to my knees in tears. I called the number they gave me for postop questions and they told me they wanted me to go to the ER to make sure everything was OK. I really just wanted them to switch my pain meds or something because what was working in the hospital is not working anymore. Spent about six hours at the ER and all tests came back...no pulmonary embolism...nothing majorly wrong with lungs or heart. They did say I might have a couple cracked ribs based on physical assessments they did but they could not confirm because my x-rays were not clear, because I could not position myself the way they needed since I was in so much agony. I've literally been wailing in pain when the medicine doesn't work. The doctor at the ER said I need to start taking NSAIDs and he prescribed me some muscle relaxers and Motrin. My question is, I'm afraid to start taking those and go off of pain meds even though my pain meds aren't really working, I'm afraid if everything wears off I'm going to be in excruciatingly more pain. Did anyone else have this issue where it was suggested to switch to anti-inflammatories? I'm not sure how many people here have had robotic surgery where they have to manually maneuver your muscle to different parts of the body, but it's really painful. Did you guys stay on narcotics long? Have your medications been switched to completely different medications? How long before the major pain becomes bearable? I know it's different for everyone but mine seems to be terrible all the time. Who knew I was such a wuss?!?! I really have nothing to compare it to because I've never had surgery, never broke a bone, never been in the hospital, never even been stung by a bee. One week and 2 days post op now.

So I just got out of the hospital yesterday and today is one week post op. I'm still trying to deal with all of the emotions from this journey and each phase of it. I never really thought about the recovery part before because I was so full of anxiety about the actual surgery part. Now I am home at family's house for the next week or so and trying to figure out my medicines and pain management and still feeling kind of traumatized from my hospital experience. Praying a lot today for PJ our fellow heart warrior who is in surgery as I type this. I'm so thankful she came to visit me and I can't wait to go see her. Even though we never met before a couple days ago, her visit was by far the best thing for me. If any of you ever have the chance to visit one another I recommend it.
Last night I didn't sleep well but I haven't slept well since surgery. This morning I woke up with tremendous pain like I haven't had before in a different area. Is that normal? I've been following my pain medication guidelines so I wasn't really expecting the pain I had this morning to be so intense. All of my vitals are normal and my weight so I'm guessing it's just part of the process. Wondering when the pain won't be so horrible 24/7. Any experienced people have thoughts on this? I can't ever seem to get comfortable and although I'm doing my breathing exercises, this morning the pain was so intense it made it difficult to breathe at all. I am exhausted all the time but cannot sleep. I'm trying to find something to give myself some neck support at night because on a wedge with pillows around me I still have a hard time. Since I can't move my torso much the only thing I can do is move my head and if it doesn't have good support it jerks around and wakes me up. Any advice?

Finally released from the hospital after 7 days. Had some complications which added about three days to my stay. Overall a very traumatic experience for me. An extra day in ICU due to blood pressure issues, water around the heart and lungs and an organ not functioning properly… Turns out I was going into Sepsis. They ended up having to take me off pain medicines overnight on night 5 during all of this which made it extremely painful all over again. Another day to monitor my bladder and then another to manage pains again and I'm finally out of there. Oh, and a 20 lb water weight gain. Thankful all of that is gone now! For everyone that said enjoy the rest… There's no rest when you're in the hospital I found out. There was someone in my room starting at 3 AM every day, every 30 minutes, all day long until midnight. Looking forward to hopefully finally getting some sleep. Still in a lot of pain, finally got to wash my hair after a week! And take a real shower. Trying to adjust to my heart rate being so high right now which will take time to come down. I can't do near what I could do before. My resting heart rate as an in shape person was 47, And now it's over 100 so we are managing that with medicine and day by day as I get stronger it should go down. Probably six months they say. Just walking laps around the hospital floor yesterday and I am extremely sore in my legs. Going up the stairs at my dads house I have to stop and take a break! It's unbelievable! Thanks for everyone who's been communicating with me through all of this. Definitely the hardest thing I've physically ever gone through. I have a long way to go.

My biggest issue with the whole process was my aftercare. It was nothing that I expected and actually very traumatic. I have never been in the hospital before but I expected much better than I received at the Cleveland clinic. To make sure credit is received, everything leading up to getting to Cleveland Clinic and planning the procedure and getting the surgeon I wanted went very smoothly and professionally. The staff on all of the other floors, and the ease of parking in the building was beautiful… All those things were fantastic. And my surgeon and surgery went as planned as far as the mitral repair goes. It is a wonderful facility! It was the after care that ruined it for me. In the span of seven days I had about 15-20 different nurses and of those nurses probably two or three that actually did a good job and the rest were very unsatisfactory. I was cared for over the weekend and had all interns and inexperienced nurses. I had to switch nurses a few times the first couple days because of incidents that were just unacceptable. My first nurse showed me how to use the spirometer and he was showing me to blow in the backwards end of it. He didn't even know what it was called. When I was in ICU there was a grumpy nurse there who was having a bad day and treated everyone very unsatisfactory. She threw me around like a cold fish when I was in the worst pain I've ever had in my entire life. Every time someone used the call button she acted like it was a bother to get up and see what they needed and one lady she didn't seem to want to help at all and spoke down to her. When I found out she was going to be my nurse and I had to stay there another day I had to request a different nurse. When I finally got a room I had two very young nurses working together that literally had to ask each other in front of me no less if the other one knew how to do the procedure because she didn't know how to do it and neither did the other one… I ended up having a serious issue with my bladder and had to wait over an hour screaming in agony for someone to come help me and I had to have an emergency Cath. When the two nurses came they had to ask the other one if she knew how to do the procedure because she didn't know how to do it and neither did the other one… I ended up having a serious issue with my bladder and had to wait over an hour screaming in agony for someone to come help me and I had to have an emergency Cath because I had 1000 mL of urine that would not void. That's one liter!! but only after I was on the floor on my hands and knees wailing at the top of my lungs and received no help. When the help finally came, it was the same two nurses that didn't know how to do anything. I requested another nurse again. After all of that I couldn't even stand on my own for the first three or four days and no one was helping me get up and walk. I requested a walker for myself so I could get myself up because I knew I needed to be walking, and it took eight hours for one to be delivered to me and right when it came, my surgeons nurse I was just now meeting…came in griping at me first thing because I had not been up and walking yet and she did not want me using a walker… She did not know what I had just been through and when I tried to tell her she still scolded me like it was my fault. I had about three or four good cries of pure frustration and anger at my treatment. I ended up speaking to two different nurse practitioners. One apologized for her "younger staff", and the other one had sympathy for me and treated me Very gently the rest of my time there. On day five they stopped giving me pain meds and never told me why so I spent the night shaking in agonizing pain crying my eyes out begging for pain medicines that they would not give me. And the next day they wanted to release me but I couldn't move. It literally felt like I was in ICU again. Finally an older cardiologist came in and spoke to me and he was terrific. He sat with me and we talked about what was happening and he explained the issue with my bladder and my pain and why they had to take me off pain meds and he made sure I got to stay there long enough to get pain under control again. I was never so happy to leave anywhere in my life. At the same time I was also sad because I heard such great things about the Cleveland clinic and it was sad to me how I felt the whole time I was there. It just wasn't the feeling I wanted to have after having this on my plate the past four months and finally being through it… I just expected to feel taken care of in the worst time of my life. That's why I made the trip and planned to have the surgery there.

Thank goodness PJ came to visit me because she is having her surgery tomorrow! As soon as I saw her I felt instant relief because I knew she could understand how I was feeling, although I did not tell her any of what I had been through because I didn't want to scare her. I hope that she receives better care. I will say that the last two days I noticed a change in the nursing staff and they were much nicer to me. Like I said, maybe it was just the weekend staff? I don't know.

Now I'm at my dads house trying to settle in so I can finally sleep. I don't have much of a voice and I'm still in a lot of pain trying to learn all of my medications. As I said, everyone told me this would be a breeze because of my age and fitness level and I still got those phrases from the doctors and nurses at the hospital, but this definitely was no breeze, was very painful and emotionally draining. I knew it was not going to be fun but I just didn't expect it to be as traumatic as it was .

So I got through my surgery on Thursday. I haven't posted because I'm in agony. I didn't want to scare anybody with upcoming surgery so I didn't want to post on how my experience has been. I can say that it's a lot worse than I thought it was going to be with everyone telling me I'm young and healthy and it should be a breeze. Well it's not. They kept me in ICU for two days because I've had blood pressure issues. I am in a room now but I still haven't been up or walking around yet. My resting heart rate has gone up quite a bit. I was in the high 40s before this and now I am just under 100, and put on 15 pounds of water weight so far. I feel absolutely terrible, but the surgeon said that the surgery was very successful So that's a good thing. I will post more as I start feeling better I just wanted to make sure I touch base with everyone. Thanks for your thoughts and prayers.

Made it through surgery I will post more later. So much pain and weakness. Blood pressure issues so they won't release me from ICU yet. Feel like a truck hit me. First day was worst day ever in my life with pain and weakness.

So the hospital called about 10 minutes ago and let me know that my check in time tomorrow will be 5:15 AM. I was mentioning to someone on here about how surreal this feels having gotten this far and being in this position right now. The clinic made me watch a seven minute video about surgery prep today, and although I've held it together so far, I immediately burst into tears uncontrollably! I knew that was coming I just wasn't sure when. Not only is this my first surgery but as most everyone here knows, the emotions of this roller coaster over the past few months has been very overwhelming. I'm not sure exactly when my surgery will start but I am the first one so I'm assuming it won't be long after check in tomorrow. My family is all here and ready to hit the road for the hospital at about 3:15 AM since we have to drive a ways to get there. Going to be a long day for them, but I've been doing this for the past couple days so I'm as ready as I can be. I will post again as soon as I can! I feel like I'm at the top of a roller coaster hill right now, and soon the roller coaster will go down ready or not! There's no turning back like it or not! LOL

Finally Met with Dr. Gillinov today. It went by so fast as he had a very busy day scheduled today! He was great though and I feel really confident about him. They gave me a free copy of the book he wrote and he signed it for me. He told me not to worry too much about what the Cardiologist told me yesterday and that I most likely won't need to be on blood thinners. It's just that because my atrium is enlarged I have more of a chance of developing afib over the course of my life. He said my leak is a 3.5 and there is a 98% chance he will be able to perform robotic repair surgery. If he cannot for whatever reason I have chosen a tissue valve. I still do not have a surgery time. It's 2:30 and they told me I should know by 4:00 today. If not I am to call them. Now I wait and try to keep my nerves under control!!! Surgery tomorrow!!!!

So far I am so extremely impressed with Cleveland Clinic. First, the heart center is an absolutely gorgeous building. All of the staff from the valet parking attendants to the greeters, to the desk attendants and nurses/doctors are extremely professional and courteous. It's everything I thought it would be and more. They have a very well run system. I had nine appointments scheduled today and all of them were ready and waiting for me on time, and some even earlier. I never had to wait other than a couple times I showed up extremely early because my other appointments were handled so quickly and efficiently. I have never experienced such order and professionalism in the medical field. For anyone about to head to the Cleveland clinic, just rest assured that everything is going to be taken care of and its very easy to decipher the itinerary and get from appointment to appointment.

All my testing is done now and I meet my surgeon tomorrow and find out when my actual surgery time is for Thursday. So far being here with family I have been able to hold it together but I'm still nervous as ever inside and I know after tomorrow it will probably hit me. I'm just so thankful it's happening here at this amazing hospital!

Just met with the Cardiologist at CC. Not my surgeon but the Cardiologist for pre op. He was really upset and said my doctors should have sent me for this surgery 3 years ago! He kept repeating that he could not understand why they let this go when I should have had surgery as soon as they did the first reports in 2013. He explained everything in more detail than anyone has ever explained this to me and said I could sue based on affects I could possibly suffer at this point that could have been avoided 3 years ago. Wow.

Today I'm leaving for Ohio. The time is here and Tuesday starts my first day of pre op at Cleveland Clinic. I have 12 appointments in two days before my actual surgery. My family is on the way today as well from Texas and VA. I'm just trying to keep a level head and try to keep my anxiety down. It feels so weird not being able to take my daily vitamins and supplements. Haven't been on them for a week due to the surgery coming up and they told me not to take anything. Anyway, we are driving up today and probably taking the longest route possible LOL. I'm not overly excited to get there!! I'll keep you all posted! Ahh!!!

Well it's been a while so I figured I should post an update. To be honest, I've been in silent freak mode for about a week. My surgery date is 11 days from now and I really can't even describe how scared I am to go through this. I've done all I can as far as research and knowing what's going to happen. I have a strong faith and I know I will be in the best possible hands, but I am still human and there's no amount of anything that can calm the nerves or anxiety about going through this. I was joking with my fellow heart valve friend here about who was a bigger chicken when it comes to this! I told Dan I'm surprised I'm not laying eggs yet! At any rate, I know what I'm feeling is normal and we all deal with things differently. I'm a pretty strong willed and minded young lady, I've been through a lot in my life but nothing like this! I find that I have surprised myself many times in my life at everything I've overcome, so I find it kind of indescribable at this point never having to face something like this before for myself, and not really knowing how to deal with it or even knowing what to expect myself to feel. The only thing I can say is that I'm scared but I know I will be OK I just have to get through it. For me that one part is just the actual day of surgery. The part where you know it's going to happen and you can't run away from it. All I can say is I hope they give me lots of drugs to knock my butt out! I will post more on here as the time approaches and afterwards, but for now I can't even imagine the after part because I can't even imagine getting to that point of preoperation! Ready or not though here it comes!

Can anyone tell me about how the heart lung machine is connected to the body? I'm still unsettled about that. They told me it would be connected to my femoral artery to suction the blood out. I didn't ask too many questions since it was just the initial surgery date setup call, but I had a bad experience with my heart cath procedure through the femoral artery so I wasn't thrilled with hearing it will be connected there. And where does it return the blood to the body? I was thinking in my own mind that I would only be dealing with upper body discomfort and not lower body too. That might be the last of my worries in all this but it's easier to deal with the other things because I have never experienced surgery before so I don't know how all of that will feel. I DO however know how the femoral artery procedure feels and it wasn't a good experience! AHH!

Who knew I would ever be so excited to have heart surgery!? I finally heard from Cleveland today and have a surgery date of July 21 with Dr. Gillinov. The stress and anxiety of planning this since March has been so heavy! Dr. Gillinov said my mitral valve is repairable so I don't have to make that decision about valve replacement. I won't know until after all the preop testing if he can do it robotically or not, however, it sounded hopeful that that is what he is leaning towards. I am so relieved I can stop the living in limbo and start concentrating on moving forward!!

What's the typical wait time, or is there one...from the time the surgeons review your records to the time of surgery? Is it typically scheduled weeks out after that? Or sooner? Or is it all relative to each situation and Dr. availability?

Well, I mailed my packet off to The Cleveland Clinic today. Feeling a rush of emotions which I'm sure many others have felt. Now I wait. Three weeks they told me for review before I will hear from them. I keep thinking is this really happening? Yep. It is. I never know what I am going to feel from one day to the next. One day I am strong and ready to do this and the next I am scared and feel like no one around me can understand what I'm going through. On those days I feel like I'm in a silent world all alone as life goes on around me...and I pick myself up and just keep moving along trying not to let this consume my every waking moment. But it does. Today is just one of those days I guess. I'm going to try and get a workout in today. Hopefully that will help lift my spirits.

This is probably going to make me sound really ignorant, but here goes....I have always been active, full of life, energetic, worked out and led a healthy lifestyle. I do not have high cholesterol or blood pressure or any major health issues. I have a leaky heart valve that needs repaired. I am learning so much about this and keep finding the term "Heart Disease" to describe my valve issue. To me I just can't grasp that term. Does one bad valve throw me in a "Diseased" category??? My heart is strong and healthy other than a valve that will most likely be repaired. Does this mean I am doomed with the term "Heart Disease" for the rest of my life? I think of diseases as something deteriorating or sick...and I guess my valve falls under that category now, but I still don't think of it as being a "disease." It's hard to grasp being in the fitness industry and leading a very healthy lifestyle to all of a sudden having heart disease. Am I making sense to anyone? I don't know. I never thought of this as a disease. I guess it could lead to heart disease. People who know me keep saying they are shocked as fit and healthy as I am that I would have a heart issue...I just say, "I don't! My heart is healthy! I just have a bad valve!" Does anyone else feel this way about the terminology?

Anyone who had a heart cath through the groin....how many days did it take to recover? I'm on day 7 and still in a lot of pain hobbling around and having difficulty sitting up and down and moving in general. Doc is sending me for an ultrasound today to check things out because he says I shouldn't be in pain still and should feel back to normal. I have slight swelling and bruising still near my pelvic bone and pain radiating up my right abdomen that hurts with the slightest touch. No extra swelling or hard spots but I do feel really bloated and uncomfortable. Any one else have this experience? I'm not sure what type of pain or discomfort I should feel.

Everything is starting to come together. I have known since March that I need heart surgery and have been going through all of the motions and preop procedures to determine everything that needs to be determined to get a well rounded base for the surgeons.
I had the EKG's, Cardio Echogram, TEE, and most recently the Heart Catheterization. (I was really scared of that one!) Now I have all that done and am in process of planning the actual surgery. I'm sure everyone here has gone through this process of feeling like your whole life is on hold while knowing this has to take place and taking the steps to get there. It's a lot of emotional stress but I am handling it so much better since I found this site and got Adam's book. I am now in the process of getting my packet of health records ready to send off to Cleveland Clinic. They say I should hear from them in 3 weeks or so after they receive everything. For me it just makes sense to go there since my whole family lives there. I will still talk to the surgeons here in VA as well but I'm leaning more towards Cleveland since my family is there already. I've been through so many emotions over the past weeks...mostly fear of the process and financial worries with being out of work for however long I will need to be out of work...and then also knowing that fitness and the gym is not only my life but my livelihood. Just thinking of how everything will change after this..at least until I am recovered. I guess it's all normal worries and fears. Anyway, I'm rambling. It's just nice to have a place to ramble where people will actually understand what I'm going through! I'm still scared but I'm looking forward to getting this put behind me so my life doesn't feel so on hold.

So...I have a heart cath next week as part of the preliminary to planning heart surgery, and can I just say the thought of that procedure freaks me out as much as the heart surgery?! I've never been in the hospital or had stitches so the thought of a catheter being put in a major artery and pushed all the way to my heart scares me. I know it may sound trivial since most people here have had the major surgeries or at least some sort of surgery in the past...and this is just the beginning of the major stuff ahead...but can someone tell me what this heart cath procedure is like when you are going through it??

Does anyone have a surgeon referral for Cleveland Clinic? I need a mitral valve repair. I live in VA but have family near Cleveland so I am hoping to get the procedure done there. Also..does anyone have any helpful advice about planning a surgery out of state? I am so new to this process and have no idea. I am just going through the stages of planning everything. I've never been in the hospital or had a surgery before. I am 38 with severe regurgitation and feeling shortness of breath even throughout daily activities, and more recently chest pain at night. My Cardiologist says I need this done soon. I had a TEE last week and a heart cath next week. Any advice is appreciated.

I'm in the process of testing to determine which type of heart surgery I need to repair my mitral valve and tricuspid. I have a TEE this week followed by heart cath. I haven't had too many formal discussions yet with doctors and I am in the waiting period trying to read as much as I can about what to expect so I am as prepared as possible. Can some of you who are recovering give me some pointers for things I may need to prep my house for when returning home from heart surgery? Will I need to have one of those elevation pillows? Anything that can help me prepare my home would be appreciated. I just ordered the book from this site so hopefully that will give me more info as well.

I'm 38 and just found out I have to have heart surgery to repair my Mitral Valve from severe regurgitation. I am in the process of testing to find out which type of surgery I will need to undergo. I've never even had stitches so I am pretty freaked out. I have a TEE test this week. I'm the type of person that has to know what I am facing and what every possible scenario could be. I have read a TON online since I found out I have to do this. I am thankful I found this site to read other stories and find some support.