I was taken to the ER last night due to really bad chest pain and having pain that was stabbing and tender to the touch where my incision is. I was curious ...Read more
I was taken to the ER last night due to really bad chest pain and having pain that was stabbing and tender to the touch where my incision is. I was curious if anyone had this problem a month after surgery. The pain around my incision is severe but there doesn't look like there's any infection. It's more swollen than before and can't have any touch or pressure on it. Right now my vitals are stable my BP is a little high and my HR is in the low 100s which is unusual for being on a beta blocker. We are going to do a CT and the on call surgeon and cardio are being called. They are talking about taking me back up to cardio ICU. When I know more j will let you know. They're giving me dilaudid which doesn't seem to help much because of my tolerance to medicine and what they were giving me when I was admitted for my surgery. I can feel my incision just having shooting pain right now and it's unlike what I've been used to considering the pain was getting better last week. If anyone has any advice to what this could be or has experienced this please let me know. It would help with what to tell the doctors and give them ideas too they seem to be stumped as to why this is going on.
Petey Bello Good luck Cassie, hope you are out of pain soon!!!
Cathleen Weed I had wire issues for quite a while too...and the pain will raise your HR and BP...let us know!! xo
Nap Garcia Do they remove the wires from your sternum eventually? Or they stay with you permanently? If they a ... Read more
Nap Garcia Do they remove the wires from your sternum eventually? Or they stay with you permanently? If they are removed, how is that done, because you're basically sealed up or stitched together right?
Kate Watson I have found that pain also increases my HR and BP. About 6 weeks after my first OHS, I had pleurisy ... Read more
Kate Watson I have found that pain also increases my HR and BP. About 6 weeks after my first OHS, I had pleurisy which was extremely bad chest pain, but was not related to my incisions. Glad you are at the hospital and getting everything checked out. I hope you get some answers and relief asap!
Wanda Mroz Hope you get answers and feel better soon.💞
Cheryle Bird It's good to hear that you are having it checked at the hospital. Hope the pain eases and you get som ... Read more
Cheryle Bird It's good to hear that you are having it checked at the hospital. Hope the pain eases and you get some answers around this. x
Kate Watson How are you doing Cassie? Did they figure out what was wrong?
Wow. What an incredible last couple of weeks it has been. I never thought I would make it to this point and here I am. I remember reading posts on here where ...Read more
Wow. What an incredible last couple of weeks it has been. I never thought I would make it to this point and here I am. I remember reading posts on here where people talked about being on the other side of the surgery and i remember just thinking to myself "I can't imagine what that must be like to have that calm feeling being on the other side." I have to say, there is nothing that I could have done that could have prepared me for this and I wish that I would have pushed myself to prepare for the recovery. I walked into this recovery blind to how nasty and tough it would be on me. I was so afraid of my mortality and my young age with this surgery, that I wasn't prepared for life after surgery. Here i am two weeks later laying in bed, still in pain, still uncomfortable, yet relieved to have my stitches out. Thankfully I was only in the hospital once since the surgery for an infection and for a fever that was able to be taken care of promptly. I remember reading from other patients that they underwent cardiac depressions. I swore up and down that I wouldn't go through the cardiac depression. I just made it through a massive surgery that was to save my life, how could I be depressed? How could i feel so low and so alone? I have to admit that I have fallen into the cardiac depression that i swore I would not go into. I think there are many factors to why this has been such a hard time for me. My fiancé left me a week after the surgery, leaving me heart broken wondering how the "love of my life" could leave me during my recovery, dealing with the chronic pain and acute pain as well as my autoimmune diseases were a struggle as well. The surgery in it self is a lot to get through. My question to the community is how did you get through this tough time in your life. I know that this is not going to be a walk in the park, but I would like to make it better, I would like to be happier and I would like to start appreciating life the way I used to before the sickness and surgery took over. I appreciate all the help you all have been. Being 22 and having open heart surgery wasn't on my list of things to accomplish this semester, but it has made me incredibly strong and I am beyond grateful for all of you and this experience. I apologize for spelling and grammatical errors as I am very tired and still on a lot of medications. Thank you so much for everything
Cass
"
Jackie Owens I went through the same issues (along with auto immune diseases however, minus the Fiancé thing).... ... Read more
Jackie Owens I went through the same issues (along with auto immune diseases however, minus the Fiancé thing)....I am young, not as young as you by any means, but under 40 and this was my fourth open heart surgery. Be thankful you are young, you will heal faster and be back on the mend quicker. I went through every emotion known to man! Pain, suffering, depression, anxiety, etc for a few months after my surgery. I thought this pain is never going to end...then, one day you just wake up and the extreme pain/fatigue turns to pain/very tired, which turns to sore/tired, which turns to a little sore and not tired! It's amazing when that happens! It took me about 4 weeks to really start to feel semi normal again, but I had PTSD/depression for a few months after. Never be afraid to ask for help from friends, family, etc. I pretty much don't ever think about it anymore. Its almost one of those memories you try to suppress, just enough...but never forget! I choose not to forget because the struggle, and the pain is the reason I'm still here! I'm 7 months post op and I'm doing great! I'm back on my mountain bike, hiking, running, etc... Life's much better now than before surgery. Trust me, give it another couple weeks and you'll really start to see a difference. :)
Cathleen Weed Sweetie I just want to say hang in there ❤💛. I was 19 when I had my first aortic valve replaceme ... Read more
Cathleen Weed Sweetie I just want to say hang in there ❤💛. I was 19 when I had my first aortic valve replacement and you are correct that there's nothing that can really prepare you for it! I was also in college and so disappointed to take a semester off. It's difficult to feel so different from your friends at a young age. You are dealing with something they can't understand. I do remember sitting by the pool listening to my walkman (lol) crying during my recovery. It's TOTALLY normal. You WILL feel better soon. I have gone on to do many amazing things in life and you will too! I finished my degree, I've been around the world, I'm in the Screen Actors Guild, and I even became a nurse! This is the beginning of a brand new wonderful life for you. Trust that you will feel better soon ❤. This too shall pass 💛. The best is yet to come 😀🌈.
Kate Watson Oh man, I feel for you because I am just over 3 weeks post op. I was just telling someone how I coul ... Read more
Kate Watson Oh man, I feel for you because I am just over 3 weeks post op. I was just telling someone how I could never have prepared myself for how hard this was going to be. Even though it's my second surgery and I knew somewhat what to expect, that didn't seem to matter. I'd also been really scared about managing my other chronic pain issues, like fibromyalgia, IBS and migraines in addition to this surgery. I seem to have started feeling better in the the last week though, I mean I have discomfort but not the severe pain of the first week. I've been trying to make sure I move around a lot. It does help and is important. I am sorry you had to go through this at your age. I was 29 when I first had surgery. It's very hard because people our age have trouble relating. I am so sorry too that your fiance left you before this, that must have been awful. But I guess the bright side is that he wasn't the right one for you and it's better to know that now as painful as it is. You deserve to have someone who will be by your side no matter what. I have changed a lot since my first surgery, as then I tried not to tell anyone but my family what I was going through and kept it to myself. This time I have asked for help and support from everyone I can, even though it is really hard for me to do- I find that people want to help but they need to know what you want them to do specifically. I think I am doing better emotionally this time because of the support I have gotten through this and because I am making sure to reflect on what I am grateful for, whether they be big or small things. I wish you a lot of strength through this hard time. And I hope you have lots of support around you.
Rita Savelis I hear you. It's still so very early for you. Recovery takes time and you can't compare days, you hav ... Read more
Rita Savelis I hear you. It's still so very early for you. Recovery takes time and you can't compare days, you have to compare weeks or months. It's unfair that you had to go through this. Nothing can really prepare you for cardiac surgery. We tend to be so worried pre-op and yet post-op lasts a long time. Life is never the same. One gets used to a new reality but it all takes time and yet we feel "guilty" that we somehow are not super humans. Or we hear other patients' super stories and wonder why we're having a hard time. I encourage you to write and to talk. To see a therapist to work through this. It's been a year of ups and downs for me and I really needed to talk and write out the terrible brutality of recovery. When I was a young cancer patient (39 yrs ago) remember every other patient was old. Now I'm old and my heart broke when I saw younger patients, even children, at hospital. But younger patients have a different outlook and focus less on the disease usually and more on what they want to do in the future. This experience will eventually forge you into a stronger person. First you have to grieve for what you've been through. I'm sorry your fiancé left. He has his own issues. You didn't need that.
Tim Goff HI Cassie,
Sorry to hear you are dealing with so much at once. Each of us has a different experience ... Read more
Tim Goff HI Cassie,
Sorry to hear you are dealing with so much at once. Each of us has a different experience coming out of surgery and at the moment yours certainly sounds like a challenge. The only suggestions I can offer were those of my surgeon and cardiologist. The cardiologist said "get up & out of bed each day, shower, dress and have a purpose, don't languish. You will feel better for it". The surgeon said to walk each day, small distances at first, then build as you feel better. It will improve your recovery, mentally and physically". Both told me there would be setbacks, and of those I had a few, but in my case I was able to overcome and move on. I trust that you can do the same. With regards to your fiance, sorry to hear someone was that disrespectful. I can only suggest you "look in the mirror", right now that person is your priority. Take care of yourself and be optimistic that you can and will find the strength to get through this. Other suggestions here were excellent. There is much support to be found among this wonderful group of heart sisters and brothers.
Petey Bello Cassie I am so sorry you are going through so much at such a young age. It is a lot for you to have ... Read more
Petey Bello Cassie I am so sorry you are going through so much at such a young age. It is a lot for you to have on your plate. I agree with Tim. This process is hard on all of us & our drs are correct to tell us to get up and get dressed every day. This simple yet difficult task is a good place to start each day. I am sorry for your pain & heartbreak from the breakup of your fiancé. Anyone that selfish isn't the person you deserve to spend the rest of your life with. I have been married 42 years. Marriage is a lifetime commitment of ups & downs & you need a good partner to share that with. If he could not be by your side at this special/difficult time in your life, he is not the one - you deserve better!
Take one day at a time. Hang in there. This blog is a great place to express your feelings and receive wonderful support from others understanding what you are going through.
God Bless!
Sophia Ridley I can't really add to the wonderful comments, just wanted to send you a big virtual hug.
Wanda Mroz Oh Cassie... I'm sorry about the boyfriend. He doesn't deserve you. That is adding to the sad feeli ... Read more
Wanda Mroz Oh Cassie... I'm sorry about the boyfriend. He doesn't deserve you. That is adding to the sad feelings I'm sure... But focus on the fact that you made it and each day it will get a little bit better. The first month was tough for me, yet others thought I was doing fabulously well. I still get sore... Today it's rainy and my ribs hurt but im happy to be alive to feel that. I know it must be harder at such a young age but you can do this... Once you start to feel stronger your depression will lessen. We are all here for you to listen and cheer you on. We are all stronger than we imagine we are. We each heal at a different pace and have different obstacles so keep on keeping on... Blessings and positive thoughts your way... And a big hug... 💞🙏🏻
Christine Oliva Cassie you can do it! It usually takes about/approximately three weeks when you start feeling like y ... Read more
Christine Oliva Cassie you can do it! It usually takes about/approximately three weeks when you start feeling like yourself. Still some discomfort but not anywhere near week one or two. You will see and 100% agree you need to walk and walk. This will help you physically as well as mentally. It will help you realize you do have some say in your recovery. I'm alive now what can I do to keep myself alive was one of my thoughts as I walked in a nearby park and focused on that verses the lingering discomfort or the sense of being fragile. Plus it helps you get rid of that hunched over look which really bothered me. Cassie I wish you luck and what you are going through most of us have gone through it earlier or later, times vary, but guess what we are all survivors and so are you. May God bless you with patience and peace.
Hey everyone!
Tubes are out now and so is the catheder. We are having a hard time managing my pain. I am on chronic pain meds everyday which has made managing ...Read more
Hey everyone!
Tubes are out now and so is the catheder. We are having a hard time managing my pain. I am on chronic pain meds everyday which has made managing the acute pain very hard. I have gone from trying to sit different ways to using pillows and ice. I think because I am big breasted that it also causes extra pain where the incision is. Did anyone else experience this? I am just taking it day by day. I know that I'm not going to be better over night but I also need to find a way that the pain is manageable and where I can tolerate it without losing my Shit. Doing things are still hard for me but using my core has really helped too. It is still hitting me that I made it through. I think I was so consumed with trying to mentally prepare myself for surgery because I was so afraid and I didn't realize how nasty recovery would be for a chronic pain patient. I love all the advice I am receiving and all the kind words. It's nice being on this side with you guys. Much love xoxo, Cass
Denise Campbell Keep up with pain management. Don't be afraid. It'll get better. I'm almost five weeks ... Read more
Denise Campbell Keep up with pain management. Don't be afraid. It'll get better. I'm almost five weeks post op and the pain has turned to tenderness more or less but I still use pain pill sometimes. Good luck
Peggy Whitecotton Stay on top of pain management by asking for pain meds when they are due. You want to stay ahead of t ... Read more
Peggy Whitecotton Stay on top of pain management by asking for pain meds when they are due. You want to stay ahead of the pain before it gets out of control. My surgeon says pain is a heart sergery patients worse enemy and slows your healing, when in pain you will not be able to cough, do breathing exercises and your walking. He also had orders that I was to be medicated before any activity such as walking, etc... Eventually I used Tylenol during day and a pain pill at night (3-4 weeks post op)..by 6 weeks occasionally . My doctor wanted me to wear a bra 24/7 said it would help with muscle pain in chest and back... BUT for me it I couldn't stand it maybe cause I am small breasted.. Take care healing will come.. I think you are right when said you focused so much preparing for surgery and not about the recovery part. I was the same way. No one prepared me for the recovery part, it was long and hard, times I thought I would never be the same again. It took me every bit of about 4 to 5 months... Now 7 months post op I feel better than I have in years, my surgeon says I have given you a heart like you when you were 19... So blessed to have been given a second chance of life.. Hang in there looking forward to the great life you have ahead...
Clare Auten It sounds like you have been dealing with chronic pain even before surgery. Do the best you can to ge ... Read more
Clare Auten It sounds like you have been dealing with chronic pain even before surgery. Do the best you can to get comfortable. Hang in there. Hope you feel better soon.
Linda Richards Did you have minimal invasive? I did for MV R ... I'm going on 7 weeks and still have pain in my righ ... Read more
Linda Richards Did you have minimal invasive? I did for MV R ... I'm going on 7 weeks and still have pain in my right side near incision area. Other wise i feel great ... walking (gym/mall) feeling less tired ... I'm taking less pain med, mostly over counter .. Aleve ...
Cassie LaFramboise The pain has gotten a lot better compared to where I was. After talking to some cardiac nurses and su ... Read more
Cassie LaFramboise The pain has gotten a lot better compared to where I was. After talking to some cardiac nurses and surgeons, I found out that the minimally invasive way is sometimes (depending on patient) just as painful as the sternum because of the position your body is put in, and all the fishing around and moving around they do with your organs. I have to say that this was hands down one of the most painful procedures but I know that I wouldn't have gotten through it without the wonderful hospital staff and from the love and support of this community. Thank you so much. I still have a lot to go, but everyday is a better day. Staying positive and believing in yourself is everything.
Day TWO in the hospital.My surgery was yesterday morning, and i am dealing with severe pain from the right side of my chest, back and rib cage. I have been ...Read more
Day TWO in the hospital.My surgery was yesterday morning, and i am dealing with severe pain from the right side of my chest, back and rib cage. I have been close with pain managementt and my doctor has been prescribing narcotics as well as non narcotics to help with the pain I have been feeling. Does anyone have suggestions on how to make it through the hospital and the post op pain? Thanks again for all the positive support and for all the help leading up towards these moments. I truly appreciate it.
Emily Rowley Are you in ICU or the Cardiac Ward? I would advise to take it easy, have pillows handy to keep you co ... Read more
Emily Rowley Are you in ICU or the Cardiac Ward? I would advise to take it easy, have pillows handy to keep you comfortable. I found the Nurses giving me a freshly hot steamed blanket to wrap around my body helped me. How is your breathing going? My breathing was terrible when in pain, I think I may had been hyperventilating though...
Alina FH Cassie, SO GOOD to hear from you. Stay on top of the pain by taking the drugs they give you. Even if ... Read more
Alina FH Cassie, SO GOOD to hear from you. Stay on top of the pain by taking the drugs they give you. Even if it feels like you don't want to take them, take them anyway, because the pain will come back. The back and ribs hurt from the surgery itself and your being on the table and having your chest open as well as from the tubes. Once the tubes will come out, you'll feel like a new person! For now, take the pain killers, and if it hurts to breathe (you MUST do your breathing exercises for your lungs to get strong), also ask them for some muscle relaxers - they will help a lot with the rib cage pain.
Warmth, like Emily says, or ice packs (for me), whatever your body can tolerate, will help, too.
Hang in there! So glad you made it ok! Hugs from Utah.
Wanda Mroz Glad to hear from you! I had bad pains in my shoulder blades, especially the left. I could t take ... Read more
Wanda Mroz Glad to hear from you! I had bad pains in my shoulder blades, especially the left. I could t take deep breaths at all it hurt so bad. They gave me cool packs and hot packs to help. One nurse even made me one! I also was prescribed muscle relaxers that helped a bit. When physical therapy came up they massaged the knots which was helpful. Keep on top of the drugs too. You made it! Focus on that... The pain will get better. Hugs! 💞
Jan McClain Glad to see your post, Cassie, you made it!! The worst is over, remember that from now on everything ... Read more
Jan McClain Glad to see your post, Cassie, you made it!! The worst is over, remember that from now on everything will get better and better!!! Keep a positive attitude and keep posting! We are all rooting for your swift recovery.
Tammy Pilcher Cassie, it's so great to see you're on this side of surgery now! You have great advice from all the ... Read more
Tammy Pilcher Cassie, it's so great to see you're on this side of surgery now! You have great advice from all the above, so hang in there. Things will get better each day! God bless you!
Kate Watson I'm just a few days ahead of you in my recovery. In the hospital, I found that I had to really push ... Read more
Kate Watson I'm just a few days ahead of you in my recovery. In the hospital, I found that I had to really push to make sure they gave me my pain meds at regularly scheduled times. Depending on which nurse I had, some were great about coming in and giving me them on time, others would wait until I asked for them. Every time I got a new nurse and I had many, I had to make sure my husband or I emphasized that I needed the meds regularly to stay on top of the pain. I swear some were relctant to given them unless I was in excrutiating pain. What worked for me was dilaudid plus tylenol, plus iv dilaudid in between for break through pain. The nurses were great with helping reposition me and used extra pillows to prop me up. I had to lie on my back the whole time with the head of the bed partly raised, and with pillows under my shoulders and neck. I also requested ice packs and a heating pad at different times which felt great. I requested lidocaine patches which they put on the front on my chest or on my back. I'm glad you made it through ok. This is really really hard stuff. Just remember every day will bring you a little closer to being healed and this will soon all be a distant memory. (At least that's what I'm trying to convince myself of :)
Steven A Husted god bless you i am sorry you are having trouble with pain just keep asking for your pain meds so they ... Read more
Steven A Husted god bless you i am sorry you are having trouble with pain just keep asking for your pain meds so they can keep up with your pain some times they get busy and let it go i thank god i did not have much pain but i did keep up with my pain meds which helped
Meredith Bray Once the drain tubes come out the pain will start to decrease dramatically. After that, make sure you ... Read more
Meredith Bray Once the drain tubes come out the pain will start to decrease dramatically. After that, make sure you are:
1. Standing up as straight as possible when standing/walking
2. Supporting your head/neck shoulders while resting/sitting.
Your core muscles have taken a bit of a beating, and using them to support your upper body uses a lot of energy that can be used for healing. Once you have your head/neck/shoulders/arms supported, you'll be able to relax your core muscles and get some good rest.
Try using a travel pillow our a rolled up towel/t-shirt under your neck, and a couple of bed pillows under your arms.
After the first few days of recovery, try to resist the urge to curl forward to protect your chest. The best thing you can do for back pain (in my opinion) is stand up super duper extra straight. This will also help with your breathing therapy. it's much easier to take a deep breath when your lungs have room to expand (it'll still be uncomfortable, but less so.)
Good luck, my back pain was excruciating until my physical therapist spent time with me.
-Meredith
Tomorrow is the big day! I am feeling extremely nervous while trying to keep my mind distracted. I am lucky to have all my family here with me and my fiancé ...Read more
Tomorrow is the big day! I am feeling extremely nervous while trying to keep my mind distracted. I am lucky to have all my family here with me and my fiancé as well. I am just wanting to wake up on the other side of this. This journey has been long and hard. I am trying to stay positive and I am trying to think of all the good things that will come after this hurdle. Please keep me in your prayers and please keep me in your thoughts. Thanks for all the support and help so far. As always, I love any advice that you may have for right before the surgery. I am realizing that it's okay to ask for help and to have people be my rock instead of trying to get through all of this on my own. Being 22 and going through all of this has definitely taught me a lot about myself and life in general. I just want to get through tomorrow 😊
Debbie Bentley I'm praying for you Cassie . Your young and you will do outstanding !!
Bob Fessler Good luck Cassie! I'm praying for you also. I have not had heart surgery yet so I can't help you wi ... Read more
Bob Fessler Good luck Cassie! I'm praying for you also. I have not had heart surgery yet so I can't help you with pre-surgery advice. But I do know that a positive attitude is important. I've had surgery before just not this one. YOU KNOW YOU CAN DO THIS!!!! So work your way through it and we will see you on the other side.
Tonia Earley Thinking of you Cassie, you will be in my thoughts and prayers! And you great!
Marilyn M Wishing you the best of luck tomorrow!! In my thoughts and prayers!
Tammy Pilcher Cassie, you will be in my thoughts and prayers. God will be with you every second and His love for u ... Read more
Tammy Pilcher Cassie, you will be in my thoughts and prayers. God will be with you every second and His love for us surpasses our understanding. These are a few of the scriptures that I kept in a journal before my surgery: Psalms 62:8, 28:7, 34:4, and 55:16, Isaiah 41:13, and Proverbs 3:5-6. These and many more helped to reassure me. I pray they will bring you the same peace they brought me. Sending hugs!!
Good Luck!
susan kotansky It will be over soon and you will emerge a hero...strong in your recovery and thrilled to be on the o ... Read more
susan kotansky It will be over soon and you will emerge a hero...strong in your recovery and thrilled to be on the other side. Pre op is definitely the hardest tíme cause you're facing the unknown. You are in my thoughts. ..you will do great! !
Kim Boardman Praying for you Cassie! You will do great!
Gail Magnus Cassie you will be so glad when you wake up after surgery tomorrow. You are doing the right thing! I ... Read more
Gail Magnus Cassie you will be so glad when you wake up after surgery tomorrow. You are doing the right thing! It's totally normal to be nervous and scared!!! We will all be praying and thinking about u. I'm so glad you are having surgery so you can get past the anticipation. XO. You're heart family here will be giving you strength tomorrow.
Jan McClain Cassie, we are all wishing you the best, sending positive energy your way, and will be waiting for ne ... Read more
Jan McClain Cassie, we are all wishing you the best, sending positive energy your way, and will be waiting for news of your recovery.
Kate Watson I know it is so scary , I'm just 4 days ahead of you and it's been a rough road. You'll bounce back q ... Read more
Kate Watson I know it is so scary , I'm just 4 days ahead of you and it's been a rough road. You'll bounce back quickly though especially because you have youth on your side. You've already figured out the important part about asking for help too. Just be very gentle and kind to yourself throughout this. Also I apologize if there are typos In my message, my medicatedhead isn't working so great :) Wishing you a successful smooth surgery.
Wanda Mroz Cassie best wishes for everything to go smoothly! You will do great and it will be behind you! I kn ... Read more
Wanda Mroz Cassie best wishes for everything to go smoothly! You will do great and it will be behind you! I know it's scary... Been there! Sending you healing thoughts and prayers.💞🙏🏻
I logged on tonight or this morning because I have been having a really hard time sleeping from anxiety due to the surgery. Has anyone else has this problem? ...Read more
I logged on tonight or this morning because I have been having a really hard time sleeping from anxiety due to the surgery. Has anyone else has this problem? Well anyway, it made it real to see my name on the upcoming surgeries. Does anyone have advice for how to prepare for the week before surgery? I am really becoming anxious about this and I would love any advice that worked for you or things you wished you would have done. Right now I am struggling with accepting the fact that I have to have this surgery now and at such a young age. I am struggling with the fear that I have of the unknown. I am struggling with not having control of this situation and I am most of afraid of going under and being afraid of not waking up. I know that everything I am feeling is completely normal but that doesn't make this easier. I could really use some positivity and good advice on how to get through this. Thanks to everyone who has helped me so far I truly appreciate it.
Tim Goff Hi Cassie,
It seems all so very surreal and daunting on the pre-op side of ohs, so your aren't alone ... Read more
Tim Goff Hi Cassie,
It seems all so very surreal and daunting on the pre-op side of ohs, so your aren't alone in that. For me I took charge of the things i could, requiring surgery was not one of them, but selecting the surgeon was one, as was understanding the procedure. With a bad mitral valve and swelling left atrium I was confident that surgery was the one and only choice. Beyond that I put together a "to-do" check list at home and work which kept me on the path to accomplishing those items and taking my mind off of surgery. I kept the list reasonable in size and didn't add to it unless it was a crucial item. Within 2 days of surgery the list was done and I felt at ease. Sure there is still anxiety about the surgery, but those things which I could control were done and those that were in the hands of the medical team and God I had faith in. To be honest the last day and evening prior to surgery I was totally at peace. I'm now 13 months out and feeling great so have confidence that all will be great post op. It isn't always easy, but you can do it, be confident and have faith! The heart brothers and sisters here will help you immensely as they did for me and so many others.
Tracy Simmons Hi Cassie. I think what you are experiencing is totally normal. I had some of the same thoughts, fear ... Read more
Tracy Simmons Hi Cassie. I think what you are experiencing is totally normal. I had some of the same thoughts, fears, and anxieties. You will be so relieved after the surgery, and as some others have posted, the pre surgery anxiety can be the most stressful situations in the entire process. I recommend doing whatever makes you happy, whether its a walk, a massage, time with friends and family. I tried to stay as busy as possible to get my off of the upcoming durgery, but its so normal for it to be always present in your mind. Have faith snd knoe you will be in my thoughts and prayers.
Denise Campbell Hi Cassie. Take each day at a time. Deep breathes in and out help with anxiety. You will do ... Read more
Denise Campbell Hi Cassie. Take each day at a time. Deep breathes in and out help with anxiety. You will do wonderful. You must believe that. I'm 50 relatively young for mitral valve replacement surgery. I'm almost 4 weeks post op. I did great. The nice thing is you won't remember most of it. 2% of the people who have these surgeries don't do well. That's awesome. Your young and I'm sure your doctors are great. And GOD will take care of you. Whether you worship or not God will take care of you.
Joyce Shelby Hi Cassie, prayers for you and that you will find comfort and peace with your upcoming surgery. I sp ... Read more
Joyce Shelby Hi Cassie, prayers for you and that you will find comfort and peace with your upcoming surgery. I spent a lot of time around my family and my church family as well as my friends. I also did a lot of reorganizing around the house and working on projects that I had been meaning to do. I spent time at the gym, walking on the treadmill. I also cooked a lot, trying a lot of new recipes that I don't normally make and inviting friends over for dinner. I'm 49 so my kids also kept me occupied. I am praying for you! :-)
Nicola Laker Cassie I've known I was due for surgery since I came home from holiday on January 29th to letters and ... Read more
Nicola Laker Cassie I've known I was due for surgery since I came home from holiday on January 29th to letters and numerous voice mail messages. It's been two months of seeing surgeon, professor regarding my WPW, my own consultant for an angiogram, pre ops and trying to get my broken tooth fixed before surgery. That has all taken my mind off what it's actually for. Now it has started to slowly sink in and I've had some very bizarre dreams about it!! I got my date of 3rd May yesterday and I'm getting quite anxious. The closer it gets I know I'm going to get worse so I've decided that the day's I'm not working , I'm going to fill up with doing "fun" stuff and catching up with old friends Hopefully this will tire me out so I sleep and keep my mind off the upcoming surgery. Hopefully it will work and suddenly it will be here and I won't have time to fret.
It's been good coming on here as everyone is so supportive and we are all in the same boat, except some are further down the river than us, but we will be there soon and wondering why we were so worried. ☺ xxx❤
Wanda Mroz You are experiencing the norm... Doesn't make it easier, I know all too well. I just made myself bus ... Read more
Wanda Mroz You are experiencing the norm... Doesn't make it easier, I know all too well. I just made myself busy, and at night I took a Xanax to help relax me... Prescribed by my dr. Just one helped. I worried, I prayed a lot... I focused on the positive stories and the fact that the success rates are over 98% for these surgeries. I focused on the fact that my surgeon was skilled and very well regarded... I took walks and while walking quietly prayed and took in my surrounding. Breathe... Deep breaths. You will get through this. We are all much stronger than we give ourselves credit for. Hugs... 💞
Trina Nuckols I can relate. I waited 2 months because of my mom's & husband's trips. So I was upset with them and ... Read more
Trina Nuckols I can relate. I waited 2 months because of my mom's & husband's trips. So I was upset with them and worried sick. I lost about 10 lbs, which I didn't need to lose. Anyway, I wish I would've really found some meditation sites. Deepak Chopra and Oprah have some that are helpful. Don't read too much online, that stressed me more. Deep breaths and walking.
Donna Chaney You are definitely not alone. I have had the same thoughts and emotions since my journey began. The n ... Read more
Donna Chaney You are definitely not alone. I have had the same thoughts and emotions since my journey began. The nurses took turns listening to my heart as well. But I prayed and asked for peace. Just gave it to God. I have surgery coming up this month too. And I'm just ready to get it over with. The posts and news of everyone on this site has helped me tremendously. Stay positive and prayed up. It's gonna be ok. You're gonna be ok. Cardiologist told me to take Tylenol pm or benedryl for sleeplessness. It worked. I'm praying for you. God bless.
Alina FH Cassie, try to think of all the reasons you have to stay alive: you're young, you want kids, you have ... Read more
Alina FH Cassie, try to think of all the reasons you have to stay alive: you're young, you want kids, you have a full life ahead - thinking about these things and visualising yourself in those happy situations you still have in your future will help. Always know that we do this surgery to stay alive, not the opposite. Your body and mind will strengthen if you think of all these positive thoughts.
You cannot be solely in control of this surgery, unfortunately: it's usually a trifecta between you, God and the medical team that work together to help you through. But do your part: think of the good stuff to come.
The best of luck! Stay strong! I'll be thinking of you and sending good vibes in the day to come.
Hi all. I am being moved up to ICU from the ER due to arthymias, heart rate, BP and the stress that has been put on my heart because my heart is around 150-170 ...Read more
Hi all. I am being moved up to ICU from the ER due to arthymias, heart rate, BP and the stress that has been put on my heart because my heart is around 150-170 (bpm) resting... I can hear everyone murmuring that there's a 22 year old that's really sick and has a bad heart condition, you should go listen to her heart.. and that bothers me. My question to you all is, if they think I should do surgery in the next day or two should I do it or should I wait till 15th? Please let me know your thoughts please!
Cassie, so sorry you are experiencing this. If they are recommending that you go in for surgery now a ... Read more
Cassie, so sorry you are experiencing this. If they are recommending that you go in for surgery now as opposed to the 15th, I think you should take it seriously. My father was admitted for surgery straight from a cardiology check up. They may be able to help you get the same surgeon you plan on having. Best wishes to you and I hope all goes smoothly.
Gail Magnus What makes you think that may be an option? Did someone in the ER give you that idea? My vote would ... Read more
Gail Magnus What makes you think that may be an option? Did someone in the ER give you that idea? My vote would be the sooner the better. Obviously I don't know all the details, but with the little I know I say do it.
Wanda Mroz I'm thinking the same... If they say do surgery now I wouldn't wait... The sooner the fix the better. ... Read more
Wanda Mroz I'm thinking the same... If they say do surgery now I wouldn't wait... The sooner the fix the better. I hope everything goes well.
Tina Maroon My vote is sooner than later if that is an option.
Jan McClain Try to make sure the surgeon you have chosen will be doing the surgery, not whoever is "on call". Ta ... Read more
Jan McClain Try to make sure the surgeon you have chosen will be doing the surgery, not whoever is "on call". Talk to YOUR surgeon Cassie, and follow his advice. We are all here rooting for you!
Hi everyone! I need some help right now.. I am having some second thoughts and I wanted to hear from everyone in the community on what their thoughts are. I ...Read more
Hi everyone! I need some help right now.. I am having some second thoughts and I wanted to hear from everyone in the community on what their thoughts are. I decided to stay in Boise to have my heart surgery at a hospital here instead of going back to the Mayo Clinic or going to Stanford because Boise is my home and I feel most comfortable here. I am receiving a lot of mixed reviews from my GP, nurses, cardiologists and family on who they think I should have operate on me. When I met my surgeon I was very pleased with him and he made me feel comfortable. But now I am second guessing myself. A nurse on Friday told me "Cassie you are 22, you need to do your research and figure out what is best for you and remember that you are only 22 and need to have the best surgical team." This is really getting me to think and wonder if operating in Boise is my best bet, or if I should go back to the Mayo Clinic, or Stanford, or maybe even stay closer to Boise and do Salt Lake or Spokane. The only reason I have been against this is because of the driving/flying of myself and family members and the financial aspect of paying to be out of state with hotels, travel, etc, instead of just staying where I am most comfortable.
Basically, does it truly make a difference to stay at a hospital that is a trauma center and the biggest hospital here with a heart institute, or should I go to one of the top hospitals? I am so confused and starting to stress over this. I am open to all opinions! Thanks so much everyone! I am so nervous, and scared. Being 22, through all of this has made these decisions hard for me, and I just want the best outcome I can possibly get.
Thanks again,
Cass
Rita Savelis Whatever decision you make is the right one for you. Stay where you are comfortable. It makes me sad ... Read more
Rita Savelis Whatever decision you make is the right one for you. Stay where you are comfortable. It makes me sad to think your family/friends are not supportive. Unless you have some wildly unusual procedure/problem - a good heart institute in your home town can certainly give you the surgery and care you need. There is no such thing as "the best hospital". I can not imagine traveling far away for surgery. Take care and go with your own instincts.
I don't know your exact situation, the backgrounds of the surgeons you have talked to, or many other factors that may be relevant. All I can share with you is my personal experience in which I chose to travel for my surgery 4 months ago.
I currently live in Las Vegas, and whenever I told somebody what I was facing the first thing they said to me was almost always, "You aren't having surgery in Vegas, are you?" Vegas is definitely not known for its medical superiority.
I was actually somewhat surprised when my parents, back in Indiana, initially thought it would not be bad to stay in Las Vegas, but they also made it clear that they would support me, including financially if necessary, to go wherever I felt it was best.
One thing that made my situation unique was that I felt that there was a chance my aortic valve might be repairable. One local surgeon that I met through a friend (but was not in my insurance network) said, "Your valve might actually be repairable, but you won't find a surgeon in Vegas that will have the skills to repair it."
My cardiologist (and friend) recommended I go to Cedars-Sinai, but she did recommend a few local surgeons if I chose to stay in Vegas. The top surgeon on that list told me (1) he only does about 50 valve surgeries per year (not a very high number, in my opinion); (2) he would never personally attempt to repair an aortic valve; and (3) he recommended a mechanical valve and would be happy to install an On-X valve if I wanted that, but he had never actually used an On-X valve. His words were, "A valves a valve . . ." None of those things made me (or my girlfriend) comfortable.
I felt like I would likely have a good outcome if I stayed in Las Vegas, but I felt like I had a chance of a better outcome with a repair if I went elsewhere, which I ultimately did. I had remarkably few problems, which could be a combination of many things, including the surgeon's skills, me being in good physical shape (other than the leaking valve), luck, etc.
I also did not find the traveling to be too bad. Sure, I was sore, but I learned pretty quickly how to move and whatnot to minimize pain.
I'm 34 and wanted the best possible outcome possible to continue living a healthy and active life, so I did what made me feel the most comfortable, which was to not have surgery locally. I felt like the added expenses, which are still stressing me out, and additional issues associated with traveling were worth it for me to go to a surgeon I felt could do a better job with my personal issue.
I'm not sure if that helps or not, but feel free to ask any questions you may have.
Wanda Mroz Good points made but I did a quick search on the Internet and it seems that you do have some options ... Read more
Wanda Mroz Good points made but I did a quick search on the Internet and it seems that you do have some options close to home. I was fortunate in that my cardiologist chose the surgeon most experienced in what I needed. Everyone I asked was in awe of this man and his patience and manner was awesome... I felt comfortable and went with my gut. I was not wrong. I would not have wanted to travel either, so go with what your gut says.. It is generally the right thing to do.
Cassie LaFramboise Rita, I have great support from family and friends, especially my fiancé. It's just they want me to ... Read more
Cassie LaFramboise Rita, I have great support from family and friends, especially my fiancé. It's just they want me to have it in Boise where my support system is and my home is. My home is my sanctuary and I know my recovery would be best being at home. I'm just so confused on what to do. I'm being pulled from all sides wehn jt comes to my medical staff and other medical personnel I've met from what they think I should do. My family wants me to stay in boise for the support system reasons and the recovery and less travel. I am wanting to make sure I am doing the right thing because I do have an unusual case... Well that's what the mayo clinic said. Should I even bother to make the calls to the Other places nearby?
Jacqueline Cook Hi Cassie. I had mitral valve repair surgery November 11, 2015 at Cleveland Clinic. I interviewed 4 s ... Read more
Jacqueline Cook Hi Cassie. I had mitral valve repair surgery November 11, 2015 at Cleveland Clinic. I interviewed 4 surgeons prior to making my decision: one local, Johns Hopkins, UPMC, and CC. While UPMC in Pittsburgh would have been the most convenient for my family, I would have preferred to stay closer to home, and I probably would have had a good outcome, I ended up traveling because of the surgeon's exemplary reputation at performing my particular procedure, the hospital's high volume of mitral valve repair surgeries, and 99% rating for successful outcomes. This is your heart we are talking about here. You need to feel confident in your surgeon and team going into that OR. Trust your gut and follow peace. Best to you, my heart sister.
Alina FH Cassie, I am trully sorry for all the jitters. I can relate to them 110%. I used to live in North Car ... Read more
Alina FH Cassie, I am trully sorry for all the jitters. I can relate to them 110%. I used to live in North Carolina where healthcare is top notch. Went to Duke for my genetic disease, etc.
Now, I live in the middle of the desert in Utah. I am older than you (40) but I still have lots of reasons to live for. So, when I was faced with having surgery in Provo, UT, I was a mess, especially knowing it will be a complex one, with my history.
I wanted to at least have it done in Salt Lake, or somewhere with more of a reputation. I trusted my cardiologist 100% but the surgeon was different: will they have the experience? Have they done enough of these? Will they have the technology? The staff, if something goes wrong?
That was until I met my surgeon, who was very highly (the highest I found from Utah) rated online and very highly recommended by medical staff everywhere I went for tests. Once I met him, I judged for myself and immediately I felt 100% confident.
I agree with Wanda ( although there are great points here, everywhere, from many folks): your gut will tell you. For me, when I met the surgeon, and I asked him hard questions and he aced them, I felt exactly like I felt when I met my husband: completely at ease. I thought 'this guy can operate on me in the desert with a knife and I know he'd save my life.
I am very blunt, so I asked him even questions like: how many surgeries like these have you done? How many of your patients died on the table? How many had strokes? How many recovered fully? He gave me numbers for each one, patiently and he never felt insulted or on the spot. He was just proud and confident of his work.
Then, he understood fully all my risks, because of my underlying genetic disease, which was a huge concern for me. I am 40, but the state of my heart and arteries is more like a 60-70 year old's. He totally got that.
So, a small hospital is not all you have to look at - do your research, interview, ask the really tough and very personal questions you must have answers to, and go with your gut. The 'right' one will win.
And if it should be away from home, it's going to be worth the expense for the rest of your life. Also, there are lots of people on this site who traveled for their surgeries, they have great tips on how to do it.
THE BEST OF LUCK!
Jean Raber Cassie, your age is working for you whatever you decide to do. Younger people bounce back faster. If ... Read more
Jean Raber Cassie, your age is working for you whatever you decide to do. Younger people bounce back faster. If health care cost/access is not an obstacle, I'm with Rita; do what your gut tells you. I'm over 60, have made my will, paid off my house, raised my kid, and would not be able to repay a big medical bill incurred by going outside my HMO. I'm satisfied that I would get good care at the regional hospital close to home. Plus, because I also have a rare blood cancer, I want to make sure the cardiac surgeon can easily consult with my hematologist.
Cassie, research your hospital and the skill of your surgeon. Visit a few different folks. I was plan ... Read more
Cassie, research your hospital and the skill of your surgeon. Visit a few different folks. I was planning on going to Cleveland Clinic, but stayed in the Dallas area and had surgery at The Heart Hospital at Baylor. My surgeon was excellent and I was very pleased. I had a simple surgery; no chance of repair on my valve as it was bicuspid. If you have a good hospital with surgeons who are trained in more updated techniques, that might work for you. Before surgery, I participated in web chats through Cleveland Clinic to research my options for surgery. I received feedback from Dr. Gillinov and nobody argued with me when I went to the local hospital. Also, Cleveland Clinic has an affiliation with the hospital I used. They provided extra training and support to the surgeons I used and also audited records. I had a good experience, but you have to find what will work best for you. Good luck!!
Jan McClain JEEZ LOUISE!!!! I just spent at least 20-30 minutes writing a post (never learned to type so slow slo ... Read more
Jan McClain JEEZ LOUISE!!!! I just spent at least 20-30 minutes writing a post (never learned to type so slow slow slow), I clicked the "Post" button, got the "Posting Now" message, and then......NO POST APPEARED!!!!
Jan McClain Okay, gonna make this SHORT. I traveled. Cleveland Clinic. Gillinov. Please, whoever you choose, if y ... Read more
Jan McClain Okay, gonna make this SHORT. I traveled. Cleveland Clinic. Gillinov. Please, whoever you choose, if you are hoping for a mitral repair, make sure it is performed by a high volume mitral valve surgeon (like 50 mitral valve surgeries per year, the average cardiac surgeon does about 5 per year) in a high volume mitral valve center (hospital). I have alot more I can tell you. If you are interested, send me your email and I'll send you my phone number. But be prepared, I have strong opinions (I also have a medical background and have researched this extensively). If you are even thinking of traveling for your surgery, consider Cleveland Clinic. But of course, wherever you go, make sure your insurance will cover you!
Today was such a surreal day. I am feeling so many different feelings after meeting the man who will be operating on me. Deciding the date as well was actually ...Read more
Today was such a surreal day. I am feeling so many different feelings after meeting the man who will be operating on me. Deciding the date as well was actually a great feeling. I wasn't sad about it, or scared, more of excited. But as I have read from other people, the emotions we deal with are such a roller coaster.
Not everything I heard today was good though, and I have accepted that. I found out that this will not be my only heart surgery, it is the first of 3-4 . We are going to go in and repair it now, but he said i need to understand that the valve will fail, and when it does that is when we will replace it with a pig or cow valve, and then we will do a mechanical valve if i need it. I really do not want a mechanical valve, and I have stressed that. I am just glad that we have figured out a plan for now. I am only 22, and I want to have kids, so mechanical is not an option for me.
I know a lot of you (from what I have read) have said to trust your gut when I choose my surgeon, so thats what I did. I wanted someone who was compassionate, and saw me as a human being, not just someone they get to cut open and fix. Dr. Jones treated me like I was his long lost friend, he made me feel comfortable and laugh. He reminded me that 22 year olds don't wake up in the morning thinking "Gee I want to meet a heart surgeon today" and that I have to make the best out of a shitty situation. He was also very adamant on trying to figure out what is wrong with me in regards to my two autoimmune diseases. He really focused all his time and energy into healing me. I am so grateful for that. Overall, today was a good day. I am grateful that I do not have to have an open heart surgery this time. He said that because I need a few more surgeries, he wants to hold off on doing open heart, because everytime you reopen someone's chest to do open heart, you raise the chance of them not making it, and I did not know this. I know that with the chronic pain I deal with, and all my other problems, that this will not be an easy recovery. But I want to accept that now, so that it doesn't come as a surprise when I am struggling. My parents are going to come out to take care of me, and my mom and their beautiful boxers will move in with me for a month or so and my dad will fly home to work after a week. I really believe that having the dogs there will help me so much. My boyfriend is taking this a lot better now. He has opened up to me, and talked about how he is feeling and that means so much to me.
Overall, today was great. I scheduled my surgery, connected with my surgeon, and even though I found out that this will not be my only surgery, I found clarity in all of this. I feel truly happy today, and I want to soak this in.
Keep pushing along, everything wonderful in life comes with the struggle to get there.
Alina FH Great attitude, Cassie! Keep it up and good luck! Will be thinking of you.
Wanda Mroz Wonderful attitude! Your surgeon sounds like mine... So much compassion and patience. It was a good ... Read more
Wanda Mroz Wonderful attitude! Your surgeon sounds like mine... So much compassion and patience. It was a good feeling to have a surgeon like that. Hugs
Gail Magnus Yay Cassie! I'm so proud of you...I had a feeling you would feel so much better after meeting w/your ... Read more
Gail Magnus Yay Cassie! I'm so proud of you...I had a feeling you would feel so much better after meeting w/your surgeon. I, like you, didn't go w/a mechanical valve when I was 30 yrs old because I wanted children. I was single at the time, but knew I wanted to be a mother. When is your surgery...did I miss that part?
barrett burris Good for you, Cassie! How courageous you are. Many things have helped me through my journey but the ... Read more
barrett burris Good for you, Cassie! How courageous you are. Many things have helped me through my journey but the top three are 1) Praise God for the existence of expertise and technology that will heal you, 2) Pray for the courage to accept the cure, 3) Keep telling yourself, "It gets better". When my anxiety level would get real high (i.e., "OMG, is this really happening to me? What am I doing!!!") I would keep repeating, "Jesus, help me" until it went away....and it always would. Learn to eat this elephant one bite at a time, and you're gonna be just fine. Keep the faith!
Today I meet my surgeon for the first time. Does anyone have any suggestions for questions I should ask him besides the obvious ones? Things you wished you ...Read more
Today I meet my surgeon for the first time. Does anyone have any suggestions for questions I should ask him besides the obvious ones? Things you wished you would have asked when you first met them? I am very nervous and I am wanting this to go well and hopefully ease some of the anxiety I am feeling. Thanks guys! You all are the best. Xoxo
Jean Raber I would ask him who is going to provide post-op instructions to your in-home caregiver and what equip ... Read more
Jean Raber I would ask him who is going to provide post-op instructions to your in-home caregiver and what equipment you might need (toilet seat riser, grab bars, etc. etc.). I honestly needed a good half a day to understand what was involved in taking care of my mom, and, because she was sent home with a Tele-health monitoring system, I had to reconfigure her bedroom to accommodate this stuff. It might help to know in advance what the plan is.
Barbara Adams I would have asked more questions about recovery and what kinds of pain or discomfort is normal. I am ... Read more
Barbara Adams I would have asked more questions about recovery and what kinds of pain or discomfort is normal. I am 7 weeks out from surgery,doing well but just added physical therapy due to neck and back pain. Recovery takes time! Your anxiety is normal. It will all work out. Praying for successful surgery and easy recovery for you!
Cassie LaFramboise Thanks! I will definitely ask him those questions when I go sign my consent form. Really appreciate i ... Read more
Cassie LaFramboise Thanks! I will definitely ask him those questions when I go sign my consent form. Really appreciate it.
Today was a significantly rough day for me. My LV continues to enlarge at a fast rate, and I was hoping to wait until the end of the semester to have my heart ...Read more
Today was a significantly rough day for me. My LV continues to enlarge at a fast rate, and I was hoping to wait until the end of the semester to have my heart surgery. Yesterday, my cardiologist told me that I can not wait that long, that I need to have the surgery very soon. I don't feel prepared for this, mentally. When I found out we were ready to do the surgery I was relieved, I had been waiting to hear that for 2 1/2 years, but now that I am being told that we need to do this now, I am freaking out. I am scared of going under. I am scared of my heart being stopped, and then restarted. I am scared of all the other factors of my heart disease coming into play during the procedure, and I am afraid of dying. I know these are all common fears and that what I am feeling is normal. I just thought I had more time, I didn't expect to hear that I can't wait two and a half months to have the surgery. I am too young for this (I'm 22), I have so much more life to live and I don't understand why my heart had to be this way. But then again, I have never been given the easy way in life, I have always had challenges in life but that is what has made me the strong woman I am today. I need to accept this, and I am struggling with trying to accept all of this. My fiancé is still in denial, he says that it is just like pulling a tooth... and that almost pisses me off. I know this is probably his coping mechanism, but I need him to understand the severity of the situation. On top of this, my oxygen has been decreasing as I sleep, so I was ordered an oxygen machine and it was delivered today. I went to my GP today because I have developed some sort of infection in my lungs, and he also read over my heart files. He has always been frank with me, and I asked him if I could wait to have this surgery, and thats when he truly told me the severity of my heart situation. He said, "Cassie, we always knew it could take a turn for the worse, and the moment has come, and we will prepare you as much as we can for this surgery." I wish he would have just said that I could wait, that I would be fine. But at the same time, I am scared that fixing my mitral valve may not stop the LV from dilating. And if it doesn't, then what? I hate not having control over my body, and what is happening. But I do have control over my thoughts, and how I handle all of this. I can do this, and I need to remind myself that I AM STRONG and I can and I will do this.
Elaine Cutri You are strong and we're here for you!
Barbara Laurie Cassie, hey kiddo, you know all your anxieties are normal, your brain says, "okay" while your emotion ... Read more
Barbara Laurie Cassie, hey kiddo, you know all your anxieties are normal, your brain says, "okay" while your emotions run wild. I'm 54 yrs Old born with a fairly rare heart defect. My heart is very enlarged, and my tricuspid valve is now more than 3 times larger than normal. Yes, right side of heart is not as dangerous as the left. It's one reason I'm still alive at my age! I have asthma, high BP (not related to my heart defect) and degenerative disc disease, chronic pain. My O2 levels drop at night (I live at high altitude!) so I use an oxygen compressor. Since long before I was your age I've had innumerable ekgs blood tests, echoes heart monitors etc. In other words, I truly empathize with your fears and frustrations. If your fiancé is not able to process your situation well, is there anyone else in your life that might? I know most of us need at least that one person who realizes that, at this moment , it's all about you and taking care of you. It's a major frustration that your body does stuff that you don't want, but this is Cassie right now. And taking care of Cassie means accepting and keeping on with your plan. I admit. As a Christian, I know my weakness is very real. My infirmity, my cowardice. But, when I'm weak, then I am strong, because God's grace gives me the strength. I can do all things through Him who strengthens me.
It sounds like you have an A Team of doctors watching out for you. Praying you will find someone to be there with you who can cope and comfort you. You can do this!
Hope your sleep improves with the O2 💕❤️💕
Praying you will have some peaceful days, and a good outcome. Best Regards ❣❣🌹🌹
Mary K Cassie, Barbara is correct, you need someone who can hear you. Sounds like your boyfriend is I'm deni ... Read more
Mary K Cassie, Barbara is correct, you need someone who can hear you. Sounds like your boyfriend is I'm denial. Do you have a trusted family member, girlfriend, or pastor to talk to? A professional counselor could be of great help. Most all of us have experienced feelings similar to yours, so this site is invaluable, but speaking to someone in person makes a big difference.
Whitney Nelson Cassie, I'm sorry. I know how hard all this is, I'm 30 and just over a week post-op. I'm not going to ... Read more
Whitney Nelson Cassie, I'm sorry. I know how hard all this is, I'm 30 and just over a week post-op. I'm not going to lie the first few days after surgery are awful but they pass by quick the worst part now is just trying to get comfortable. I was worried about being put under and the heart being stopped as well and truthfully once back in pre-op it all happens so fast you don't have time to think about it and the next thing you know you are waking up. You are going to be just fine and it's pretty nice being on the other side of it and healing! Best of luck to you!!
Cathy Slipski Cassie reading your journal you remind me so much of me. I am 36 I am a little over 4 weeks post. I f ... Read more
Cathy Slipski Cassie reading your journal you remind me so much of me. I am 36 I am a little over 4 weeks post. I found out about my mitral valve when I was 23 weeks pregnant. Long story short they took my baby 6 weeks early due to my pulmonary hypertension. January 25th I had my replacement surgery. I had all the same feelings as you. I was scared to die scared my kids would be left with no mother. I found myself leaving notes for my kids so they would know how much I loved them if anything were to happen to me. I was terrified of the surgery. I cried I was depressed I couldn't stop obsessing over the surgery. I Googled everything. Then the day came and I found myself so numb I couldnt cry anymore I showed no emotion till they wheeled me to the operating room and I said goodbye to my fiance and my parents in which I thought that was the last time I would see them. Then before you know it I was awake and everything went well and all that worrying that consumed my life or was all over and I was extremely relieved. You will do awesome! Everything will work out and you will feel so much better and you will get your life back!!
Gail Magnus Cassie, the time for you to have the surgery is NOW BEFORE YOUR LV FUNCTION gets worse. Yes, the who ... Read more
Gail Magnus Cassie, the time for you to have the surgery is NOW BEFORE YOUR LV FUNCTION gets worse. Yes, the whole situation sucks, however it is what it is and don't make it worse by waiting. I'm sorry for being so direct, but that's how I'm wired. This is a very very serious situation and you want to protect what LV function you have IMMEDIATELY. It kinda sounds like you're searching for a medical person to tell you it's OK to wait. But from what I'm reading you're not going to find anyone to tell you that. I'm 25 days post of from my second OHS. I was 30 when I had my first and 46 for my second. I would highly recommend taking something for anxiety, such as Lexapro. I've been on it for over a year and it has been a game changer for me. I can relate to nothing ever coming easy to me... but, you're right it makes you the person you are today and forces you to be strong. Get the surgery on the books!
Cassie, your thoughts are so aligned with many of us. Heart valve surgery is scary and frustrating at ... Read more
Cassie, your thoughts are so aligned with many of us. Heart valve surgery is scary and frustrating at the same time. It is scary to go under and have your heart stopped. It is frustrating that people we love don't always understand or are scared and don't know how to react. It is frustrating that these things happen to us at young ages especially. Listen to your cardiologist and take care of your body. That is the best you can do. Remember you have a ton of people on this site who are rooting for you! Hang in there.
Tina Maroon Cassie I too have had many of those same fears all my life. Especially the fear of dying. I hope and ... Read more
Tina Maroon Cassie I too have had many of those same fears all my life. Especially the fear of dying. I hope and pray all goes well with you and your surgery!!
Cassie LaFramboise Thanks everyone for what you have had to say! I know my boyfriend had talked to his best friend last ... Read more
Cassie LaFramboise Thanks everyone for what you have had to say! I know my boyfriend had talked to his best friend last night, and he finally sat down with me and said how scared he is, and how hard it is for him to worry about me and that it worries him knowing how scared I am and how badly I am doing. It makes sense how he is coping with it. I do have lots of people to talk to, lots of family and friends, but I was wanting him to understand the severity of it and I was just waiting for him to open up to me as well. As Gail Magnus said, maybe I am wanting to hear a doctor tell me I can wait, maybe I don't want to completely accept this.. I am 22, I shouldn't be thinking about these things right now, I should be acting 22, but the reality is that I am sick and I do need to accept this as hard as it is for me to accept. I meet with my surgeon tomorrow, and I look forward to telling all of you about it! I really appreciate the kind words, and the advice that you have five me so far. I am really lucky to have found this forum, and people who understand what it is like to be in this predicament. Xoxo!
Gail Magnus Yeah Cassie...you can do this...set a date and let us know when it is scheduled. I know it is REALLY ... Read more
Gail Magnus Yeah Cassie...you can do this...set a date and let us know when it is scheduled. I know it is REALLY REALLY HARD and NOT FAIR...but that doesn't make the severity and sense of urgency go away. XOXO
Cassie LaFramboise Do you have any advice for this appointment? Questions I should ask besides the obvious ones I have w ... Read more
Cassie LaFramboise Do you have any advice for this appointment? Questions I should ask besides the obvious ones I have written down already which i am sure everyone asks. I am just nervous. I have so many different opinions from everyone on who should do my surgery and I just want to go with what feels right.