Cassie's Journal

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.

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
"

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

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.

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 😊

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.

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!

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

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.

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

Just had my breathing machine delivered today! And still rocking my portable heart monitor! Never thought I would look like this outside of the hospital, haha.

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.