Sannah

My pulse has came back up to 60. Yay. I hope it stays. This is good news that I am happy to report.

I will. I feel scared. It's worrisome. I am going to monitor my bp and pulse. I will keep you posted. B

I called them right away . I was told to stay away from the heart meds Stop them all and immediately. Also to stay home and drink alot of Gatorade. I am at home resting and getting Gatorade in. But I feel miserable. I have never had heart problems until this leak, when my heart started collecting Fluid. It feels miserable.

Today has been hard. My heart is acting real strange. Last night I was having a racing heart and it felt real weird-irregular. I was real light headed. As the day has progressed my bp has dropped 108/70 and a pulse of 46. This is not a typo. My pulse is low. I feel strange. My vision is worse. I called the dr and they said away from all heart medications. To drink a lot of Gatorade. It feels scary. I feel light headed and weak. I hope that you guys are having a good day!!!

Thank you kindly. Thank for wishing me well I am reading everyone's post and I always feel so good and supported.

Hello, So the surgeon was defensive and apologetic. I was able to express my feelings and concerns about how she treated me. It was a hard conversation. She has a physician assistant (PA) who has been of great help to me. He was present for this conversation as well as my husband. I surely wouldn't prefer to have surgery with her again. I believe that people deserve a second chance. But I also don't feel comfortable with someone who treats me the way she did. It's a hard place to be. I am feeling lost and I know I have some thinking to do. The ball is rolling on changing over to another surgeon for all follow up care and potentially having my gallbladder removed. I still not allowed to eat- maybe in a week or two. I have not been allowed food since dec 4. Yes I am chewing and spitting. The dr knows and so does my counselor. Both said its okay and normal, and just be careful I was able to get my midline out!! Yay. No more picc or midlines. My blood pressure is too low My heart is beating irregularly I was told my nausea and vomiting should go away in a month. These meds are brutal on my vision. I have transderm scop patch, promethazine-oral and suppository, zofran. A while ago the pharmacist said I can't use zofran because it is messing with the different waves in my heart. I am going to go see the cardiologist. I can drive if someone comes with me when I am not on anti nausea meds. I need to make sure I am approved with another surgeon before jumping ship. This process has already been started. I also went to counseling after seeing the surgeon I had a longer appointment than normal. Went for 90 mins. I am finally realizing I am going to be okay. I need to make sure anyone who is involved in my care is supportive and someone I can talk to without judgement.

My leak symptoms weren't typical. I had a low and dull back ache. I had one night of chattering jaw and shaking muscles in my back- I was super cold. My body would sweat, like enough sweat that my bedding was wet. I looked so good when the surgeon saw me, she was convinced I didn't have a leak. She seemed to be in shock I had a leak with how well I looked. The most important thing to take from this always listen to your body. You know it best and seek help accordingly. It's always better safe than sorry especially with these types of complications. Make sure you advocate for your self. Your gut is a strong indication of what you need to do. I wish you the best and hope that you never walk down the same road as I.

Thank you so much. I want to be calm centered and be able to state what I feel in a relatable way. I hope I can experience success like you did!!! I hope you are having a good day Best, Sannah

Getting ready to go for my follow up with the surgeon who was loud and very verbal when she said, " We'll, that's a stupid questions." I hope our talk goes well. I will be talking to her about this before we talk about my body. It's not easy but must be done. I am prepared to walk away from her care if she doesn't show she cares and apologizes. Her behavior is inexcusable in my opinion. It's not ok to behave this was on a professional setting. Wish me luck!!!

Barium!! I can so that!! I will advocate for this!!! My body can't handle too much more. It's been through a lot!!! Yes!! I hope to join you soon!!! 25!! A little play?! Sounds like fun!!! The Wizard of Oz one of the best classics. Do you eat food now? Did you ever chew and spit?

The PICC line is miserable. When it was installed, they went too far into my heart. It was real hard to cope with. I am happy to now have just a midline. I can't wait to have the midline out!!! That will be the day!!! I am allergic to the clear stuff that is used for the swallow study. Barium I can handle. I don't like being loaded up on Benadryl for the swallow study. It's just not ideal. I am sorry to hear your son had to go through all of this. I am thankful to hear that he has his grandma and dad around. It's so hard on the kiddos!!! I am having a brain problem. I just read your message and went to reply and can't remember everything you wrote and I wanted to reply. I think it's a good idea to get the emotions out. Thanks for being here!! The road is rough and I am doing all I can. I get to see the crazy dr tomorrow. Yay!!! I have decided I am going to follow up with the cardiologist. I have never had heart problems until this surgery. I had the Fluid on my heart. Then high bp. This is all so new to me. I am on ten pills a day for my heart. It's weird and I don't like it. I need to learn why all this is happening. The waves that they measure in my heart are off. I had this surgery to get healthy and improve the quality of my life. Right now I don't feel better. I hope your day is good! Best, Sannah

Hey Iggy, Thanks for writing. I can say today is the first day I have felt that I will be okay. I think its because I am able to chat with other leak survivors. The hardest part of this for me is not being able to nurture my daughter like I would normally. You're a Mom and it sounds like you know and understand what I am talking about. I believe your son is school aged. My daughter is 16 months old. I pride myself is being able to care for her. I want to nurture her, be hands on and grow with her. My Mom, sister and husband have done an amazing job at caring for her. I know later in life she wont recall this time period, but it just wears on my heart. I cry a lot because I miss being able to care for her. I want so badly to be healthy enough to do everything I need to with her... but for now its pretty painful for me. I am most certain you can relate. I am so sorry to hear your son has suffered through this ordeal. I can only imagine the poor guy and how he is feeling.I hope as time passes he heals with you. Your here to stay with him!!! I am so happy to hear you were able to have the claw and not endure the stents. The stents were miserable to say the least. I had two stents for 6 weeks and then I was supposed to have another procedure to have the claw put in place. I woke up while the surgeon was physically pulling both stents out.. It was very miserable... I wish this on NO ONE.... I completely relate to feeling like I lost myself. I feel so lost and broken and I am starting to have moments of hope. I think this forum as really been the main reason I am feeling good today. What a relief to talk with someone who has been here. Tomorrow I am going back to day treatment for nourishment. I was going everyday and it would take five hours. I am now going every other day. I don't know when I will be able to nourish my own body. My dr has been so rude... It was just this last appointment. I am going to talk to her about my feelings and how I have been treated by her. I am talking to another surgeon already.. But I want to make sure I have care before I leave... I don't want to burn a bridge if I don't have a back up plan. However, someone who works for the hospital is now advocating for me. She feels it will be no problem for me to transfer care. My advocate said I have start the process. I have been taking a few breaks a day to listen to some music and to be present with all these emotions. I have my family, friends, husband and I am so thankful for them. But sometimes I feel like I need to check out for some music therapy. Sometimes i am not sure where to look for strength to push on. But I cant help but to look at my baby. I want to be here for her. My leak didn't present with typical symptoms. I had a dull back ache. For a few days now my back is hurting and this cares me. I am sensitive because I have endured so much. I realize there are so many reasons I could be feeling pain in my back. But I am paralyzed by fear, afraid to tell the dr or nurse tomorrow of my pain. I ended up taking pain medicine tonight... I have not taken any in a while.I have to tell them, because I have to be safe... but I am scared of more swallow studies (Its rare but i am allergic to the clear liquid they use), so they give me tons of benadryl and keep a dr near by. My face goes numb, and i get light headed- like i may pass out. I am trying to focus on the positive. I don't have a fever and I only vomited once today. I have lost 60 pounds, but it doesn't feel good. I worry about my heart. I have never had heart trouble... I started collecting Fluid on my heart and then my blood pressure went crazy. Currently I am taking 10 pills a day for my blood pressure.. its insane... who does this? it scares me...my heart has started to beat irregularly... I have no idea why this is happening... So a few good things.. even though it doesn't feel good 60 pounds gone is great!! My Silky Terrier can now sit on my lap. I am learning a lot about myself and how strong my friendships and marriage is. I am surrounded by truly amazing people. Thank you for writing, listening and allowing me to feel like I am okay. My family and friends are so compassionate and loving... I can not deny this.. but I need to talk and relate to someone who has done this and been to the bottom of this pit. Wishing you only the best! Best, Sannah

Hello, Thank you so much for your kind words. I read them and it allows me to feel good. I am so thankful to have your support. The road has been long and I am getting by. After reading of all of this support today for the first time I was able to feel like I will be okay. I hope your journey is smooth sailing!!

Your message is heartfelt, really warmed my heart.. Thank you so much. I really appreciate this. I have struggled so much through this journey. I know i am going to come out on top and be a better mom, wife and human, but it's hard. I am so thankful for people like you who wish me well and offer support. How has your process been? Are you well? If ever can I can be of support let me know I am here for you as well. This road maybe be rough, but we can accomplish anything we put our minds too!! Thank you so much for the message. Best, Sannah

I want to mention one other thing. This leak was and is without a doubt very hard to deal with. But if you have the love and support of your family and close friends it will be easier. I have really had to lean on those around me. We've shared some very intimate moments. I thought I was going to die and we talked it out. I felt like running away from everything. I have even had small victories. But no matter what someone has been here holding my hand and helping me to be strong and loving me thru it all.