Sannah

So, I called the cardiologist who I met I the hospital As many of may know my heart has been having trouble. I have been waiting for my surgeons office to call back. They have the knowledge That my bp and pulse where low and then shot up too high again and not a word. Great news that I will see the cardiologist Monday. I luckily was able to speak with a nurse. I now know how to care for myself over the weekend. The bummer part is I learned some information that no one has told me or any of my family that was at the hospital. My heart was having trouble irregular beating during and since surgery- according to my tests. Why wasn't I told this? I understood I was on bp medication because the stress of the leak caused my heart to be bothered. . Apparently I am on medication for blood pressure and to keep my heart rate at a healthy level. I was given guidelines for the medicines I have on hand and guidelines for when I need to head to the ER. I have tried to be patient, I listen to everyone and try to understand. I try to ask all the questions I can so i understand what is happening and how to get better. I challenge ethics.... Why was I never made aware of this? It is unsettling to me. I realize that I have used pain meds and often these impair ones ability to comprehend. But not one of my families recall this information being shared. Isn't it my dr job to share this information with me?!

Thank you for the continued support. I will go to the we if my next bp and pulse aren't better. I will keep you posted. Thanks for posting and helping me through this hard and scary time.

They are so much fun!! Aren't they? They are so in the moment!! It's great. I hope to get back to being able to care for her alone soon. Not being able to nurture her and meet her needs like normal has been SO hard. She is getting ample care from my husband, sister and mom. But I can't stand that I have not been able to do all my mommy duties. I think it's probably harder on me than her. At 16 months she won't recall this time period. Right?

Yes. She is so amazing. She is giving my daughter a bath and getting her ready fun bed. I am so thankful for her.

Me too!! What a relief!! Still feel light headed, but not as bad.

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?