So I got a call from my cardiologist last night and he told me he doesn't want me to have the surgery. He found that I'm having "hazing" in my lymphatic vessels in my chest area and abdomen. He said hazing is abnormal lymphatic vessels, but apparently, after talking to 12 other doctors and my surgeon, they all came to the conclusion that the surgery is too high a risk. If my surgeon were to accidentally hit/cut a lymph vessel, I would start leaking fluid that would either 1.) kill me or 2.) cause me to constantly leak fluid and I would be in the hospital for 3+ months due to needing the fluid constantly drained. I was born with Noonan's Syndrome and apparently this "hazing" is common in about 30% of people with Noonan's. I just don't understand why this wasn't thought of before even scheduling my surgery? My cardiologist apologized profusely (of course) saying he didn't notice it before. I can't really process what I'm feeling since I don't even know what exactly is wrong. I'm angry because I mentally prepared myself for this (I had known this surgery was going to happen since last May), I had time put off of work and I was ready to go. Now with just a week left he tells me "Whoops!". I can't be that angry, considering he saved my life but I'm just confused, worried and feel completely stuck. I had planned my whole year around this surgery and now everything is uprooted and all over the place. I have an appointment on Thursday at 2pm to talk to him and figure out what exactly is wrong and what the next step is... I will keep updating on here. This site has been helpful and I enjoy the community on here. Anyway thank you for reading I know it was a novel!
I haven't posted on here as much as I'd like to but considering I only have a week left I figured I'd come on here again for some last minute tips or words of encouragement. I had a strange dream last night, I was in the hospital about to go into surgery and woke up in my bed at home with my mom telling I slept through the whole week I stayed at hospital. I still had the drainage tubes attached to me and I went to some random yellow house where a different woman took out my drainage tubes and I remember it hurt, horribly. I went inside the house and the same woman told me I didn't go into a coma I simply slept for a week. Then I woke up! Such a weird dream that I really don't know what to think about it.. but it does make me worried about the drainage tubes since I've googled what they look like and I wanted to throw up they grossed me out so badly. Does it hurt to take them out? Are they in for awhile? I've been busy with work so luckily I haven't had much time to worry over what's going to happen during my hospital stay. I have a list of things to bring but I really don't know how to prepare for the little things that will happen like IVs, drainage tubes etc. if anyone could tell me about their hospital stay I would really appreciate it. I'm nervous but with the date so close I'm almost relieved that it'll be done soon, and then I can focus on healing and enjoying my new self 💪🏼❤️
2 weeks and 1 day away. I have a list of questions for my surgeon but I would appreciate tips on what I should ask, or bring to the hospital. Right now I'm bringing a button down pj top, my own pillow, and dry shampoo. Any other suggestions are greatly appreciated!