That surgery that I hoped I’d have in December (MALS, Surgery & Leave of Absence)? It’s happening May 3rd! Not only is it happening, it’s happening all at once. I’m having a 3-in-1 major surgery. Half of me is absolutely terrified, the other half is absolutely thrilled.
I spent Thanksgiving – January in the outskirts of Annapolis, MD. I spent it with my beautiful friend Sarah, who I missed so much (4th of July, Beowulf; Senior Photo’s; Jalapeno Pepper Jelly), and staying with her was amazing. However. My first visit to the surgeon was incredibly disheartening. He wasn’t willing to operate based on my german scans and my german diagnosis. He wanted to start from scratch. Alllllllll the way back to square one. I cried. Actually, I sobbed. Thank God for Sarah & Tess.
I spent a whole day feeling sorry for myself, then picked myself up, put on my big girl panties and scheduled all the tests once again. I was very careful to leave myself a nice break around Christmas. Not only did I want to give Sarah a little break from me to spend with her family, I also wanted to go spend time with my family. Specifically Soren, Lindsay & my grandbabies!
Sarah works at American Airlines so on top of being my host, my support, my own personal cheerleader, she gifted me and Tess a friends & family pass to fly to Ohio. Thank goodness for a quick, short flight. I know I make it sound like I fly here-there-everywhere, and I do, but travel is incredibly hard on my body. Sitting is incredibly hard on my body. When I sit I squish not only my celiac artery, but also my left renal vein. Both my left renal veins. Because I have two. And two left renal arteries. And two right renal veins. I’m a freak y’all.
In fact, before I get back to the happy parts, I’ll get to that. My freaky anatomy is what’s causing me the pain when I sit, eat, breath. It turns out that in addition to MALS, I also have posterior Nutcracker syndrome (NCS). Not only do I have NCS, but since I have two left renal veins it’s a little more complicated. So complicated that while surgery is scheduled for May 3rd, my surgeon hasn’t developed the surgical plan yet. I don’t know if it will be tied off, stented, bypassed or if he will do an auto-transplant of my kidney to my pelvis.
NCS is also why my health has declined, and my pain levels increased, the more I lose weight. I’m losing weight because eating hurts due to reduce blood flow in my digestive system from MALS. The more weight I lose, the less room my renal veins have. The more those veins get squished, or compressed. It explains why I’m having fewer good days, and zero days without any pain whatsoever. Go ahead & feel sorry for me. I do! Poor me.
I’m blessed to have my own personal medic to come & give me IVs at home. It keeps me out of the emergency room, and out of the hospital. In the states I’m in urgent care or the ER at least once a week. Thank goodness for good insurance, though even with good insurance this year has been very hard financially. I will get a feeding tube as well, not only will this help with eating but it will help with drinking and greatly reduce the amount of times I must be poked.
Wow. This is long. It’s been too long. I soooooooooo miss the Studio. I miss my job, my team, all of you! As of right now, I plan to be back after summer break. They are slicing me open, sternum to belly button, possibly more. I’ll take time to heal and then I’ll be back. You can’t keep me from here forever. The Studio is my life, my baby, and I miss it with all my heart. I’m incredibly grateful to Angel, Manu, the entire team, for keeping it alive. It gives me hope.
I’ll share a couple photo’s, I don’t have that many but I do have some great ones, of the happy moments and one of a not happy moment.