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.
Good luck and positive vibes in all your upcoming trials and tribulations! Hugs.
We miss you, too, Toiny! So glad that you finally have a date for the surgery — will be praying that all goes well — take time afterwards to fully get your strength back!! Prayers & {{hugs!!}} always!!
I can’t even begin to imagine what you are going through.
All the very best wishes for your surgery!
You have been in my thoughts so often!! I’m grateful you are getting the help you need and will be back to full power before you know it. We really miss you around here, you are so lucky to have such an amazing team at the Studio! Hugs and prayers
♥
Oh yes, we miss you too Toiny. I’m glad and happy that you finally have the surgery date. Hope that all goes well and that you fully recover. Take your time to heal and take care. Big hugs!!
We miss you too Toiny, so glad you finally have a date for the surgery. Hope that all goes well.
Take your time to recover. Big hugs!!
Oh wow all the best for the big day, coming to you from
Christchurch new Zealand
Good luck to you!!! Full of positive thoughts for the months to come…. And full of hope for a serene healing
Praying that all goes well with your surgery and speedy recovery.
So pleased you finally have a date for surgery. Sending you prayers and hugs from Australia 🦘🐨
The place hasn’t been the same without you! Hope all goes well and you have a speedy recovery. See you soon!
I’m so sorry for you !!!!!
Hope you will be beter after……. and see you soon.
Sorry you have to go through this, but happy to know you will be so much better afterwards. Hope you have a speedy recovery. Miss seeing your notes. Best wishes.
I was wondering how things were going for you. Good update (that things are on track for getting those pesky problems addressed)! Will continue to keep you in my prayers. {{hugs}}
Oh my, you certainly have a lot on your plate! So glad that you have a supportive family and that you are getting the care that you desperately need. Best of luck with your surgery; I hope you are as good as new when recovered!
So glad to read that you are finally moving forward… You rescheduled all the tests, but you do not say if you continued with that doctor or found another…. anyway, I guess it makes sense, not to run with someone else’s opinion, but how disheartening!!!! Glad you have so many people around supporting you…. Prayers are of course going out to you…. Thank you so much for the update, and you are so terribly missed… Liz (easyeyes4you)
Thanks for the update, I’ve been wondering. Dane has incredibly grown into a handsome young man. Photos are excellent, I’m sorry you are having to deal with this. Sending you many prayers and blessings. Love you – Mika
So sorry that you have to go through all of this. I am praying that the surgery will bring you relief.
Take care!
Best of Luck, the people here are amazing but your touch Toiny is missing!
So glad to hear you have a date. Praying all goes well and you will be back home and in your happy zone soon.
I have missed your fun stories and photos. Glad to hear that you are progressing with a date for surgery. I’m sending prayers for you and for your surgeon.
Hope your surgery went well and you are now on the mend. You’ve been in my thoughts & prayers.
I hope your surgery went well and your doing better. I really miss you at the Studio. Take care and hopefully you’ll be back in the fall. Sending you hugs!!!