Ohana Means Family.

 It feels like the rest of the world is spinning around me, like everything is normal, and I'm over in the corner in the fetal position trying my best not to throw up from it. 

Back in May of last year, when I threw up a little bit of blood one time and went to Urgent Care, I was hopeful that would be it. One round of antibiotics, and then I'd be done. Unfortunately, that couldn't have been further from the truth. 

In my CT scan they found that I was missing the portal vein, which I've since learned is pretty damn crucial for the well-being of the human body. How have I learned that? Tests. Soooooo many tests. Three trips to the Emergency Room since my birthday last year, and that was in December. My arms are scarred from all of the IV's and blood draws. At one point, at midnight in the ICU, the IV specialist had to bring in a sonogram machine for veins just to find one where she could insert a second IV line. She also had to snake the needle in and back out... and back in... and I was BAWLING. I have never once cried during an IV injection until that night. 

Long story short, I've been diagnosed with a chronic illness. Congenital Absence of the Portal Vein. Plus hypersplenism, portal hypertension, anemia, severe clots in my lower abdomen that I was put on a heavy anticoagulant for, low platelet count and the list goes on. Day before yesterday I had my tenth EGD plus banding in the hospital again. The doctor put 6 new bands in, which is the most they've ever done at once, and so the last few days have been alllllllll about recovery. Yesterday I got a heart monitor that I have to wear 24/7 for 30 days... and then I had a complete mental breakdown. 

Because this stuff is hard, and scary, and exhausting, and the pain is persistent, and I have a good day here and there but for the most part my day is centered around making sure I can keep food down and take my medicines on time. I have a whole new level of respect for people with chronic illnesses of any kind. People have also told me I look good and seem to be okay -- which is always a little frustrating because inside, I feel HORRIBLE. 

I have a fantastic support system, though. Parents, family, friends, friends of friends, teachers, doctors, hospitalists, etc.

And as of yesterday... my step-dad and step-siblings!! 

Congrats to my mom and Andy, who got married in their living room yesterday!! 

I'm the middle child now, and the luckiest one because these two changed their wedding plans several times just because there was no way to know when we would get a call that required us to pack a bag and go see a specialist somewhere.

Living room or not, I love these people. 

<3

At the end of November of '22, I spent several hours in isolation at the hospital because I was coughing so hard my chest pain was kicking. my. butt. I was negative though, and that was a huge win.

Not long after that, I was hospitalized again for throwing up blood. I spent a week in the ICU, and then switched to two different rooms in sixteen days. Yes, you read that right. 16 days in the hospital, including Christmas and New Years. But calls from doctors didn't stop, so I spent a lot of time on the phone scheduling what felt like a million different appointments. 

A huge thank you to my dad, for coming to visit me every day no matter what... and bringing Ginger Ale for a toast to 2023. Visiting hours ended at 8 p.m., so we celebrated early. 

And of course my guy, for helping me brush my teeth from my bed and taking care of things at home. He helps me walk when I'm dizzy, makes sure my IV lines don't tangle, and reminds me that being sick like this won't last forever. 

Which is great because just keeping up with everything is absolutely exhausting. I finally put together my medical binder with tabs for each different hospital or specialist I have to work with. Keeping up with constant changes to prescriptions and remembering which ones I can take and when, because they can't do certain surgeries if I have certain medications in my system. I also have to drink viscous lidocaine for pain, and if you've never had it you're lucky. It has the consistency of honey, but tastes like burning plastic. Keeping it down is a task on its own. 

OH! And they've added something new. I'm on a cardiac monitor 24/7 for the next 30 days and the phone logs all of my symptoms and sends messages to my doctor when there's a big change. My cardiologist wanted to do it because my echocardiogram was abnormal and my blood is clotting. It sticks to my chest and I have to stay within 30 feet of the phone every minute of every day. I'm also drinking more Sprite than I have throughout my entire life. Or as Papa Perez would call it, "Bubble Water," because that's what I called it when I was a little girl. I think of him and my grandma every time I take a sip, and it feels a little more like home.

When I AM home, this sweet boy doesn't leave my side. He'll climb on the couch and lay at my feet, curled up and lifting his head every few minutes to make sure I'm okay. 

Fair warning... the next photo is a liiiiiiiittttttttttle graphic. 

They put me on an anticoagulant when they discovered clots in my lower abdomen, and EVERYTHING made me bleed. My mouth tasted like iron, both my IV's were bleeding through the tape, and I felt disgusting. 

But for all the bad stuff, there was a lot of laughter and a lot of love. Cards kept showing up and I absolutely loved hearing from the people who sent them. Thank you a million times over. 

I don't know how many hours my mama has put into this journey, but it's too many and I hate that she has to go through this right along with me. Having her there, though, is so comforting. Thank you mama, for everything you've sacrificed so I can feel better. Thank you for calling doctors, helping with my FMLA paperwork, giving me rides to and from labs and INR tests, bringing me Starbucks in the hospital after I got tired of hospital coffee, and just sitting in waiting rooms every time I leave pre-op and get into the operating room. 

Tomorrow, my parents will pick me up and we will drive down to OKC to meet with the Liver Transplant team. This is something I've been waiting on for a while now, and I'm feeling a lot. A lot of excitement, a lot of relief, a lot of anxiety, a lot of hope, a lot of everything. 

After we meet with them, I'll be back home for about half a day before we leave again to go to KU Med in Kansas City, where my doctors referred me as an urgent case. 

I don't know what to expect, and that's very scary to me, but I know that this is another step closer to not feeling so sick all the time and I'd do just about anything for that. 

I can't wait, and I'm scared at the same time. 

That seems to be a big vibe for me for 2023. 

PLEASE DONATE TO MY MEDICAL FUND IF YOU CAN!!!

If you haven't already, there is a GoFundMe page open to donate to, but there is also my personal Venmo and Cashapp! GoFundMe takes a percentage, but Venmo and Cashapp go directly to me without fees, so please consider that option as well!

My Venmo is @HannahTobias17 and my Cashapp is $HannahTobias17

Anything and everything is a huge help, and means a lot to my entire family and myself. 

Hopefully the next time I write, I will have more answers. I am struggling significantly with fatigue, so I should let you go and get some rest. 

Please hug the people you love, and love them a little extra.

Thank you, goodnight, and be kind.