Her Journey, My Struggle

A Shitty End to a Not So Shitty Year

2018 helped me. It's when a lot of healing happened after my sister passed away. I felt a lot better as a person and like I got closure. It's when "Ethan"and I decided to both be there for one another and both grow as people. It's when my "secret" was discovered and to be honest, I'm grateful that it was because I'm now in therapy like I needed to be since her death.

Yet, it ended on a bad note. 

We flew to Philadelphia early on the 26th and checked into our hotel late morning (before lunch). Then my parents arranged for an uber to take us to NYC (everything up North, I swear, is so close). We went to Central Park to the John Lennon memorial and I stood outside the Dakota. It was surreal and I didn't know how I didn't cry just standing there. I think standing there, it's something that can take your breath away and overloads you with so much emotion that you can't cry. 

 My parents also surprised me with tickets to see Dear Evan Hansen at the Music Box Theatre. I've never cried so much from seeing a musical. If you can see it, please. It changed me. I loved the musical before I saw it and I love it so much more now. My parents cried like babies and they usually don't get emotional from theatre like I do. (I'll cry at any production of Godspell, even if it's bad).

That was absolutely amazing. I had no idea that my parents planned this among the stress of anything else. It was all for my 18th birthday and I'm still shocked that they did this all for me. I mean I didn't feel like I deserved it.  I mean, they already got me a new iPhone, records, and an envelope with$400 dollars in it for my college deposit when I ready to decide where I'm going, for Christmas, and said that they're sorry they couldn't do more, when I had already been blessed. 

It was great until the 27th, when my appointment happened. I ended up getting admitted and was there until the 30th. My electrolytes were low and my iron too. They said at first that I probably wouldn't be there longer than a night but even after my levels were corrected, I was still having issues with my heart rate and blood pressure. 

With my electrolytes being like they were, they immediately questioned if I had an eating disorder and I said no. They mentioned that I had lost about 15 lbs since my last doctors visit according to the records. I admitted that I threw up a lot of what I ate and had stopped eating breakfast and lunch as a result but that I still try to eat dinner and a few snacks. 

During the admission, I had a GI doctor and nutritionist on my case and they made me monitor everything I ate and it was kinda excessive. I also had an IV, well 3 cause I blew two of them, and multiple infusions. I even got potassium infused because I was low on that and honestly, it does burn and hurt and I cried, not because of the pain, but because I finally got a small tiny glimpse of what hell my sister went through and there was so much she dealt with and that, I know, doesn't even cover it.

While admitted though, after my blood work was normal and they had tried their best to correct the other issues, I had multiple tests done. I had a gastric emptying test and an upper GI series to figure out why I throw up. I had multiple EKGs, an echo-cardiogram, and this fucking horrible test called a tilt table test where they basically made me fucking pass out. Not to mention, I had several doctors come in and test my "joint hyper-mobility" and then they took various blood samples to send them off. 

I got diagnosed with basically three disorders. One of them is subject to genetic testing (the sent off blood) to see what exact type I have but they're sure I have at least one of them. They determined that I have mild gastroperisis , a paralyzed stomach(why my sister couldn't hold down food), POTS (a form of autonomic nervous system dysfunction, or dysautonomia), which causes my heart rate and blood pressure issues, and what they think to be hEDS or hyper-mobile Ehlers Danlos Syndrome, now when the genetic tests come back, this could change, but it's a connective tissue disorder that can cause a lot of issues (basically caused the other two disorders) and it's why I've had issues with dislocation, heavy bruising, and even the blown ivs. 

They're sure that these disorders affected my sister as well. There's no doubt in their mind that she had all three of these disorders. They all likely manifested themselves a little bit but didn't really showcase until she put the heavy stress on her body with her ED and they became almost irreversible. However, her kidney disease was caused by the dehydration that she faced and I am not at a risk for that, nor am I with epilepsy as it occurred due to her brain injury that could've been prevented. It's very likely that her autonomic caused neurogenic bladder after her tube change due to the stress of going under anesthesia and that's why she was retaining urine that caused the infection.

A lot of the damage that happened to her were the result of malpractice. You can live with the disorders I have, they aren't fatal. They also think though that she had some type of immunodeficiency as well and that's why her infections always seemed to be untreatable but if she had been transferred, there was a high chance a solution could've been found. She had poor wound healing and her tore esophagus was likely from the hEDS due to fragile tissues that is sometimes a symptom. 

They know that the treatment of her gastroperisis was not valid. Yes, a lot of those with GP do have tubes but they never tried a medication ever for it. She maybe could've ended up being able to eat a little bit. 

All in all, what I learned over this admission is that the hospital killed my sister and even if there wasn't a complication with her 2nd transplant, they were going to end up killing her anyway. It angers me and the stories we told to the doctors here of them letting her starve basically until she withered away, and letting her continue to suffer with an infection that killed a fucking organ, they say that my parents need to sue for malpractice but my parents won't do it. 

I told one of the doctors about what happened to "Ethan" and they're disgusted. I'm disgusted. I mean I try not to drive by the hospital but sometimes I have to and I'm filled with so much anger. 

I'm angered at the doctors that instead of putting her on dialysis and waiting, they thought it was a good idea to put her back on the transplant list again and then a stupid donor showed up and something just happened and she bled to death. 

They should've left her alone since she was going to be transported anyways! 

I mean, I guess I can't be mad anymore, because what's done is done but at the same time, I don't have a younger sister anymore. Yet, they didn't see the looks on my parents face when they said they wanted to admit me. It was like they were reliving that horror movie. They didn't hear my mom cry in the attached bathroom to my room asking God to "not let it happen again". They didn't see my dad raise his voice at a nurse when she couldn't get an IV in initially because "he wasn't going to have another medical professional mistreat his girls". They didn't hear the thoughts inside my head that I had all throughout the admission and hear me talking to my dead sister, asking her how she made it through this shit. 

For me, I met with a nutritionist before I left that was like it's obvious you're not taking in enough food and so they prescribed me Ensure drinks to supplement what I can eat and set out a guideline of foods that are safe for GP. They want to keep me away from a tube. The cardiologist put me on a medication to try for my POTS and I'm supposed to do PT but we have to find a physical therapist that can work with hEDS patients and they prescribed me when knee and wrist braces and gave me a link for finger braces (yes fingers) as those are my most unstable joints that like to slip out of place. 

Basically it's just symptom management for me and trying to make sure I eat enough. I have to come back in February for follow ups and to get the results of my genetic testing. 

I hope you guys have a good new year.I don't know what to feel. I'm supposed to be going out with "Ethan" tomorrow as a late birthday thing, but I'm not sure if I want to leave the house. I'm just bummed. He's coming over today though, which I can look forward to.