a blog without purpose

You want to do what to my what??

You want to do what to my what??

Oh hey look at that, it’s 2017. If you are reading this, than you made it. Congrats. I could prattle on and on about how 2016 was a Trumpster Fire and all the horrible shit that has happened, but what would be the point? If you want to read about that, go on facebook, I’m sure you can find an article or two. My patience for this has waned in recent months. It turns out when you lose an internal organ it gives you some time to reflect on a few things in your life.

Some people are aware of what has gone on with me the last couple months, but most probably don’t. So saddle up kids its story time.

Several years ago, while I was still in college, I went the Emergency Room with stomach pain. It turned out to be a minor GI problem (most likely due to poor life choices regarding unlimited pizza and fries in the cafeteria). But while they were trying to figure that out, they discovered some weirdness with my Kidneys. There was stuff… and it was all over them. When I returned home for summer break the doctors visits and testing began. I was never given a diagnosis disease, they eventually concluded that I have angiomyolipoma’s,  these are tumors that consist of fatty tissue, muscular tissue and blood vessels. They tested to make sure I didn’t have these tumors hanging out anywhere else in my body. I was told to keep an eye on them and if they grew too big to have them taken care of. This is something that is most often seen in women over 40.. so basically I am an over achiever.

So we kept an eye on them, and for the most part they just hung out and we agreed to ignore each other. Until about Christmas two years ago. When a couple of the tumors decided it was time to become assholes. They had grown large enough that intervention was needed. So I scheduled a surgery to have the doctor go in and embolize them. This basically means he shoved a tube into my Kidney and blocked off a bunch of blood vessels feeding the tumors. The point of this procedure was to shrink the little bastards back down.

I should mention the problem with this type of tumor and the makeup of mine specifically is that, they are very vascular (read bloody sacks of ass) so if one were to sustain injury or get a wild hair, it could burst and randomly start to hemorrhage and potentially put me in a life threatening internal bleeding situation.

So I get the operation… it went ok. I somehow managed to get high blood pressure out of the deal due to a complication involving a vessel that may not have gotten totally blocked off. I learned to live with this and given some pills. I am also told to just continue to monitor the tumors.

Fast forward the weekend before Thanksgiving of this year. Friday night, I had some mild discomfort in the kidney area that I was REALLY hoping was just gas. That lasted until Saturday morning, when I went from “hmm this feels not great…” to “Oh my fucking god I am dying! an alien is going to pop out of my stomach and tap dance across the floor “.  So off to the ER we went.

Pro tip: Writhing in pain in a wheel chair at ER registration desk will get you seen pretty quickly. I tell them about my little kidney decorations and explain I am worried there is a bleed. So they take some blood tests and send me to get a CT scan. I may have forgotten to warn the tech about the freak show kidney before the CT scan so it was awesome watching the look of panic and seeing someone get sent sprinting to the doctor. By this point I am high as a kite on pain-killer. They got the blood tests back and everyone agreed, “yup, your shit is broke and bleeding all up inside you”(not a direct quote)

Off to surgery I go. This is the same surgery I had 2 years ago, but this time they are going in with the goal of stopping the vessel from pumping blood into my abdomen. I get to be awake-ish for this process. The team of gentlemen were very nice. Luckily I had recently shaved my bikini line, so I was able to avoid that bit of unnecessary bonding with the dude who was my nurse. (They shove the tube through a hole they make in your groin area to access your femoral artery to reach your kidney. So you get shaved if you’re furry). The team did their thing and blocked stuff off and sent me to recover.

They give me a room and admit me for a night of poor pain management and lots of crying. By mid morning I am not feeling right and have a sudden pop and excruciating pain in the same area, so they start the testing all over again. It’s another tumor bleeding. So I go back down stairs to the same team and they go in a do it all over again. this time they block of 4 vessels, the day before they blocked 2. The team of doctors I have collected at this point are all twisting their hands and telling me this should do it. Except one : the interventionalist, the one who actually blocked the vessels is saying the kidney is shit and it should get tossed. The Urologist and nephrologist over rule him. So I get released, and I go home to recover.

Except, I didn’t seem to be getting better like last time. I was still weak, I didn’t feel right. I returned to work, I over exerted myself enough to scare me into going back to the ER to check if their was another bleed. (there wasn’t). At this point I now know nurses on site and they welcome me by name. I go back home, still feeling pretty crappy. I schedule an appointment with my general doctor to ask her why I feel so crappy. She does a blood test and sends me for an ultrasound. These come with poor results and she sends me back to the ER. She tells me that my body doesn’t have enough blood. This usually indicates a bleed. She reminds me it’s faster to go the ER to get the test done rather than try to schedule appointments that could take weeks.

There is something very disconcerting about hearing your primary care physician tell you to go directly to the ER. So off I was swept to the ER by my wonderful coworkers. After a short wait, I am taken in back and assigned an ER doctor. She actually took the time to talk with me about this whole shenanigans and I explained what has happened. She runs more tests and tells me going in for a 4th CT scan is probably not a  healthy idea given all the radiation I’ve been exposed to lately. She brings the Nephrologist, Urologist and Interventionalist into the mix again… the urologist rolls in and lets me know that it’s never good to come to the ER and be considered an interesting patient and I am a very interesting patient. my general response to this was “well…. shit.” This team of doctors is arguing about how functional it is to send me for a CT scan and try to block off (embolize again) the likely slow bleed that is stealing my blood away. One thinks it’s a waste because the kidney is shit, the other two think maybe the kidney is helping a little and we should try to leave it in there.

Fortunately, I have my family of medical professionals that are breathing fire into my cell phone telling me what to ask for and what they should do. Protip number 2: Always listen to and trust the nurses who are much smarter. On the advice of my mother who has 40 years of nursing experience, I asked the doctors, why they don’t just test the kidneys to see how functional each one is, that way they know if it’s worth keeping or should be tossed in the bin.

It was amazing to watch the light bulb go off in his head. It turns out, that between the three of them arguing about what should be done, it didn’t occur to them to actually check on the function even though it was the simple solution and would settle the argument 100%. So they send me to nuclear testing the coolest sounding department in the hospital that is totally anticlimactic .

Before I went it they told me we are hoping for at least 20% or more functionality on the right kidney so I can keep it for a bit longer and potentially delay the need for dialysis later in life.

I was able to watch the testing, they shot me full of stuff that can be seen on the scan and the left side is lit up like a Christmas tree, the right…. is basically a couple of dots and a weak shadow. It doesn’t look good. The stuff also makes you need to pee like crazy and you get to watch a clock that counts down when you can go to the bathroom. This is about 1000x worse than just waiting without knowing.

They read the results and tell me that the right side is functioning at a whooping 6% meaning the interventionalist wins and doesn’t have to do any more work on me and the fleshy bag of shit that’s stealing my blood. They had me stay the night for observation and are now arguing about when they are cutting this bitch out of me. I am on very explicit instructions that they will not be taking ANYTHING out of my body without my mother there first. They complied to this demand request They scheduled me for the surgery a few days later with a doctor who is familiar with the procedures and does this frequently. This is a better choice than getting stuck with the on-call doctor who is winging it because this got put on his schedule last min.

I get sent home, mom and dad show up to help. The hospital mails me a bunch of gross sticky wipes and tells me how to shower and clean myself with said wipes. Sitting in the waiting room is a weird experience, because you don’t know what to do with yourself. One of my amazing coworkers stopped by for moral support. It was wonderful and touching and a needed distraction from thinking about all the ways I could die on the table.

I go in they prep me and take blood samples. Eventually they knock me out I wake up and I have 5 glued shut holes in my abdomen. Turns out the tumors were so big they had to scrape them off of other organs to get it out. I asked to keep it and they said no, I was a little upset, they wouldn’t even take a picture. I spend another night in the hospital, and get sent home to heal. This went well for about 12 hours until we realized I have a bowel obstruction (meaning my bowels are shut down and refuse to work) and I get to go spend two more days in the hospital on an all liquid diet. I was finally released to go home Christmas eve, this is the best present I could have asked for. Since then, I have hung out at home doing the healing thing, while trying to walk a little longer everyday. My parents left shortly after I was released and my father in law came to stay for a week. I don’t think I would be in as good a spot as I am now, if I didn’t have this support system to help out. My husband has had to take care of everything and everyone since all of this started. He has done all of this without complaint and constant encouragement and love. I couldn’t be more thankful to be married to him.

So for about 2 months I have been in and out of the hospital dealing with this bullshit. It has changed the things I care about in life and what I worry about for the future. For 2017 I just want to love my family and friends and be thankful for the time I have with them.

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