PICC Line Malfunctions

*Just a warning some of the pictures in the post will be somewhat nasty*

"The Lord delights in those who fear him, who put their hope in our unfailing love."

-Psalm 147:11

     I have a PICC Line. It is basically an IV that is inserted into my upper arm and is semi permanent. Because I have to have 24/7 access the PICC line was a great option for me. Last week during my dressing changed we realized I had started developing a reaction to the dressing, or tape we put over the line. My skin began blistering and draining, in all honesty it was miserable and gross. We were watching it closely for signs of infection but I never showed any. I never had a fever, my arm never swelled, the site never turned red it was just irritated. Well Saturday morning I looked at my site and it was super gross and nasty. This line leads straight into my heart. I was not about to take any chances on infection so I decided it would be best to take a quick trip to the ER. I should have known trips to the ER are never quick for me. 

That's what a blood clot looks like.
Terrible picture I know, but still
kinda cool.

     The triage nurse was extremely rude saying I was over reacting and it was probably just a skin allergy that was causing the drainage. I reminded her again that this line went straight into my heart and I wasn't willing to risk anything. She rolled her eyes and told me that I looked fine and they would probably send me home in a few minutes. I told her that would be fine if that is what the doctor decides is best. She also said that I should stop seeking attention by wearing a mask. I am immune compromised, I have ZERO immune system and I was not about to hang out in a hospital full of snotty flu humans without some sort of protection. Again, she rolled her eyes. 

     The nurse who has seen me before came and moved me from triage back to a room. The PA came in and looked at my line. She said it didn't look infected but she's also never seen a site with that much drainage. So she called over the ER Doc. I was worried because he's a new one I've never seen before. He took two seconds to look at it and said "something is definitely not right." He ordered several labs, cultures and lots of imaging. 

     First up was an ultra sound of my line. There was a student so it took quite a long time. We were chatting and then she went quiet and pointed to something on the screen. The actual ultra sound tech came over and typed something and then I was taken back to my room. That's when I knew something was wrong. The nurse came in to start a second IV he told me we were going to have to pull this PICC line which was fine with me at the time. They could find a vein to get a second IV they dug, I cussed, we all gave up. 

    The doc finally came in and told me it's confirmed two major blood clots. One was inside the line and wasn't occluding much, but the second was around the outside of the line so very little blood flow was getting past the clot which means the line had to go. Pretty immediately. The international radiologist came in to place a new PICC. He was the one that placed my very first one. He's the bestest. He pulled my old one and went to place the new one. They use an ultra sound to find the vein they are going to put it in. And even with ultra sound he could barely find the veins. That's when my once favorite IR Tech became my least favorite. He told me we had to place the new line WITHOUT lidocaine. He did it super fast but not without me cussing... a lot... like a lot a lot. 

     I was then started on a very high dose antibiotic Vancomyacin. It's biggest side effect was Red Man's Syndrome. Awful. That was over after an hour and we started a second one just to be sure. I was discharged later that night with an oral antibiotic and a very very sore arm. Thankfully I got news that my cultures had all come back negative which means the infection never reached my blood stream! 

     So that was my weekend. It was rough but I made it. 

With Love, 

Elizabeth <3 

A Letter To My Nurses

"This is my commandment, that you love one another as I have loved you."

-John 15:12

     To every nurse I have had, thank you. Your hard work and dedication to your patients hasn't gone unnoticed. You have all spent countless hours responding to my call light, checking on me when all the monitors start beeping loudly, priming my IVs and fixing the pumps when I accidentally break them... three times. You have all shared in my triumphs and set backs. You've given me a shoulder to cry on when I just didn't think I could keep going anymore. You helped fight for me when doctors were stupid and trying to move way to fast. You have walked the halls with me and stood by my bedside in prayer. I'm tearing up just thinking about all that you have done for me and all of your other patients. 

     I know your days get long and not all your patients are as awesome as I am. Thank you for not bringing your frustrations with other patients and doctors into my room. For always being positive when you walk through my door even though it was probably difficult for you. I forget that you guys spend as much time on the phone fighting with my doctors and case managers as I do. I appreciate that more than you will ever know. 

     Nurses are the heart beat of the hospital and they don't get enough credit. They are there day in and day out. You have all brought me pudding cups at three in the morning because I was on steroids and starving. You have all brought joy and smiles into otherwise dim ICU rooms. Hospital admissions are hard, they take a toll mentally, but my nurses did everything they could to lessen that. 

     Thank you for all you do. Not just for me, but for all your patients. Your hard work doesn't go unnoticed. 

With Love, 

Elizabeth <3 

Bringing In 2018

“In his heart a man plans his course, but the Lord determines his steps.” 

-Proverbs 16:9

     I rang in the New Year with a raging party from my hospital room. Okay, so maybe it wasn't a "rager". Okay fine, I fell asleep at 9:30 and woke up to my alarm at 11:55, watched the fire works (I have the best view of the strip by the way) and then promptly fell back asleep at 12:15. Even though I wasn't able to bring in the New Year with shots or party hats I still had a pretty great night. After 19 days, yes you read that right, of only being able to take bird bath showers. I was finally able to disconnect from everything and take an actual shower. It. Was. Magical. Being in the hospital for this long really impacts your mental health no matter how positive you are. Being able to take a shower and put on clean clothes last night really gave me the boost I needed to make it through the next few days. 

     The doctor started the discharge paperwork yesterday. But because there is so much that needs to be coordinated to get me home I don't think I'll be getting out today. I'm think the process will probably start tomorrow and then Wednesday or Thursday will be the big day. I've made it this far so I figured what's a couple more days? I'm allowed to get up and walk by myself which has been fantastic. I've been trying to do 10 laps up and down the hallway every hour. You don't realize how much strength you lose when sitting in a hospital bed for this long. So I'm trying to build everything back up while I'm still in here. All the nurses are jealous of my fancy mask. I've been wearing it when I leave the room because I am not about to catch the flu bug while I'm being held hostage here. 

     I'm so thankful God has brought me this far and I am so unbelievably excited to see what he has in store for this new year! This year I'm choosing to find joy in the journey. What ever life is about to throw at me I'm going to find the positive and take it in stride and I hope you are able to do the same. 

With Love, 

Elizabeth <3 

The Longest Stay Part: 3

"Lord my God, I cried out to you, and you healed me. O Lord, you brought my soul up from the grave; you kept me alive, that I should not go down to the pit." Psalm 20:2-3

     So here I sit. Day 16 of this hospital admission. I have officially been off of the epi drip for four days with NO ANAPHYLAXIS!! The benadryl pump is proving to be incredibly effective! I could have never imagined it would work so well. But now we're in a predicament. I'm in California and the home health company that I would be using is in Las Vegas. It is nearly impossible to coordinate me going home on a benadryl pump from California. So the plan is to transfer me via air ambulance back to Las Vegas, get everything figured out with the home infusions and then discharge me from Vegas. My ICU doctor and allergist gave the insurance company clearance for transport on Tuesday... It's now Friday. Everything is set, the airplane, insurance approval, everything. We're just waiting on a bed to open up in Vegas. Which is sounding completely impossible. 

     I like to consider myself a patient person but I'm starting to get antsy. I feel great, honestly better than I've felt in a really long time. The benadryl is fighting my crazy mast cells for me so I feel like I have more energy and feel less run down. But I'm still stuck in the ICU. I'm still tethered to an obscene amount of wires and people are still keeping track of how much I pee. I don't belong here anymore. My body knows that, my brain knows that. So I'm getting inpatient waiting for this bed to open up in Las Vegas. I want to be home in my own bed. I want to be off of the constant heart monitors and I want to get back to my new life with benadryl coursing through my veins 24/7. Because for the first time in a while I see hope that I can live a normal life. At least for a few months while we let the benadryl do it's thing before we try to get me off of it. I can't tell you how extremely difficult it is to let this happen in it's time. I haven't felt actual sunshine in over two weeks. I haven't been able to take a proper shower in over two weeks. This waiting game is not one I'm a fan of playing. 

   

The nurses have been extremely nice! They have gone above and beyond their job description by bringing me jello late at night, sneaking me brownies from the cafeteria downstairs, just coming into chat when they have a few extra minutes. They have been fantastic. I would have lost my sanity a long time ago if it wasn't for their kindness. I've been here long enough that I'm starting to learn about their lives outside of the hospitals and we share pictures of my friends and their kids. I guess if I'm going to be holed up somewhere I might as well have nice people surrounding me.

     Hopefully I'll be shipped back to Vegas tomorrow. If not after the New Year I will work on just getting discharged from here. I'll keep playing the waiting game. Because although it's a sucky game to play at least I'm stable, at least I'm safe, at least I'm not in anaphylaxis. 

With Love, 

Elizabeth <3 

The Longest Stay Part:2

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

     Today was a fun day. The circumstances were incredibly sucky but if I'm going to fly in a private jet I'm going to enjoy every darn minute of it. The flight crew picked me up from the hospital in Las Vegas around 8:30 in the morning. They were extremely nice and one wasn't bad to look at ;) We took an ambulance to the airport and then I was loaded up first class in my fancy jet. It was a super small plane but it was only an hour flight and I got to lay back on a stretcher for it so I can't complain about the leg room. We took off around 9:15ish. A few minutes after take off the oxygen masks fell from the ceiling. Not because anything was wrong but because it was an older plane. I'm not going to lie I questioned my confidence in the small plane when that happened. It was a quick one hour flight into Burbank. We landed and I was loaded into a second ambulance. It took longer to get to the hospital from the airport than it did to fly from Vegas, Thanks LA traffic. 

     We made it to USC, which is a much much larger hospital than my usual one. I was moved into my new temporary home in the 5th floor South ICU. The accommodations here are nowhere near my normal hospital's. There is no couch or large TV and there really isn't room for visitors but I was here to get fixed so I really didn't mind what the room looked like. My wonderful mother, who I will never be able to thank enough, drove out shortly after I got settled in.

     I met with the intensivist that would be in charge of my case. He was nice and asked tons of questions about what we have tried and what they were thinking about trying. Their main goal was to get me off of the epi sooner rather than later so a few hours after I got here we started very slowly titrating back. The next morning I met with the allergist that would be on my case. She has two other mast cell patients she sees, but admitted I was her worst off. She agreed that we needed to get me off of the epi drip and we'd see what we could do from there.

   

 Getting me off of the epi went about to be expected. There were lots of benadryl pushed through my IV so I was constantly tired and napping. IV pushes of benadryl also give me a loopy feeling sometimes so I felt like I was in space most of the time. We were able to get me off of the epi for about 12 hours before I went back into anaphylaxis twice. They reconnected the epi at a low dose until we could figure something else out. This was when I brought the idea of a continuous dyphendyramine infusion to her attention. I had researched it previously and it was brought up in Vegas but it's not widely used or a widely known option. CDI is a continuous benadryl drip instead of epi. The continuous benadryl insures that my mast cells stay calmer. It doesn't cure anything but it greatly reduces the amount of anaphylactic attacks as well as greatly reduces the amount of rescue meds needed. The allergist had never heard of it so she went to work researching it. The next day it was decided that this was indeed going to be my best shot at getting off of the epi drip long term. They started the benadryl drip on Christmas Day and I'm not going to lie it was kind of the best Christmas present ever.

     The world's best mom drove out to LA again to spend Christmas with me and my benadryl! Somehow Santa found me even though I was in a different city! I woke up around 3am and there was a stalking and a Santa gift waiting for me next to my bed! I was completely shocked I wasn't expecting that at all. My momma came down to the hospital and brought lots of activities. I kicked her butt at Rummy, we tried to do a puzzle but I swear it was missing pieces so we gave up on that. The hospital also had a special Christmas dinner of steak and mashed potatoes. It was surprisingly delicious! Somehow my momma managed to make this Christmas special even though I couldn't be home. Hopefully I'll be home soon so we can do Christmas in January! Stay tuned for part III tomorrow! 

With Love, 

Elizabeth 

The Longest Stay Part:1

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

      I'm not going to lie. There have been times in this last 16 days that I have definitely not felt the power of this bible verse. I had my most scary anaphylactic reaction a few weeks ago. I called 911. I don't remember much else other than the firefighter pulling me from my car and the sudden rush of adrenaline that went through my PICC line shortly after. The rest is gone. I have no memory of the ride to the hospital, I have no memory of the first hour in the trauma room, I have no clue what happened. I just know that when I did start coming back around the ER doctor was trying to place an airway tube. Thankfully; the third round of rescue drugs did their job and I narrowly avoided being intubated. This was the beginning of my longest hospital stay to date. 

   

 That night they put me back on an epi drip and I was admitted into the ICU. This is "normal" I figured I'd be there for a day or two as we backed off the epi drip and I'd be able to go home. That's not what happened though. Day two we tried backing off the epi pretty quickly, I cautioned them against this but they didn't listen. I made it about three hours off the epi drip before I went back into anaphylaxis. It wasn't anywhere near as bad as the day before but my oxygen levels dropped pretty rapidly. They reconnected the epi and gave a nebulized version of epi as well as benadryl. I recovered from this one fairly quickly. While on the epi drip I was still having "leaking reactions" migraines, itching and burning skin, upset stomach, the whole nine yards. These doctors consulted with Dr. Afrin who is a mast cell specialist in New York that has been following my case. He suggested we try an emergency dose of xolair. I had talked to my doctors about xolair previously and we were going to try it but the plan was to wait until after NewYears.

     We were able to get insurance approval for the emergency dose and they administered it on Saturday... It didn't go well. The thought right now is that I reacted to the medication being given to fast and not the actual medication itself. But either way it was a miserable reaction. It started off with the injection site swelling quite a bit and then I broke out in hives and extremely itchy red blotches. I got extremely nauseous and dizzy all at once. My body couldn't figure out if it wanted to heave or pass out. And then the dystonia hit. Dystonia looks exactly like a seizure except I'm "there" for all of it. My eyes are open and I can hear everything but I shake violently and my muscles get so tight and rigid. This freaked the ICU doctors out. They were once again considering intubation because I was having a hard time keeping my oxygen levels up on my own. It took two rounds of epi injection, benadryl, and ativan to calm everything down. It was after this reaction the ICU docs decided I was officially out of their scope of practice. They made the decision to transfer me to USC Keck hospital in Los Angeles. 

    It was definitely not an expected move but a very much necessary one. I was now facing Christmas in the hospital miles away from family. God has an interesting way of working everything out. Stay tuned for part II tomorrow. 

With Love, 

Elizabeth <3 

I'm Just Done Fighting

   

     It's been a minute friends. I have tried to sit down and write several posts but there were just none I was passionate about enough to finish. I'm a bag of mixed emotions right now, and for good reason. I had two wonderful weeks of no issues. There was the occasional ocular migraine, or upset stomach after eating but I went two whole weeks without a hospital admission, without having to use an epi pen, without being stuck at home. And they were a great two weeks, probably one of the best few weeks I've had in over a year. I want to go back to those two weeks.
     Last Sunday I went to church and then went to Subway right after. Subway has always been a safe food for me. I get the same thing every time and never have any issues with it. A few bites in my throat started to feel scratchy and my whole body got hot and itchy. I remember trying to take benadryl but must have slipped into unconsciousness because I came to in the ambulance with the medics trying to start an IV and a needle being stabbed into my arm with more benadryl. They had already given me epi in the shoulder and my oxygen levels came up slowly. It's never a good thing when the fire crew (who has never ran on you) knows who you are because other crews talk about you at the station. They knew not to give me anything else until I woke up and could tell them what I can and cannot have. My body cooperated the rest of the ride. In the ER I had another reaction and another the ER doc said "it's not possible to have that many rebounds" I know better. I've experienced the truth of multiple anaphylactic reactions one right after another. They decided to admit me. The attending physician came downstairs and told me there was nothing else they could do for me.. There is they just refuse to consult my specialist. I decided to be discharged that night because there was nothing beneficial for me there if my doctor wasn't willing to actually help me.
     The very next day I started feeling short of breath and it got extremely hard to swallow. I hadn't eaten anything that day so I don't know what could have possibly triggered it, but either way it was happening. I was home alone so I tried to call my mom my phone must not have been working because I tried to call her and my dad and all I got was "Verizon can't complete your call please try again later" so I pushed the "help" button on our GPS app. I don't know what happened after that. I don't know how 911 was called, because it sure wasn't me, but they were. They arrived and I was face first on the floor. Yes, I was at least breathing more than 3 times a minute this time. They loaded me in to the ambulance. A few minutes later the medic looked at me and said "this isn't anxiety is it?" I nodded my head no. He looked at my oxygen level which was now dipping into the 70's. He gave me a round of epi in the shoulder and 50mg of benadryl through my PICC line. I was struggling to breathe my breathing became so labored that I was starting to zone out. He started bagging me, which is basically him breathing for me, and they turned on the lights and sirens. When I got to the ER they immediately decided to admit me.
      9 hours later I was still in the ER, they told me it would be 34 hours before they could get me a bed upstairs. I gave up. I had nothing left to give. I was extremely itchy since the first benadryl wore off so I asked for more. My entire body was red and splotchy and there were hives on my chest. The nurse said she'd be right back with some and I didn't see her for another hour and a half. I decided to sign AMA, against medical advice, and have a friend drive me home. My mind was, and still kind of is, in a dark place. There are still people out there who thinks this is just anxiety or that I'm doing this for attention. That there is no way a 21 year old could be this sick. I can tell you every time I go into anaphylaxis I have to make the decision of staying and fighting or closing my eyes and letting the darkness consume me. I honestly think that's why I've been found unconscious so many times this week. Is I've given up the fight. I don't run to my epi anymore, if I get to it I get to it. I don't stay at home where it's safe anymore and I certainly don't wear my mask outside like I should. I've stopped fighting. I hate saying that out loud but it's true.
     I had a doctor's appointment yesterday to go over lab work. I came back positive for the gene mutation that has been found to cause MCAS, and one of my prostoglandin reports came back 4x over the normal limit. The specialist my doctor was consulting in New York says it's time to switch treatment options. Neither of which I'm thrilled about but one option has an incredible success rate in decreasing anaphylactic reactions from multiple times a week to once every few months. But it's still a newer treatment option in the medical world and all of my doctors are pretty nervous to start it. My take on it is there's no way this option could make anything any worse. Why not just try it? I want nothing more than to go back to school right now. Not even work, I just want to go back to school. Where I can meet other people my own age but I can't right now. I have a dismal quality of life right now. Wouldn't we want to try everything we can to fix that? To make it so I'm not in the hospital multiple times a week? I'm just so frustrated. Doctors are giving up on me, friends are giving up on me, I'm giving up on me.
     So I'm praying for strength and peace. Because no matter how tired I am or frustrated I am God's got it all planned out. He'll put me in the right hands and he'll get this figured out. "Tell everyone who is discouraged, be strong and don't be afraid! God is coming to your rescue." -Isaiah 35:4

With Love,
Elizabeth <3

Where Do I Go From Here?

     What do you do when you get released from the hospital after seven days of being under the constant care of medical professionals? Where when your throat starts closing and you can no longer get air into your lungs the life saving medication and quick response is only a push of a button away. And when you close your eyes to go to sleep you know someone will be coming into check on you in a few hours to make sure you're still breathing. It's hard going back to a normal life. It's hard trusting yourself. I don't trust myself. I don't trust my body. Last night was my first night out of the hospital and I woke up twice unable to breathe, throat swelling, gasping for air and I had to deal with it all on my own. I had to mix the saline and the medication into my nebulizer and remind myself that I was okay. That it would be okay in a few minutes. I don't have access to IV benadryl so I have to wait until my throat opens back up to be able to swallow benadryl. It takes longer to get better at home. It takes more willpower to tell myself this to will pass.
     My team came in to my room before I was discharged to go over the home plan. They wanted to make sure all of my questions were answered before they gave the final sign off for me to go home. The lung doctor, respiratory therapist, my nurse that day, and the discharge planner all came in to make sure we were all on the same page. And to be honest we questioned if it was time for me to go home. I was still having life threatening reactions about every six to eight hours. The only difference is they were now being controlled by a nebulized medication and not an epinephrine shot. We questioned if maybe a few more days under constant monitoring would be beneficial. But I wanted to go home. I had spent seven days in the hospital and I just wanted to be in my own bed; so we decided to move forth with discharge. I have to set an alarm every six hours to give myself my steroid medication, you know the one that keeps my lungs open, yeah. That's a lot of pressure. Keeping myself alive is a lot of pressure.
     So what do I do from here? How do I go back to life as I know it? One tiny inch at a time. I'm staying close to home or at least people that know how to help me. I'm taking breaks when I need them and reminding myself it's okay to not be okay. I'm still having lots of reactions. I've had four since I got home yesterday. I'm staying on top of my meds and making sure I'm always near benadryl and trying to get a head of reactions when I can. I have a doctor appointment next week to discuss next steps.. I don't know where we'll go from here. I feel like I've hit rock bottom as far as health goes and I will take anything. Hopefully the labs that were drawn in the hospital will yield some answers and I will be able to get my life back on track. But for now... I'll keep on going. One step at a time... little by little.
"May the God of hope fill you with all the joy and peace as you trust in him, so that you may overflow with the hope by the power of the Holy Spirit." - Romans 15:13

With Love,
Elizabeth <3

I Am Allergic To Benadryl

If you don't know I have Mast Cell Activation Disorder. Which means at some point in my life I will become allergic to everything. It sucks and I hate it but it's a fact of life that I face every day. So much so that I take 50 mg of benadryl every four hours to keep symptoms at bay. This is causing me to be sleepy. All. The. Time. But because of this disease if I don't have name brand benadryl and not the "allergy relief" brands I am okay. Because the way the medication is compounded I am allergic to. So if all you have is benadryl and it's an allergy relief brand I will take it. Because it doesn't affect my body enough that I'll care. However; knowing this about myself I do make life threatening decisions every second of every day. Here's How. 

I AM Allergic To Water 

Knowing this about myself sucks. I am so hyper aware of everything all the time that I question if the water I drink will cause anaphylaxis. I love certain brands of water and I refuse to drink certain brands like Arrow Head. I don't know how I decide which water to drink and which water not to drink but I know that I hate Arrow Head so much that I wonder if it's causing an allergic reaction. And I know that I like water from a Britta filter so much that I wonder if it's because I'm not allergic to it. I also wonder if this is a big reason I love swimming but don't go. There are some pools I'm in that I get so itch and red I wonder if I'm allergic to the chlorine. Which is why I think I've had so many severe reactions at Wet N' Wild I refuse to go there because I wonder if I am so allergic to their chlorine it's affecting me I have to go to the hospital. But I wonder if I were to go to another water park I'd be 100% fine. 

Sleep Is A Trigger

I am not allergic to sleep. But sleep affects my life so symptomatically that I am. Because I sleep is such an allergy symptom relief for me I feel like if I just go to bed for a few minutes I'll be fine. That lack of sleep and sleep exhaustion makes it look like I'm drunk. So if my symptoms are bad the likelihood is that I am so exhausted and dehydrated that I look 100% normal if I haven't slept a solid amount in the last month. So if I ever seem drunk, high, or tired. Tell me so I can go sleep for a few hours. 

I Hate Unfamiliar Social Situations 

I want to go to church and youth group so bad but have never found one accommodating symptom wise that I have never gone. Now that I know this there were several places I felt safe enough to and never gone and I regret that. So if you feel comfortable handling something if it were emergent please let me know. Because I probably want to but symptom wise I am not because I don't feel safe there. 

Life with this disease is a living hell. I can't explain that to people. But I wouldn't wish it on the worst person. So please take that into account if I cancel plans. 

With Love, 

Elizabeth <3 

Ephesians 2:5 

The Fire During My Hospital Stay

     Oh fifth floor adult inpatient unit, how I wish I wasn't so familiar with your halls. I was recently released from a five day hospital vacation. I wish I could say that it yielded more answers to what feels like my never ending health problems, but alas, it did not. I don't want to say it was a complete waste of five days and a ton of hospital bills, but right now that's what it feels like. I didn't have my computer with me to update my blog while I was there, but I did have my phone! So here's a recap of me week!

     Intake was about a three hour process. I was supposed to be a scheduled admission but something on the hospital's end got messed up and there wasn't a bed already ready for me. Which was frustrating and I should have just ran for the hills then. Thankfully, I wore my comfiest clothes and had my phone charger handy so sitting in the waiting room wasn't a huge deal, I was just hungry.
      While I was sitting in the waiting area starving myself to death my body had a different idea. I had an allergic reaction. I noticed my chest was super itchy and that I was starting to get nauseous. I followed my protocol; take 50mg of oral benadryl and wait. After about ten minutes of trying not to itch my chest my throat began feeling tight. I took a puff of my albuterol inhaler to see if maybe that would help. No relief. It started to get way worse. The impending doom feeling was setting in which is my sure sign it's time to get help. I staggered up to the front counter clutching my chest. The lady could probably hear my breathing from across the room. I stabbed myself with an epi pen and we quickly got me a wheelchair over to the ER. I was then admitted as an ER patient and six hours from the time I originally showed up that morning I was taken to my room. It was a frustrating start to the next four days.

     Day two was supposed to be my big testing day and then go home on day three. Turns out that wasn't the case. Since being admitted I hadn't been able to go a full 12 hours without a near anaphylaxis episode. And without knowing what was triggering them my doctor wasn't comfortable sending me home. The silver lining of having so many reactions in a controlled environment is that we were able to constantly monitor me throughout the whole thing. The doctor said I have what he would call "atypical anaphylactic reactions". Which means that instead of my blood pressure dropping like a normal anaphylactic reaction mine actually sky rockets. 10 minutes before a reaction my blood pressure would be around 115/70s. During a reaction my blood pressure would shoot up to almost 180/90s. This would happen consistently almost every single time. After doing some research my doctor was able to link this to mast cell activation. He said a lot of patient's with the same thing as me have the same time up blood pressure jumps during a reaction. He said this is probably why it gets mistaken for a panic attack so often. It's highly highly unusual that the blood pressure would go up instead of down. So at least we're slowly learning new things about my condition. Baby steps right?
     Day four was the most difficult day emotionally. I was just done with being in the hospital. They wouldn't let me off of the inpatient floor (for good reason) so I felt like I was trapped. The floor went in a circle and if you walked that circle 9 times it made a mile... I walked four miles that day... I watched several episodes of HGTV and The Food Network shows only because that's all that was on. I was starting to get a meek outlook on being there. Up to this point I was fine with being an inpatient. I knew that by being there I was safe, getting the care that I needed, and we were learning more about how my messed up body works. But day three my brain was just done. My nurse was a little on the crabby side and wasn't much for small talk and conversation, the medication they had started me on was starting to make me feel weak and lethargic and I was starting to get sick of hospital food. It was just all around a bad day mentally. On top of all of that my IV decided to start leaking a strange color fluid so we had to start a new one in my hand. Which is my least favorite place to start an IV. I hate it, and it took 45 minutes and a pediatric nurse to find a vein that was usable enough. The only real excitement I had that day was this fire alarm/ drill. It ended up being a false alarm but we were actually told to be prepared to evacuate the floor. Because a real fire had been reported on our floor in the East tower. The fire department showed up (none of them were cute dangit) and we were given the all clear and I was able to resume my laps around the hallway.

     I was finally released around noon on day five! No really big new news to report, but at least I had a little more information. At least I had been validated by a doctor that this wasn't anxiety or all in my head. As sucky as it was I would do it again to learn more about how to better take care of myself, and how to better treat my reactions. Hopefully, I'm able to stay out of the hospital for a while though. This is me in my car with my IV site bandaged up which means I got the okay to go home! Friends, whatever your sucky situation is this week, hit it head on. I believe in you! 

With Love, 

Elizabeth <3 

   
                                                                                                             

She Told Me This Is Going To Kill Me

      This picture was taken back when I went to Vegas last month. I challenged myself to go hiking, not my smartest decision I know, but I love hiking and I wanted to prove to myself I'm not going to let anything stop me. So I did it and this was my victory picture. What you don't see is the before this picture. The 100* weather, the heart rate of 190 for most of it, the having to stop and sit every 5 minutes, the six times I nearly passed out, and the three times I actually did. This was right when my health really decided to take a turn for the worst. For me, this was a documented picture of the beginning of the end. I want to go back to how I felt in this picture.
    You see, a week before this picture I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and a week after this picture I was diagnosed with Mast Cell Activation Disorder. I'm currently in what doctors are calling a "flair" of my MCAD. I have been in the hospital multiple times for anaphylaxis that has nearly killed me. One of my visits had sent me to the ICU for a couple of days because I was just so unstable. While I was there my doctor came in and said those life altering words. "We don't know how else to treat you, but eventually this is going to kill you, we just hope it's not soon." Who wants to hear that?! Who tells someone that news in that way?! I try to fake my way through this illness all the time. And I know I do a pretty good job of it when people tell me they think it looks like I enjoy being sick. I don't, I hide the endless nights crying myself to sleep, the constant prayers to God to change something... anything. I don't know why this is happening to me. I don't know why he has put any of this in my life and I hate it. I've had multiple yelling matches with my wonderful creator asking why me, what did I do to deserve any of this? So I sat there and swallowed that awful news and put on a brave face in front of the doctor. I didn't want her to know how broken I was inside at that moment. As soon as she left I lost it. I started crying completely alone. And I didn't stop crying until my heart rate got so high that I passed out. I cried myself to unconsciousness over what I just heard. I'm not scared of dying, that's not what scares me. It's a part of life. It happens to everyone and I know that through my awesome and wonderful God I have an eternal home in heaven. So it's not dying that scares me, it's the fact that THIS is going to kill me. That I could go because I can't get to my epi pen fast enough. It's the fact that I have something so rare and so new to the medical field that my doctors are SCARED to try any aggressive treatments. And she dropped such an atomic bomb like that and then released me from the ICU and sent me home where I am alone most of the day. Where I'm not hooked up to monitors 24/7 that detect what my body is doing before I do.
     There; in that hospital room is where I realized this is going to be a life long struggle until it eventually kills me. There is no cure. There is no out. I would love to sit here and write to you that I have moved past this moment in life. That I'm back to being able to hide my illness and living life to the fullest, but I'm not. I'm still struggling through that news, that realization. But, while I'm struggling through this I am still finding strength in my Lord.
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, comfort me." Psalm 23:4
     I will continue to fight this and battle with doctors about treatment options and try everything I can to get ahead of these diagnosis' and I encourage you to do that as well. Where ever you are in life, keep going. It's a dim light but there is definitely a light at the end of this dark and twisty tunnel.

With Love,
Elizabeth <3

Hospital Admission June 2017

     I've had a rough go at it. Tuesday night while driving home from a friend's house I went into anaphylaxis. It took two epi to get it under control and a ton of benadryl. Even though I asked to stay under observation the doctor said he didn't think that was necessary and sent me home. I have no idea what I reacted to that night. The next day I had another reaction and once again was sent to the ER. And here I sit two days into this hospital admission with no promises of breaking out of here anytime soon. You see the problem is I'm going into anaphylaxis all the time. Every couple of hours. They've had to give 4 rounds of epi since 3am this morning. And that sucks, I'm holding up as best I can but I'm not going to lie, not knowing what's ahead is scary. And every time my throat starts swelling up it's frightening. I feel like that's when I meet Jesus, that's when I'm going to start going into the light. The thought that these reactions have the potential to kill me doesn't sit well with me. I know I'm in the best place possible, I'm under 24 hour observation and the medicine to keep me alive is only minutes away but it's still something I think about. I'm being moved up to the ICU tonight so we can hopefully get a hold of all of these reactions. This hospital isn't used to dealing with my conditions so they're nervous about trying anything aggressive. I just want to go back to a normal life.
     I've had a lot of thinking time since I've gotten here and I think it's time for me to move home. To be near a better support system. I don't know when that will be but I think it's time. They've put a lot of emphasis on this diagnoses of mast cell activation disorder and postural orthostatic tachycardia saying my life will never be the same. That I may not be able to return to the job I love, to the activities I love, that I will have a more limited quality of life. And I don't want to accept that. I don't want that to be my destiny. So I think it's time to go home, to ask for the help that I need. And that's a hard pill to swallow. Because in my head that's giving into this disease. That's letting it defeat me.
     These are just my thoughts as I sit next to window wishing that I could be on the outside and not stuck in here. But I'll make the best of it. I'll keep going and friends, you should too.

With Love,
Elizabeth <3

My Week In Pictures May 14-21 2017

   
Hi Friends! I just created this week's The Daily Climb picture album! This is where I post all of the pictures I take throughout the week to give you guys a better look at the day to day life of a POTS patient, chronic illness warrior, and average 21 year old. I hope this gives you guys a better understanding of what I go through on a daily basis <3

The Daily Climb May 14th-21st

I Almost Went Paralyzed Again...

     On Friday my cardiologist officially diagnosed me with Postural Orthostatic Tachycardia Syndrome. Because of that he increased my mididrine dose from 5mg daily to 15mg. I'm not a huge fan of this medication to begin with it always makes me nauseous and if I don't eat within ten minutes of taking it I get extremely sick. Yesterday, even though I ate when I took it at lunchtime, I must not have ate enough and ended up getting violently sick. The problem with this is that my potassium will drop incredibly fast when I get sick. Even though I was trying to keep up with me getting sick by taking potassium it wasn't working. I was still starting to feel the effects of low potassium. My team and I decided it was best to go into the ER to be monitored and replenish the potassium safely instead of guessing at home.
     I was triage and taken to a bed right away when they saw how high my heart rate was and that it was also skipping beats. I could barely walk, stand, and breathe on my own by the time I got there. I was incredibly anxious because low potassium paralyzes you, it starves your muscles until they are no longer able to move and then major muscles start shutting down. The last time my potassium was this low I was taken to the ER by ambulance and the paramedics were breathing for me because my body just didn't have the capability anymore. My potassium was indeed extremely low at 2.4. I was starting to have tremors and bouts of not being able to breathe. We started infusing IV potassium as quickly as we could. They gave me a total of 160meq of potassium over a four hour period. Unfortunately, potassium is also hard on my stomach so about two hours into the infusion I ended up getting sick again and we had to redo 80meq of potassium. I was in the ER for a total of 8 hours. The doctors there and I decided that if I responded well to this treatment then there wouldn't be a reason for me to stay overnight because we do know what caused the initial drop. I'm extremely thankful for my team of doctors who I can call whenever I need them as well as amazing ER staff who were quick to react and got me back where I needed to be.
     I'm going to talk to my cardiologist on Monday about looking into other medication options or seeing how I respond to a lower dose. Hopefully, we'll be able to figure everything out soon and I'll be stable enough to go back to Nebraska in a few weeks!

With Love,
Elizabeth <3

The Daily Climb: A picture album update

Hey friends! I've been struggling to write lately, but I have been taking lots of pictures. I have put them together in a viewable album. Hopefully this can give you guys a better look at what day to day life is like. I hope to do more of these in the future because I like doing these way more than vlogging. Let me know what you think! I have lots of doctors' appointments coming up that I'll update you all on soon. I'm sending my love to all of you!
With Love,
Elizabeth <3

The Daily Climb Photo Album

April 2017 Hospital Stay

     Good morning friends! I am officially out of the hospital and trying to fend for myself in the real world without someone checking in on me every hour. It's both exciting and extremely scary. They sent me home on a heart monitor for 30 days. Which actually isn't that bad. I have pictures of my hospital stay! I don't really have much to write today. But I'll keep you posted. For now, please enjoy these pictures of me being awesome and ruling the cardiac floor of the hospital! Also look for a new vlog video on YouTube soon! I will add a link in the video section of the blog as soon as it's posted.

With Love,
Elizabeth Keane <3

It all started with a trip to the ER... I was seen for low potassium. They gave me IV potassium, and oral potassium which then made me extremely nauseous. So until 2am, when they took me up to the cardiac floor, I got sick, watched Netflix, and tried to sleep.

DAY 1: I finally got up to my room around 2am. They gave me another bag of fluids which ran until 9am. I was allowed to move around but it took some effort. I did my hair and make up and then my roommate came and we did laps around the floor. She followed me with a wheelchair just in case. I actually became friends with other patients and patient's family which was really awesome. Everyone was very much encouraging.

Day 2: My roommate came back out to spend the day with me again. This was the first day we saw the nephrologist. It was a hard day as far as anxiety goes. My nurse let me go outside as long as I stayed in a wheelchair and we took a tech with us. My room had a counter with a window and they would catch me sitting on the counter watching the nice weather out the window. I thought about escaping, but I wasn't allowed.

Today was an emotional whip lash. They told me I was going home, then told me I wasn't, then finally they told me I was going home! The night was rough I was short of breath with a high heart rate few times. So I was on oxygen on and off. The nurses saw I was frustrated and snuck me ice cream to cheer me up! The top right was the world's greatest nurse! She was amazing and I can't thank her enough for everything she did!! 

And The Storm Continues

 
      Friends. I've found myself in a health predicament. I'm a little bit "out of commission" right now and I don't have to many solid updates. But here's what I know so far:

-the diagnosis of hyperaldosteronism has been scrapped. They think that I have been missed diagnosed as I only show the low potassium symptom of that diagnoses.
-I am extremely weak and short of breath. I had to sit down on the floor of the bathroom today while I was changing because standing up was just to much for me.
-I also know that I'll be here for at least a few more days as we try to search for answers.

      I'll have a better update as I learn more but for now here are some pictures of my hospital stay thus far. I am beyond blessed to have friends who will stick with me through all of this. I am struggling but there's a light at the end of the tunnel so I will put my trust in the Lord and take each day one step at a time.

With Love,
Elizabeth <3