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 

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

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

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