Meet Melvin 3.0

"Jesus Christ is the same yesterday and today and forever."
-Hebrews 13:8

     While on my vacation this past weekend my IV Pump (Melvin) decided to get a little weird. It would start beeping with an error code of "Error: Stuck 7 key" and wouldn't do anything unless I turned it off and then back on again. The 7 key was never stuck but this happened two times over the weekend. And then during class on Tuesday night it did it again. Except just turning it off and back on again didn't help. I had to take the batteries out while it was still running put them back in and then turn it off and back on again. This process happened twice during class. 

     That night I called the 24 hour Coram assist line. They connected me to the on call nurse who tried to walk me through troubleshooting it. Unfortunately, we pushed one to many wrong buttons and Melvin decided to just flat out quit. So the Coram angels got to work. They programmed a brand new pump and sent it out to me two hours later. At 9:30pm I made the switch, said goodbye to Melvin 2.0 and said hello to Melvin 3.0. 

     So far so good. I was able to connect to the new pump and restart my infusion without missing a beat. The courier took my old IV Pump back to the Coram pharmacy for me. I was extremely impressed on how quick they were able to help me fix the problem! Hopefully this new pump will last a little longer than the old one. 

With Love, 

Elizabeth <3 

I Went On An Adventure!

"The Lord himself will go before you. He will be with you; he will not leave you or forget you. 

Don't be afraid and don't worry." 

-Deuteronomy 31:8

     I went on an adventure.An actual adventure! I flew to Kansas City on Friday for a weekend filled with family and cold weather. Oh how I missed the cold weather. This was my first trip with Melvin the IV pump and my benadryl bags. 

     It was... interesting trying to get through TSA in Las Vegas. Prior to my trip I called the TSA Cares hotline (I highly recommend this if you are traveling with any kind of medical condition or equipment) the lady was extremely helpful and told me how to best prepare. She also notified the TSA supervisor of my flight information so they were expecting me Even though I have TSA Precheck they still asked me to take off my shoes and jacket. I then told them my backpack could not go through the scanner because a) it's attached to me and b) I was advised by my pharmacist that the benadryl bags should not go through the scanner.  They then told me everything except for the medical supplies had to go through the scanner. Which was false. I explained what the TSA Cares lady had told me. They went to find a supervisor who of course was training a new agent. The new agent was now in charge of my bag check and pat down. And she was 100% by. the. book. Every last item in my bag was pulled out and swabbed for any residue. After she cleared by bag she told me she had to see the PICC line site. As I went to remove the sleeve that covers my line she yelled "please put your hands where I can see them! Stop making sudden movements!" Which of course caused Metro officers to walk over ready to take me down. So that was fun. 45 minutes later I was FINALLY cleared from that miserable security checkpoint. 

     Southwest is seriously the most amazing airline when it comes to accommodating your needs. I notified them when booking my flights that I have severe allergies and would be traveling with medical equipment. I was able to preboard the flight to wipe down my seat and tray table and to introduce myself to the flight attendants. They were all just so understanding and kind. On my flight home from KC it was a pretty empty flight. One of the flight attendants noticed one of the passengers was wearing extremely strong perfume and of course this lady chose the row directly in front of me. The flight attendant told me politely that she thought I may want to move seats, I am so so thankful she was looking out for me. She also helped me change my benadryl bag mid flight and was genuinely curious about why I had Melvin the IV Pump. When we landed in New Mexico the flight crew switched and she brought the new flight attendant back to meet me and fill her in. I can't thank Southwest enough for everything they did to make this trip as painless as possible. 

     Missouri was fantastic and cold! Friday night I stayed at my cousin's house and then Saturday and Sunday I got my own hotel room. I came prepared with a bulk pack of handwarmers and lots of beanies! I was hoping for snow but all I got was ice, which isn't nearly as fun. On Sunday morning I got on the elevator to go downstairs for the continental breakfast. Well... we made it to the first floor but the doors never opened. We waited another minute or two and still nothing. We frantically pushed the door open button and nothing happened. So we called the front desk and were told it would be another 2 hours before they could get the elevator guy to come free us. My IV pump started beeping low batteries and I told the front desk lady that I didn't have any batteries on me and my medication would soon stop running. That was a slight fib, I had 3 sets of extra batteries on me but they didn't need to know that. But that worried them enough to call the fire department to come equipped with a crow bar to free us! Unfortunately, there was no continental breakfast left after we had been rescued. 

     I had such a fun time hanging out with family! I knew traveling would be exhausting and would come with a long recovery time but it was so worth it. I feel more confident now that I'll be able to live a somewhat normal life even when my body is rebelling against me. What adventures have you been on recently? Or what adventures would you like to go on? Hopefully there are more fun adventures in my future! 

With Love, 

Elizabeth <3 

Learning To Live With The Whispers

"For the spirit God gave us does not make us timid, but gives us power, love and discipline."

-2 Timothy 1:7

     I am still learning to live life differently than everyone else. I'm still learning to live with the stares of people walking by and the whispers of people gathered in the corner watching me closely while I am trying to change my bag of benadryl out to a new one. This involves pushing saline and heprin through my lines and leading a line through my arm hole and down my shirt so it is out of the way. But people just see me drawing up "drugs" and reaching up my shirt. It's not the easiest thing to explain to people. 

     I went to my church's super bowl party this weekend. I was extremely nervous to go because I am still new and don't know a lot of people, and what if I have a reaction to the food, or what if Melvin the IV pump freaks out. But I mustered up the courage and I went for it. Unfortunately right in the middle of it was a scheduled bag change. I walked out in the lobby and found myself a seat on an empty couch and started the process. No one came over and asked me questions but I can hear them whispering close by and their darting glances when I make eye contact with them. It took ten minutes, a little longer than usual because I was distracted. I only have 15 minutes until Justin Timberlake's half time performance and I was NOT about to miss that. 

     I finished priming the tubing and started the infusion threading the tubing through my backpack and connecting it to the line under my shirt (nothing was showing the line reaches to about my belly button). I cleaned up my mess and shut my backpack walking past the staring group. I rejoined the people I knew at our table and swooned over Justin while questioning his wardrobe choice. 

     It's days like these when I realize my life is not normal. My day to day activities aren't what people are used to. I had fun at the party and would go again 100%. I just have to remember MCAS, POTS and Melvin the IV pump are always going to tag along with me. What did you do for Super Bowl Sunday? 

With Love, 

Elizabeth <3 

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