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<div>Hi everyone!
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<div>There has been some recent question on how people could donate on behalf of me and my medical expenses. I figured setting up a GoFundMe page would be the route that made the most sense. All money raised will be used to fund my therapy not covered by insurance, our trip to Boston to go to Mass General’s Angioedema Program and any other medical bills not covered by insurance for specialized testing or treatment along the way.
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<div>Thank you to everyone from the bottom of my heart that is able to give to help me with this journey. Every single dollar spent will be to help me get better and back to my old self! I am so ready to be well and be the Mama my boys are used to again! If you are unable to give financially, please don’t sweat it. Times are hard and I totally understand!! But if you would, consider sharing my story or just keeping me in your thoughts and prayers. That would mean the absolute world to me! I am going to post my story below for those of you that have not read it on my FB page.
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<div>**My Hospital Story**
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<div>Ever since it got out on social media that I was in the ICU/hospital, I’ve had a lot of my friends reach out and ask me what happened. I’ve been doing my best to respond to everyone but since so many people have reached out, I figured I would share my story. This is going to be long so if that bothers you, just scroll on past. Please be kind as this was all very traumatic for me and my entire family. I am just now at a place where I’m even able to talk about it but I think talking about it helps me in a way.
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<div>July 23rd was a big day for us. The twins had an upper endoscopy/colonoscopy scheduled that we had been waiting on for months. We woke up early around 4am and headed to Children’s and Women’s Hospital to have the procedure done. When we got there and spoke with the anesthesiologist, we unexpectedly found out that they would both need to be put under general anesthesia instead of just twilight sedation. We didn’t love that but it was what was best. Wake up was rough with two toddlers. Lots of times, when coming off anesthesia, toddlers tend to wake up fussy and ours did just that. We brought them home and I was hoping they would be drowsy once we got home but they were both inconsolable for most of the afternoon. When I finally was able to get them down for a nap around 4:30, I went to go lay down for a moment myself. After lying down, I noticed that my lips felt weird and tingly. They had done this before, about 6 months ago, when I had an anaphylactic reaction to something unknown and required 3 shots of epi plus lot of steroids, Benadryl and breathing treatments to get it under control. So naturally, instead of being proactive and using my epi pen right then, I talked myself out of it and convinced myself that my lips must just be chapped and it wasn’t real. I put some aquaphor on my lips and expected it to go away. I decided to go ahead and go get Luke from school since Nick was working from home that day, Epi pen and inhaler in tow just in case. On the way, I sent my mom a picture of my lips and asked her if they looked swollen and her response was, ummmm yes, did you just get lip filler? I got Luke from school and quickly drove home because the inside of my mouth was now starting to swell and I was feeling short of breath. By the time I brought him inside, I looked at Nick and told him it was happening again and I needed to take my epi pen. I went ahead and took it and decided to drive myself the 5 mins to the ER since my swelling was already going down and I could breathe again.
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<div>When I got to the ER, I was taken back to a room and treated with all the things they would normally treat you with during an allergic reaction with facial swelling and throat swelling. Throughout my time in the ER, the facial swelling slowly started to return, the wheezing wouldn’t let up and I felt a steady lump in my throat. I also noticed a new symptom this go round and that was abdominal pain that seemed to kind of creep up and get worse and worse. At that point the ER doctor decided to do a CT scan of my abdomen where they found inflammation all throughout my intestines as well. I did not know this but if you are experiencing angioedema that causes swelling in your oral mucosa, it can actually move all the way down your GI tract, which is made up of the same kind of mucosa and cause mass inflammation which causes severe pain. Fun facts I never thought I’d learn about. Anyway, moving on, I stayed at the ER until about 1 am when they decided it would be best to go ahead and admit me for observation given the swelling was getting worse, the abdominal pain was getting worse and the wheezing wouldn’t subside. I was then transferred to Providence Hospital and put on the telemetry floor because my heart rate was elevated from all the Epi, steroids and albuterol.
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<div>When I got to Providence, I had an amazing team of nurses and doctors that did everything they could to try and slow down my reaction. I was getting steroids in my IV, as well as Benadryl and every breathing treatment imaginable around the clock. The facial swelling did seem to kind of get better and then it would sort of flare back up again. The stomach pain remained and did not let up, it just continued to get worse. I still had had a constant “lump” in my throat. It felt like the kind of lump you get right before you’re about to cry that normally goes down once you swallow except this did not. It steadily got worse. I stayed on the telemetry floor for that night and 1 more night without much improvement. On July 25th is when things started to take a turn for the worse.
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<div>All that day I felt the “lump” getting bigger and I noticed it was getting harder and harder for me to swallow even a sip of water. I stopped eating and drinking all together at that point. I also felt extremely short of breath most of the day and I noticed my lips were starting to puff up again. Also, my stomach pain was so unbearably bad it felt like I was in full blown child labor. I let my nurse know all of these things and she called the hospitalist to come down and look at me. The hospitalist came to my room and I told her what was going on. I looked her dead in eyes and said something no healthcare provider ever wants to hear, “I don’t want to scare anyone or make a scene, but, I feel an overwhelming sense of impending doom. If things don’t start getting better, I feel like I might die. Please, help me, I’m scared.” At this point she immediately ordered that I be transferred to the ICU so they could keep a closer watch on my breathing and vital signs. This was at about 2pm.
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<div>They transferred me to the ICU and immediately hooked me up to all the monitors and did a blood gas. I met with the ICU/Critical care physician and spoke with him regarding the next steps. He listened to me breathe and my neck for any stridor in which there was some mild stridor at that point. He told me that they would be keeping a very close eye on it. Within the next few hours or so, I felt like my throat was legitimately closing up more and more by the minute. I tried drinking some sprite and I couldn’t get any of it down. This scared me and is what prompted me to tell the nurse to get the doctor. The doctor came in, listened to my breathing and immediately told the nurse to prepare for intubation. This would end up being one of the most emotional, scary moments of my entire life. Thank goodness, my sister, Sarah, was still at the hospital with me. Everyone else had just left, mostly because I had convinced everyone that I was absolutely fine so they wouldn’t worry about me. I had Sarah give me my phone and I quickly, while there was about 10 people around me getting stuff ready, FaceTimed Nick and was able to tell him what was going on and that I loved him. I told him to please take care of our babies and tell them that mommy was okay and would be home soon. Sarah at this point had my Dad on the phone and I was able to tell him and my mom that I loved them and that this was all just precautionary just in case my throat did close all the way up and I would probably be off the ventilator tomorrow. I texted my boss, Melissa and let her know what was going on so she could tell all my work people. As they were pushing the drugs, I yelled out the passcode to my phone to my sister to write on the dry erase board and told her to text a dear friend of mine that happens to be an anesthesiologist that I work with. I knew she would make sure I was being well taken care of. The last thing I remember was squeezing my sister’s hand so tightly, crying, telling her that I loved her and I was scared and then everything went dark.
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<div>Over the next few days, I remember briefly waking up every now and then. I think this must have been when my family was there and I recognized their voices. I would try to write them notes on my bed sheets and even on a clip board. Most of the notes just said I’m in so much pain, or my throat hurts so bad, put my back to sleep or I was checking on different people. On one occasion I got upset and I had written I wanted my Mama in which my mom loaded up the twins that she was keeping in the middle of a thunderstorm just to get up there to me for the last 10 minutes of visiting hours. I had lots of visitors, from my family, to my work family, to doctors I work with to make sure I was okay. Everyone was in complete shock because no one ever expected anything like this to happen. It just came on out of the complete blue.
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<div>I woke up 4 days later with my husband at my bedside. I had no concept of how much time has passed or what all had happened. I couldn’t believe I had been on a ventilator for 4 days. So much for it being a precautionary thing. I guess it turned into a very real thing. A very real and scary thing.
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<div>I have a lot of specialists to go and see, including a clinic in Boston that specializes in Angioedema. Right now, no one is certain as to what exactly happened. It could have been an allergic reaction to something I came across the day it all happened, which would be the better scenario but they are thinking at this point that that is unlikely. Right now we are calling it Idiopathic Acquired Angioedema. It will take lots of genetic and allergy testing in order to try and figure out if this is even the correct diagnosis and if it is, how we will treat it moving forward. There are drugs that can be given if this is indeed the correct diagnosis to stop the reaction and avoid being put on a ventilator. The unfortunate part is, if I do have this, I will deal with this for the rest of my life. I will always have a little baggy of emergency drugs (not just an epi pen) to administer to myself in the event of an episode which are unfortunately, unpredictable and caused lots of times by stress, an illness or a flare up of my RA. The doctors are thinking that the stress of the twins having the endoscopy/colonoscopy could have been a potential trigger.
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<div>After another night in the ICU, I was moved to a regular hospital room on the 12th floor. All the nurses and doctors that took care of me were absolutely wonderful. I never imagined I would end up staying in the hospital another 11 days (17 days total) before discharge. I ended up being diagnosed with multi-lobular bilateral pneumonia a couple of days after being moved to the floor. I started to spike fevers and then needed oxygen to keep my O2 sat up, just at rest. My heart rate was also elevated, hanging out in the 130’s-140’s consistently. A pulmonary embolism was ruled out because I had a very elevated D-Dimer as well as any blood clots in my legs or abnormalities in my heart. That was all normal, praise Jesus! I just had to get rid of the pneumonia. I was treated with 3 different types of antibiotics and I started to perk up and feel better over the next few days. I was even getting ready to be possibly discharged! Then, all of a sudden, in the middle of the night, I spiked another fever with some pretty violent chills. My labs the next morning said my WBC’s had jumped from 9,000-15,000 over night. This meant that the antibiotics they were giving me were no longer working. Thankfully, the cultures had finished growing and had resulted that morning as well and it was figured out that the type of bacteria I had in my lungs were pretty smart and had made themselves resistant to the antibiotics they were giving me and I needed a different kind. They started me on a new kind that morning and by about day 4 or 5 of being on it, I was finally starting to feel better. The only thing left for me to be able to do in order to be discharged was to walk without my heart rate getting too high and my O2 sat getting too low. The first few tries were an epic fail. Some days they wouldn’t even let me walk because it would immediately hit 145 the second I stood up. At that point cardiology was consulted. The cardiologist put me on a heart medication to help slow it down and that ultimately fixed the issue or at least made it better. The day of discharge, I had a walking test to see what my oxygen level was while I was walking on room air. Unfortunately, I was unable to walk without it going into the 80’s so the decision was made for me to go home on 2L of continuous O2 until my lungs were fully healed from the pneumonia and all the swelling and inflammation.
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<div>On day 17, August 8th, I was FINALLY discharged from the hospital! Arriving home and seeing my babies was the best feeling in the entire world!
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<div>I am still extremely weak and have to use a walker to get around because I get winded and have to sit down frequently. I think it may be harder recovering at home than in the hospital at times because I want to be a Mama and a Wife and I just physically cannot. That is hard on me. It’s hard on me to have to lay on the couch and watch my husband do all the work without help. But I will say, I am getting better and better every day, it’s just a slow process. I try to focus on doing a few “normal” mom or wife tasks a day with resting in between. Hopefully I will be back on my feet soon.
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<div>Please continue to keep me in your prayers as I am dealing with a lot of anxiety from all of this. The fact that it could happen again, at any given time, without warning is crippling to even think about. The only thing I know to do is to pray against it, always have my Epi pen nearby and a phone to call 911. I am currently trying to get in to see a therapist to try and work out the trauma and ptsd from all of this but most everyone I’ve contacted is booked up. It has also been recommended to me by several of doctors and friends of mine to try a more unconventional type of therapy that has helped countless people like me with ptsd. Of course these things are not covered by insurance and amount to almost 3,000.00 but I truly believe it could help me. Please pray for God to lead us in a way financially in order to afford these treatments. There have been study after study after study that they work and have helped SO many people. I know God will show me the way if me doing those treatments are in his will. He always does!
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<div>Also, please pray for my husband. He is so tired but he is being so strong for our family and pushing through. I am so proud of him. He has been my rock through this entire process and I truly do not know where I would be without him.
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<div>Thank you to everyone that took the time to read this. I know it was super long and detailed but I wanted to give everyone a chance to understand exactly what happened because it all happened so fast. Also, let this be a warning to anyone that has ever experienced an anaphylactic reaction to something. If you even think your throat feels like it’s swelling, please get to a hospital. It’s better to be safe than sorry. This last time I had almost talked myself right out of going. I begged the ER doctor not to admit me and I am SO glad she didn’t listen to me. I was blessed with a good outcome. I am alive. I am breathing. I am getting well. God was watching over me and my life will be forever changed. I pray God uses me in a way that I can help other people that ever experience something similar. I am giving all of this to God because my heart simply cannot bare it alone anymore.
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<div>Thank you to everyone that has visited me, prayed over me, prayed for my family, helped me or my family, brought us dinner, cleaned my house, took care of my children and was just a friend when I needed to talk. You know who you are and you are wonderful. I love you all! And I have felt every SINGLE prayer!!! I can promise you that!
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<div>God bless everyone, thanks for reading! I will be back to the old me soon!!
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Kristin Phillis

Kristin Phillis

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