Friday, June 24, 2016

Long Overdue Update

It's been quite a while since I've posted, and I am slightly embarrassed about it. I love writing and I love having this blog.. but life happens, right? I'll try to do better.

So much has happened since I made my last post, so I guess I will make this sort of a "catch up" post, along with some encouragement and inspiration (I hope).. I'm inspired to inspire others, because so many others have inspired me. I want to give back what has been given to me. I have so many wonderful people in my life that keep me going... I consider my family and friends huge blessings. Without them, I would be lost. Without my amazing team of doctors, I would be lost. Without my awesome, Heavenly Father, I would be lost.

It has been since August that I have made a post, and wow.. a lot has happened! Between seeing new doctors, having tests, procedures, introducing new medications, losing friends, meeting new friends, leaving a job after 3 long years, starting a wonderful new job that I love and going through trials and good times... it's been a roller coaster.. but it is well with my soul.

Since last August, my health has declined a lot. I'm not going to lie, there have been times when I have thrown in the towel and given up. Let my illnesses win. Let them control me. Let them overwhelm me. Let them take over my life. Let them change who I am. I'm only human, right? It happens. I won't say that I'm ashamed of it, but I'm not proud of it. Over this past (almost) year, I have slipped into this dark hole filled with fear, anxiety, loneliness, upset, heartbreak and gloom... but you know what? There has always been this little voice inside of me that whispers "keep going" when I am at my lowest. That little voice.. that one inside of me, inside of my heart... keeps me from giving up.

Last August, I was seeing a gastroenterologist at Mass General Hospital (woah!).. He was head of the department. Had his own research lab. Was supposed to be the best of the best. I met with his nurse practitioner on a regular basis in addition to my GI at the Newton-Wellesley Hospital. In a nutshell, I saw them from the summer of 2015 to the beginning on 2016. I just didn't agree with their course of treatment  (I'm not going to get into details and start the world's biggest debate), so made the decision to stop seeing them. It wasn't an easy decision, because I felt like I was back at square one: finding a specialist to work with my local GI in treating me. My case was too complicated for my local GI to work on by himself... so the hunt for a new specialist started.


Let's just fast forward to the beginning of 2016. I am struggling horribly with gastroparesis. I'm lucky if I can drink half of an Ensure and I can't remember the last time I had an actual meal. I am desperate for help, desperate for answers. 32 medications and I'm barely functioning... but I'm not in the hospital, so that's a plus. I only had two recent hospital admissions, but I got through them. Most people think its nuts that I'm on so many medications. (It is, but they keep me functioning)... I'm doing everything I can to find a doctor that specializes in my issues and that has good credentials.

YAY! I found this great, wonderful doctor at the Brigham (Brigham and Women's Hospital..one of the top hospitals in the country).. and his name is Dr. Chan... His credentials are excellent. He is head of motility, specializing in gastroparesis, GERD, esophageal issues, IBS and general gastroenterology... which is exactly what I needed. I called his office and BOOOOO.... he was booking out into June. I knew that it would be worth seeing him, so I knew that I should wait the 5 months.

In the meantime, I was seeing my local GI. At this point in time, he wasn't doing much, except prescribing me my medications, examining me each visit, and keeping track of my symptoms and monitoring me. He was at the point where he couldn't do much else. My case was starting to get so complex, that he just needed help. That's where Dr. Chan was going to come in. But for now, my local GI was going to help me with a huge problem I have been having.

Before I get into my GI issue that Dr. Levitzky was helping me with, I'll tell y'all about my hospital admission for my heart.

I woke up thinking it was going to be a normal day, I took my morning meds... including a new dose of Concerta (ADHD medication).. Later that day, I went to work. My heart started racing out of nowhere, my chest started hurting and got tight, I became disoriented and I could barely breathe. I told both pharmacists that I work with and they both told me to go home. I right away called my doctor that prescribes this medication, and he told me to go to the ER. We couldn't mess around with this, because I have an existing heart condition. When we got to the ER, they took me in right away, pumped me full of fluids, Zofran and pain meds. They did the usual EKG and X-Ray.. I was expecting to go home after that, but they wanted to keep me overnight for observation. The next day, they drew labs, did another EKG, did an ultrasound of my heart and a few other tests. I met with a hospitalist and cardiologist and I thought that I would definitely go home... Nope. The cardiologist wasn't ready to send me home. I was expecting to go to the ER to get an EKG and go home, and it turned into a 4 day hospital stay. It was the SVT acting up and I see the cardiologist next month. Since then, my heart rate has skyrocketed into the 200's multiple times, but I have been able to get it down on my own with tricks that doctors have taught me. It's very scary, but I am trusting in the Lord that He will take care of my heart.

Back to my GI issues.

TRIGGER WARNING! I'm going to go into details about a colonoscopy. Nothing too in depth, but enough to make you uncomfortable if you tend to get grossed out.

I got diagnosed with IBS a few years ago, after I had my gallbladder removed. (Shoutout to bile for causing me these issues!)... Anyways, all of these years, we thought it was IBS. Lately, I have been having "accidents" (I'm an open person and this is my blog, so yes... I just said that.).. My local GI was worried about the accidents that I've been having (I mean come on, I'm 22 years old and have to wear Depends. That's not normal), so he decided to do a colonoscopy. The colonoscopy was 3 weeks ago. I walk in, talk with the nurse and right away she is worried. She looked at my 32 medications (which most of them cause sedation) and she was worried about me being able to stay sedated during the procedure, since I'm used to being sedated all of the time with my meds. I got anxiety right away. I kept asking her to sedate me as much as possible. I didn't want to wake up during the procedure. She looked at my previous scope procedures and my sedation plans, and they were ALL done under general anesthesia. She told me that if I wanted the colonoscopy done under general, then it could take all day to wait for an OR and an anesthesiologist. I didn't want to wait around all day. I already was in bed with an IV with nausea and pain meds... I just wanted it over with. Then the nurse checked my blood pressure, and it was extremely low due to my heart medication. She told me that she can't fully sedate me when my blood pressure is that low. At that point, I just begged her to sedate me as much as possible and to not let me wake up. My GI came into the room. Held my hand while he talked to me, because he knew I was scared and we went along to do the procedure.

Guess. Who. Woke. Up. In. The. Middle. Of. The. Colonoscopy. I was fully aware of what was going on and I remember sobbing in pain and begging the nurse and my doctor to give me more medication to help me fall asleep. Eventually, I fell back asleep, but I will never forget that terrifying moment of being awake on that table. I pray that NOBODY else has to go through that, ever. I wouldn't wish it on my worst enemy.
After the colonoscopy, Dr. Levitzky refilled some of my medications and that was the last I saw of him. I have an appointment to see him to go over the procedure.. but my time with him on a regular basis is winding down. When I go to the ER at that hospital, he will be in charge like he always is, but as for regular checkups and help, he has done all he can do. He is such a wonderful doctor and I am thankful for all of his hard work these past 4 years, but it's time to move on to a doctor that can do more to help me and work with my doctors as a team. 


The day before the colonoscopy, I FINALLY met Dr. Chan! (3 weeks ago) Oh my goodness, what a guy! He went through all of my medications and agreed that I am on all of the right medications for my conditions. He didn't want to make any changes, because he didn't want to exhaust all of our future options. He was brilliant, took his time, answered all of my questions and reassured me that he could help me. He agreed to take over all of the medications that my local GI was prescribing as well. I knew right away that he was going to be my doctor in the long run. There was a connection and he was easy to talk to and approach. I felt like God introduced me to Dr. Chan and this could be the start of a new treatment plan and a path to better health.

A week later. I'm having HORRIBLE chest pains again. Dead center in the middle of my chest. I had no idea what was going on, so I called my PCP and he instantly thought it was GI related, so he wanted me to call my local GI... since my local GI isn't in charge anymore, I called Dr. Chan. Now, the Brigham is a huge hospital in Boston, and it can be nearly impossible to get in touch with your doctors at big hospitals. I left a message with the receptionist. Dr. Chan called me 15 minutes later. I was blown away. He told me that my chest pain was most likely from my esophagus. He wanted me to schedule an endoscopy ASAP, and reassured me that it would be done under general anesthesia (I told him about the colonoscopy horror story).. He also changed my PPI medication from Protonix to Nexium, which is stronger. He also wanted me to take Zofran, Phenergan and Tigan (all anti-nausea medications) around the clock and to keep a scopolomine patch (for nausea) on at all times. When he called the Nexium into the pharmacy, I right away get a text saying that it needs a prior authorization. That means that Dr. Chan needs to contact my insurance company stating that it's medically necessary for me to have the Nexium. I wanted to cry. All I wanted was my medicine and to go home. I work at a pharmacy and PA's can take WEEKS. Doctors take their sweet time to fill out the paperwork and insurance companies take their time to approve it. I was expecting the worst (Ok, so I'm a Negative Nancy sometimes, who isn't?)... But I walked into work the next day and it was filled. I wanted to cry tears of joy. Dr. Chan did the paperwork RIGHT AWAY and made sure that it got done so I could have my new medicine. He is already going above and beyond and it is absolutely wonderful. I am SO thankful. I will continue to see him on a regular basis as my new GI. My endoscopy will be in September under general anesthesia and I see him again in September, so it all works out!

Those are the major updates. I am still seeing my wonderful pain management team. I see my pain management doctor every 5 weeks to get the abdominal nerve blocks. I see the pain management nurse practitioner once a month for checkups, exams and medications, and I see the pain management psychologist every week to help cope with being 22 years old and chronically ill. I love my pain management team. They all work together to give me the best care possible.

One thing that I haven't talked about or opened up about is the passing of my best friend, Jordan. She lost her battle with chronic illnesses last September. She was my person. The one person that understood me completely. The person that knew everything about me. I think about her every day, and sometimes it still doesn't feel real. The last thing she texted me was "Please pray for me"... and I was sleeping. What if I was awake? What if I was awake to pray for her? Maybe if I prayed for her that night, she would still be here. Losing her is the hardest thing I've ever dealt with, but she lives in my heart. She is watching over us. She is dancing with Jesus and is with her Heavenly Father. Sometimes all we can do is simply trust God. Even when we don't see, we still have to believe.

If you're going through a rough time... whether it's financial difficulty, relationship issues, loss, grief, abuse, drugs,  depression, health issues... anything... I want to tell you something. WHATEVER you are going through right now is PREPARING you for the next season in your life.. Tough times don't last, tough people do. Your rough patch isn't going to last forever. One day, you're going to look back and realize how strong you were in that particular situation. Now I want to tell you something else: God is with you. He doesn't remove the difficulty and pain in your situation, but He will be there with you through it all. You don't have to fight alone. Sometimes, our problems are meant to help us in some way. God won't eliminate those problems if He thinks that they will benefit you in some way. But remember: you are NOT alone.

I am praying for each and every one of you today. If you have specific prayer requests, reach out to me on social media. Just remember to never give up. God won't abandon you. He has been my rock through my health issues. Let Him be your rock.

God Bless,

Emily

Most recent hospital admission.


This is what my night meds look like.


After 5 nurses and 8 sticks, they found a vein. 


When your mom brings you stuffed animals and coffee to the hospital <3


Dr. Levitzky and I


Dr. Rockett and I


Ready for my procedure. Must keep smiling!




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