Sunday, August 23, 2015

Gastroparesis: One Year Later

It always blows my mind how fast time goes by. One year ago, I heard the word "gastroparesis" for the first time, ever. What was this "paresis" word that my (amazing) gastroenterologist was talking about? At that point in time (last summer) I had already had my gallbladder out and was already diagnosed with SVT (heart condition), asthma, chronic headaches, chronic bile gastritis, visceral hypersensitivity, IBS, and FAPS. (chronic nausea/vomiting, bile reflux, and abdominal pain to go along with these issues)... but this whole "gastroparesis" thing was all new to me.

Gastroparesis is usually diagnosed through a gastric emptying scan. Last year was 2 years after I initially "got sick".. Dr. Levitzky finally decided that it was time for me to have my first gastric emptying scan (GES).. by then I had already been around the block with endoscopic procedures, HIDA scans, CT scans, MRI's, MRCP's, medication trials, surgeries, and other medical tests and trials. The GES was pretty disgusting. You basically eat a nuclear egg, bread with jelly, milk and water. Pictures of your stomach are taken throughout the test. At the end of the 4 hour test, the check to see how much food is still in your stomach. I ended up in the 5th percentile when I got the results for the test, which is pretty awful.

Since I got diagnosed with gastroparesis last summer, I have been diagnosed with pancreas divisum, sphincter of oddi dysfunction, chronic pancreatitis, chronic anemia and hypermobility syndrome. Since last summer, I've had many tests and procedures, three abdominal surgeries and three knee surgeries. It's been both physically and mentally exhausting. Each health issue comes with their own symptoms and most of the issues are being treated with high doses of a lot of medication. I'm now on 23 medications and have to take many pills/liquid doses every day and will have to be heavily medicated for the rest of my life. While all of my health issues have taken their toll on me, gastroparesis has absolutely been the toughest thing I've ever had to deal with.

Imagine having a never-ending stomach flu. Constant nausea, vomiting and dehydration. There are many symptoms of gastroparesis.. but I've been dealing with nausea, vomiting, chronic dehydration, weight gain, bloating, malnutrition, heartburn, low blood sugar, epigastric pain and feeling full after just a few bites of food/sips of water. I am on a diet that consists of mainly liquids, pureed food, low-fiber food, low-fat food and food that is easily digested. I drink a lot of Boost, Ensure Clear, Gatorade and stay away from anything with a skin, peel, seed and anything that is whole-grain and high in fiber or fat. I've also resorted to a lot of baby food. My favorite things to eat now are yogurts, Cheerios, different flavors of applesauce, white toast, scrambled egg whites, cooked veggies, mashed potatoes and peaches in syrup. To stay hydrated, I drink diluted Gatorade, water, Pedialyte and occasionally ginger ale if I am nauseous.

There aren't many medications to treat gastroparesis. I've been through all of the treatments, but the side effects were too risky, so I ended up stopping the medications. For now, I have a great pain management plan and a great anti-nausea plan. It's not perfect, but it is keeping me functioning (for the post part).. I actually laugh, because I can't imagine how people are on zero medications. The medications that I am on help improve my quality of life and truly keep me out of the hospital. My doctors have worked so hard to come up with the medication plan (23 medications total).. but to be honest, it's exhausting sometimes. I deal with a lot of negative side effects from the medications, but I know that the benefits of the medications outweigh the side effects. The biggest issue with the side effects have to do with my SVT diagnosis. A lot of my medications cause a fast heartbeat and mess with the QT heart intervals, but I am on medication to help with my high heart rates. My doctors keep an eye on my heart rate and I am able to check it at home to make sure that it's at a safe rate.

It may seem like I talk about my health a lot. Bingo! That is correct. I actually purposely speak about my heath a lot. Why?  .. because we need cures. We need to spread awareness. We need to let the world know what invisible illness is really like, so that people will be more understanding. If I had a dollar for every time someone told me that "I don't look sick" I would be rich. Did you know that 96% of illnesses are invisible? Yes, that's what I just said. That's why I make no apologies for talking about being sick. I will go to the ends of this earth to spread knowledge and awareness and to stand up for others who struggle with sickness like I do!

Back to the whole gastroparesis thing... A common misconception is that gastroparesis is rare.. it actually isn't, believe it or not. An estimated 5 million people struggle with this disease and many aren't even diagnosed. It breaks my heart that so many people struggle with this horrible disease. People who have gastroparesis frequently have to go to the emergency room and be admitted to the hospital to treat nausea, vomiting, dehydration and to receive fluids, pain medication and nutrition. The amount of times I've been hospitalized for gastroparesis is ridiculous and I have come across many ER doctors and nurses that barely even know about the disease. I am fortunate enough to have an amazing team of doctors that take control when I am in the hospital, so that I get the care that I truly need.

People often ask me how I stay so positive and upbeat... I'm not going to lie, there are days where giving up seems like my only option. What I will say is that my supportive family and friends, amazing team of doctors and God keep me going.

My sweet, sweet friends. I'm almost speechless, because when I think about how encouraging and supportive my friends are.. I lose my words. Every single night, I receive texts saying that they hope I can get some rest. Every single morning, I wake up to text messages saying that they hope that I have a great, low-symptom day. I'm friends with other "spoonies" online and I have an incredible support system throughout the entire country. I've lost some friends since I've been diagnosed, but have been blessed with people who have stayed by my side through the peak of my illnesses.

My medical team.. Just wow. They haven't given up on me, not once. My team consists of my PCP, three gastroenterologists (a regular GI, biliary specialist and a motility specialist), a neurologist, a neuro-gastrointestional nurse practitioner, three pain management doctors, a pain management nurse practitioner, a pain psychologist, a mind/body medicine nurse practitioner, an orthopedic surgeon, a general surgeon, an orthopedic physical therapist a pelvic physical therapist and a nutritionist. They are constantly keeping in touch with each other, so everyone is always on top of what is going on. Yes, they have disagreed with each other in the past, but they are on board with what everyone else is doing. They take their time with me, they help educate me and they inspire me to become a doctor myself. They have seen me happy, seen my tears.. they have seen me at my very worst, seen me at my very best and they have seen me hit rock bottom. I am reminded on a daily basis of the amazing souls who are behind my treatment plans. It took a lot of trials and errors with other doctors to find the team that I have now, and I just wake up every day with a grateful heart.

God. Our loving, caring, wonderful and amazing God. Whenever anyone asks me how I keep positive, I tell them that my faith in God keeps me going, all of the time. There have been times where I have wanted to give up, but God wouldn't let me. I remember when I had a severe flare-up of pancreatitis after a bile duct surgery in January. I had NEVER been in so much pain in my life... and that says a lot. I was screaming and crying in my hospital room, begging for the nurses to just give me something that would make the pain stop. After big doses of pain meds, bags of fluids and a heating pad for my abdomen, the edge was finally taken off, but I was still in a great deal of pain. I had my favorite stuffed owl at the hospital with me, and I just hugged it tight and cried out to God. I begged him to help me get through the night. I was crying and just kept saying "please" to Him.. I had my first complete meltdown and honestly wasn't sure if I was going to get through it... I woke up the next morning and my blood work was so much better and my pain was reduced! All I could do was thank God for getting me through the night. You see, God never leaves our side... even during the darkest times. I will never forget that night. I will never forget how I cried my eyes out to God.. and I will never forget how God brought me through one of the worst nights of my life.

I would be lying if I said that I never want to give up... I just know that I can't. There is too much to live for... There are too many things that I want to do. God has a plan, and that is what I remember when I feel like giving up. I never pray for God to take away my pain and discomfort... I ask God to get me THROUGH it. Why? Because how will I ever learn and grow if life were easy all of the time? You see, my health issues have taught me so much and they have ultimately brought me closer to God.

"I am grateful for all of my problems. After each one was overcome, I became stronger and more able to meet those that were still to come. I grew in all of my difficulties."

Since first getting sick three years ago and since getting diagnosed with gastroparesis one year ago, I have been able to educate myself and others about the illnesses that I have. I have been reminded who is truly there for me, who truly cares and who wants to help me. I have laughed, cried, felt sad and wanted to give up. I have learned that giving up is not an option. I've had ups, downs, flare-up after flare-up and sick day after sick day. I have lost jobs, friends, patience and relationships. I have gained strength, passion, friendships and hope. I have discovered what truly matters, gotten rid of anger and hate and learned how to be thankful for difficult times. I have had changes of heart, many frustrations and bad days.... but I've also grown each day and realized what truly matters in life.

Honestly, I have more bad days than good days. I have become a master at smiling and making things seem like they are great. That's just what people with invisible illness do. Don't get me wrong, I love smiling and laughing.. but sometimes it's so difficult to even fake it. Smiling through the pain and sickness is a must, but it's not always easy. The people who know me well can tell when I'm having a high pain/sick day.. but to a stranger or acquaintance.. I would rather just fake it and say "I'm good, how are you?" instead of seem dramatic and tell them that I'm sick. Honestly, most people don't understand what I go through on a daily basis... and it's not their fault. I used to get frustrated with people who "just don't understand" but I have realized that it's nobody's fault. You're not going to understand chronic illness unless you suffer yourself. I've become a lot more patient with my family and friends who don't truly get what I go through. I used to see it as people being careless, but now am a lot more understanding.

With gastroparesis, it's truly like having a never-ending stomach bug. My biggest and worst symptom is nausea and feeling "full".. I am on quite a few medications to help my nausea and vomiting. Due to malnutrition, I am constantly low on energy, exhausted and dehydrated. If you're a person who prays, I ask that you pray for a cure. There is a lot of GP research happening right now.. we are literally starving for a cure. There are many sufferers who are feeding tube and TPN (IV nutrition) dependent.. I am hopeful that more treatments will be discovered in the future and until then, I will keep fighting. 

"I've still got a lot of fight left in me.."

I don't feel like I am a strong person. Whatever ounce of strength that I do have, it comes from the Man upstairs. I'm just a regular person who believes, dreams and has faith. Like Robert Frost said: "The best way out is always through.." I know that I was dealt this hand so that God could get me through it. I honestly can't wait for the day that I become a doctor and can do research for different illnesses and diseases. I refuse to let the illness that I have rob me for a future in medicine. We can't let anything stop us. We must move on to follow our dreams. It won't be easy, but it will be worth it. I'm thankful for the difficult things that I have gone through, because they have made me the person that I am today. On the really bad days, I remember that I have come this far, and that God is going to take care of me and get me through it.

How do I get through the bad sick days? For one: I pray...I just ask God to get me through the day. Again, I don't ask for God to take the pain away, I ask Him to give me the strength to get THROUGH the pain. I often journal and write about how I am physically and mentally feeling at that moment and sometimes I actually cry out to God. I also like to distract myself from feeling sick. I will watch Netflix or listen to my favorite music, cuddle up with my dog, read a book or a magazine, blog (hey hey), text my friends, go on social media, dig into my studies or just take a nap and rest. Gatorade and ginger ale are my go-to's when I'm having a bad stomach day, and I have many medicines and home remedies that I will try to take some of my pain and other symptoms away. 

You see, no day is ever easy. No day is ever perfect. I have more bad days than good days.. but I am blessed. I am thankful. I am a fighter. I am a spoonie. I refuse to give up.

One year after my gastroparesis diagnosis, I have learned a lot. I will keep talking about this illness and I will continue to spread awareness. To my fellow fighters: keep being amazing and keep staying strong! xoxo

Thank you to everyone who has taken the time to read this blog post and educate yourselves about this disease. If you could take a minute to visit this website and learn more about GP, I would appreciate it SO much. If you don't feel like navigating the website, you can watch this three minute video:

Please visit this amazing website:

Thank you for all of your support.. today and always! 


Tuesday, July 7, 2015

Breaking Up Is Hard To Do

They say that you never truly get over your first love. In most cases, a "first love" is another person. Good thing that I'm not like most people.

I remember getting my first set of hockey equipment. It was Christmas morning and I was 5 years old. I had just finished the "learn to skate" program and it was time to start level one hockey. There was a giant hockey bag next to the Christmas tree and it was time for me to open it as a gift. It was filled with equipment! I was ecstatic. I knew that there was no going back.

Let's rewind a few years. At two years old, I was running around the streets of our Texas neighborhood with a hockey stick and street hockey ball. I was hooked at the youngest age. Heck, my parents used to put me in Dallas Stars baby clothes. I've loved hockey for as long as I can remember. It's all I've ever known.

So once I finished "learn to skate" and got that precious sack of equipment, I knew that I was going to keep digging this whole hockey thing.

Everyone who knows me knows how much I love this sport. Everyone who knows me knows that I'm obsessed with this sport. Actually, "obsessed" is probably an understatement. Even my doctors tell me that they think of me every time that they see something Bruins related. Customers at work refer to me as "Emily the Bruins Fan" and my friends think I totally have a problem. Come on, don't judge me. I could be obsessed with worse things. Leave me alone.

I still have the pucks from my very first goal and my very first shutout the year after. I still have every jersey from every team that I've played for. I still use the same glove, blocker, pants and chest protector that I've had since I was a kid. To me, there is no sweeter sound than my skates digging into the ice. There is no greater feeling than the cold air in my face as I coast around the net during warm ups. There is no greater accomplishment than denying someone a breakaway. There is no greater smell than the freezing cold ice. There is no greater joy than being on that ice, in that net.

Telling an athlete that their sport is "just a game" is ignorant and just plain rude. It's hard to fully understand something that you're not passionate about. 

Yeah, hockey is a game.. but that ice is the once place where I feel at home. It's the place where I feel like I belong. It's where I have the time of my life. It's taught me discipline, hard work, it has created lifelong friendships and connections, kept me fit and acted as an outlet for me. 

I was listening to music on my drive home today and ironically, Kris Allen's "Live Like We're Dying" came on. A line that completely stuck out to me was "You never know a good thing 'till it's gone.".. and I just instantly felt discouraged.

I saw my orthopedic surgeon last week as a follow-up (3 months) for my posterolateral corner reconstruction. He fully reconstructed my LCL as well as 4 minor ligaments on the outside of my knee. With all of the surgeries that I've had, my knee is basically brand new.. but extremely fragile.

When you know, you know. And that moment that I went down on the ice a year ago, I knew that my knee was toast. As I stumbled to skate off the ice, I knew that it was my final game. As I was taking off my equipment in the locker room, I told my friend and teammate (Kelly) that I was done. A month later (May & June of 2014) I was getting my medical meniscus removed and my ACL fully reconstructed. 

Even though I KNEW that I would never play hockey again, I didn't want to believe it. I constantly asked my surgeon when I could play again, and he always told me to "wait and see how it all plays out".. Last week when I saw him, I asked again... His answer? "You're done."... BAM. Reality set in.  17 years of the sport that I love and 4 major knee surgeries later - I was done. At age 21. 

I can't say that I'm surprised that my orthopedic surgeon (finally) told me that it was time to hang up the skates for good... it was only a matter of time. But, really? (Before you tell me that my surgeon isn't God I know that..but I also know the anatomy of my knee and what has been done... and I am a HUGE risk for getting hurt again and tearing up my newly constructed ligaments if I play again.)... But... It's finally time to be done? It breaks my heart to think about. I long for the times when I would be the first one on the ice and listen to my skates dig into the ice. I already miss the weird quirks that I had about my equipment. I miss the smells of the rink, the cheering from my teammates and I miss being made fun of for skating barefoot like a complete weirdo.

Hockey has been a major part of my life for as  long as I can remember.. and no, it's not just a game. It's a love, a passion and when I play, I play with all of my heart and soul. Hockey has given me a lifetime of memories, a lifetime of friendships and connections and has been my outlet, my happiness. When I hear "but you didn't play pro" or "but it wasn't your profession".. I actually laugh.. because it's clear that those people don't know what it's like to be passionate about something. 

Yes, it's a game... but it was MY game. My heart and my passion. It always will be. Yes, I can still coach, volunteer and watch hockey.. but NOTHING will substitute actually lacing up my old, beaten up skates and taking that ice with a smile. Hockey will always be my first love, and honestly, my heart breaks.

If I knew that 4 severe knee injuries would take me out of the game at just 21 years old, I would have cherished every moment of ice time that I had. I'm not going to lie, I took the game for granted, because I thought that I would play for years to come. In the Cape Cod Women's League, there are women in their 40's and 50's that are still playing.. And here I am at 21 years old, trying everything to avoid more knee surgery and having to rest every single day.

Yes, injuries took me out of the game for good.. but I am blessed that I can still watch and coach hockey. I must change my perspective if I will get through this.

One day, this will all make sense. Until then, I plan to stay as involved as possible (once some time passes).. I plan to focus on my running, fencing, lifting and swimming. Each day I am getting stronger.. and I am beyond BLESSED to have great doctors and physical therapists. My scars are proof that God heals. I am reminded of that every day.

If your passionate about something, put your heart and soul into it. Never take it for granted, and love it with all of your heart. Don't stop pursuing what you love and what you believe in. You won't regret it, I promise.

As far as my knee goes, it's doing well. I am still working on strengthening every day and I have my full range of motion back. I'm discouraged about where my injuries have led me, but I know that this is all meant to be. I am able to do 100 pounds on the leg press, squats, lunges and straight leg raises with 3 pound weights. My goal is to be jogging by the end of the summer, but it's up to my surgeon. (He's great, trust me.)

I want to thank everyone SO much for being a part of my ACL journey as well as this journey. It hasn't been easy, it has been painful and I've even wanted to give up at times... but I know that I can't. Must. Keep. Pushing.

If I could say one thing to hockey: it would be "thank you". Thank you for years of memories, friendships, ups, downs, challenges and most of all: pure joy and happiness. I'll always remember the many teams that I've played for, the connections that I've made, being the only girl on the boy's high school team, trying out and being selected to play for an elite organization and developing into the player that I am today. Hockey will forever be my passion, my love. And looking back, I now treasure every single moment that I had on that ice. I will miss playing terribly (I already do).. but everything happens for a reason. I am blessed and thankful. No matter what.

Sunday, February 15, 2015

"It Ain't Over Till I've Won"

To say that these past few weeks have been crazy, would be an understatement. The good news is that I have managed to stay out of the hospital these past few weeks. 

Two weeks ago, I had a week filled with four important doctor's appointments.

At the beginning of the week, I saw Dr. Forcione (Biliary/Pancreas specialist/surgeon at Mass General) as a follow-up from being in the hospital. He said that some people just take longer to heal and recover from the bile duct surgery than others. I also had lingering pancreatitis, but it's cleared up for the most part now. I have my next stent surgery in a week. The surgery will be at Mass General and Dr. Forcione will be replacing the plastic bile duct stent to keep everything flowing and to keep my bile duct from narrowing again. This surgery isn't as invasive as the last one, but there will be a lot of manipulation throughout my digestive system, so I will be out of commission for a few days. At this point, the surgery doesn't scare me. I know that I'm in good hands and I know that this is what I need to get better. The goal of these bile duct surgeries was to improve my liver function tests, improve pain and improve the narrowing and spasms of my bile duct. So far, so good! Praise God.

I had an appointment with my pain doctor and received my first of many abdominal nerve blocks. It was pretty interesting, actually. My pain doctor used an ultrasound to focus on different muscle groups in my abdomen and was able to navigate the needle into the correct muscle. It was extremely painful and I'm not looking forward for more to come, but my pain has improved some since I received the injection. 

I also saw my orthopedic surgeon for a few reasons. I have had a LOT of weakness and instability in my knee lately and a lot of pain on the inside, outside and the top of my knee. I received a cortisone shot in the fall to reduce swelling and irritation, but it was only effective for a few weeks. Dr. Rockett did an examination and suspected a torn LCL, because my knee was so loose and unstable. He ordered an MRI and told me that I would probably need surgery. That felt like a knife in my heart.

The day ended with an appointment with my primary gastroenterologist, Dr. Levitzky. At that point, he was frustrated because my case was becoming too complicated. Between all of my diagnoses, procedures, medications and surgeries.. I have still been sick and he was almost at a loss. 

He is still doing everything he can to treat me. Between him and the biliary/pancreas specialist, I am making some progress. Because my GI nerve/muscle pain, gastroparesis and IBS have been the worst of my gastro problems lately.. both Dr. Levitzky and Dr. Forcione decided that it is time for me to see a motility specialist to better help with mainly my gastroparesis symptoms. This doctor is at Mass General and is supposed to be one of the best gastroenterologists in the country. Not only does he specialize in patients with gastroparesis, he also specializes in patients with IBS and chronic, severe abdominal pain. It's very difficult to get an appointment with him, and he has to review your case before he decides if he's going to see you or not. Thankfully, he accepted me as a new patient and agreed to take on my case. He's extremely booked, so I won't be able to get in to see him until the beginning of June, but I feel like this doctor could be a HUGE answer to prayer! I was so nervous and worried that he wouldn't approve my case, but it just does to show that God works everything out in the end. I feel like there's hope. I have another amazing specialist added to my team of doctors.. and together I believe that they can truly continue to help me. I have faith.

Well, I guess I will talk about this past week, I had my MRI on Tuesday night.. I still get very nervous about MRI's... even though I've had many. I don't know what makes me more nervous.. the results or being in the actual machine. I think that I was so nervous this time, because I knew that something was very wrong with my knee. I've only been getting weaker over time and as time goes on, my pain increases.

I saw Dr. Rockett this past Friday to get the results of the MRI and to come up with a plan. The MRI showed a ruptured LCL, a dislodged screw from my last ACL surgery and excessive scarring across my whole ACL graft. The graft also isn't intact.  Dr. Rockett said that my only option is surgery. A new ACL reconstruction which he can do arthroscopic and a full LCL reconstruction, which he has to open the side of my knee for. I was speechless. 

For those of you who don't know, I got really hurt playing hockey last March. I ended up tearing my meniscus and ACL. Had a meniscus surgery in May and an ACL reconstruction in June. Out of everything I have gone through medically, the ACL surgery was hands down the worst pain I have ever endured. I am very nervous about going through this same exact surgery again, plus another ligament reconstruction at the same time. This surgery will be more invasive, and Dr. Rockett said that this surgery will have a longer recovery, and everything will be pushed back compared to last time. Out of work for at least a month, no hockey for at least a year, a locked brace for 8 weeks and crutches for 4 weeks. We aren't exactly sure how I tore my LCL, but there's a good chance that it was when I was playing hockey last year. 

There are two ways that I am looking at this situation. Part of me wants to be as optimistic as possible, but there's just a part of me that feels like I can't catch a break. I hate complaining and I hate being negative, but I do feel like I worked so hard these past 9 months to recover from my last surgery, only to have the same surgery again plus more work done to my knee. I want to believe that this will all make sense one day. I have to believe that.

While I am already scared about the pain and long recovery that I will be enduring, I want to look at this as an opportunity. An opportunity to set goals for myself. An opportunity to win a very big battle. An opportunity to overcome a huge obstacle. 

The main goal right now is to get my knee as strong as possible. This is my chance to work hard with rehab and make the most of this recovery. My surgery will be sometime in March or April, and I will take the rest of the spring to recover. As much as I do NOT want to hang up the skates for good, it may be in my best interest. I have many things that I want to do with my life. I want to become a doctor. I want to be a successful student. I want to do big things with my life and I can't do that if I'm being set back like this.

If I choose to not play hockey anymore, I don't see it as giving up... I see it as making the right decision to take care of my body. I have destroyed my knee playing hockey.. and I don't know how much more I want to put myself through. It WILL be one of the most difficult decisions of my life, but I have plenty of time to think. I honestly can't imagine my life without hockey.., but we will see what happens.

I remember why I started this blog in the first place. I started this blog last year when I had my knee surgeries.. wanting to share my journey and hopefully inspire others. I see this next surgery as an opportunity to do just that. I want to use my story to help others. I want to show others that giving up isn't an option, and that with God... ALL things are possible.

While I am very upset that I am still hurt and that I will endure more pain and struggle, I trust God. I know that He has a plan and I know that one day all of this will make sense. Sometimes when we pray, we beg for answers. We beg to know WHY we are being put in negative situations. The thing is, is that God reveals things to us when we least expect it. We can't expect answers right away. Sometimes we don't find out until much later down the road... and I am content with that. I don't need to know everything right now.. I just know that this will all make sense one day.

If there's one thing that I;m thankful for.. it's the doctors in my life. From my team of gastroenterologists to my orthopedic surgeon to my neurologist to my pain management doctor to my PCP.. I feel genuinely blessed. None of my doctors have given up on me.. they have worked so hard to get me to where I am today, and they are all answers to prayer. I am inspired every single day of my life to become an MD myself, and help people like myself. If I could go back and take away all of my pain, sickness and injury... I probably wouldn't. Why? Because it has made me who I am today. I still have a LOT of growing to do and I am nowhere close to the person that I believe God wants me to be, but these trials are shaping me into the woman that I am meant to be. And for that, I am thankful.

Although it feels like my journey has been going on forever, I know that it's just beginning. With my knee surgery coming up, this is a whole new journey and I welcome you to join me and follow me as I try to get through this.

I can't thank everyone enough for your love, support, prayers, care packages, cards, checking in with me, supporting me and believing in me. I wouldn't be able to get through this without God and the overwhelming amount of support I have. Thank you all.

"I'm in the middle of the longest fight I've ever had in all my life, and it ain't over till I've won.."

Sunday, January 25, 2015

Medical Update

What a crazy past couple of weeks it has been. I last updated everyone with my (at the time) upcoming bile duct surgery. Everything just all kind of went downhill from there.

At the end of December, (exactly 3 weeks ago tomorrow) my gastroenterologist was ready to do my surgery. It was the last surgery of the day, scheduled at around 2:30pm. I had a wonderful pre-op team and Dr. Levitzky came in and went over the procedure and all that he would be doing. I was glad to have my parents by my side, and I knew that I was in good hands.

It was about 7:00pm when I was waking up in the post-op room. What was supposed to be a 40 minute-2 hour procedure turned into a 4 hour attempted surgery that was unsuccessful to say the least. My bile ducts were in the wrong spots and my anatomy was all out of whack, so my doctor didn't have the techniques or equipment to go in there properly. He even called in another one of his associates (Dr. Bailen, who took care of me when I was in the hospital the week before.. while my doctor was on vacation) and he couldn't get in either. Both amazing doctors, just a messed up body that I have, I guess. I was so upset and just felt helpless. They kept me overnight to keep an eye on me and make sure that there were no complications.

I woke up the next morning (Tuesday( so confused... I was really groggy from the anesthesia and all I remembered was that my anatomy was backwards and that the surgery was unsuccessful. I was in excruciating pain from all of the digging around they did and they were keeping me comfortable with pain and anti-nausea meds. Dr. Levitzky came in to see me that afternoon to explain everything to me and to let me know that he was going to be sending me to a GI specialist at Mass General Hospital that would be able to preform the surgery in a way that he couldn't. 

This already made me nervous. I've had the same team of doctors for almost 3 years now, and I was used to everything being done at the NW Hospital.. I've only had some testing done at Mass General.. never a surgery, procedure or admission. I knew that it was one of the best hospitals in the country, so I knew that I would be in amazing hands.

Flashback to two weeks ago. I had a follow up with Dr. Levitzky to discuss the status of my symptoms, pain and to talk about what would be happening with Mass General. He pulled some SERIOUS strings to get me in to see this specialist. I never would have been able to get an appointment.. let alone surgery so quickly on my own. Dr. Levitzky emailed this new doctor and let him know what was going on. He instantly responded and said "I can see her this Friday, send her in."

I felt really blessed. I felt like there was hope. I felt like it was all going to be okay.

Then it was Friday (2 and a half weeks ago).. Dr. Forcione came out to get me and we went over my history, all of my tests, labs, procedures and my symptoms and current diagnoses. He was extremely professional, smart and I was pleasantly surprised. I was so nervous for seeing a doctor that I knew nothing about, but Dr. Forcione was supposed to be the best of the best. I trusted in that. He told me that he was going to go ahead and do the surgery for me. He asked me when I wanted it done, and I said as soon as possible. He looked at me and said "How about this weekend?" I was so shocked.. what a great guy. Offering to do this procedure on his day off. I was all for it. I just wanted relief and I wanted answers, so we set it up for me to be admitted to Mass General Hospital the next day, and he would do the surgery on Sunday morning. (two weeks ago today.)

I went home, packed and got things ready to spend a few days at the hospital. I was admitted into the hospital early Saturday afternoon and they got me comfortable in a private room with an INCREDIBLE view of Boston and the Charles River. Being in the hospital isn't fun at all, but I was able to see the beauty in my surroundings. I was thankful. I really was. They were extremely thorough with my medical history. I was on a heart monitor due to my SVT issues and on IV fluids to keep me hydrated and comfortable. I made sure to bring my Bruins snuggie to have a little piece of home with me :)

Sunday morning came and they brought me to pre-op. Dr. Forcione went over everything that he was going to do. The anesthesiologist was wonderful as well and eased my mind, because I was starting to get really nervous. My pre-op team was HILARIOUS and kept me laughing and smiling until I fell asleep.

I don't remember much about waking up, except that I kept asking if the surgery was a success and I kept asking what exactly Dr. Forcione did. I do remember waking up completely pain-free, which was HUGE.. since my I woke up in tears the week before. I kept telling the nurse that I had to use the bathroom and that I couldn't hold it. (I don't even know if I really had to go.. I was just really loopy) I kept asking if I could get up and go and she offered me a bedpan. I said NOPE I'LL HOLD IT! Lol.. I'm all set with that.

Dr. Forcione was able to cut out the end of my bile duct, the muscles that were spazzing and he put a stent in to keep it from narrowing back down again. He flushed out the stones and sludge (gross, I know... but hey, it's science!) and cleared everything out. It was a success! Praise God! I felt so so so thankful (and still do).. this doctor was the answer to so many prayers. He also diagnosed me with Pancreas Divisum which I was born with. The main symptom is chronic abdominal pain. Which explains a lot.

The team got me comfortable back in my room.. by the evening, the anesthetics and medications wore off. That's when things went downhill. I have never experienced such pain as I did that night. My whole abdomen was so sore and it hurt to even breathe. They upped my pain meds, threw on some lidocaine patches, and I took every "as needed" medication that I could to stop the pain. Nothing worked. It was excruciating. I have a very high pain tolerance  so I knew something was wrong.

It was tough, but I made it through the night. The surgery was successful, so I still had a lot to be grateful for. They delightfully woke me up at the crack of dawn to draw some blood. Bam. My liver enzymes and pancreatic enzymes were through the roof. I developed acute pancreatitis, which was a complication from the surgery. Treatment is very extreme IV hydration and essentially resting the pancreas and digestive system by being kept NPO (no food or drink by mouth).. The pain was horrible. Like nothing I've ever experienced. That Monday was a tough day. I wasn't expecting to endure a surgical complication. I honestly just cried out to God and begged Him to get me through it. I didn't ask Him to make it go away. Why would I do that? I asked Him to get me through it.

And He did.

The next morning (Tuesday) I was still in extreme pain, but my labs looked better. I was able to tolerate clear liquids on my own, and later that day... I was discharged and sent home. I felt like everything was a success.

Now we are looking at last week. I was in so much pain all week and wasn't able to go back to work. I figured it was just post-op pain.. but I couldn't eat solid foods. I could barely tolerate liquids.. I could barely function. I finally broke down and had the hospital page Dr. Forcione last weekend. He wasn't on call, so I wasn't able to get in touch with him. Because of the long weekend, I had to wait until this past Tuesday to talk with someone at his office.

So now we are into this past week. On Tuesday, I called his office first thing in the morning to let them know about my extreme pain, nausea and the fact that I wasn't able to eat or even drink liquids anymore. They told me that they would give him the message and have him call me.

I had follow ups with my pain doctor and Dr. Levitzky that day. My pain doctor wanted me to be seen right away by a gastroenterologist and scheduled an abdominal nerve block for as soon as possible. She tweaked my medications a little bit and we came up with a little bit of a new pain management plan. 

I went back to the hospital this past Tuesday afternoon to follow up with Dr. Levitzky. He sent me right to the ER. He could see how sick I was and wanted labs done ASAP, as well as getting me comfortable with fluids, hydration, pain meds and anti-nausea meds. I could barely function. I NEVER cry in front of my doctors, but I broke down in his office, because I just couldn't do it anymore. He wanted to see me next week for a follow-up, but was completely booked. So he added me on as his last patient to see on Friday. He's so sweet and always makes time for me. He's SUCH a caring doctor. 

I waited in the ER for almost 4 hours before I got a bed. I tried to keep myself calm, cool and collected... just praying that God would get me through it. My ER doctor was a doctor that I've had before (sad that ER doctors remember me lol) and as soon as he saw me, he told me that I needed to be admitted. I was extremely dehydrated. My blood was dark and very thick. I wasn't in good shape. It took several nurses and tries to get an IV started, which has never happened to me before. It was extremely frustrating.. but I tried to hang in there. The pain was just excruciating. I knew that something wasn't right. This was new pain. The pain that I had since my surgery. 

The admitting doctor came and went over everything with me. He told me that I would see someone from GI the next day to try to figure this out. My liver function tests finally went back to normal, which indicated that the sent and surgery truly were a success. He thought that this was lingering pancreatitis and a bad gastroparesis/bile gastritis flare.

That was good news about the surgery being a success. I felt like I had no fight left in me, but that good news kept me going. I tried to hard to hold onto hope. I had SO much support from my sweet, caring friends. Praying for me. Sending me scriptures and quotes.. just amazing support. That kept me going as well. I knew I couldn't give up. I wanted to, but knew that I couldn't. 

The next morning, they did some labs early... but I got a surprise visit from Dr. Kahan, who took out my gallbladder almost two years ago. He is one of the most wonderful doctors and men that I have ever known. I honestly couldn't love him more if he was my grandfather. He practiced medicine at that hospital with my grandfather for years. They were not only colleagues, but good friends. He always refers to me as "Mark's granddaughter" which is the sweetest thing. I remember that before my gallbladder surgery, him and the anesthesiologist were telling me stories about my grandfather. So special. Every time I'm in the hospital (whether it's admissions, procedures, or even my knee surgeries) he comes to see me. It's always such a great surprise to see him. He came to check on me, see what the latest was. He took my hand, looked at me and said "Emily, you're too beautiful to be sick." .. it was one of the sweetest moments, ever. My grandfather is the reasons why I go to a hospital that's so far away. These doctors make me feel like I'm at home. It truly is the best. Even though I was in pain, my day was made.

I was on the same surgical floor that I was in towards the end of December, so I had a lot of the same PCA's and nurses. Most of them remembered me. It made me feel a lot more comfortable. One of the nurses said "Emily! You look great, have you lost weight?" I said yeah.. it's called the IV fluid diet.. works like a charm! Haha

I've learned that you have to find humor in everything. Silliness is the key. Smiling is the answer.

Anyways, my gastroenterologist had been in touch with the hospitalists and they weren't 100% sure what was going on. They thought it was a combination of my gastroparesis and bile gastritis getting worse, lingering pancreatitis and irritation from the surgery. They ran lots of tests, but the main goal was keeping me hydrated and keeping my symptoms under control. They were working hard to also get in touch with Dr. Forcione at MGH, but weren't able to. It was getting frustrating.

BUT STOP AND PAUSE EVERYTHING! Wednesday night, I got the best surprise of my life (not kidding.) If you know me, you know I love hockey. If you know me well, you know that Dennis Seidenberg of the Boston Bruins is my favorite player of all time. My good friend braved the 26 degree Colorado weather and got Dennis to sign a personalized picture for me. He wrote "To Emily, Get Well" and then signed it. I had tears in my eyes. I couldn't stop smiling. Such a special moment. I was so beyond thankful. I still can't believe that it really happened. 

Thursday was tough. I was starting to get really uncomfortable and just sick of the hospital. This was my 6th hospital admission in less than 6 weeks. When was it all going to end? I just wanted to feel better. I just wanted the pain to stop. I made it through the day though. At about 9pm, Dr. Levitzky came to see me. I just love him. He's helped me so much over the past few years. Every time I'm in the hospital, he makes the time to come see me and stay in touch with the hospitalists to make sure that I'm getting the correct care. He also knows how much I love hockey and always comments on my Bruins gear. He couldn't stop laughing at the fact that I had my Bruins blanket in the hospital with me. Then he pulled down my blankets and said "Really? A Bruins blanket AND shirt?!" It was so funny. He has shown me how to have a sense of humor through all of this. 

He told me that my liver function tests were still back to normal and that he was very confident that my surgery was successful this time. He was mainly worried about my bile gastritis and gastroparesis and possibly pancreatitis. He came up with a plan to just run more blood tests to rule different things out (just to be safe).. At that point, I was tolerating a little bit of clear liquids and was able to take most of my medications by mouth. Still nobody had heard from Dr. Forcione, but all of the doctors agreed that I needed to be seen ASAP by him.. so they kept trying to work it out and get me an appointment.

It was Friday morning, and when the doctors rounded, they basically told me that everything was unclear, because all of my DX's overlap and it's hard to pinpoint exactly what is going on. I was frustrated, but I accepted it. They finally heard back from Dr. Forcione. Those doctors pulled some SERIOUS strings to get me in to see him so soon. I was so grateful. I felt like things were coming together. I was discharged from the hospital this past Friday and have been resting all weekend. I'm still in a lot of pain and I can only tolerate liquids for the most part right now. I just want to feel better. I'm trying to hold on to whatever fight that I have left in me.

I have a big week coming up. They got me in to see Dr. Forcione at Mass General TOMORROW! Praise God. I can't believe he agreed to see me so soon. He has gone above and beyond to help me. All of my doctors have. I am hoping to get a lot of answers tomorrow and to see why I have been in so much pain and discomfort since surgery. I have my abdominal nerve block at the hospital on Friday morning and then a follow-up with Dr. Levitzky on Friday afternoon. Still can't believe he's staying late to see me (His day was booked, but he fit me in at the end of his day).. I feel so blessed. Even during the storm, there are things to be thankful for.

I have another surgery with Dr. Forcione scheduled at the end of February. He will be removing my stent and re-cutting the end of the bile duct to make sure it stays open. I just have to get through this.

There was a lot to catch up on! In the meantime while all of this is going on, I have been keeping strong in my faith. Things have seemed to be getting worse over this past month, but there is still so much to be thankful for. My body has really taken a beating this past month, but I'm thankful in so many ways. After every doctors appointment, hospital admission, ER visit, surgery and procedure, I gain new insight and wisdom. I get a new perspective and I become more and more thankful for the blessings in my life. If I didn't go through what I have gone through, I wouldn't be the person that I am today. Everything we go through (positive and negative) shapes us into the people that we are meant to be. I believe that God is using my pain for a greater good. One day, it will all make sense. Until then, I will have faith and I won't give up. I want to encourage you tonight to get through whatever it is that you're going through. It may be tough, but you are becoming the person that you are meant to be. Keep fighting. Don't give up. You can do it. Just have faith.  Don't give in. Not tonight. Not tomorrow. Not ever.

God bless each and every one of you. Thank you for all of the prayers, encouragement, love support and hugs. I am so lucky to have so many wonderful, supportive people in my life. I truly am blessed. 

If you're in the New England area, please stay safe during this upcoming storm! I will pray that everyone can stay warm with their families and be as safe as possible. It's amazing what mother nature can do. 

I will update my blog tomorrow after my big appointment with the GI specialist. Thank you for taking the time to read my medical update and for following along during my journey. To my spoonie family: we are in this together. Remember that you are never alone.



                                          ^ My pretty momma and me after my successful surgery.

                                          ^ The beautiful view from my room at Mass General

                                              ^ No caption needed :')