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.

xoxo

Emily




                                          ^ My pretty momma and me after my successful surgery.




                                          ^ The beautiful view from my room at Mass General




                                              ^ No caption needed :')