Happy anniversary to me!

Reflections at one year post-op...

Happy one year anniversary to me! I can hardly believe tomorrow is the one year milestone of my total pancreatectomy and islet autotransplant (TP-IAT). What a reason to celebrate!! Exactly one year ago today, I was emotionally on the edge of my seat as I was preparing for a year of unknown. What will recovery be like? Will I have any long term complications? I knew I just had to put it in God's hands. Now I can honestly say that this last year has been one of the most challenging, rewarding, and renewing years of my life. And I am so glad for days like today where I have some time to pause and reflect on this whole crazy experience.

When I went into surgery, the doctors told me that a full recovery would probably take about a year. And even then, being fully recovered means different things to different people. I'm glad they said that so I didn't put undue pressure on myself to get back to normal ASAP. Part of me was skeptical and thought, "oh, I'll be able to start school again in a month after surgery." Ha good one Rae. They were definitely right; recovery took time and patience. But slowly and surely, I made progress. By the grace of God, I started eating again, being active again, weaning off pain meds and insulin, and going back to everyday life. Now a year later, I can say the physicians were right. I am fully recovered, not "100% normal and perfect," but who is? I'll always have to be mindful of my blood sugars, my digestion and enzyme usage, and my hemoglobin/ vitamin levels. But I think being mindful of those things is actually good for me and makes me more health conscious in general. I am amazed at the power of exercise (something I've always known but it's cool to see results!), and now I can hardly go a day without being active in some way whether it's walking, running, zumba, biking, whatever. I feel healthier than I have in a really long time, and this "new normal" is such a blessing and honestly better than I could have imagined.

I was talking to a pancreas friend recently, and she said that she would not trade this entire experience for anything: her disease, the surgery, any of it. She said she has learned so much and is the person she is today because of what she experienced. After some consideration, I think I have come to the same conclusion. It is hard to say with complete assurance that I am glad that all of this happened, but I know it has shaped who I am today. I am reminded of Romans 5:3-4 which says, "We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope" (ESV). I know it is so hard to say that in the midst of suffering. But now I feel like I can look back and say that no matter what life brings in the future, whether trial or pain, I have hope in something more. I have hope in Jesus Christ, my Savior and Healer. I have realized that healing means so much more than just the physical but the spiritual and emotional as well. 

This year has also brought some tough questions. I am still wrestling with many questions that would take pages to work through. As I shared my story at a church retreat last winter, I wondered why mine had a happy ending when others are less fortunate. I didn't do anything to deserve such health. I'm so grateful for it and don't want to take it for granted, but I was overcome with guilt at why I'm doing well while others still suffer. I can only use what God has given me to the best of my ability and live each day to the fullest. This is an excellent personal reminder to not take my life for granted and use my passions and abilities to really make a difference.


I think one of the best things about this entire experience is the INCREDIBLE people I have had the privilege of meeting and befriending along the way. You guys totally know who you are. It has been such a blessing to get to know each of you and form lasting friendships. I can’t help but believe that God brought you guys into my life (or vice versa) to really uplift and encourage each other throughout the last year. So thank you for everything. :) To all my friends with and without a pancreas, here’s to another beautiful year of life.. let’s make it count! Okay time to finish watching the Olympic gymnasts so I can get even more inspired.. :)

My patient experience: how we can become better physicians because of it.

What Makes a Good Physician

1.       Sit with patients at their bedside. When I was first hospitalized with acute pancreatitis during my freshman year of college, I appreciated that my physician sat at my bedside, because it showed he cared and had enough time to make me a priority. It seems like a small gesture, but it makes a big difference. In contrast, I roomed with this sweet elderly woman named Wilma, and her doctor would stand at the foot of her bed.  This made him seem distant and disengaged, and the contrast between our physicians was noticeable and left an impression on me.

2.       Recognize that medical decisions can be really difficult for patients, and give them time and space to make these tough choices. Even though you might have a strong opinion about what to do for a patient, realize that some decisions have big implications.  And some decisions do not have clear answers.  The patient is the one who will ultimately have to live with the decision. My surgery was the hardest decision of my life, because there were so many factors to consider and the data is limited.  The stakes were high with waiting until my pancreas got more damaged or doing the surgery immediately. Both decisions carried a risk for chronic pain and diabetes. I got conflicting opinions from pancreatic experts which made the decision even harder.

I had a physician friend suggest that I ask my surgeon, “If I was your daughter, what would you do?”  I was hesitant to ask this, because I feel like we have been taught to let patients be autonomous and make their own decisions. I decided to ask my surgeon anyway. He took some time to think about it and ended up saying that he would recommend the surgery sooner rather than later while I still had functioning islets and was going into this relatively healthy. I really appreciated that my surgeon did not say, “I can’t answer that. You have to make the decision for yourself.” I knew I was the one who was responsible for my own decision, but I needed help in making such a major judgment call. My surgeon was the one who had witnessed the outcomes of 100+ patients post-surgery and knew what individual factors contributed to their complications and recovery.  All I knew was the limited amount of data that had been published and the conflicting opinions I was hearing.  I trusted my surgeon though, and I wanted to factor his honest judgment into my decision.  After answering my question, my surgeon acknowledged how difficult the decision was for me and told me to take as much time as I needed. He also told me that it is important to have comfort and peace about a big medical decision before committing to it.

3.       Celebrate the little successes with patients. If they able to void for the first time without a catheter, celebrate! If they get out of bed and walk to the chair, celebrate! These little things are actually a big deal.

4.       Encourage optimism. I think there is a way to be honest with patients while still providing hope. My surgeon would call the few complications I had during recovery “speed bumps” instead of setbacks. This implied that I was still moving forward in my recovery, but these speed bumps forced me to slow down every once and awhile. My physician’s optimism was contagious, and my family and I remained optimistic that I would have a successful recovery. Honestly, I believe attitude plays a huge role in how patients heal and recover.

5.       Collaborate with the nurses. My nurses were my advocates on the floor, because they spent so much time with me and really became familiar with the ups and downs in my recovery. They are so valuable and should never be taken for granted!

6.       Ask patients if they have questions.  I really appreciated this from my doctors. They also acted like all my questions were valid, although in hindsight, I probably asked some stupid ones. (On my first hospital admission with pancreatitis in college, I asked the ED doctor what lipase does.) I also think it is important to give patients time to think if they have questions or encourage them to write questions down.

7.       Provide some comedic relief (or at least try). It helps lighten the mood, so the patient forgets about their own situation for a minute!

8.       Build a relationship. Especially if you see a patient for an extended period of time, become their friend and ally. I had the best chief resident here in the hospital, and I actually looked forward to getting woken up on rounds each morning, because this resident was so friendly and caring. She let me into her life as well, and I learned about her life as a surgical resident, her upcoming wedding plans, and her new dog. My friendship with her made me realize the importance of a strong doctor-patient relationship. And yes, this goes for surgeons too!

A Physician That Needs Extra Coaching…

1.       Does not listen. This has happened multiple times along my journey with pancreatitis, but one particular incident stands out. When I was in the emergency department for my 4th hospitalization of acute pancreatitis, the physician insisted that I get a CT scan. I tried to explain to him that I just had a CT scan a month before in Minnesota (now I was at a different hospital in Missouri), and those results were normal. I was not interested in getting unnecessary radiation and wanted to discuss this further with the gastroenterologist on the ward since I would be admitted anyway. The physician walked out of the room and instead of offering any sort of explanation, he sent the nurse in to give me oral contrast for the CT scan. I ended up getting the scan, and later the gastroenterologist said that it probably was not necessary. I really wish I would have been more vocal in that situation or just had the physician listen to me in the first place.

2.       Assumes the patient knows more than they do. This may have been because I was a medical student, but I had several people assume I knew how to count carbohydrates, give myself insulin injections, etc. I had one physician start talking about hypokalemic metabolic alkalosis in detail which went completely over my head. That stuff is confusing for anyone, let alone someone who is sedated from narcotics.

3.       Does not greet or explain their role to the patient. I had a large care team at the University of Minnesota which was great, but there were so many people who came in and out of my room that it got confusing after a while. Some people assumed I remembered them after our first encounter, but it was hard to keep everyone straight especially because I have no recollection of my first few days in the hospital. I think it is helpful to introduce yourself to a patient for the first few encounters to make sure they understand who you are and why you are there.

4.       Jokes about when a patient will be discharged from the hospital. Please never say to a patient, “you might be able to go home in a day… or three,” and then start laughing. Patients get quite sensitive about getting discharged from the hospital.

5.       Acts disinterested in the patient or acts like they are an inconvenience. I was readmitted into the hospital for dehydration and had a medical student process my readmission. I am sure he had an incredibly long day of surgery, and it was obvious that he did not want to be there. I did not want to be there either but at least tried to be friendly!

6.       Stereotypes patients based on their medical condition.  I know we learn the most common presentations of diseases, and our cases highlight that. But please remember that patients rarely present that clearly and are a complete whole person that needs to be considered. Please try not to stereotype patients based on what (may or may not have) caused their health problem or what medications they are taking.