Monday, April 23, 2012

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.

Tuesday, September 27, 2011

Top 10 things I have learned in the past 8 weeks

Before surgery, I bought a T-shirt with a turtle on it that says, "Slow and steady wins the chase." I have thought about that phrase a lot during my recovery.  This is not some sort of race to the finish line. Progress happens slowly, and sometimes it's hard to see what is happening on a daily basis. But before I knew it, I won the chase. Well I guess I could say that if I consider the chase being able to eat again or starting to hang out with friends again. But I know progress isn't over, and it will still be a slow and steady race for months ahead to eliminate the rest of the pain and gain my full strength back.
 
Throughout the last two months, I have had time to process and reflect on this experience. It cracks me up now to think that I was going to blog this entire time. Oops. Honestly I have not really had the motivation or energy to write, even though I have contemplated it several times. Often taking naps or watching reality TV with my mom has taken precedence. Anyways, I compiled a top 10 list of some of the things that I have learned by being in the hospital for so long and by recovering at home. I want to do another blog post soon about things that doctors have said and done that were really helpful and things that weren't helpful at all. That will come at a later time though. For now...

Top 10 things I have learned in the past 8 weeks

10.  Don’t be afraid of narcotics.  I used to avoid taking them until I was practically keeling over because I was scared of the side effects and becoming addicted.  Yes, it’s important to be mindful of those things but these drugs really do wonders with pain. When pain is managed, the body can heal faster.  Blood glucose and blood pressure is lower too.  I know there are many stigmas around some of these medications because many people abuse them.  But physicians- don’t be afraid to prescribe these medications to patients who really need them.  And don’t stigmatize patients who are taking these medications for real pain.  Both chronic pancreatitis and major abdominal surgery = real pain.

9.  When you are in the hospital, modesty gets thrown out the window no matter how hard anyone tries.  You get to the point where you just stop caring about that sort of thing.

8.  Surgeons do more than just cut.  I guess I always stereotyped surgery as a specialty that had minimal patient interaction.  Not true at all.  Surgeons need to be able to reassure and care for their patient and the family before, during, and after the operation.  My surgeon had some of the best patient skills I have ever seen.  It made the process so much more comforting and bearable.  I recently learned that I will be following up with my surgeon for 5 years now, so the relationship will continue for years to come!    
                                                           
7.  I can live without coffee and chocolate. It actually got easier the longer I went without them.

6. Every patient who gets abdominal surgery needs a pillow pet! Wait, I take that back. Every patient needs a pillow pet. I recommend the giraffe.

5.  Patients can get really attached to their care providers, especially if they are good ones. I had the same chief resident see me before surgery and every day in the hospital for two weeks following surgery. After 14 days, she was switching to a different surgical rotation. After she left the room on the last Sunday, I couldn’t hold back tears, because I felt like we had formed a strong doctor-patient bond in those two weeks. She had seen and treated me at my worst, but not only that, she treated me as a real person. In that short time with her as my doctor, I learned about her upcoming wedding, her new dog, and life as a surgical resident. I never realized how attached patients may get to their care providers in such a short time, but I certainly did. I think that goes to show how awesome my resident was too!

4.  Never take peeing, pooping, and eating for granted.

3.  Having a feeding tube is kind of like having a baby. I know I have no idea what it is really like to raise a baby, but I hear that they cry and wake you up a lot at night. I remember in 6th grade, I got to take home one of those baby robots for a few days. It would cry at random times, and I would “feed it” until it cooed. Most nights, sleep was disrupted. My feeding tube reminded me of that whole experience. It beeped when it wanted more food or when the flow got interrupted.  I would wake up at the crack of dawn to fill the bag with more food and prime the tube in order to make it happy again.

2. Recovery is a full time job. Once I got home, I had a hard time being satisfied with showering and walking as my accomplishments for the day.  I wanted to be productive with my life again. Now I realize that right now, all I need to do is continue to heal. It is good to have distractions throughout the day to keep me busy, but if I’m tired and need a nap, I’m taking a nap and not feeling guilty about it.

1.  Prayer makes a big difference. I think I knew this before, but it sinks in more when you actually experience the power of prayer. Thank you so much to everyone who prayed for me on the day of surgery and has been continuing to pray throughout this recovery. The team was able to harvest 7,100 islets/ kg which is incredible and so much more than they were expecting. As of today, I am almost off insulin; they are expecting it to be really soon. When I told a friend about my islet yield in the hospital, he was like, “well that doesn’t surprise you, does it?” I thought about that for a minute. Then he said, “So many people have been praying for you.” I know God answers prayer at different times and in different ways, but I think the most important thing I have learned through this whole process is that I need to trust God no matter what. :)

Tuesday, August 16, 2011

Successful surgery

The surgery is over!!! Actually it's been over for awhile. Today is day 15 post-surgery, day 16 in the hospital. I haven't been up for blogging or really doing much of anything that requires brain power until quite recently (like right now), but hospital boredom has finally got to me...

So as you're probably aware, the surgery went great! The last thing I remember before passing out on the operating table was my amazing surgeon reassuring me that I was in good hands. Thank you, thank you, thank you for praying on the day of surgery. They were able to harvest over 7,000 islets/ kg which is much higher than they were expecting to get due to the calcification of my pancreas. I think it's very promising that I will be insulin free in the future once my islet cells kick in and adapt to their new home in the liver. :) Also, the surgeon said my pancreas looked awful when he took it out, calcification on the inside and out, so it was a good decision to have surgery. yay.

These last two weeks have been such a blur, but I'll blog more about what I remember from my hospital experience later. The nurse just gave me some meds down my J-tube (the feeding tube that goes into my jejunum), and I feel really funny right now. So I'll come back to blogging later. I should be getting discharged soon, so hopefully my next post will be at home!





Friday, July 29, 2011

I trust that I am in good hands.

I am ready. Last night, I had a dream that I woke up and the surgery was over. I was so relieved. Then after my dream started becoming more and more unrealistic and weird, my brain told me that I was dreaming and I woke up bummed that I still have three more days to wait. All of this anticipation is tough! I feel like the days are going slower and slower. But... I have one more day that I can eat (tomorrow!) and then one day of prep and rest before the big day. So I plan to take advantage of them and make the most of this weekend.

I had two full days of pre-op testing and appointments at the U of MN this week. It was slightly overwhelming but very beneficial and reassuring at the same time. My surgeon and the entire team are absolutely fantastic, and I trust that I am in good hands. I had my questions answered (besides a couple things that haven't been studied yet, my research project post-surgery?) and got flooded with information. But now I fully know what to expect. And my parents know what to expect. I keep thinking about my poor parents having to wait 12+ hours in the surgery waiting room on Monday. Their support has been incredible.

Speaking of support, I want to thank all of you for your love, support, and prayers so far!!! All of the texts, calls, cards, and messages mean the world. I'll probably be pretty out of it for awhile after surgery (they say the first few days are the roughest), but then hopefully after that, I'll be more responsive. I am going to be honest with myself and others about how I'm feeling during recovery and if I'm open to visitors. At this point, I really can't anticipate how I will be feeling. So thank you for understanding. :)

Tuesday, July 19, 2011

Everyone, meet my panky. Panky, meet everyone.

Welcome to my blog. I've never blogged before, but I love to journal and I've decided that I think it will be helpful to share my story and experiences on a broader scale. These past few years have been a roller coaster of a medical journey, but I have learned so much in the highs and in the lows. I have learned what it's like to be a patient. I have learned that medicine is not always black and white. I have an even greater appreciation for medical research and the unanswered questions that need to be studied. And most importantly, I have learned to trust in God. That part has not always been easy, and it's something that I'm continuing to work at with every new bump in the road. But God has been faithful even in the darkest of times. Like it says in my favorite Psalm (139), "Even the darkness will not be dark to You; the night will shine like day to You."

So in case you're confused and have no clue what I'm talking about when I refer to "medical journey," let me give you the low down. I had my first case of acute pancreatitis when I was 19 (March 2007). I was a freshman in college and was preparing for the big phylum test in zoology when I started having excruciating abdominal pain. After a few days of the pain, I couldn't bear it anymore and went to the ER. I don't remember my specific lipase level, but it was over 20,000 and the ER doc in Springfield, Missouri said that he had never seen higher. I was hospitalized for several days, and they removed my gall bladder after thinking they saw a small stone blocking the common bile duct.

I had several other attacks of acute pancreatitis during undergrad and was hospitalized 3 more times. On my last hospitalization in September 2009, they did an ERCP with biliary sphincterectomy. ERCP stands for endoscopic retrograde cholangiopancreatography. Try to say that five times fast. Anyways, that procedure basically involved them scoping out my pancreas and biliary tree, but it provided some temporary pain relief.

Despite the pain and hardship involved in dealing with pancreatitis, God's grace has been evident in my life. I remember on the morning that I was going to drive down to college to start my senior year, I had a sudden, painful attack of pancreatitis. I thought I was going to have to be hospitalized again. My parents started praying for me, and suddenly the pain went away. Instantly. I believe it was a miracle. I was able to drive down to school that day and start my senior year. I am also so grateful to have been able to graduate from college and finish my first year of med school at the University of Minnesota.
 
Over the past year, the attacks have become more frequent and I have noticed that the function of my pancreas (this is what I refer to when I say panky) has been declining. After an attack during midterms last October, my adviser connected me with the GI team at the University of Minnesota. They helped give me a proper diagnosis, find a cause, and offer a variety of treatment options. Physicians at the U of MN pioneered the total pancreatectomy with islet autotransplant which is a surgery where they remove the pancreas, harvest the islet cells that make insulin, and transplant the islet cells back into the liver. The goal of the surgery is to eliminate future attacks of pancreatitis and hopefully prevent diabetes (because chronic pancreatitis can lead to diabetes). I have been presented with several different options for surgery and met with different physicians, but this surgery seems like the best option in the long run. I am scheduled to have surgery August 1st.

Having the surgery means taking some time off from med school. Recovery could take up to a year. The decision to have the surgery now was hard, because I don't want to put my life on hold. The surgery itself is scary. Whatever I decided would take a lot of faith and belief that God really does work all things for the good for those who love Him (Romans 8:28). When I look at God's plan for my life, I envision myself loving and serving Him by loving and serving people. I believe that I am called to do that through medicine. When I am in pain with pancreatitis, I can't fully give of myself and reach out to others. I am hoping that once this is said and done, I'll be able to fully love and give without hindrance.

In the last week, 1 Corinthians 13 keeps being reinforced in my life. "And now these three remain: faith, hope and love. But the greatest of these is love."