Category: Medicine

Sometimes people will ask me about what I have learned from being a patient that impacts the way that I function as a physician.

The answer is that there are many things. I have touched on some of them in this blog. One of the key things I think is summarized in this: “It is what it is.” 

We were traveling through Turkey on a family vacation along with my aunt and uncle. Asghar had put on a scientific meeting in Istanbul, and I was invited to speak. After the meeting we took the opportunity to travel through Turkey. We rented a multi-passenger van and had a wonderful time traveling to cities such as Troas (Troy), Assos, Ephesus, Kusadasi, among others. 

We had a GPS that guided us along nicely (as long as I put in the correct destination!) The trip was amazing and so much fun, but was not without moments of stress or confusion. As we tried to figure things out, we learned a valuable phrase and lesson from our aunt as she would say, “It is what it is!” That would be wonderfully calming as we realized that we could only control so much, and we would make the best of the circumstances.

At one point we were headed across the countryside with a final goal of the ferry terminal that would take us back to Istanbul. We needed to catch this ferry across the Sea of Marmara. This would take us to where we could return our van and then fly back home the next day. I was dutifully following the GPS directions when at one point it said, “In 50 meters turn left on ‘unnamed road’.” 

That did not sound good. 

The road didn’t look good either! We started scrambling and looking. Navigator Sarah took charge and redirected our path. The alternative path led us to a road that ended up being closed! At one point we went over a mountain pass and came upon a police check point. The policemen wore military uniforms and had large automatic rifles. As we pulled up, I rolled down the window and hoped they spoke English. “We are lost,” I nervously said as I smiled at them.  They looked at our van full of family and literally laughed and smiled and just waved their arms for us to keep driving. 

That didn’t help us to know where to go but, “It is what it is!” 

Eventually we realized that when I had programmed the GPS, I had entered the wrong ferry terminal. Once again, navigator Sarah was on the job correcting our pathway, but my error had burned away a lot of time.  I was getting anxious that we would not catch the ferry in time. (The last one of the day.)

“It is what it is …” 

Eventually we ended up on a gravel connecting side road that connected to the main road toward the ferry. Car and after car flew without a gap as the time ticked away. There was a steep incline up to get up onto the very busy main road. The van was underpowered with a six speed manual transmission. Slipping the clutch and waiting for any gap I could see I did my best to gun the engine, wheels slipping in the gravel as we accelerated, and then shifting through the gears to get up to speed. 

“It is what it is …”

Eventually we approached the ferry terminal. Did we have enough time? Would they let us on? As we pulled up we were directed immediately onto the ferry. The gates were closed behind us. We had caught the ferry but with just minutes (seconds) to spare! 

Sigh. We laughed in relief. And at the goats poking their heads out of the truck front in back of us!

“It is what it is…”

Did I mention that we had a similar experience catching this ferry in the other direction earlier in our trip? For that one we had gotten into the line for the wrong ferry (signs in Turkish) and didn’t realize it until the last minute. That time also as we drove over to the correct line we went directly on the ferry as one of the last vehicles on board before it left.

What does this have to do with medicine and my health journey?

My primary residual symptom is fatigue. It is hard for me to have my brain wanting to do dozens of things and yet my body being limited. I start the day with grand goals and ideas. I end the day happy to sit in my chair and relax. If I push too hard, I will feel my adrenal insufficiency symptoms (deep fatigue, diffuse muscle achiness, lightheadedness and even at times chills). I have tried a variety of things to counter this. I have been on higher steroid doses. I have tried multiple times per day dosing of short acting hydrocortisone. I have tried longer acting prednisone. I have taken another steroid called fludrocortisone along with the hydrocortisone or prednisone. While I am much more stable now, I am not the way I was before. 

People have asked me what has happened to my blog. The truth of the matter is that with my work schedule I don’t currently have the same time at home in the morning that I used to. When I get home at night, I am tired and with that my creativity and drive has faded.

We have considered my work schedule and revisited that a number of times.  I stepped down from my leadership role as Advanced Heart Failure section chief.  In years gone by I was so driven by things that I wanted to see change that I pushed myself front and center into a variety of leadership roles. But now, my body will not let me do the things in the way that my brain wants me to do them.

We have continued to shift things. We moved to Holland, and I shifted into an outreach role. This is something that I believe in, and I figured, “If I don’t have enough energy to do everything, I will pick something to work on that I believe in.” With that, taking call and rounding in Grand Rapids became much harder. This fall I gave up call and rounding in Grand Rapids and shifted to taking call in Holland. 

It is odd to not be rounding on the advanced heart failure services in Grand Rapids. I miss the people and the challenges there but, “It is what it is.” 

Every day in practice I work to help patients with heart failure. Many (most) of them improve with medical treatment. Most however are left with some residual symptoms.  Within their improvement they still are not the same as they were before. They often end up having to grieve who they were before and accept who they are now. 

The hardest are “the walking wounded.” 

These are patients for whom their heart condition has stabilized but they have persistent limiting symptoms. I explain to them that I am not worried about them dying. I am just sorry that we do not yet have an answer to have them feel better than they are. “You are not sick enough for heart transplant. You also likely have good survival. However, I recognize your limiting symptoms, and I am sorry but this is about as good as it will be for you for now.”

“It is what it is …”

I find that there are a couple of responses people make to chronic limiting symptoms: 

1. Option 1: Exhausting efforts to overcome and not accept the limitations. Do not get me wrong, it is good to be certain that we are not missing anything that can help you get better. I love it if you opt to get a second opinion. I would love to be wrong and have you get better. It is good to seek new options or things that can help you. But in the midst of that, option 1 people can often drive themselves crazy by continually trying to recapture what they cannot get back.
2. Option 2: Acceptance of the new reality and then looking at how to enjoy life despite the limitations. 

“It is what it is …”

Let me give you an example that is common:  Insomnia and sleep disorders are unfortunately common as people age. Once people get into their 80s this is almost the norm. Sleep experts tell us that sleep efficiency changes as we age and while it is not normal, we do not have good treatments to make things “normal” again.  How people respond to this falls into two categories:

1. Frustration and suffering: These people lay in bed fuming and frustrated about not being able to sleep. They may cycle through a long list of sleep aides trying to recapture the times when they would lay down and quickly fall asleep and magically wake up 8 hours later. When that does not happen, they get more and more frustrated.
2. Rolling with the punches: When they can’t sleep, they do something soothing. They might read or pray. If they are wide awake, they will get up and sit in a comfortable chair and just relax. “It is what it is …” Once they are sleepy again, they will go back to bed. If they are tired the next day, they will pause and take a brief nap. 

I am not saying that it is wrong to look for and address anything that might be driving your sleeplessness. Of course do that. But often there are no good answers or at least not ones that will completely cure the sleep disturbances. Within that understanding you will be far happier, and far better to take the 2^nd approach above.

I won’t promise that I am good at living this. I still fight against it. But at least I know the principle now.

One patient was clearly hospice appropriate. His heart was very weak. His blood pressure was low, and he could not tolerate much in terms of heart protective medicines. His kidneys were failing. I went in to talk to him about hospice and his goals of care. I was open with him about my concerns.

He stopped me, “Doctor, I want you to listen to me. A few weeks ago my grandson was over. We were sitting in the back yard and looking up at the stars. We were talking and dreaming about all the amazing things in the universe and what could be out there. As long as I can do that, I am happy. I might be feeling short of breath but if I can sit in the back yard and stare at the stars with my grandchildren, I want to do anything I can to remain alive.” ^[1]

“It is what it is …”

He was rebuking me. Perhaps I was wanting to “solve his problem.” It would be easier for me to have him pass away then to be faced with his chronic limiting symptoms that I could not improve. He was telling me that he had long ago learned to live within his symptoms and find enjoyment in life. He and I both knew he was going to die. But before that time came he was content to enjoy what he could. 

This is not a perfect world. While I will do my level best to seek answers and try to make things better, there are just things that cannot be fixed and must be accepted. 

Now my discussions with patients have new dimensions to them.  We of course look to optimize their treatment and symptoms. But I also talk about things like priority setting, energy conservation, rebound fatigue, the role of low level exercise. I also am sure to spend time validating their limitations and symptoms. 

A key part of life for them is learning how to enjoy the life they have now in place of the life they had or wish they could reclaim.

This has been expressed by others in a variety of ways.

“God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.”^[2]

“And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”^[3]

“It is what it is.”^[4]

I have learned that we need to have the courage to live and enjoy life in spite of the circumstances that we are in. It is what is, and what there is – happens to be good.

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^[1] Side note: Hospice sometimes can help people achieve that goal by helping them to stay home and by less aggressive medical care – but that is not the point here.  The point is that he had learned the lesson far better than I have yet to learn it. 

^[2] Attributed to Reinhold Niebuhr in the 1930s.

^[3] Max Ehrman, 1927

^[4] I attribute this to Aunt Joske, 2012. 🙂

I ate barbecued ribs today.

As I did so my memory went back to many years ago. I was at a food court and there was a barbecue place that had ribs. I settled into a seat in the food court with my plate. I struggled with a little plastic fork and knife as I tried to carve up my ribs. It seems that I was being watched by a cleaning woman. Eventually she pushed her cart closer toward me and then walked over to me.

“Boy?!” she said to me. “What are you doing?!”

I was somewhat startled, but I politely answered, “I am eating ribs.”

“No you ain’t. You might think you be eatin ribs, but whatever you are doin, that ain’t eatin ribs.”  She walked over to the utensil area and grabbed a huge stack of napkins. She plopped them on the table in front of me.  “Now boy, you roll up them sleeves.” She waited for me to unbutton and then roll up my sleeves to above my elbows. “That’s right. You pull them sleeves way up. Now get rid of that fork. You get in there with your hands and you get messy!!” 

I can still hear her voice in my head with how she said the word, “messy” dragging it out in a way that I could instantly picture myself with barbecue sauce all over my face, hands, and arms. 

I said, “yes ma’am,” and dug in and started ripping the ribs apart and eating away. She came back a few minutes later to check on me.  “Now you got it! Now you be eaten ribs!”  She walked away with a smile, having done her good deed for the day.

Today, I walked by the napkin dispenser and pulled and pulled to get enough napkins. I sat down and I felt warm inside thinking back on my formal training by the expert instructor in eating ribs. “Get messy!” I laughed quietly to myself. 

I learned valuable lessons that day. Yes, I learned how to eat ribs, but I learned much more important things than that. Before she spoke with me, I hadn’t really noticed or paid any attention to her. After she did, I was forced to see her and in seeing her it was clear that there was a lot to her. She had her own passions and interests. She had an entire life of experiences that I knew nothing about. What was there about her that would push her to correct a naïve young west Michigan boy and teach him how to properly eat his ribs?

Even now I wonder about her back story. Who was she really? What was her life like? What was her family like? Who did she love? What did she like or not like? Who was she?

It seems that day I learned:

1. How to eat ribs.
2. The complexity of each and every person. There is wisdom that can be learned from every person I come in contact with. I often foolishly ignore it, focused so much on myself, my interests, my worries. Could I be so wise as to look and listen instead? Could I go from being the customer thinking about my day, my activities, and my food and for an instant learn from the person cleaning up for me?
3. I learned about passion and pride and enjoyment of life. She couldn’t stand to let me eat my ribs wrong. She was a professional when it came to ribs. She didn’t need a title or formal training. She was a professional because she took pride in it.

It reminded me of another incident. In 1987 I was accepted in the Navy scholarship program for medical school. At that time, I stood in the recruiter’s office in Lansing in front of the American flag and a picture of Ronald Reagan, raised my right hand, and was sworn in as an officer. I didn’t know anything about the military. In 1988 I went to OIS (Officers Indoctrination School) in Newport Rhode Island. OIS was the 6-week training for the doctors, dentists, nurses, lawyers and hospital administrators. OIS was the school to teach us to be the officers that we had already been declared to be. Since we were already officers this was not the usual “boot camp” where you enter as a nobody and slowly gain rank. Instead of drill sergeants, we had more senior officers as our instructors. We still had to do physical fitness training, run floor buffers, clean windowsills with Q-tips, etc. We also had to do close order drill (marching).  We were expected to march to and from each class. If 3 or more of us were walking somewhere we were expected to get in formation and march instead of just walking. 

One day Charlie company was marching back from class. Our formation marched up to the residence hall. We came to a halt and attention before we disassembled to go inside. As we did so, a US Marine gunnery sergeant leaned out of an upper floor window. 

He called down to us, “What are you doing? No disrespect, sirs, but what are you doing?” 

Our leader called back to him, “We are marching back from class.” 

The marine called back to us again, “Well that may be what you think you were doing but I know marching and what you were doing was not marching. I don’t mean any disrespect, but marching is my life and whatever you are doing is hurting me!” 

We laughed a bit but then invited him to come down and talk with us. We admitted that we really didn’t know much about marching. We asked him if he would be willing to help us. The next day he took us out onto a hot paved area (“the grinder”). He marched us back and forth and left and right and starting and stopping. He talked to us about the techniques and disciplines of close order drill. I don’t know that we ever got quite as good as he would have liked but by the end of our little training session, he told us that  we were doing a lot better. We thanked him for his time and the rest of our time in training, Charlie company worked just a little bit harder on our form whenever we marched. At the end of our training there was a competition and partly thanks to our marine gunnery sergeant expert, Charlie company won the award.

I learned that day when the gunnery sergeant called down to us. Certainly, I learned about close order drill, but just like in the food court, I learned more important lessons. Both incidents taught me of the multiple forms and shapes that wisdom takes in life.  There is so much that I can learn from others. Both people had lived completely different experiences than me. Sometimes because of our years of college and medical training, people expect us to be wise about life. The truth is that often my patients or the other people who are working with me have great wisdom in areas that I lack. 

I wish I could go back and find the cleaning woman. If I could, I would love to sit and listen to her. I would hope to just let her tell me stories and teach me about her background, her love for good barbecue and somehow to get a glimpse into her world. Maybe then I could learn just a little bit more about the wisdom of how to enjoy the good things in my life.

I think of the gunnery sergeant. He too was an expert with real wisdom. I loved his passion and professionalism. He wasn’t just doing a job. He wasn’t just a drill sergeant. He insisted on pushing himself to excellence. There is so much that I could learn from him about his discipline, patriotism, and pride in what he did. Maybe if I could have more time and training from him, I too would have a better understanding of the wisdom of excellence.  Maybe I could understand that it doesn’t matter as much what you do but how you do it. 

My patient was 91 years old. His daughter brought him to see me as a new patient. I spoke with him about his symptoms, did a physical exam, reviewed all his labs and testing, and then made some changes in his treatment. I was about to the leave the room when I stopped myself. “By the way, what did you do for a living?” I asked him. 

“I was a chemist,” he replied.

As we spoke, I discovered that he had PhD in chemistry. He was an expert in colors and dyes. He had his PhD from Ohio State and had a long career in industry. His daughter had, like me, graduated from Hope College. I talked with them about my BA in chemistry from Hope. There was a lot more to him than just another 91-year-old with heart failure. I bet I could learn a lot from him. Over the few years that he was my patient, I looked forward to each visit. It saddened me to see his eventual decline, but we enjoyed each visit together as colleagues and friends.

Today I was eating ribs. 

I picked up some more of the ribs. The barbecue sauce was now all over my hands and squeezed into the space under my fingernails. I had barbecue sauce on my cheeks. “Now you get in there and you get messy!” I laughed to myself. In that moment I didn’t worry about the mess. I decided to enjoy it all. For you see I have been trained in how to eat ribs by an expert.