On Becoming a Patient

Brenda had an acute appendicitis. She was suddenly very ill and had surgery and ended up in the hospital. I am sure it was no fun. But I envied her. 

I was a 3^rdyear medical student and felt very tired and very stressed. It was before the concept of work hour restrictions. Call was truly overnight and all night. There were no medical student call rooms. The post call day was not easier or an early day. It was harder because you had to present and defend your care of the admissions from the prior night. I was learning a lot. But I was tired.

I envied Brenda. She was lying in a bed and reading or watching television. I dreamed of what it might be like to have people bring me food and drink and to just be able to click through the channels on the television.

Oddly this pattern has continued throughout my medical practice. Rounding on the day of the “big game” I wander in and out of patient rooms. The game will be on the television and I am tempted to look but I have just a few too many patients to see. I push on. I listen to the patient. I listen to their heart and lungs. And then I move on.

Sometimes it is the show, “Gunsmoke.” I loved that show as a child. I even wrote to James Arness for an autographed photo. I used to keep it in a certain drawer in my parent’s desk at home. One year I got a full outfit complete with a plastic gun with plastic bullets and holster. I haven’t watched that show for years but one day I saw it on television in a patient’s room. I envied him.

Once again however I pushed ahead. I asked my standard questions of them (enough to at least bill a level 2 rounding note). I looked at their neck veins, listened to their heart and lungs and felt their ankles. And on I went. 

Sometimes it is “Fixer-Upper.” I watch this show at home. For those of you who are fans, my wife, daughters, and I have been to Magnolia and to Magnolia Table in Waco! And no, we have not met Chip and Joanna. But when it is on while I am working, it oddly feels like it would be such a luxury to stop during the work day and just watch it.

And then I got sick. And for the first time in my life a bunch of things flipped:

• I became a patient rather than the physician.
• I was suddenly taking a lot of pills
• I was off work with a lot of time available to me.

And so today I write as a voice of someone who has “crossed over” to the other side of being a patient. I do not know that I will be particularly eloquent or poignant, but it is a different perspective. I am hoping to share just a few impressions here. Perhaps others who have experienced the other side will want to add some more in the comments later?

Phase 1: Post-op:

• I was very sore. I couldn’t move around without clear intentional action. To get up and out of a chair was something that was planned and then executed. Walks (a lap around my living room) were planned and carefully performed.
• I was able to read and watch a lot of television. I watched, “Gunsmoke”. I realized that it is kind of a depressing and sad show! There are a lot of sad things that happened to make the drama for the show. I watched some movies. I watched recommendations from friends and coworkers.
• My body was not intended to sit or lay down a lot. My neck and back would get sore. I would get headaches as a result. I tested and used every chair and sofa in my house trying to find the best position to sit or lay. My daughter taught me the joy of a hot shower. (I now understand and have compassion for our LVAD patients who are not yet allowed to shower!)
• I walked very slowly. My wife laughs when she tells about my first walk at the hospital. I kept asking her to slow down. I think she felt that if she slowed down any further, we would be walking backwards! 
• Rolling over in bed was a job. I never imagined this with all the patients that I have managed through surgery. I had to think very intentionally about rolling over and whether that was good or bad.
• Electrical jolts. These were a very unwelcome surprise. I have tried to look up the anatomy and realize that nerves are never quite as logical as I think they should be. If I tried to slide toward my left and roll a bit to hug my wife, I would feel a sudden and severe hot knife stab to the left groin. Wow! Ok. So, I guess I had better not do that. The good news is that those have now passed.
• “You just wiggled your finger! That’s wonderful!” “I’ve always been a fast healer.” For those that don’t recognize those lines they are classics from the movie, “The Princess Bride.” As I recovered one day Sarah made this pronouncement.  We laughed a lot at that one and those lines have become a hallmark of my recovery process. 

Phase 2: Radiation and Chemo:

• Fatigue more than drowsiness. I may post this as a full blog post later. But I have learned that sometimes sleep is needed more than desired.
• Queasy and nausea: My thanks to Karen W for suggestions and advice on how to handle this. My profound thanks to the pharmaceutical industry and the combination of Zofran and Compazine! I think about all of the patients for whom I have prescribed mycophenolate who have then struggled to manage the nausea. Sorry! 
• Obsession with bowels: Not going to get into much detail here save it to say that I feel like an old man especially when shopping down the bowel regimen aisle at Meijer. It is embarrassing to be jostling for position next to the 80-year olds who are also shopping there!
• Oddly – too tired to read – but not too tired to write. I don’t understand this but maybe it is some glitch of my own creative mind being deprived of work? I am sure that it will pass but for an avid reader it is a bizarre part of this phase.
• Home blood pressure checks: Seems that it would be easy to just do this regularly right? I bought a home BP cuff but frankly I am pretty bad at doing it. I seem to grab it when I am obsessing about my BP but then mostly ignore it! 
• Learning to swallow a lot of pills: I had become a bit proud of my ability to swallow an occasional naproxen or Tylenol. Now I marvel at home many pills I take! When I lay them all out, I want to take a picture of them (I have done this!) It just amazes me all the things that I am putting into my body! But I also found that it became harder to swallow so many. Big tablets are the worst. I used applesauce and it started teaching me how to take bigger swallows. I have since been better able to do the same large swallows with water again.
• Dry mouth: This was actually with both phases from the pain and nausea meds. It is a really odd thing to feel the need to swallow and to be unable to do so. It is a mild panicky sensation. If I wet my mouth, then I can swallow and then I feel better.
• Thankfulness: I really value and appreciate my treatment team. Their kindness and interactions with me are important to me. I enjoy getting to know them and who they are. Their kindness and understanding make things a lot better. The arm that they offer me to help me off of the radiation table is oddly such a real comfort and support. I find myself wanting to give back to them. 

So what have I learned?

1. I don’t envy Brenda anymore. The grass does indeed always seem greener, but it is not. I would prefer to be up and moving around rather than the one in the bed. Appreciate what you have. Be content with what you have and enjoy it in the moment rather than wishing for what others have.
2. When you get the time to do all the things that you were wanting to do, you might not have the energy or desire to do them. Life can play cruel tricks on you sometimes! Enjoy the good in your day today rather than wishing it away on tomorrow.
3. I better understand the struggles of my patients for whom I have prescribed a TON of medicines. I am even thinking about setting alarms for myself to remind me to take my pills. I am anxious that a pill box may be in my future! It is not easy coordinating and remembering to take every dose on time. I think I am capable of it but then yesterday morning I went out to breakfast with a friend and realized that I had forgotten to take my pills beforehand.  Oops.  (I took them an hour or so late instead!) Listen and problem solve with your patients. It is hard for even intelligent and motivated patients to be perfectly adherent. I now completely understand why we have a pharmacist in the advanced heart failure clinic!
4. I really appreciate the role of direct caregivers. The nurses and aides are so valuable. Health systems – pay attention to this – if you want good patient satisfaction scores – be sure to take care of them and make sure that you have good staff in these roles! Appreciate and value those who directly touch the patients. They are SO important.
5. A desire to give back: As a patient I want to contribute and show my thanks. Please let me do this. It is hard enough to be in the receiving role. It makes me feel good to ask how you are and to support you. Let your patients give as well as receive.
6. We were designed to be creative and to work. I think that is part of what is driving my energy for this blog so much. Mimi E I hope you don’t mind me calling out to you from this blog, but you are a great instructor for all of us in this. You were a great teacher as a physician and now you continue to be as a patient. To be human we all feel a need to create something. Mimi does an amazing job with her painting and photography. We were all meant to work. Feel the joy of it. When you are stretched feel it as a good thing, as a growing thing, and as an essential part of being human.

And so, as a conclusion to this posting I will quickly repeat my primary lessons:

1. Be content with what you have rather than envying others. It really is not that great being in the hospital bed or sitting at home watching, “Gunsmoke.”
2. Seek out and really enjoy the good that you have in today. Do not squander it wishing for tomorrow.
3. Partner and problem solve with your patients. This is the key to compliance / adherence.
4. Value the staff that directly interact with the patients.
5. Let your patients give back to you. 
6. Enjoy the work that you have today. I know that there may be parts of it that are not fun but as humans we are meant to work. Like a good workout feel the stretch and pull and challenge and enjoy it.