Case Report #8: The Patient You Never Forget (Case Reports from Kijabe Hospital)

Warning: This post is one of a series that describes a patient (case) that I have taken care of in Kijabe hospital, and it may contain graphic descriptions or photos of medical pathology written primarily for clinicians.  For my non-clinical readers, use discretion before reading, and please excuse the medical jargon. 

Occasionally, a patient walks into your clinic, and right away you get a feeling that it is going to be more than the usual patient doctor relationship.   Even before taking a history and physical, there is something deeper that stirs within you, and tells you that you are going to have a profound impact on this patient or this patient is going to have a profound impact on you or both.  You just know that this is a patient you will never forget.  In the case of JW, I felt an immediate connection to her and her family, but the effect we had on one another was not what I expected.

***

JW is a 20 year old woman who came to see me in clinic with her parents.  The parents were very worried and concerned, and seemed desperate to find someone who could help their daughter.  She had been vomiting, losing weight, and battling multiple pneumonias over the last year.  Initially everyone assumed she had TB and likely HIV as that is the most common cause of weight loss and respiratory complaints in a young woman in East Africa.  However, after all her tests came back negative, and she was not responding to TB therapy, someone decided to investigate further. They had recently gone to a hospital where a barium swallow and upper GI endoscopy revealed that she had achalasia with mega-esophagus.  

Achalasia is a condition where the lower esophageal sphincter will not relax, and it causes the patient to store food in the esophagus until they vomit.  It usually has an onset during adolescence or young adulthood, and the esophageal sphincteric hypertension grows worse until the patient can develops severe esophageal dilation (mega-esophagus), malnutrition, and aspiration. The repeated respiratory infections that JW had were from aspiration pneumonia and not from TB. 

Once the diagnosis was made, she was referred to Kijabe hospital (where the family had been told there were surgeons who would take on her case).  She essentially had end-stage achalasia, and while sometimes medical therapy is used to treat the hypertensive sphincter, her condition warranted a more aggressive treatment.  I talked to the family and explained that I could operate to alleviate the obstructed distal esophagus and allow her to eat and hopefully gain weight.  They consented to the surgery and since my operating theater schedule was booked for the next two weeks, I asked the head theater nurse to arrange to have a team on Friday night of that week to operate.   As I talked to the family about what to expect, I noticed what good people they were.  JW was very polite, but also anxious about her deteriorating health and pending surgery.  I tried to encourage her, and told her how fat I was going to make her, and the skinny young woman smiled a smile that lit up the room.  Her parents were also very polite.  Her father in particular impressed me with his dedication and love for his daughter.  He had been traveling all over Kenya trying to get her help, and was willing to make any sacrifice for her.  He told me he had faith in me that I would help them, and I smiled a confident smile and said, I would do my best.

Friday came, and the operation went about as well as could be expected.  I knew I had to get the operation right the first time, because she did not have the capacity to afford any post-operative complications.  I went home that night after having operated from 8am until 9:30 pm (I started JW’s case after 7pm).  I was tired, but I still had this special feeling about JW and her family.  I just felt like our paths had been destined to connect.  The first couple of post-operative days were a bit bumpy.  Despite her rapid sequence induction in the operating room, she clearly had aspirated, and got a bit septic.  However, she responded well to antibiotics, and by that Monday, she looked much better.  Because of the pneumonia, I had waited to advance her diet, but I let her start sipping water on Monday, and then on Tuesday I let her drink liquids ad lib.  Unfortunately, she had some vomiting at that point.  The next few days, she was unable to drink very much, and her abdomen became distended.  Then over the next weekend, she began having fevers and peritonitis. 

I was devastated, I had such high hopes that she was going to do well.  I consulted a couple of thoracic surgeons by email back at home about what to do next.  And I took her back to the operating room where I found a leak from the distal esophagus and about 2 liters of fluid in her peritoneum.  I washed her out, fixed the hole, and buttressed the repair with serosa from what I made into a 360 degree fundoplication.  I left drains and a jejunostomy tube for nutrition.   She subsequently got very sick and had to be transferred to the “ICU”.  She had developed bed sores, anasarca, and sepsis.  Over the next 2 weeks, JW was nursed meticulously by the ICU staff (as I demanded when rounding on her 2-3 times every day.)   She slowly began to make progress, and started to look like she would soon be ready for the floor.  She had been through a lot, and was still far from being able to go home, but her bright disposition had returned.  When I would make my round she would flash that smile, and it would keep me encouraged for the rest of my day.  I thought to myself, this is why I had such a special feeling about her.  Because I was going to have to go through this extensive hospital course to get her better.  By this time her father and I had also become pretty close.  I talked to him everyday to give him an update either in person or by phone when he had to return home to work.  His dedication had been incredible.  He had spent every moment either at the hospital or at work.  We discussed everything that had happened, and believed that God had merely wanted to test our faith by allowing JW to get so sick. 

Then I came in one Sunday (about 2 weeks after the second operation) and JW did not look like herself.  She was a bit confused and had a fever.  I hoped it was just another mucus plug and lung collapse as she had had before, but the x-ray was okay, and over the next 48 hours, her fevers got worse and her abdominal pain worsened.  Then on Tuesday morning, I came in to find her feeding tube had fallen out.  She was as sick as ever, so I took her back to the operating room for the third time.  I found purulent fluid in the abdomen, but could not be certain if it was old tube feeds, or from an ongoing leak.  The repair appeared intact (or at least stuck down), and the fluid was in the lower right abdomen.  I washed her out, left more drains, and replaced the feeding tube.  We took her back to the ICU, and I prayed that she would get better.

Over the next 4 days, she walked a fine line of mild sepsis, but made good urine and maintained her blood pressure despite some low grade fever.  Friday, May 1, 2009 is a Kenyan Holiday (Labor Day), but it was also JW’s 21^st birthday, and she appeared to me as if she was starting to make progress again. I ran into her father as I finished rounds, we both believed that the “test” was finally ending and that JW was going to get well and be able to go home.  We remained optimistic as ever, and I still had that special feeling about JW.  It had been 28 days since I originally operated on her, and it had in deed been a trial of emotional ups and downs.  I had never had a patient come to mean so much to me.  She had become like my sister.  I would round on her sometimes in the evening and not even look at the flow sheets (unheard of for a surgeon).  I was just visiting my family.  As I left the hospital, I could see why I had that special feeling when I first met JW.  I had never invested so much of myself in a patient, and she had brought the best out of me as a doctor. 

***

At 2:05am early Saturday morning, just hours after JW’s birthday had ended, my pager went off.  I was on call, so I lazily dialed the number waiting to hear what trauma patient was awaiting me in the hospital.  But instead, it was the ICU doctor on call.  He was calling to tell me that JW had just died. He said she just became very unstable over 20 minutes, then her pupils became fixed and dilated followed by ventricular fibrillation and then asystole shortly thereafter.  I could not believe it…How? She was looking well.  How could she decompensate so fast.  While I lay stunned in the dark in my apartment, the ICU doc told me he was looking for the phone number to contact the family, but I told him I would call the father.   I did not want him to hear it from anybody but me.  I think this was the hardest number I have ever dialed.  He answered, and knew something was wrong from the hour of the phone call.  I confirmed his worst fear.  At first he said nothing, clearly shocked , and then I could hear the agony in his voice as he choked back sobs and said: “we did all we can do, we must accept God’s will” and then he hung up.   I lay there for most of the rest of the morning seeing JW’s lovely smile in my mind, and not being able to believe she was gone.  She was such a good person.  Her parade of dedicated friends and family confirmed that.  I kept thinking of the pain her father was going through (infinitely worse than what I was coping with).  And then the overwhelming guilt came over me.  JW would still be here if a better surgeon had been in clinic that day.  I felt so small and worthless.  I knew I had done my best, but my best is so inadequate.  I’m a 34 year old surgeon less than 1 year out from residency.  I let this woman down. I let this family down. 

By the time the sun came up, I was able to let go of the guilt.  Even though I am young, I know I am a good surgeon, and I know complications will happen to everyone.  I know I had given everything within me to help JW, and there is no shame in that…even with the adverse outcome. 

As I walked through the hospital gate, I saw JW’s family gathered in the courtyard in the morning hours.  As is typical for Kenyans, the father was totally composed by this time.  He thanked me for my efforts, and would not let me express any apologies or sorrow.  His faith is strong, because in just a few hours after learning that his precious daughter was gone, he could say that it was God’s will.  He was thankful for the time he had with her, and he had no anger toward me.  While the father was strong, JW’s mother was still shaken.  She is a quiet dignified woman who had never said anything to me other than “habari” (how are you), and nzuri (I’m fine), but now she sobbed and cried with emotion she had never showed before.  I guess, I had not really grieved myself, because as I tried to say some words of encouragement to the family, tears begin to fill my eyes and my voice broke down.  JW’s father told me, “I have lost a daughter, but you have lost a sister.”  He was right, and I needed to grieve too. I pulled myself together to make rounds, putting forth my usual smile and laughter for rounds, but after I came back home…I finally let go and cried.  I miss her.  She came to mean so much to me in such a short time.  Making her better mattered more to me than anything.  And now, I sit here broken-hearted, with tears still rolling down my face trying to write this blog entry.  My heart hurts, and I wonder why God would allow the one patient who I have cared for more than any other before to die?  What is the meaning in that?  I thought this bond that developed between me and this family was going to end in joy and celebration.  I would always remember the patient who I saved, and they never forget the doctor who helped them, but instead we are etched into each others memories through loss and pain.

It is almost midnight in Kenya as I write this, and it is certainly the darkest moment I have ever had as a doctor.  And while weeping may endure for a night, I know that joy will come in the morning. And in the midst of the darkness, I am thankful.  Even though, I hurt right now, I know that I am blessed.  I am blessed to have a job that matters to me and other people.  I am blessed to be working in a setting where I am needed.  I am blessed to have come to Africa and learned to care for patients more than I ever did before.  I am blessed to have gotten to know JW and her family.  I am blessed for being able to care for her in her last days in this world.  I am blessed, because in those last days I saw her smile.  And I am blessed not only for having a special patient that I cared for, but for having a sister that I loved.

Rest in Peace Jacinta.

I will never forget you.

chad

"I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love."

~Mother Teresa