domingo, setembro 22, 2013

Missing an old patient

When I met this patient, more than 20 years ago, she was in her middle-forties - a thin, wide-eyed, anxious looking short woman (as any young doctor, eager to make clever diagnoses, I was disappointed to find she didn’t suffer from hyperthyroidism). I came to know her very well and cherish her as one of my best patients: curious and inquisitive, but sensible and capable of understanding – a rare bless to a physician – and extremely responsible and aware of the importance of her behavior to her well-being.

She had several serious problems over the years, and faced them all with tenacity and optimism: always inquiring and trying to understand what was happening, braving her chronic anxiety and doing what it took to get better. And, being unusually careful and compliant with treatments, she kept a fully functioning and active life. Short and thin, with systolic blood pressure seldom above 100, she was actually very resilient.

I got to know her quite well over the years; I liked her cunning of a poorly educated but very clever woman, the way she engaged in patient support groups, her witty and insightful critiques of the medical flaws she shrewdly learned to detect (and over more than 20 years as a renal patient, she had multiple opportunities to come across all kinds of doctors and nurses – and patients, of whom she was equally critical when they were unreasonable, tedious or aggressive), the way she used to spend the long hours on dialysis reading to be better informed and instructed. I witnessed her worries about her daughter’s first boyfriends, later, the joys of becoming a grandmother.

For many years, her deepest frustration was not getting a kidney transplant. She was in fairly good general health and a very compliant patient; apparently the ideal candidate. But she also had a very reactive immune system – allergic rhinitis, several drug allergies, allergic dermatitis – and soon became hypersensitized, which prevented her from receiving a transplant – the cross-match with every donor was positive. She witnessed many of her contemporary patients being transplanted, many more dying, and after a number of years she was one of the few remaining patients of the early nineties. Sensible as always, she eventually resigned herself to a life on dialysis, and philosophically concluded that maybe it was for the better, since after all she didn’t do that bad (she was one of the few patients that never forgot how hemodialysis got better over the years). She kept going to the pre-transplant appointments out of habit, though.

Then, shortly after the pre-transplant appointment that we agreed would be the last – she had turned 69 and, although doing still relatively well, the risks of transplantation were becoming greater than the potential benefits – she unexpectedly got a call: there was a compatible donor. And she took the no longer expected opportunity; I heard the news a few days later and was sincerely happy for her – if anyone deserved a successful transplant, it certainly was her.

The first week went rather smoothly – the kidney worked, she was finally off-dialysis. But then, the heavy immune suppression used in hypersensitized patients took its toll, and she caught pneumonia. As it often happens, the combination of a hospital germ and the effects of age, chronic illness and immune suppression soon led to a downward spiral: worsening clinical condition, ICU, mechanical ventilation, acute kidney injury, multiorgan failure and ultimately death.

It made me feel so sad. What if that call had never come? What if we had given up on transplant 1 year earlier? Maybe she could have enjoyed another 5 or 10 years, who knows. Then, maybe things could have turned out well with the transplant (I actually had another patient with a very similar case that has been living with her transplant for more than 5 years now and doing well), and she had never quite given up the dream of leaving dialysis. Yes, I know we can never know for sure. But it is sad anyway, and today, doing the round in the dialysis room at the time when she used to be here, I missed her.

2 comentários:

Cristina Santos disse...

Poor she :(

Ilana Bar-Hai disse...

What an amazing doctor you are. I am sure she read this and is smiling down at you-or smiled since this was a while ago. I often think of my father, a doctor, who badly needed a heart transplant. He was put on an artificial heart as his heart was finished, as a bridge to a transplant. There was a window of opportunity when he was well, his kidneys began functioning and he was getting strong enough. But there was no heart. A younger man next to him, was younger, stronger and he got a heart and did quite well as far as I know. His name was Mr. Walker and despite my jealousy that he got a heart and began recovery, my own heart did feel great joy when I saw Mr. Walker walking!!