Anal-retentive?

This morning i saw a girl with dyskeratosis congenita-she told me in the world, 1 in a million has this. She was 15 and very dark-skinned-her background i later found out was Phillipino. She had aplastic anemia at 2 and had a bone marrow transplant at 6. Her symptoms of tiredness, dyspnea and orthopnea only became worse in the last 3 weeks although dyspnea was tolerated for the past 2 years. She was admitted on multiple occassions to the ED before for dyspnea in which one of such episodes led to the diagnosis of dyskeratosis congenita.
Emedicine:
Dyskeratosis congenita (DKC), also known as Zinsser-Engman-Cole syndrome, is a rare, progressive bone marrow failure syndrome characterized by the triad of reticulated skin hyperpigmentation, nail dystrophy, and oral leukoplakia. Evidence exists for telomerase dysfunction, ribosome deficiency, and protein synthesis dysfunction in this disorder. Early mortality is often associated with bone marrow failure, infections, fatal pulmonary complications, or malignancy.

She told me her current status involves fibrosis of her lungs..her liver and spleen are also both affected. When i saw her, both her arms were wrapped in bandages and she mentioned she had "increased dry and flaky skin" over the past few weeks....I went to get her file and can't help feeling sick myself as I tried to imagine what it would be like to have gone through such encounter at that age myself. She spoke over her cell phone and when i came back to examine her-i noticed she was at the brink of tears-i couldn't carry out the PE further and thought best to leave her to herself. Her descriptions and words were clear and it seemed that she was calm enough to relate her story to me throughout yet a large part of me didn't know how to react. A medical student is supposed to take this scientifically and understand what exactly it is-there is no need to be affected emotionally since to put it rationally, this is one case among probably many many cases in the children's hospital worth crying over. Yet, I couldn't help but ask myself truly, what is the best way to respond to such patient if he or she is under your care? If i were her doctor, i want to save her life. Belonging to this part of the world, she's eligible for a lung transplant. Yet, is liver transplant or spleen transplant available to her if they fail too? I wonder how much we owe the progress of medicine throughout history to give people like her hope to live on.

It was uneasy for me and i went to the community centre to continue with my data entry and research write-up. It was a logical, straightforward, systematic task which one does without emotions and legitimately so by all standards of humanity i believe. Then i went to attend the CPC conference in SCH. The case was about a premature, breech delivered baby from RPA who was withdrawn ventilatory support after struggling with multiple brain and multi-organ failure problems perinatally. An autopsy was performed and the pathologist presented the slides pointing out the features technically and concluded her speculated cause for baby's conditions post-birth. Throughout, i can't help but ask myself-is this truly necessary? why are we doing this? to me at that time, everything which happened during the CPC seemed "anal retentive" or rather "extraneous". The only benefit which i thought may be important is that such cases or such traditions will contribute to future scientific progress-although in medicine, i wonder how highly i would put scientific progress given that my idea of life is not about extension but quality and personal transcendence in this world. Why not talk about prevention rather than cure? I just can't see myself being part of the "anal retentive" groups of consultants who are essentially invaluable for their competencies but surely, any person with humility will realise that they themselves don't "save lives" as such without first acknowledging the existence of system and colleagues who are part and parcel of their professional work. I don't know if i truly believe that it's worth dedicating one's life to a level of competency which essentially leads one to the narrow scientific discourse which may or may not be relevant in the long run. In addition, i still don't know if it's possible to retain one's humanity whilst performing activities which eventually require one to feel less and be more efficient or specialised. My intuition tells me that i probably wouldn't even if i could. I think to give myself better perspective, i should probably read more surrounding this: Kuhn's scientific revolutions....though my gut feeling tells me that biology as such and my concern is weakly linked to that...
I guess perhaps it's a niche issue and in understanding myself-i supposed one tries at best to cope with what is unnecessary whilst preserving the best and enthusiasm in oneself to embrace and look forward to what is most meaningful for one's life and humanity itself.