Saturday, October 9, 2010

Dad's Mysterious Ailment 2010

So dad is still in the hospital.  They don't know what's wrong because he's still having kidney failure-like symptoms.  They wanted to release him yesterday because "his numbers look okay," but my mother knew he wasn't okay and argued until they ran more tests. She was correct.  His new test numbers are not great.  They don't know if there's a problem with the kidney, a blockage in the kidney due to blood clots, a problem due to the infection, or the theory that I am leaning towards that he is having side effects from Sutent such as swelling and blood clots.  The oncologist dismissed the blood clots part of my theory, but did agree that taking him off Sutent while they figure it out makes sense.

I was frustrated that the oncologist didn't realize that dad had been on the higher dose of Sutent for only 4 days. (Around the time when all of these symptoms started.) Let me explain why this drives me crazy.

Here is the way this works: Mom and I get here around 8 am or earlier and talk to dad about the night before, then we meet the new nurse for the morning shift and she fills us in on any events during the night shift (important because dad is on a lot of pain medication and isn't always accurate) and any blood test results. If we're lucky we haven't missed any doctors because some of them sometimes come before 8 am, and dad is neither the best advocate for himself nor the best reporter on what the doctor said.

On a day such as today where his problem is complex or confusing we can expect unscheduled visits from a general doctor, a urologist, an oncologist, and a nephrologist (kidney specialist). Each doctor only knows about his particular area, and can only offer tests and theories based on his areas. Let's say the urologist is here, and I have a cross-over question such as "can the problem with urination (urologist) be caused by the kidney cancer (oncologist) drug?" The urologist will promptly throw his hands up and tell me that's a question for the oncologist. No one can tell me anything even a little out of their specialty even when my question seems to require both specialties.

So when the oncologist comes in, here's what I want from the oncologist: I want him to be a master of all of my dad's personal oncology-related information. I don't just want him to know that dad is on Sutent, I want him to know the entire course of my dad's Sutent treatment, including the fact that he started a higher dose 4 days ago, and that's when the symptoms started.

I am an attorney, and my job is arguably less important than that of a doctor, because if I mess up, probably no one will die. But it would be unthinkable that I would not know all the facts of my case, because if I don't know the facts, how am I ever going to apply the correct law? So that's what mom and I do, we talk to all the doctors and 1) remind them of the facts in dad's medical chart, 2) form a unified theory based on what all the different specialists say to us, 3) ask them leading questions regarding what we think might be wrong, and when all else fails 4) mom just flat out argues with them that dad cannot be released.

Anyway, dad is getting a kidney sonogram right now and that will tell us whether he has a blockage and we'll take it from there. Kevin's mother is also on her way to visit us today so she'll come see my dad at the hospital too.

Update: He has a blockage in his kidney and will have a minor surgery to let the blockage pass. It may or may not work. All these procedures are extremely frustrating to my dad and our family.


ashp112 said...

I'm sorry, my friend. The organization and effort you both put forth is truly impressive, though - you're good advocates for your Dad.

Laurel's Mama said...

So frustrating. So So So frustrating. Your father is really lucky to have your support (and your mom's and Kevin's.) In the past if my mother or I did not overly communicate things - my father would not have lasted as long. So many gaps in communication and lack of sympathy and compassion at hospitals. It's crazy and unfortunate.
Our thoughts and prayers are with you -
Sending good positive vibes your way.

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