Patient Experience: 7 Days & No Diagnosis

In my previous post I discussed the fact that an ultrasound was being scheduled for my father. It took the hospital 5 business days to schedule my father for his appointment. Well, that happened last Friday. What was found on ultrasound was a mass just under the spleen.
I spoke to his primary care physician. (after filling out the appropriate release forms) I also spoke to the physician and set my expectations. We are not going to wait for answers, we are going to push the system to get us the information we need on our timeline.
Due to medications and diet, my father was unable to get a contrast enhanced CT the same day, so it was pushed to Monday, the 30th of September.
My father went in on Monday the 30th of September and had labs. His counts came back and his creatinine actually increased instead of decreasing as they had hoped. So now what?
Well, they finally went ahead and performed the CT without contrast.
Findings: a small mass in the pancreas. It is located at the tail. No mets to liver, kidneys, or lymph odes from what they can tell, however, since ther eis no contrast, further work up is needed.
His primary physician sat us down and gave us the news. He shared with us that he probably needs a stent to relieve some of the pressure and issues around one of his kidneys due to an unrelated issue. (diverticulitis) His physician also said as far as the workup we have a few choices, MR or try to get the creatinine down to get a contrast enhanced CT.
I asked what about a PET? Response that it is difficult to get it covered and paid without a diagnosis.
This is something I already knew, but it is also something that perhaps makes sense due to complications and other factors….(another problem with our system)
His physician did say I believe I need to find you a quarterback that is going to manage the care, get the answers you need, and perform the right tests. I need to send you to an oncologist.
Immediately my parents both got a bit puzzled. I explained to them that an oncologist is best equipped to handle an unconfirmed diagnosis, to decipher which is the best test to get images and tissue to send to pathology. I also said that an oncologist orders something and there is a greater sense of urgency, so this is a good thing. It doesn’t mean you have cancer, it just means you need more help than your primary doctor can give to you at this time.
So this morning my father goes in for his stent. He will have follow up with a nephrologist to discuss kidney function and hydration. He will hopefully see the oncologist today or tomorrow.
So what is the healthcare score?
12 days since first appointment; 7 days with no diagnosis; 2 imaging studies with limited valuable information; Cost has come up 2 times; 4 physicians involved; 1 stent to be placed today; Sent away 1 time due to radiologists being gone; 0 mentions of GI surgeon; 0 tissue specimen; 0 diagnosis
My mother has lost 3 days of work. I have lost a total of 1 day due to the flexibility in my position. My father has had 12 days of pain. Both parents have had 4 days of restless sleep.
Is this the best patient experience? More to come.

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