Patient Experience: Day 27 Ping Pong Balls

Today is Monday October 21st and my father had an appointment to see the Nephrologist. This was one of the first appointments I was not able to attend, but I know he is in good hands being that my mother is a nurse.
Nephrologist was checking on my father’s right kidney, due to having a stricture of the ureter, and what was the trigger to finding the lesion in the pancreas, and his eventual diagnosis. So good thing it happened, or my father would not even know he has Stage IV pancreatic cancer.
Essentially the physician told my father that he has been treated several years for prostatitis and a few urinary tract infections when in fact he has probably had kidney disease. The physician indicated that it isn’t anyone’s fault, the urologists were treating him based on acute symptoms versus considering the more chronic possibilities of kidney disease.
The physician indicated that since my father already has a stent placed, and has a bit of a urinary tract infection, that he will need to follow up with the urologist in a few weeks. He also indicated to my father that the stent may need to be replaced at a later date as well, just depends on how well it holds up against the pressure.
The physician also noticed the hardness in my fathers abdomen, and diagnosed that it was ascites. My mother asked if he would be able to drain the fluid. He said that he would leave that up to the medical oncologist, due to my father having cancer and him not wanting to cause more harm than good.
Shortly after my parents left.
upon arriving home my mother had called the nurse navigator to see if the port placement had been rescheduled and for what time. In speaking to the navigator my mother discovered that she never received the message, the interventional radiologist that places the ports called and canceled the appointment earlier in the morning due to no confirmation from the medical oncologist’s office. Yet she did indicate that he was on the chemotherapy or infusion schedule for Thursday.
The navigator said she would fix the situation and make sure that the appointments were made and that she would call back with dates and times.
My mother also told her about my fathers ascites and that the nephrologist said that the medical oncologist could decide what to do. She said that it could most likely wait until Thursday when they do the infusion. My mother balked at that and inquired that if my father is having pain and discomfort, and not eating, that perhaps it would be smarter to be seen sooner rather than later. The navigator responded with a modest maybe you are right, I will check with the medical oncologist and let you know when I call you back with all of the information.
When I spoke to my father this evening I asked him how he was doing. He implied that he is doing fine. He said that the pain is in check, he is able to get some sleep. He is hopeful that if they can drain some of the fluid that it will relieve some of the discomfort and that perhaps some of his appetite will come back.
My father then said, “Thank you for the protein powder. Any protein I have ever had tasted like chalk. This actually tastes like a milk shake. It’s good and easy to drink.”
I told him it comes in plenty of other flavors if he likes it. Just let me know and I will get it.
He then said, “You know, I am not sure why I have to see so many specialists. Even in seeing all of the different physicians, it seems they still can’t work together and figure it out. I just want the fluid drained. Yet they keep bouncing me around. Why don’t they make it sweet and easy like you used to do it?”
I responded, “Unfortunately dad not all systems and people think that way. Traditionally it has been about what works best for everyone but the patient. Hopefully times are changing.”
My father said, “I just don’t think people who are sick should be bounced around like ping pong balls.”
I couldn’t agree more.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
#PtExp #PX #cancer #hcldr #hccosts #hcsm

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