Tuesday, October 03, 2006
You can't always get what you want....
Yesterday came off without a hitch. My abdominal catheter was placed, blood samples drawn, chest X-ray and EKG completed. The paracentesis resulted in about a gallon of fluid withdrawn - I weighed 10 lbs less afterward. The catheter is a little uncomfortable, but tolerable.
Today began slowly - we arrived at 9am, waited a while to get admitted to the hospital, finally got into a room on the 11th floor. Another paracentesis was done, withdrawing 0.6 liter. A half liter of fluid was infused into my abdomen to give the drug a medium to move around inside the abdominal cavity. Next step was for the drug to be administered over 3 hours. And then....
One hour went by, two hours passed and I was told several times that the study nurse was paged and hopefully would show up soon with the drug. Eventually, she came in and said she had bad news. The drug was nowhere to be found in the hospital even though the manufacturer assured her it would be received that morning (why they waited until the morning of is another issue).
When the study nurse left to try and get the package tracking number to determine the whereabouts of the missing drug, I got on the phone with the manufacturer's study coordinator. She gave me a song and dance routine - first it was the distributors fault, then it was the fault of FedEx. After it was all said and done, it was determined that FedEx had held the drug at their Greensboro facility, about 20 minute drive from Winston-Salem, because they had "plane trouble". At this point, it was 4:00 pm and even though Karen would have been willing to drive over to Greensboro, there was no way they could begin a 9 hour protocol at that late hour.
Karen and I were fussing and fuming, hashing over our options, without having any way to really vent our frustrations. Bottom line was: no drug today, and no drug tomorrow because there can only be 3-4 days in between doses, and the chemo personnel do not work weekends. So the next window of opportunity was Thursday or Friday. I decided to go for Thursday, to minimize the waiting time.
In the meantime, I had an extra 1/2 liter of fluid in my abdomen that was deliberately put there, and would continue to increase over the time until my treatment. So I asked to have the fluid withdrawn before leaving the hospital. This is not a painless procedure because there is no way to screw syringes on and off the catheter without pulling on the stitches holding it in place. But the 1/2 liter was taken off, plus an additional 150ml. Back to Extended Stay we went, knowing we have a free day tomorrow. Maybe we'll visit Old Salem.
As Karen and I were debriefing the situation, we realized that it was just more of the same that I have experienced with the "health care" system, as have my fellow survivors. You have to look out for yourself because the system does not provide for patient advocacy. I should have been on the phone last Friday assuring myself that the drug was already sent or would arrive on Monday, rather than trusting it to busy, distracted people with many other issues of concern than just my well-being.
And so it goes. Lesson learned - again.
Today began slowly - we arrived at 9am, waited a while to get admitted to the hospital, finally got into a room on the 11th floor. Another paracentesis was done, withdrawing 0.6 liter. A half liter of fluid was infused into my abdomen to give the drug a medium to move around inside the abdominal cavity. Next step was for the drug to be administered over 3 hours. And then....
One hour went by, two hours passed and I was told several times that the study nurse was paged and hopefully would show up soon with the drug. Eventually, she came in and said she had bad news. The drug was nowhere to be found in the hospital even though the manufacturer assured her it would be received that morning (why they waited until the morning of is another issue).
When the study nurse left to try and get the package tracking number to determine the whereabouts of the missing drug, I got on the phone with the manufacturer's study coordinator. She gave me a song and dance routine - first it was the distributors fault, then it was the fault of FedEx. After it was all said and done, it was determined that FedEx had held the drug at their Greensboro facility, about 20 minute drive from Winston-Salem, because they had "plane trouble". At this point, it was 4:00 pm and even though Karen would have been willing to drive over to Greensboro, there was no way they could begin a 9 hour protocol at that late hour.
Karen and I were fussing and fuming, hashing over our options, without having any way to really vent our frustrations. Bottom line was: no drug today, and no drug tomorrow because there can only be 3-4 days in between doses, and the chemo personnel do not work weekends. So the next window of opportunity was Thursday or Friday. I decided to go for Thursday, to minimize the waiting time.
In the meantime, I had an extra 1/2 liter of fluid in my abdomen that was deliberately put there, and would continue to increase over the time until my treatment. So I asked to have the fluid withdrawn before leaving the hospital. This is not a painless procedure because there is no way to screw syringes on and off the catheter without pulling on the stitches holding it in place. But the 1/2 liter was taken off, plus an additional 150ml. Back to Extended Stay we went, knowing we have a free day tomorrow. Maybe we'll visit Old Salem.
As Karen and I were debriefing the situation, we realized that it was just more of the same that I have experienced with the "health care" system, as have my fellow survivors. You have to look out for yourself because the system does not provide for patient advocacy. I should have been on the phone last Friday assuring myself that the drug was already sent or would arrive on Monday, rather than trusting it to busy, distracted people with many other issues of concern than just my well-being.
And so it goes. Lesson learned - again.
