By Peter Laird, MD
I was wakened by my wife this morning at about 8:30 am. That may not sound like an early day for most, but I have migrated into a late night bedtime usually between 1 or 2 am and I need the full eight hours of beauty sleep to keep from being ugly the next morning. However, my wife at times tells me it isn’t working even with all of my beauty sleep. This morning turned out to be no exception. I found myself wringing the sleep out of my eyes talking to my NxStage service rep’s supervisor’s supervisor. It would have been nice to hear from my own rep, but usually all I get is a computer recording listed as “5100” reminding me it is time to call with my inventory.
I got this month’s reminder on Monday as I was getting ready to return from Las Vegas. Not perhaps for the reason that Las Vegas conjures, my wife’s cousin lives there and my mother in law wanted to see her before returning to the Philippines in a couple of weeks. We returned late Monday night and then I had a meeting for lunch with a dear old friend of mine who recently lost his wife to cancer. It was great seeing him again, but I wish it had been under different circumstances. They were a wonderful God fearing couple that I enjoyed spending time but we had lost contact for a few years as can happen unfortunately. I am going to miss her company, but I know where she is in no more pain or suffering. I didn’t feel well after two days off but I did get the run off to a successful start about 6 pm. I wasn’t ignoring the message from NxStage, I simply couldn’t get to it until today.
In any case, I found my morning routine broken by at first a kind hearted voice on the other end of the line discussing the “fact” that I had not contacted NxStage “3 out of the last 6 months.” This was news to me since I have only missed one call in nearly 24 months of home dialysis. I received a default shipment that month while waiting for a reminder call that never came and it was actually what I would have ordered anyway. In fact, when I first started on NxStage, I loved my customer service rep named Lauren. She called like clockwork if I failed to get back to her in a couple of days from the phone reminder. In the 12 months that she helped guide my deliveries, there was never a single issue, all the orders were perfect every time.
Things changed dramatically for the worse when I was assigned a new customer service representative nearly a year ago. I had orders shipped to CA when I was in Idaho even though I had already been in Idaho for several months. I had an emergency machine swap out sent likewise to CA while I was in Idaho at about the same time and went 3 days without dialysis until they were able to send a second machine to the correct place. I have had half orders obviously sent for someone else since it was only enough for using 20 liters per session instead of my prescription for 40 liters. Perhaps that is what the supply computer told the rep to send. Yet, through all of this, we were able to come to a meeting of the minds and for the most part, I thought matters had improved and I let bygones be bygone. Then I got the phone call this morning from the supervisors supervisor.
I was a military man for a good portion of this life and believe in following protocols of the chain of command. In other words, if you have an issue, you call that person directly before going to a higher level. I understand that most folks don’t adhere to such formalities, but it just makes sense to me after spending 9 years in service. I prefer to call the on call service reps and then often I will double check just to make sure the order is correct. I have found that at times,they don’t document each and every call when I do my call back checks. In addition, everything in medicine is conducted under doctors orders by prescription. A couple of months ago, I placed an order for drain lines which did not show up. When I called to find out what had happened, I was informed that the prescription had expired and they needed a new one.
Fair enough, but that required sending an order of drain lines by express mail outside of the usual shipment which is an extra charge. Perhaps a simple call from my service rep could have taken care of that issue before it became an issue since no one communicated this to me or to my unit in any manner before the fact, they simply refused to send the requested material without the correct prescription. I was in a situation where I had short supplies of drainage lines even though I had informed NxStage in a timely manner. I have yet to run out since I keep close tabs on all of my supplies and still had enough to keep that from happening. With 23 years of formal education behind my name, the least I can do at this time is to know what is in my supply room or not.
Making a long story short, I remained respectful this morning until the manager who woke me from my beauty sleep, and a difficult sleep it was with the headache of not having dialysis for two days, to inform me half way through our conversation: “patients must COMPLY” with all treatment and patients “cannot direct their own care” after simply telling he what I needed for my next shipment. That snapped my head out of its socket and as in all cases where beauty sleep is interrupted, things can get ugly indeed. The supervisor’s supervisor stated I am not allowed to give the amount of supplies that I need, I must COMPLY and give the inventory and the computer will determine what I need. Sorry, but the computer has not been my friend on more than one occasion in this dance with my NxStage medical team. I went ahead and gave the inventory off the top of my head since I had planned on calling NxStage today anyway. After all, the reminder was only on Monday. I then asked a confirmatory question, now that I have given you my inventory, what are you going to send me? That lead to more discussion that patients do not direct their own care and must COMPLY. I am left wondering what will show up with my next delivery since my rep’s supervisor’s supervisor would not even confirm the order with me. It was for me to simply COMPLY and not ask questions.
All is well, but if this is going to be a partnership of care, after all, I am unsupervised when placing 15 ga needles into my arm under aseptic conditions with all of my blood whirling through a machine that I set up, start and stop according to my specific needs for the day, yet I am not allowed input on making sure my orders for supplies are correct. Talk about losing beauty sleep over this conversation. The upshot at the end of the conversation is that they will send me email reminders instead of voice mail which I simply do not use. I will comply in all aspects of my care to include documentation of ALL untoward supply mishaps. I shall be a good little boy and do exactly what I am told to do, it is my hope that all involved in my supply chain shall likewise do the same. Unfortunately, what has started two years ago as a cordial partnership of care with absolutely no hitches whatsoever is now devolved into calls from my service rep’s supervisor’s supervisor without hardly a call from my rep in the first place. What am I missing in this equation?