In the course of one month, I use 30 boxes of dialysis solutions. Each box contains 2 bags of 5 litres. I use 2 bags every night. They are delivered on a monthly basis and occupy a large section of the living room. The staff nurses at the hospital’s Continuous Ambulatory Peritoneal Dialysis (CAPD) Unit took pains to remind me during training to order the next batch of solutions when I have 10 days of supply left.
This buffer is to ensure I have sufficient supply at all times. The supplier also needs time to process the order and schedule the delivery. In every sense, my time table from performing dialysis nighty to ordering my supplies is regimented to make sure that everything goes on as smoothly as possible.
For this month’s supply, I ordered with an 11-day lead time, to be delivered on a Saturday. The delivery company should call a couple of days in advance to confirm the date again. On delivery day, I would receive another call to inform me they are on the way.
I did not receive any call two days prior. I thought they would ring on delivery day. There was none. I began to get restless by mid-morning as I was down to one box of solution which was to be used that very evening. I would have none for the next day.
My kidneys are functioning at 6 per cent only. Peritoneal dialysis is literally keeping me alive, taking over the functions my kidneys can no longer perform. Under no circumstances should I skip dialysis because the accumulation of waste and water in my body will leave me very ill.
I called the supplier. The automated phone system stated that they were closed and to call back on Monday. I called the number of the delivery man. He was the one who has been sending all my supplies. He said my name is not in any of his manifest.
I called the Baxter on-call nurse who could not do much as she only provide support on issues related to dialysis. Baxter is the manufacturer of the supplies and the cycler I use for dialysis. The supply chain is managed by a separate distributor. Nevertheless, she said she would forward my issue to the person responsible for my case.
I had planned to run errands for the rest of the day after the supplies were delivered. That had to be put on hold now. I basically spent the entire morning contacting one person after another. I called the nurse who had trained my wife on performing Automated Peritoneal Dialysis (APD). She said she would see what she could do.
Just to be sure, I got in touch with the manager at Baxter requesting for assistance to look into the matter as well. Her staff who was responsible for my case contacted me to let me know she was in communication with the logistics manager of the distributor regarding my supplies. She kept me apprised of the development throughout the entire morning.
The logistics manager finally called to inform me the supplies would be delivered at 3pm that day. I asked him why there was no phone call to confirm the delivery and whether there indeed was a consignment for me. He said he will investigate. I have neither heard from him nor gotten an apology for the slip-up till today.
For other types of delivery, I do not mind a delay but these solutions are essential for dialysis. It is not a life and death situation but could cascade into major medical complications. The distributor should not take lapses like this lightly. I hope this is a once off mistake and do not become a norm.
I am new to peritoneal dialysis, having just started in August. In that duration, I have had three traumatic incidents. One was when I could not fill or drain the solution which was caused by acute constipation. The second was bleeding at the exit site most probably caused by pulling on the catheter. And now this.
With each incident, I learnt a little more. Knowing what to do when caught in these situations can make a world of a difference. I am glad to have ateam of dedicated professionals behind me all the way. They are a phone call or a message away whenever a crisis arises. Their support is important in making sure my dialysis is not interrupted in any way.
My utmost appreciation to Chan Tzi Ling, Sazila Isa, Nurul Huda Hussain and the on-call nurse whose name I did not get at Baxter Malaysia for working hard on a weekend morning to make sure the supplies got to me. Thank you for your assistance in sorting out this issue. I was relieved by your assuring words and knowing you will get the much needed supplies from somewhere somehow. You are all my guardian angels.