Clean Up on Aisle 6: Portable IV Pumps Are Not All That Portable

Today was the first day on my monthly IV treatment, I usually have an IV line inserted into my central port in my chest for 7-10 days to give me hydration and nutrition and medications. This infusion helps keep me from having so many bowel obstructions and long hospital stays. I have been on IV treatment similar to this for 4 years now. Currently I use a CADD prism portable IV pump; that pumps continuously for 24 hours at 100 ml/per hour. Now believe me portable is a misnomer, as you are never really portable with an IV line in your body even with a tiny IV pump that rides inside a rolling bag you are seriously limited in your movement by the tubing that is connected to your body. So it is difficult to go anywhere out side the home, but we had to be at a doctor's appointment. The pump, Power pack and huge bag of Saline (which holds 2500ml is housed inside a backpack that was configured to ride in a converted R2D2 rolling carryon bag. I am very used to using the CADD pump and I started using it because it is superior in safety for me as a closed system. This pump provides a continuous flow over 24 hours with far less chance for air bubbles to occur in the line and less reason to open the line to possibility of infection. With older stationary pumps, you open the line every time you have to change to a new IV bag which with the standard 1000ml bags meant 3 opportunities for infection a day. The high volume tubing on the CADD pump allows for needle-less access in giving meds during the infusion, I no longer have to stop the pump and open the line to inject medications; again this provides less opportunity for infection. These pumps are designed to be portable, they are programed by wifi connection and the data is monitored by your doctor in real time during use from their office while the patient is at home. For most patients who have to have on going infusion treatments, infections and exposure to the bacteria in a hospital setting is extremely dangerous and being able to get treatment at home is not only safer but much less expensive. For me, the hospital is a very dangerous place to be, the infection risk is very serious, so we do as much treatment at home as possible.

Me and My CADD Prism IV pump housed inside my
converted R2D2 rolling carryon bag. We chose this
bag because it is hard sided and holds the system upright
in the best position.The ultra light 4 wheel carrier it
rides on is super strong and functions like a cane when I
need balance and support. If you have to walk around
with an IV pump it, you might as well have it look and
sound like R2D2.

I have always thought of the CADD pumps as virtually bomb proof - super safe and so easy to operate. So easy and safe that I started to forget the potential dangers of having an IV infusion entering just a few centimeters above your heart valve. The port is so simple and clean you forget how close it is to your heart. Today, I learned what a catastrophic failure in the high volume CADD cassette tubing can do to you in a very short time frame. I was nearing the end of my first 24 hours of infusion and had to accompany my husband to doctor's appointment. The medical office was very close to a local military base and we decided to stop at the commissary to buy our groceries.  For those of you who are unfamiliar with shopping at a commissary on a military base, it gives you about a 1/2 price discount on your grocery bill and for us that is a huge deal.

As we enter, I feel a little dizzy and I am trying to manage my rolling IV pump in my right hand and holding my service dog's lead in my left. Having the IV pump and my service dog at the same time, makes riding in a scooter provided by the store impractical. It is easier and safer for me to try and walk when I have both the rolling pump and my service dog. Jeff and I both agreed this would be a short 'surgical strike' into and out of the store taking only a short time. We were both already exhausted but we were also out of milk, and eggs and just about everything at home so a grocery trip was a must. Even though we were both wiped out from the doctor's appointment we decided to take advantage of being so close to the commissary; where we can get our groceries for 1/2 the price. Because I could not ride a scooter when I have both the IV pump and my service dog to handle, we try and do the shopping as quick and with a little walking for me as possible. I learned the hard way how riding a scooter with the IV pump and a service dog can trigger bad things to happen, as I forgot I was tethered to my pump and stood up to reach for something and almost ripped the line out of my body. So now when I am on the IV pump - I choose walk no matter how much it hurts and that is why Jeff reconfigured my IV pump's case to attach to an ultra light 4 wheel carrier that rolls well and acts like a walker to help support and balance me when walking

The IV tubing comes out of the
top of the case and is secured to
handle to keep it safe and out of
way of catching on things.

A few minutes into the store and I start to feel dizzy, which is not uncommon. Ellie is starting to alert me but I don't quite understand what she is alerting for because she is reacting in obedient disobedience. This is a term when your service dog alerts you to a change in your body chemistry by disobeying direct commands that you know they have mastered. They start to disobey the simple things that you both know they have mastered. It usually denotes a big change in body chemistry or that something is bad for them as in they are feeling sick and need to run outside to go potty or throw up. Either way it is an urgent alert. I took a moment to check in with myself and I was within my normal pain and dizziness; nothing that out of the ordinary. I give her the, "we are good" reply and ask for a touch confirmation on my hand; which she does. This set of commands and actions, is our way of checking in with each other. Then I gave the, "back to work" command and we continued. Jeff and I decided to split up and do double duty grabbing items so we could get done faster but we always stay within one aisle of each other in case I get into trouble walking or need assistance. I was half way down the aisle to grab something and Ellie does a major alert; as I command her to, "watch my back" she ignores me and does a crazy ivan. Ellie whips around in front of me and gives me her "pay attention to me bark". Now as her handler, I understand this disobedience as, "we got to get out side fast mom!" I think she needs to get to the grass in a hurry to potty or vomit or something. I know it is a very urgent alert and we drop everything and move to the exit door.

As we are clearing to the exit, Ellie is pulling towards where Jeff is the entire time on the next aisle over which is weird because normally she should be hauling ass to the exit to make it to the grass area for relief. We get to the front door and I am now so dizzy, that I am wobbly on my feet and catch my balance on my pump handle and the edge of the security check desk. The agent at the desk asks if I am ok and then points to my IV line. I had it threaded under my shirt, and under my sweater so it was as visible and not so freakish while out in public. The port part still sticks out above my collar at my neck where it enters my upper chest. At the hem of my shirt the line continues to connect to my rolling IV pump. I look down to see my line has backed up with blood all the way from my port, down through the 14" extension line and into the entire length of pump tubing all the way into the pump case. The entire line is full of blood. I have never seen this happen on a CADD pump. I have seen it happen on a gravity line when the IV bag is below your heart and the pressure of your blood is higher than the force from the gravity level on the IV bag. But this pump relies on a pressurized closed system and it should never back up like this especially when there are two anti-syphon valves on the tubbing to prevent blood from pushing into the line. The agent sees the blood in the line and freaks and calls for security - which on the base means MPs. I know I have to lock off the lines and flush the blood back out immediately and I explain to the agent I have to go attend to the line and head to the restroom. There was no other private area to address the issue close by so the public restroom was my best option.

A closer look to see how the pump the power pack and
the full bag of saline holding 2500ml fits all strapped
into the special back pack. The high volume tubing
connects to the bottom of the pump and is securely
locked into place with a turn key lock. We know it was a
defective cartridge that caused the blood to back up down
into the tubing to the bag. When functioning normally the
system is closed and vacuum seal and pressure from
the pump force the fluids along the line and into my port
and into my artery. 

The restroom is small with two normal stalls and one disabled stall and filled with 4 gossiping employees on break. I 'have to wait for the able bodied person to clear the disabled stall because that is the only stall out of the three that is big enough for me to set up any kind of 'semi sterile field' to pull out my saline syringes, heparin and glove up to handle this while putting my service dog into a sit. The person in the disabled stall is taking too long and I have to act now - so I corner my self on the furthest sink and lay out a portable semi sterile area and start to work clearing and locking the port line. Of course whipping out a pile of medical supplies which look like large syringes freaks out the ladies taking their sweet time gossiping in this tiny bathroom, but fuck it; this is my life and my blood in this IV tube so I continue. The gossiping ladies leave immediately. 

I had already closed the 4 clip locks on the line to stop anymore blood from flowing out into my tubing. As far as I could see the blood had traveled all the way up the line past the pump and into the bag. I opened my line and capped off the pump side tube now full of blood and coiled it inside the back pack of the pump so it would not be out in the open. Then I pulled out three saline syringes, unwrapped, primed out the air and flushed them into my port line; anytime blood gets into your port line you have to flush it back into your body or it can cause a deadly clot to form. Because I use a 14 inch extension on my port line, I have to flush at least 30 ml back up the line to make sure all of the tubing both outside and inside my body were clear of blood. Once I get the line clear and full of saline of blood I have to follow the saline with heparin to safely lock off the line. The saline flushes the blood out, the heparin keeps any residue from clotting or trying to clot so the port line stays open and viable. I did this all in a matter of seconds, maybe a minute max - I was in hyper terminator mode with one mission: to clear, clean and lock down my port line.

The location of my central
veinous port is just below
my right collar bone, so the
bandage covering the needle
almost always visible.

Then I opened my pump backpack, and saw that quite a bit of blood had emptied back into the IV bag. My daily iv bags are huge - they are meant to hold 2500ml and we were nearing the end of my 24 hour infusion period, which meant I had about 400 ml of saline in the bag and what looked like 1200 - 1500ml of blood now inside the bag. I have never seen this before, I have seen my blood crawl up the line a start to go inside an IV bag but never fill one. At that point I lost my cool a little. To help put what I saw into perspective the largest blood test tube holds 10ml. I had bled 100 times that amount into this bag, and it had happened in a matter of maybe 15-20 minutes. A properly functioning CADD pump has enough pressure inside the closed system to prevent blood from my arteries from pushing back into the tube, and when the pump detects resistance to pushing the saline forward it sounds an alarm to let you know there is a kink in the tubing or something interfering with the normal flow. There was no alarm, and the pump was allowing the blood to back al the way up the line. It effectively had become a motorized drain into the emptied space of the IV bag.  

I had checked my pump to get my reading on the amount left in my bag before we entered the grocery store, before entering the store my bag was at 382ml of the normal clear yellow fluid. It would take the IV pump nearly 4 hours to move 382ml of saline into my body. My IV bags are injected each morning with a multivitamin which color it yellow. Now the IV bag was bright red and reading at 1800ml, that is almost full again. I texted Jeff finish grabbing the groceries meet me with the car keys at the front cause I needed to go to the van. It is not uncommon for me to have to go off to the bathroom to find a private place to give myself medication into the IV line or flush the line. It is also not uncommon for me to get too tired to finish a shopping trip and got sit and wait in the van. Jeff had not seen the blood in my line and at this point had no reason to worry. I was still in the mind set of "we are here, just finish the stupid shopping and go home where I can figure out what is going on with this pump". I was not really thinking clearly enough to understand the possible consequences. Like I said I have been using a CADD System and I have never seen or heard of blood back up the line. I have been on other IV pumps or gravity lines and seen blood crawl up the line in regular treatments both at home and in hospitals for the past 10 years. But I have never seen blood push this far up the line, this fast. I exit the restroom expecting to see Jeff with the van keys. Instead I the security agent, the store manager, all the gossiping ladies from the restrooP, a pair of MPs and an EMT crew is rolling up.

Long story short: I sit and let the EMTs examine and confirm I have cleaned, cleared and successfully locked my port line and I have turned off and locked off my pump line and stowed it safely away inside the back pack. I initiate a three way phone call with my Home RN who confirms she will meet me at my house and gather more vitals and help test the pump and if necessary will assist me to get to my local ER. The last thing I wanted was to be heading off to a hospital away from home. My vitals were stable and with the assurance of my home nurse I left with Jeff to go home. My nurse was waiting in my driveway as we drove up. When i sit down and show my nurse the pump and we do a three way call with the pharmacist at the IV supply company about the pump and ran the diagnostic over the phone. All of us thought the problem was a defective high volume tubing cartridge or a problem in the pumps ability to engage with the tubing. This is the only way the pump would allow a system designed to flow only one way to back up and flow freely the opposite way.

For prospective to give you an idea of how large the IV bag is,
it holds 2500ml, that the 2 and a half of the normal big bags
you are used to seeing hanging on IV poles at hospital. When
full the bag is roughly 12 lbs. The IV bag is so large we
refer to it as the baby and say, "it is time to change the baby"
when we start to change to a new full IV bag every 24 hours.

We rebooted the pump and reloaded a new sterile bag, and primed a new cartridge of high volume tubing. We tested the pump and after the reboot, it worked perfectly. We re-examined the IV bag and figured out I most likely only deposited 800ml or so of my blood into it, which is still really scary to look at when you pull out a giant saline bag and it is a bright red. My IV bags are made for a 24 hour continuous flow of 100 ml per hour so the bag is huge; not like the 1000ml bags most people are used to seeing in hospitals. My IV supply company is a great and they reset the programing on my pump so I could get through tonight and will deliver a new one to switch out at 8am tomorrow, just to be doubly safe. Once we were satisfied that the pump was working properly again and that the culprit was a most likely a defective tubing cartridge, we reset the whole system. My Home RN drew blood to test how low my blood volume had dropped and we will test again in the morning to double check. If my hemoglobin drops below 10, I have to go to down the street to my local hospital to 'grab a couple of pints'. Finally we flushed, flashed and flushed my port line again, changed a new sterile extension line and reconnected my port line back to the pump line.

The best parts of the story - 

• Jeff had already started checking out with the groceries before I got ambushed by the team of folks at the front door, so we did get our grocery shopping errand done. Hurray for multitasking!
• Secondly, I have now sufficiently scared the shit out of everyone who works at that commissary - I also bet no one will ask if my R2D2 is a 'oxygen pump' anymore. 
• Third, the sight of blood freaks out every one universally, but when it is coming out of a tube in your chest it scares the shit out of people. The security agent actually asked me if I was wearing a rosary, the IV line was so red he thought I had on a rosary under my shirt. when i lifted the line to show him no it was a port is when he realized it was a blood filled tube in my chest.
• Fourth, people will ask to pet your service dog at the most inappropriate times no matter what, when I was sitting on the gurney talking with the first responders, some random customer interrupted our conversation to ask if they could pet the puppy . . . I said, "No, not right now."
• Lastly, and most important - this is exactly what I mean when I talk about how my service dog has saved my life. I was feeling a little dizzy and exhausted which is what I consider normal after going to a doctor's appointment and doing a short stop at a grocery store. My energy and stamina are almost nil these days, and feeling tired and dizzy are so normal to me that I no longer think of them are a warning sign. If my service dog had not alerted me and kept on alerting me even after I commanded that "we were good", I would not have noticed the blood in my IV line as soon as I did. Her "obedient disobedience" as a high level urgent alert is what made me stop and walk to the front door. Had I not stopped and acted on her urgent alert I might have kept walking in the store. I might have kept feeling dizzy and lost a lot more blood and worse. The pump was malfunctioning so there was no alarm to alert me that there was a problem. I was wearing the tubing under my shirt, under a sweater and it would have been easy for people not to notice that there was blood in my IV line as I was walked by them. It was Ellie, pulling on my leash, mouthing my hand, giving me a "pay attention to me bark" and her disobeying my most simple commands which alerted me that something was really, very wrong. Ellie, my service dog, saved my life again today.

Ellie, my service dog, she is a doberman/lab mix. She was rescued off a highway when someone threw her away as a puppy and then she got paired with my and we trained together for over a year and a quarter in Operation Freedom Paws program. We still attend training even after passing our public access test because the training never really stops for either of us, part of being a successful team is learning new tasks together as my medical condition requires it.

Ellie and I at an infusion center, she goes with me everywhere, in medical
treatments and tests. The only place she cannot accompany me is into a
sterile environment like an OR suite, but she will be with me before and
after in recovery. 

I am ok now. I feel dizzy and weak from the blood loss. My vitals are stable and the test tomorrow will determine if I have to add more blood or I can just rest and recover. I have ten years of experience with IV infusion treatments and this is by no means the first time I have seen blood run up my line. It happens often with a gravity lines when an IV bag is hung too low. And I have been in a lot of situations where trouble happens with a IV port line, so I know that the first thing to do is to lock off the line, get some where safe to clean it, clear it and lock it. Which is exactly what I did. I also know the public bathroom is not the best choice but when you are in the middle of a store it is a better choice than the side walk, the produce section or fainting while trying to get to the van. In the past while on a different kind of IV pump that required me to disconnect my line to walk to go to the restroom, it was 3 am and I got up to use the rest room realized I felt something warm running down my leg. I was so exhausted that I forgot to lock off the line and bled all over the myself, the bathroom looked like a murder scene. I lost a fair amount of blood that night by accident. When you have an IV tube in your body off and on for a few years, you learn not to panic when stuff happens and you just figure out how to fix it.

My service dog Ellie, is my lifeline and my ability to go
into public, without her by my side; I feel like a
piece of my body is missing.

When people stop and ask me why my service dog needs to go everywhere with me, or why is having public access for me and my service dog so important, this is one of those examples of why. Had Ellie not been next to me and alerted me about the blood in my IV lines, I could have had a very serious medical crisis, one that could have done me serious harm. Ellie alerted me, and even when I was too dense to listen to her, she kept alerting me by acting out and disobeying me until I understood what was wrong and then could act to prevent more damage from occurring.  To alert me she has to be next to me and that is why it is so important for my service dog to be with me at all times, everywhere we go.

I always say Ellie feels like an extension of my body, that without her beside me I don't feel whole. She and I are a working service dog team; four paws, two feet, one team.

Ellie and I, together in training class at Operation Freedom Paws.