In twelve days . . .

[ Jeff and I celebrating just before my birthday 2006. ]

In twelve days I will mark a milestone birthday. It is a normal milestone birthday for most people to turn 45 but for me it is monumental because 15 years ago when I was first diagnosed with my medical condition I was informed by multiple doctors that I would not survive this long. I was told by nearly every medical professional that my condition would progress and end in my death within 5-6 years. Every bit of research I read confirmed their diagnosis, that I would not make it to 45. I have, or at least in 12 days I will.

[ My 35th birthday ]

I have survived against the odds, against the intention of medical insurance to deny my access to treatments, against the incredible cost of those treatments. I survived because I am highly educated and when necessary sought more education around my medical condition; reading every study, every article, and always asking questions.

[ Hospital stay 2006, two months after my birthday.]

I survived because I refused to work with doctors who did not have the time or energy to help me fight for the necessary treatments and medications when my insurance denied it. I survived because I fought with every health insurance rep who denied my treatments.

[ Hospital 2007 ]

I survived because I was meticulous in gathering my paperwork and medical records and able to write convincing arguments about why the medical treatment was necessary. I survived because I fought for my right to be treated at home, with home nursing that cost far less than in patient hospital stays where I would be exposed to life threatening infections.  I survived because brought copies of all those medical journals, studies and articles into my doctor's appointments to discuss the findings. I survived because when doctors did not listen to me I searched for and found new doctors. I survived because I carry my medical records with me when I go into the ER to prevent surgeons from cutting me open again to look around.

[ First big rounds of infusions, 2007 - I sit in that chair daily for 6 hours for the two weeks leading up to my birthday ]

[ Spent my birthday in 2008 - in the hospital ]

I survived because I spent thousands of hours on the phone arguing with health insurance reps refusing to let it go. I survived because I spent thousands of hours writing and editing convincing arguments outlining why this treatment was more effective and less expensive. 

I survived because I recorded all my conversations with all those insurance reps and could and would play back those previous conversations when it helped prove my case. I survived because the ACA was passed and prevented health insurance from denying me access to healthcare because of a previous condition and prevented life time caps to my medical treatment.

2009, following week of infusions for Iron - my Birthday.

I survived because I have diligently logged my symptoms, noting time, severity, and any related causes. I survived because I keep a meticulous journal of everything piece of for I put into my mouth and every drop of liquid I drink with the times they were consumed so I can cross reference what food or beverage would cause an obstruction. I survived because I researched pain medications and worked with doctors to develop a multiple ways to manage pain. I survived because I realized that my mental health greatly influenced my physical health and stress in particular exacerbates everything. I have survived because I demanded every nurse follow infection prevention protocol especially when they were too busy to spend the time doing so. I survived because I researched and demanded new trial medications. I survived because I did not let fear or shame prevent me from using medical devises in public. I survived because I did not allow fear or shame prevent me from pursuing every State and national resource to maintain access to medical care. I survived because I put in the thought and effort every single day, in every way possible.

[ 2010, disneyland near my birthday. ]

In twelve days I will celebrate still being alive. In twelve days I will rejoice in all of the wonderful moments in my life I worked to enjoy. In twelve days I will revel in my accomplishments, and remember what my doctor told me last week. She said that I am alive because I am one of the, "most proactive and educated patients she has ever had", and that, "my survival has been a direct result of my conscious decisions, unshakable attitude and enduring sense of humor." She went on to say, "you don't just keep fighting, I have lots of patients who are fighting. You understood from the beginning that never giving up was just the first step. You ask questions, stay informed, read and research and you push me to do the same. You understood that you had to take control of your own medical treatment. More importantly, you do it with grace and with humor. I wish I could teach all my patients to approach their conditions the way you do." I cannot express how validated that made me feel. So many of the interactions I have had with medical professionals have left me questioning everything about myself. Advocating for your own medical care is always difficult but add to it a rare condition and it exponentially ramps up the difficulty. Searching for and finding a doctor who you trust and who you think will fight for you is priceless. When you find a doctor who is all of that, you do what ever you can to keep them because it will mean your life. I have been her patient for over a decade and she has been there for every step in the progression of my medical condition. This is why I drive two hours to see her now.

Infusion time again, 2011 and guess what it is my Birthday

For those who do not know or do not remember, I have Short Gut. I lost most of my small intestines to an infection following an abdominal surgery in 2001. My lack of small intestine prevents my GI tract from absorbing vitamins and minerals. This causes chronic severe dehydration which is life threatening and requires me to be connected to an IV through a port in my chest. The IV infusion treatment delivers all the necessary fluids, vitamins, proteins, and nutrients to my body through my artery. My inability to absorb vitamins and minerals causes a whole host of other conditions that negatively affect every system in my body. I lose bone marrow and then stop producing red blood cells. My body strips the calcium out of my skeleton which leaves my bones weak. The scar tissue in my gut continually causes bowel obstructions. My chronic dehydration places huge amount of strain on my kidneys and liver, which is further exacerbated by my dependence on IV infusion and Total Parental Nutrition (TPN). 

[ Dec. 2013, week of my birthday: My first infusion center trip with Ellie my service dog ]

[ My R2D2 IV pump, this is my first portable IV pump and gives me the ability to move around during treatment days - Summer 2015 ]

Your body is not designed to receive the bulk of it's fluids and nutrition through your arteries. The flow of thousands of milliliters of fluid into your bloodstream negatively effects your internal organs, especially the kidneys and liver. The stress of filtering all those artificial fluids, vitamins and medications takes a real toil on the liver and kidneys. Most TPN patients experience renal failure. The other big side effect from constant IV infusions is the ever present risk of Sepsis. Every time a needle goes into my port there is a risk of getting an infection in my bloodstream. Every time the IV line is opened, every time a medication is added into the IV line and every time the IV bag is changed there is a chance of introducing bacteria into my blood stream. TPN Patients a have high risk of septic infections.

2014, in hospital with both service dogs (mine and my husband's)
they are ganging up on me to make sure I am well cared for.

Patients who have already had sepsis are at a greater risk of contracting it again. I have had sepsis three times. Most patients who are on TPN do not survive longer than ten years, with the most common cause of death coming from sepsis or liver/kidney failure. I have always understood that my time was borrowed and that I would most likely die from side effects to my medical treatment, as in liver failure or sepsis. Last week I was hospitalized for severe pain in my chest and abdomen which turned out to be coming from inflammation of my liver. Chronic dehydration has causes sludge to develop in the bile duct and is obstructing that same duct, which is causing the bile to back up into my liver and making it very unhappy. When your liver is unhappy it is very unpleasant for the rest of your body. And my liver is very, very unhappy, which means I have intense pain.

Nov 2016 - Antibiotic Auto Infusion Ball - this cool little ball is designed to give the timed dose of antibiotics into my IV line without having to use an IV pump - which allows me to take it with me and still get the medication I need.

I am used to living with severe pain, but liver pain is a huge new level of intensity. I have not developed the coping skills to handle this new pain so my doctors placed me on high levels of pain meds. I am back on IV infusions with fluids, antibiotics, and steroids. This signals a turning point in the progression on my condition. When you start experiencing liver and kidney trouble you have moved to a whole other level. Or as I like to refer to it, I have leveled up! I have officially moved into that portion of the progression where the constant stress placed on my internal organs is starting to cause inflammation and eventually failure. This is a significant step towards the door in terms of my medical condition. And this new step forward in particularly devastating for many reasons:

[ Ellie and I resting together, I am getting infusion at Home with  the help of home nursing care, 2012 two weeks before my birthday ]

1. I was doing so well: The IV Infusion treatments were going so well: I started on this IV infusion maintenance treatment in June of 2015 and since then I have had remarkable success. My numbers have not been this good or this stable in a decade. I had more energy and began to feel somewhat normal again.

2. I found new meds: I have been reccomended to start a new treatment that is revolutionary and holds great promise. The injections make the cells in your intestines grow and therefore assisting in absorption in the intestines, with the idea that the new cells could allow me to spend less time on infusions. The treatment is exciting and has the potential to be life changing - granting me years more.

3. Just when I was ready to celebrate: I am approaching the milestone birthday that every doctor swore up and down I would never see. Why do i always hit the turning points right when I think i am finally winning?!?

[ Disneyland 2014, for my birthday. ]

[ Navigating Disneyland for my birthday - going to the happiest place on earth with a PICC line in is tricky, but it is also a much needed distraction. Disney has become the much needed respite for me because they are so good with disabled accessibility. I am able to go there and feel safe, and I can feel human again because of how they assist guests. Trust me when you are dying - Disneyland is a great distraction and safe way to escape. ]

So looking around and taking stock of where I am:

I am coming to terms with having leveled up toward the end of the game while simultaneously passing the birthday I was never supposed to live beyond. I feel conflicted to say the least. Why now when everything was finally working? It feels like two steps forward and three steps back. I can tell you that these kind of hilarious paradoxes become the norm the further down the rabbit hole of terminal illness you go. Which just so happens to be a great source of humor and continual reminder to take nothing for granted. That new medical treatment I am so jazzed about - it uses one life threatening disease to treat another. In my case the medication causes a 'controlled cancer rate' in my intestines; the idea is that the new cells will absorb enough to allow me to have fewer IV infusions. Fewer infusions means less risk of organ failure and sepsis. So the idea is the benefit of the new level of absorption outweighs risk of the controlled cancer becoming uncontrolled. The major draw back (besides possible bowel cancer) is that the new growing cells also cause a huge amount of pain. So much so that most patients are prescribed morphine in similar dosage to actual bowel cancer patients. The growth of the cells will stop when the medication is stopped for most patients, but in 30% there is real risk of the cells continuing to grow and becoming cancerous. Only in terminal world do you think it is exciting and promising to grow new cells through bowel cancer. When you are in the Hail Mary stage of the game - you begin to consider all the option even the ones you never thought you would.

As I look back over all the years I have been dealing with this, I have a lot of pictures of me in the hospital or in treatment somewhere. I noticed that I have spent so many birthdays in the hospital. I thought, "holy shit I have been in the hospital on nearly every birthday." But then I realized it is not being in the hospital that is weird, that is more my norm. It is having birthdays that is the odd thing. For some reason that made me giggle. Oh and that reminds me, I survived because I giggle a lot. I also survived because I made the choice to be with a partner who giggled a lot too. We survive together, giggling along the way.

In twelve days I will celebrate my 45th birthday. I am not sure how or where I will celebrate it, but I am sure at some point there will be dancing. I will roll my little R2D2 IV infusion pump case along with my service dog, Ellie out to the middle of the dance floor to dance. 
I will dance in joy. 
I will dance in defiance.
I will dance in self accepting love.  

I will enjoy the day, mark it with celebration and cherish all those who are there with me. Cause in twelve days I turn 45 years old. Forty Fuckin Five and that is a good good thing. So I am gonna celebrate my birthday.

Then I will get back to fighting to make it to the next one.

[ It has been a long journey through all of this - and I have been through so much. It struck me as I was going through the photos how many birthday I have been in the hospital or in an infusion center or in treatment at home. But then I remember that I am in treatment all the time. The medical treatment is normal daily life and birthdays are the weird things that happen every now and then. ]

Looking Back to Last Year: Hard Won Lessons.

As this year comes to a close, it is natural to look back over all that has happened in the past twelve months.  As I do look back and remember, I have to acknowledge that this past year has been one of the most difficult years of my life. In the past twelve months, many things happened that changed my perspective on my life.  

In February, I was hospitalized with a near fatal kidney infection which became septic and caused damage to my kidneys, liver, bladder, and heart. I spent two weeks in the hospital moving from ICU to the GI ward, and then finally released into home nursing care. It took another four months to recover from the sepsis causing me to have to have a central venous catheter port implanted under my collarbone in June. The central port was implanted because I am now dependant on receiving most of my nutrition, fluids, vitamins, medications, lipids, fats and proteins from an IV connected to an artery just above my heart. This is a huge change in my daily life; a milestone moment in my medical condition. Becoming dependant on partial or total parenteral nutrition is one of those milestones that signals my condition has gotten far worse.  It is comparable to a cancer patient being told they have moved from stage III to stage IV with most research pointing to a 3% survival rate beyond five to six years.  If fact that is how my doctor’s presented it to me so I could understand the enormity of the situation.

Hospital stay in Febuary, with both service
dogs giving healing

The announcement of my change in condition was a game changing proclamation in my medical treatment.  We moved from discussing how all my treatments were geared to help me live a more normal quality of life to now discussing how all of my treatments are geared towards delaying the inevitable.  This is the kind of fundamental shift in perspective that affect every part your life.  I have been keenly aware that my medical condition was not curable and that I was for the most part inoperable, in terms of doing anything to change my situation. Both of my specialists in hematology and gastroenterology are also oncologists and used to handling patients in the later stages and they have been incredibly instructive in how to maintain quality of life while delaying a bowel rupture.  I am not one to place a lot of importance on timelines for survival in medical treatment. I have been told I would die or should be dead in a certain number of months many times previous and I have successfully exceeded my expiration date now three separate times.  So when my medical team discusses timelines I think of them more as guidelines than a hard date. Anyone who has dealt with serious medical condition knows that every person reacts differently to treatment and it is far more important to focus on the daily tasks and how to make each day more livable than to focus on how many months the research says you have left.  Like previous times, I am staying focused on the daily tasks and working on getting through this week and then planning for the next and so on and so on.

At the Infusion Center at Dominican Hospital, April.
With myservice dog, Ellie

Me with Ellie, my service dog during a training
class at Operation Freedom Paws

There is one great thing that a milestone like this does for you; it kicks your need to live in the moment into overdrive. Suddenly the importance of being present becomes very real.  My medical condition has always been a blessing in that sense, by giving me a real honest understanding of mortality at an age early enough to be take advantage of the knowledge and work towards more loving relationships with my friends and family while I still could. It is one of the reasons, why we have never put off traveling. Please don’t misunderstand me – I am not giving up the fight, rather I am focusing on living as much a possible.  The big balance point is how to live as much as possible and not place your body in harms way? For me it turns out to be a precarious balance between treatment and activity.  I am now at a place where I have to plan out every activity on how it fits within my treatment schedule and how my body is doing physically.  That is a fun juggling act when your body does not always cooperate.  For me a weekend trip can cause a week’s worth of needed rest.  So my daily life becomes a bartering game and series of trade offs.

The medical treatment needed to keep me going presently is complex enough to overwhelm most people, but then add on the ridiculous complexities of transitioning from private insurance on to Medicare and you can begin to understand the nonstop battle for medical care that consumed my life from September through the end of the year.  Medicare has a well-known gap in coverage that does not cover home infusion care. As most private insurance companies have come to accept that home infusion is a far more efficient and far less costly way to treat patients who need IV infusions.  Medicare falls behind in not covering this treatment and instead requiring patients to go inpatient to hospitals or nursing homes.  There is current legislation to fix this up for vote in congress, as the national study revealed that this gap in coverage costs Medicare around $80 million annually. As the vast federal program evolved with its complicated coverage components, home infusion fell partly through the cracks. Medicare does cover the actual drugs given in the home. But it pays nothing for the supplies - tubing, bags, needles, pumps - or the administrative, pharmacy, and nursing services that may be involved. This leads to very high out of pocket costs.  I had to buy a very expensive supplemental plan to help me afford to continue the treatment, which I need to survive.  The cost for my treatment now costs me roughly 75% of my total monthly earnings, and will triple my annual costs.  That kind of financial reckoning forced me to reevaluate what was important and rewrite all of my advanced care directives to reflect the new level of financial burden I expect my medical condition will place on my family’s finances over time. 

Me following surgery to implant the central catheter port, in June. Ellie
amazed my surgeon by performing the task to help me lower my BP, he stood
by and watched us work the task and lower my BP 40 points in 5 minutes.
He had never seen a service dog perform a direct medical task, we impressed
him and the staff that day.

Me with my portable IV pump, it is now
my companion monthly, for 10-14 days.

A closer view of the inside of my IV pump - it
all fits inside the R2D2 bag, which rolls.

Between the changes in my medical condition and the transition from private insurance to Medicare most of my concentration has been all used up.  I found myself staying away from social interactions, and I ended up being homebound for the predominance of the year.  It was necessary to do the level of healing and research that had to be accomplished this year, but it took a toll on my friendships.  I had been warned that I would lose most of my friends when I began really sick. In fact nearly every person I spoke to that had experienced the end of life journey from one side or another, the lost of friends was their first lesson to offer me.  I knew it would happen intellectually but experiencing it emotionally is something no one can prepare you for, no matter what they tell you.  Thankfully most of the fall offs have been the expected absences due to life, which are all understandable. But I have had a few unexpected moments that were deeply hurtful, where long time friends somehow decided my need to ask for space in which to heal was some terribly selfish action to become a bad friend.  I fully admit to being less available to be a sounding board or open place to vent friends’ frustrations over their own life issues, in the past year.  I have had to circle my wagons close to focus on caring of my self. I was deeply surprised when one long time friend concluded that I was a tragic drama queen because I could not take the time to listen to their complaints, in a timely manner.  I guess I should have expected it, and I had been warned that something like that would occur but it still hurt when it happened.  It hurt and it taught me a to change my perspective, like everything else did this year.

Jeff with Selah while teaching the training class at
Operation Freedom Paws 

Jeff with Selah, teaching doggie yoga at OFP

This past year has been hard fought and hard won. As I move in to the next year I go with a far different view of what is needed and expected.  I am still trying to live in the present and cultivate loving relationships with people who can have a deeper awareness of what I am facing daily, and offer a support to that process.  I still focus on the daily tasks and being grateful for the myriad of blessings in my life.  I am remarkably blessed to have the unwavering support of my husband through all of  this, together we make a strong team as we journey onward into the days ahead. I am extremely lucky to have his love and support every day.  We are extremely lucky to have the support of our service dogs, and the ongoing training and emotional support from Operation Freedom Paws, which has become such a vital part of our family. 

Some of our extended family at OFP,
at a local event supporting our veterans.

This past year was so very difficult and many mornings were met with a prayer for it all to be done, what kept us both going through it all was the tremendous support from our extended family of the staff and clients of OFP.  They provide a network of people who understand disability and illness and continually remind us of how our lives can still be placed in service to help others, giving our family a purpose beyond the daily medical treatments. I am forever thankful to all my friends, family and extended family, who have been there without question to do the smallest things counting for the largest blessings in our lives.  We could not have made it through this year without those people who have been there to help when I could do nothing more than try to make it through another day. Those people brought us food, watched our home, cared for my husband, keep us sane, washed my hair, send messages and did the smallest of kindnesses; which made the difference in our family giving up hope.  To those of you who have been there, I can never thank you enough for all you gave us, when you had no idea how much it meant.  You are the reasons we are still fighting and still wanting to give what is left of our lives to help others.  

Tomorrow we wake and start the New Year with hopes that next year will be easier and we can benefit from the hard won lessons of the past year.

Jeff with Selah and Myself, with Ellie in my lap. Picture taken by Vicki Topaz, on the set of her sequel to her film project:
Heal! Veteran's Speak about PTSD

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.