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. ]

The Obstruction Rodeo: Two Weeks NPO

The doctor confirmed today that I have a partial obstruction of my small intestine. Luckily I am already on IV infusion treatment, and that will be extended for a few weeks and I will remain under Skilled Nursing Care at home. While I am relieved to not have to be admitted into the hospital, I am not pleased that I will be NPO for at least a couple of weeks until this obstruction resolves. [Nil per os (NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons, such as a gastrointestinal obstruction. It is a Latin phrase whose usual English expansion is nothing by mouth]

Diagram of what adhesions look
like inside the intestine

I have these obstructions regularly, some do not require medical intervention but many do. In total I have had 31 that require medical intervention to resolve. They are the result of multiple abdominal surgeries which involved bowel resections and created scar tissue and adhesions. I will have these obstructions for the rest of my life. Each of these obstructions has the potential to be life ending, if the obstruction ruptures instead of resolving I will become septic and need emergency surgery to avoid death. I have known and lived with this scenario for 15 years.

TPN IV Bags - one is saline with Dextrose with
added multivitamins (yellow) The small white bag is
the Lipids or fats

 Medical technology has greatly advanced in that time. Five years ago if I experienced a major obstruction it meant I would be hospitalized for weeks on end. The non-surgical treatment is to receive all needed hydration and nutrition through an intravenous infusion, control the intense pain, and rest the gastrointestinal tract by being NPO and allow the blockage to release over time. For me surgery is only a last ditch, emergency, save my life once it ruptures option. Now this treatment can be given at home with the new portable IV pumps, and the guidance and care from skilled nursing visits. For me home is much preferable to the hospital, because of the chance for opportune infections and the extreme costs of hospital care. The only drawback to home care is that pain control is far less, but I would rather white knuckle through the pain at home than feel less in a stupor in the hospital.

You can see the size of the I bag in comparison to
the IV pump, the pump fits in your hand.

The one constant that does not ever improve is the psychological effects of being NPO for an extended time. Anyone who has had to stop all food or water before a surgery or a blood test can begin to have an idea of what that is like. Now imagine continuing that discomfort for two weeks or longer. Your mouth dries out so you have to constantly rinse and spit or swab with these yucky sponge sticks. Beyond the physical discomfort is the intense mental anguish. There have been multiple research studies on food deprivation is on par with sleep and air deprivation; meaning it will completely mess up your head in a bad way.

Like I said, this ain't my first obstruction rodeo, but it does hammer home the reality of an inevitable life changing progression of my medical condition. These obstructions will continue and my reliance on infusions for nutrition and hydration will grow until I am on what is called TPN (total parenteral nutrition), where all of my body's nutrition and hydration will be supplied through my veins directly into my blood stream, skipping my GI tract and it means living my life on NPO. The idea of one day never tasting cheese or fresh milk, or chocolate or fresh baked bread suddenly feels all too real. It makes me wonder about quality of life and what is enough.

When so much of our social constructs revolve around food, the eating of it and the sharing of it; the idea of never eating again seems like a big hit to the quality of life category. I know there are people who survive on TPN, most research though does show full dependence on TPN causes serious kidney and liver damage and the life expectancy is roughly 2 years. This is why the team of GI specialists that I work with are doing everything we can to delay the process of having to depend solely on TPN. It is hard for me to wrap my head around living without eating. And don't get me started on the financial burden that medical treatment will become, TPN is far more expensive than almost any external food sourced diet, like 5X more expensive. I have known the TPN thing was an inevitable progression for nearly a decade, it has been looming in the back ground as one of the final boxes on the check list of things that will occur in my final stages of my life. For a decade it has been the boogieman far off in the shadows, too far to really think about because it was too scary and part of the signs that the end is really approaching.

Fortunately for now I am only NPO for the next two weeks, but it certainly gives me food for thought.

The IV bag loaded into the back pack along with the Cadd IV Pump and the high volume tubing set.

The IV Pump back pack rides inside a modified suitcase housing - this
allows the whole thing to roll on four wheels. With a full IV bag, pump and
battery power pack it weighs about 50lbs.

With the suit case housing closed - it rides along like R2D2 - makes it less scary.

Living With Chronic Diseases - Two Remarkable Articles of a Doctor Talking to a Patient and the Patient Talking Back: Great Resources

Sometimes when you are living with a chronic medical condition the world does not make much sense.  You learn the limits of your body in all kinds of strange ways.  Pain that would drop the average person to the floor over time becomes your daily roll out of bed. Spending hours trying to figure out how to dress for a medical appointment so you don’t look too put together and the doctor does not believe you or you don’t look too bad and the doctor thinks you are giving up. The things you start to find normal are far outside what most people see as normal.  Most people go to doctors to fix a problem, they have a medical issue and they and the doctor work to resolve the issue.  But with chronic illnesses sometimes there is no fix.  In chronic illnesses sometimes you go to a doctor to start a relationship because you know one day you will need their expertise even though all their expertise will not fix you. 

Ellie and I in another hospital stay, a recent round of sepsis. Those are words
you don't really think your are gonna say a lot. But I have learned that over
anything is possible. I have had three rounds of Sepsis now. 

This open letter to a doctor - it was in response to an article written by a doctor explaining why chronically ill patients with non-fixable conditions scare doctors. Both the first article and the open letter response are very well written and explain so much of what I have lived and experienced in the past 15 years.  If you are starting down the journey of a chronic illness, living with one or helping a loved one live with one - these two articles are a definite helpful read, they are honest and candid about the interchanges between patients and doctors and how human frailty on both sides of the coin can be a point of the clearest and most beneficial care. Here is the open letter from a patient with chronic illness to doctors: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/

The original article written from the doctor's perspective is linked in in the  open letter and here is the original url as well: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

Both of these pieces hit me so close to home with what I am going through currently in my battle with my own non- fixable medical condition.
I am about to start a new relationship with a GI specialist which in the best case will be the doctor and surgeon who has hospital privileges at the closest hospital capable of dealing with a life threatening emergency surgery that is the possible outcome of every bowel obstruction I experience. I have bowel obstructions at least a couple of times a week, they are part of my existence and they are becoming more serious and more frequent and that is just how this goes. This is the eventual outcome and one that is the realistic preparation for an episode that will occur in the next couple of years of my life. One of these bowel obstructions will rupture my bowel and parts of my intestinal tract will loose blood supply and die off. When a bowel obstruction goes bad it happens fast and the only solution will be an emergency surgery within hours to prevent death. I have known this fact for a few years, and it is just part of my medical condition. It is not unfair, or sad, or overdramatic or anything other than what will eventually occur. I consider this knowledge a blessing. I know the day will come, I don't where or when but I know it will occur. My attempt to have a good working patient doctor relationship with an excellent GI doctor is part of my preparations to survive that day. I will need a damn good GI surgeon who understands my case history and has dealt with very complicated, multiple previous surgical reconstructions; which have left my abdomen full of scar tissue and very little small intestine.

Ellie and I in the hospital, stays are so much
easier to tolerate because I have her with me.
Before I had a service dog, the predominant
experience of hospital stays is how much time
you spend alone. Hospitals are remarkably
lonely places considering someone opens
your door to come in and poke or prod you
two hours.

I am starting this relationship knowing full well that there is no solution, no cure, no magic, new, or experimental treatment.  There is only the clean up of a ruptured dying bowel and the salvage of any part of my GI tract that could keep me from living completely on IV nutritional replacement.  The surgery will end in some part of the function of my GI tract happening in a plastic bag outside my body.  I know this, once he/she has read the 15 years of medical history he/she will also know this. Then there will be the collective silent head nod as that realization is shared. My hope is he/she might have a perspective which may delay this surgery for a little while longer, and that together we will research on how to delay it for as long as we can.

This is a scary appointment, one I am nervous about.  I am extremely lucky to have a great general doctor who has known me and helped me survive the last 15 years. It took me a long time and many failed attempts with other doctors to finally find and build a good working relationship with her. She has worked with me to help me live through three different expiration dates, that I was not supposed to survive. She has seen the progression of symptoms; she has seen me fight tooth and nail to stay alive.  She also is willing to work with specialists, read and research articles. She always admits to me when she does not know what to do, and we talk through how to approach things.  She is the first doctor who I have ever felt that treats me like a person with equal intelligence and resourcefulness. I am extremely lucky to have her as my doctor. It is why I travel 2.5 hours to see her 2x a month. I don't drive anymore so securing transport to her office is a juggling act of multiple schedules with multiple people. And the distance is why I need to open a relationship with a GI specialist who is closer, because when a bowel obstruction goes wrong it goes very wrong very fast and I have only hours before it goes too wrong to fix and I die. To prepare and to continue to fight to stay alive I have to have a working relationship with a GI specialist and surgeon within range of the closest hospital that can handle a serious bowel rupture in a patient with multiple previous surgical reconstructions. That is the honest reason for the visit and that is a hell of a "hi my name is bomb" to bring into the exam room on your introductory visit.

My hope is that this new doctor will appreciate the candor and the realistic expectations of the situation. That out of this intro we build a relationship that will help me keep fighting for as long as possible.

A hospital stay over valentines day - the balloon sang
"hot stuff" every time it was moved, so of course we tied it
to my IV pole so I would be a parade float walking the halls.
My husband recounts that he got me the singing balloon to
the nurses keep track of me . . .
I used to try and make a break for the vending machines.

I don't really like the idea of my health update posts to be public, not because I don't want people to know about my medical condition, it is already fairly public knowledge. When you walk around with an IV line hanging out of your chest going into a rolling IV pump and your service dog people tend to notice that you have a medical condition. But still I always question if I share too much, because it feels almost too vulnerable to share this level of honesty with my friends. People don't react well to words like death and eventual outcome in the same sentences.  Most people want to see positive affirmations of how you are fighting the good fight mixed with some dark humor about where does that doctor think that tube is going???  But so far the good coming from people reading my experiences is outweighing the fear of the bad and if just one person get something helpful, then it has been worth it.  With how hateful so many comment threads have become in recent months on so many public social media sites, I am not willing to subject my decisions about my health care to a stranger who's goal is to use the comment thread to insult or belittle my situation. The world belittles and degrades sick people enough already. I share my experiences with my medical condition in hopes of helping to educate others on how to advocate for their own health care. I don't have any answers; I only have experiences that might spark an idea or discussion that could help some one else.

photo of one of my IV poles with 8 bags
running, it reminded me of a crazed chandelier
I remember texting that joke to a friend with
this picture and they got offended.   

Today I am sharing my experiences as sparked by some other peoples' experiences with chronic illness.  I highly recommend passing the links on to anyone you may know starting their journey with a chronic condition, living with a chronic condition or their caregivers as both of these articles are excellent resources.

A drawing I did of myself in the hospital
I try really hard to keep my sense of humor, this is a common
theme with other people going through similar medical situations,
because if you don't laugh, you cry.  

A funny side note: In the open letter, the sign that Catherine Richardson is pointing to in the picture here to the left, is hilarious to those of us who have had this exact sign on many of our hospital room walls. Limitations/Special Instructions: No Food :(  - I have had more times than I can count. I actually rewrote the sign in my last hospital room to read much the same way with the following answers: my doctors - lost track, my goal - not die, and the I am going home - as soon as I poop or fart.  it made the nurses giggle and a couple took pictures of it before they erased it. Oh and the French Braid Catherine is wearing is the perfect hospital hair trick - because you know you will not get to wash your hair for 5-6 days. For someone with my amount of red curly hair - if not tied down my hair can get to epic size before they come hose it down with that itchy no rinse shampoo stuff.

One of the great things I got from the open letter Catherine wrote is how similar our experiences have been, that I was not alone. One of the hardest things to come to terms with is the isolation that happens during chronic illness, another eventual fact; you spend a lot of time alone.

A photo of Catherine Richardson - the author of the open letter.  
A friend pointed out that we looked similar - I laughed and replied,
"well you know us sick girls, we all look alike"

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.