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

"Get over it" is never a good response . . . Or how a damaged GI tract makes even the most mundane of head colds an adventure.

I write here to help people understand how things are different for me and hopefully give some deeper perspective to what life is like in it’s costs for me and in turn possible for others.  This post comes from a off the cuff remark made to me to “buck up, cause it is just the flu, we all get it,” statement.  Which is true we all get the flu, but it affects all of us differently and if you understood what being sick with the flu does to me, you might think twice about telling me or anyone else to just “get over” their flu symptoms.

So everyone understands that having a serious bout of influenza will knock you out and if it progresses to pneumonia well then it will certainly put you in bed for a while. For me it is slightly more complicated. Of course I have all the normal accompanying symptoms of sinus pressure, mucus draining, difficulty breathing, low energy, aches, chills and coughing. But in my body the symptoms take on a new level of special fun.  If I have a bacterial infection and need antibiotics, oral medication have difficulty working cause my intestinal damage does not allow them to absorb. I rely on injections and IV infusions of antibiotics which can be done in the doctor’s office and at home with help form a nurse or worst case after hours in the ER.  If I don’t get to the injection soon enough, I have to go to intravenous infusion. If I have to have an IV then we have to make sure that I am not already too dehydrated to accept a regular IV site in my lower arm and most times have to move to a surgically implanted PICC line in the artery of my arm. the problem with being sick is that most times if you don't treat it, it just gets worse.  So the time it takes for me to get treatment usually means the initial illness has progressed to something worse like pneumonia.  I experience all of the normal pneumonia symptoms but some of my experience are uniquely my own:

Above is a Peripherally Inserted Central Catheter (PICC line) is a form of intravenous access that can be used for prolonged period of time to deliver fluids and medication.

Above: One of my PICC Lines.  I have to have Picc lines because I need to receive fluids and meds for weeks at a time, and a normal IV site will fail in about 2-3 days in my arm.  

Hydration or lack there of:

I live in a constant state of dehydration; my gastrointestinal system cannot pull enough water out of what I consume to keep my body hydrated adequately. This is why you see me with my metal sippy cup always in my hand. I have been told by my doctors to never stop sipping, and I always keep liquid in my cup I like cause I need to tug on it all day. I keep that sippy cup with me at all times, and I pack a cooler of ice and more liquids to refill it everywhere I go and I take a fair amount of grief for the practice. people constantly ask why the hell I pack a cooler to go to the store, or doctor or anywhere. I can't guzzle liquid, I don't have the space to accommodate large amounts of liquid all at once - so I have to sip and sip constantly.  Most people can down a bottle of water and then be drink free for a few hours, I cannot.  

I rarely consume alcohol, cause the meds I take are already hard enough on my liver. As a good southern girl, I always keep my glass full of ice, because I like things cold and ice melts and adds water to the drink.  I do drink soda, and my doctors and I go back and forth on this. Universally soda is not a great choice, but there are mitigating factors for me.   I do not absorb the full amount of caffeine, or sugar. We know this scientifically because my A1C (the blood test that gives an average of your glucose levels over a 90 day period) is always between 4 and 4.5.  My doctors and I have reached a compromise, as long as the A1C stays in that range I continue to drink soda, the day the test shows a higher A1C, I will quit.  The other part of this is my daily intake of “food: is usually 80% broth.  My body has difficulty with real food a lot so my usually intake consists primarily of broth.  So even without the Soda I get a lot of water in the broth form.  Yes, I know there are better choices to drink and I do take advantage of teas, juices, water and more, but I look at it this way. My daily dietary intake is usually so limited to really crappy bland liquids like chicken broth that my one constant enjoyable vice is soda. Trust me – go on a broth diet for a week, skip all food and only intake broth and other liquids and you will begin to understand why you may just have to pry that Dr. Pepper out of my cold dead hand.

That being said, I am always on the brink of dehydration even with the sippy cup graphed to my hand, I still can’t get enough liquid into my body.  When I get sick with a cold or flu I feel bad and try and rest, so my consumption of the ever-present sippy cup is lowered. Here is where the dehydration plays a fun trick on me, as I get more dehydrated my nausea levels increase and the less I want to put anything into my system.  When I have flu I have a solution for this, I freeze Gatorade mixed with protein drops in ice cube trays and then crush the “gatorice” – ice chips melt in my mouth and provide liquid without tripping the nausea switch.  But this does not make up for all the lost sipping opportunities, so if this goes on long enough I end up with an IV to give me hydration.  When my flu progresses to the pneumonia stage, 9 times out of 10 I will be placed on a PICC line and given fluids along with the needs meds for weeks.

Above - is me getting hydration and meds for a bowel obstruction -count the number of bags in this IV chandelier.

 I usually require at least two pumps with multiple bags of fluids and meds. It makes a strange sight, to me it always seems like a Dr. Seuss chandelier.

 An easy outpatient session: I am getting 650ml of iron here.  I have to do this every 3 - 4 months and I do multiple sessions of that amount of iron.  

 Notice how the Iron looks like motor oil as is flow into the body - kinda creepy huh.

 My usual excited face when I have to go for outpatient infusion.

Way better than my excited face when admitted to the hospital.

Coughing . . .  a cruel torture all on it's own:

We all hate coughing, that annoying reflex action meant to clear the gunky mucus from our airways.  I hate coughing in the same way I hate vomiting, because that reflex action of my abdominal muscles to force air up my trachea also forces sections of my intestines to push through the multiple fissures in my abdominal wall.  The act of coughing squishes my intestines through my the holes in the muscles of my abdomen and once they are stuck in those hole the reflex action of the next cough pulls, and rips on those same intestines.  As my poor intestines get stuffed and stuck in these holes they twist, and kink and start to swell.  All of this causes ungodly pain.  Anyone who has ever had a hernia will help explain that pain, cause it is unlike any other.  To me it feels like some one jabbing a molten spear into your side over and over.  On particularly rough bouts I have been known to black out from a cough, squish, cough, rip moment.  Most of the time I lose my breath and try to find a way to lie back enough to use my hands to help push the intestine back through and free it from the fissure.  I have had 5 hernia surgeries to try and fix this phenomenon, but once the muscles of your abdomen rip they cannot grow back together – so I am stuck with what I got. Currently, I got one really big hole, 12 x 14 that is covered by a slightly larger mesh – this is screwed into place and theoretically holds my muscles together and keeps the intestines on the inside. There are smaller fissures around the edges and a few other rips lower and on the side.  Meaning there are lots of places for bits of intestine to get squished and trapped into my abdominal wall. This is the bulk of abdominal pain that I feel daily. 

An example of how the bowel can be pinched by pushing through the abdominal wall - this is what happens when I cough.

The mesh and below the screws that hold the mesh by screwing into your muscles - when I rub my tummy I can feel the screws through the skin.

The main problem with having parts of your intestines squish into holes in your muscles is that when they are in the squished up position they stop being able to allow what is traveling inside them to pass along.  This is how the obstruction occur. 

Above is a radiograph of a bowel obstruction - on left side - below is how a normal bowel should look.  The obstruction shows how the dye is stopped on now side.  In the normal view - the dye runs the entire course of intestines through out the abdominal cavity. When I have fluoroscope tests dine there is always the moment when the radiologist calls in other radiologist to check out what is on the screen because my "normal" only has bowel on the right side, the rest was damaged and removed.  So I am always a spectacle to see during testing. 

When a bowel obstruction stops the flow of material down the GI tract and my whole body goes in to panic mode. First every bit of water in my body’s cells are pumped into my GI tract to try and flush the blockage through. Second the muscles of my abdominal wall start violent contractions to help the fluid now gathering in my intestines flush out the problem.  These contractions of muscles cause anything and everything on either side of the blockage to leave through the closest door in what can be described as a panicked evacuation.  Many of you have experienced this in the throws of a seriously bad stomach flu.  This contraction and evacuation will continue until the blockage is removed or until you are given a medication to stop the action.  In my case the violent contractions are continuing to pull rip and tear on the bits of intestines already stuck in the fissure of my muscles and can in some case push more bits of intestine into more fissures causing more blockages.  And the pain of this action is, well, bit hard to explain other than, holy mutha of all that has ever caused pain.  This is the point where I get the trip to the hospital and start the process of morphine psychosis.  A hospital stay for one of these blockages is usually 9-13 days long.  I luckily have not had to go into emergency surgery, as of yet.  One of the eventual side effects of all of this fun is that a bit of intestine will stay kinked long enough to cut off the blood supply and that section will die, and begin a septic infection.  In those cases surgery happens to open your muscles to remove the dead or dying section and try to avoid the infection that will kill you. Luckily the fissures in my muscles are large enough to allow the intestines to squish in and back out on their own usually over time.  This is quite fortunate in a sisyphean sort of way.  It keeps me alive so I can experience it over and over.

Oral medication is not really all that effective:

My Gi tract has difficulty in absorbing medications.  The same damage that keeps my body from pulling vitamins and minerals out of the food I consume also keep me from absorbing oral medication. Often pills can travel through my GI tract whole and intact.  This becomes a fun game to show the nurses and doctors who don’t believe what they are reading on my charts.  I take the pill from the nurse and in roughly 4 hours, [the normal travel time in my system which is greatly truncated] I point to the little hat in the bathroom and show them the pill.  When you have been through as much GI distress as I have for the past 13 years – seeing a pill in your poop is nothing.  So if the pill does not dissolve it does not absorb. Some meds partially dissolve and therefore partially absorb – but we do not know how much so dosage for me can be very difficult.  This is why I can take 3-5 times the recommended amount and not have ill effect.  It is also why I continual get to explain to pharmacies why the dosage, which I am prescribed, has not killed me.  This is primarily why many of my important medications are given by trans-dermal patch, injection, or IV.  When most people get the flu they can see their doctor and be prescribed the z-pack and run off to CVS pick up the pills and be done.  iN my case, my doctor calls in prescription to the infusion clinic, and I have to schedule time to go into the outpatient clinic for the infusion.  Or I have to go to the ER if it is after hours on weekends or the infusion clinic is too busy.  CVS can’t fill Infusion orders, you have to go to special pharmacies, have special permission from your insurance, have a nurse come to your house to administer and the whole process takes time and lots of money.  It took years to build a case history to help my insurance company understand why I need infusions, a case history built on multiple trials of the oral drug that failed and following hospital stays.  Thank goodness for the Affordable Health Care act which allowed me to buy my own health insurance, because without it I would be back in the “take the oral meds until they fail enough and I get sick enough to be hospitalized” stage.  The home nursing is expensive but in comparison to a hospital stay it is about 1/6 the price.  As the hospital stays cost tens of thousands of dollars, and if I am in for 13 days it is hundreds of thousands. 

So when you get a cold or flu after hours or on a weekend and get angry about that $350 dollar ER bill, count yourself lucky. 

I don’t have the luxury of going to the urgent care when I start to run a fever and pick up a z-pack and hunker down under my covers for a few days of marathon netflicks and popsicles . For me a bout of the flu is a serious threat and can be a real game changer in my plans.  In the past 18 months I have had the flu progress to pneumonia 6 times.  I have been placed on a PICC line for hydration and medication 3 times, and been given regular IV’s the other times.  The gastrointestinal tract regulates the body’s immune system, my GI tract is heavily damaged and therefore my immune system is heavily compromised.  It has been suggested to me that I refrain from exposing my self to germs, live in a sterile bubble.  But to me that is not living.  Interactions with my friends and family are living to me.  I don’t want to live without living, so the cost is getting sick sometimes.  I know this, and I accept this.  It is what it is.

But before you start to tell me or hopefully anyone else to "get over it", when you hear I am down with the flu or pneumonia again, take a moment to understand what you are asking me to “get over”. The one or two sentences in a status report on FB do not begin to scratch the surface of what I am actually going through.