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.

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

Warning Vent Ahead:

Today I had to block someone from my Facebook page, it is of no consequence who they were because they did not have my best interest or the interest of those I love in their minds and their intent in their comments was to be hurtful and I don’t have room or energy for people like that in my life.

Ellie and I after I was released from ICU
- with Septic infection in my bloodstream.

There is no doubt I live with a very serious medical condition.  I have more medical records and test results from the past 15 years that most people accumulate over their entire lives.  My condition is real, proven and something I strive to live with in a positive way.  There is no way to fake blood tests, Sepsis is pretty straightforward life threatening infection and hospitals don’t let you hang out in them for fun. When I am in ICU it is for a reason. That IV line that connects to my body every month is real and I don’t pull that IV pump around for giggles and grins, it saves my life. I would not wish the level of pain and anguish I have lived through with my medical treatments and condition on any other person.  My condition is terminal and I will go through an eventual decline that will continue to limit my abilities to do things and that is my reality and it sucks but I know that it will come and that is why every day for me is precious.  Every day I awake to see my handsome talented husband, and our beautiful service dogs is a glorious day. 

Ellie and I getting another week of infusion treatment

 

Ellie and I post op - following the surgery to get my central port.

Some years ago I decided to be open and honest about my medical condition, I blog and write about it in great detail sharing experiences of hospital stays and pictures of intense treatments. I share this to help people understand what we as a family live with and to help others know that even when things seem bleak there is always something positive to hang on to in the darkest hour.  Pain in my life is a constant and it does effect my ability to do some things and it does wear on my emotions but it does not rule me.  Pain ebbs and flows, up and down, back and forth and I float along in it like the waves of the ocean. Some days the waves crash and pound my body against the rocks and other mornings I float along smooth as glass.  But the pain level is not what is important ever. What is important is kissing my husband good morning, holding his hand when mine is trembling, feeling his hand on my back when I cannot sit up, the softness of Ellie’s fur in my fingers and the love in her big brown eyes when she lays her head in my lap.  Those simple acts of love matter more that anything else and that is what is held on to during the pain. Pain is an electric impulse through a nerve bundle and it has no malice for me it just is part of what makes me a stronger person.

My Portable IV pump - it fits inside
my R2D2 rolling bag

My IV line attached to my central port and
connected to my portable pump inside R2D2.

So when some one asks me, “how can my husband and I travel to places and scuba dive if I am disabled?” I get livid.  Disabled people do all manner of things.  Scuba just happens to be what is sacred to us and it is so because when we are under the water we feel strong and whole in our bodies the way we used to before our illness and injuries.  I dive because it makes me feel normal for 1 hour at a time.  It is same reason Wounded Warriors and other Non-Profit organizations help disabled people learn to dive so they can feel that sense of freedom again with their bodies.  I am blessed to know disabled people who win buckles in national Rodeos; I am honored to know disabled people who race cars, run the rapids in kayaks and sky dive.  The difference when a disabled person does some adrenaline type sport it takes more planning and modifications of the equipment.  But life for a disabled person takes more planning and modification. That planning and modification does not make what the person is doing any less spectacular or the person less competent, frankly it usually highlights how remarkable the spirit and strength of heart that person possesses.

Isla Mujeres - Cliff of the Dawn - and one of the most
beautiful and healing places for me.

So when someone implies I should not be celebrating the 5^th anniversary with my loving husband in a tropical island where we can go scuba diving because I am disabled – I tell them to go pound sand and block them from my page.  We save and scrape our pennies all year to make that trip and we are not going to expensive places; we go there because it is mystical and magical and filled with other people we love. Our family dinner downtown on the island, I had my favorite thing Lima soup for 60 pesos or 3.29 USD.  Our hotel room cost less on the island with every meal and drink included than a Best Western room costs here with nothing included not even a bottle of water.  Again, we go to that island because it is not about the money – it is about the wonderful people there whom we have worked with for years and who care for us like family.

We dive because it makes us feel whole - and we are lucky to
have made friends with great dive masters who understand
how to accommodate our conditions so we can dive safely.

My husband knows more than anyone else how many times a doctor has expressed how little time I have left, or how awful the later parts of my decline will be.  My husband more than anyone else understands that I have surpassed my medical expiration date 5 times and I have coded and come back 3 times.  My husband has been the one pounding on my chest breaking my ribs to get my body to breathe again, and he has held my hand when there was non one there but the sound of beeps from the machines.  I will go back to that tiny little island every year to celebrate our love until there is no way to do it.  I will grab my IV pole and roll it onto the plane and through the airport and on that damn ferry until I can no longer.  Because there will come a day went I can no longer make that trip and will only have the pictures and the memories.  I will not apologize for living what is left of my life to the fullest and for spending each day with a smile on my face and making great new memories in my heart. 

We are as goofy underwater as we are on land -
Life is short, so we fill it with laughter.

 My husband is a damn honorable, talented and huge hearted man.  He spends his life giving back to others, helping others to give thanks for how he himself was helped. I have seen him go do this work with his hands trembling from pain and come home in total agony, but again it is not the pain that matters. What matters are the people, who he connects with, who he can help on some level and who through helping them heal his own soul.  I try and help whenever I can and I will until my dying day. Because that is who we are, it is no trick or game; it is who we are and what makes us happy. We are blessed to have found and be a part of similarly thinking people who get it in their bones that in helping others you refuel your spirit and heal your soul.

Another view of the waves at the Cliff of the Dawn -
To the Mayans this was a sacred island where you
came to heal . . . I kinda agree with them.

So I blocked the idiot – removed and deleted any and all nasty posts he said to me, because the time I got left will be spent positively, in service to my community and in making this place better than I found it in any way I can for as long as I can. As I see it there have been multiple changes for me to have been ‘called home’ and each time I awake and come back so someone in high places still has work for me to do and I will keep doing it until I am done.

For those who don’t like it – don’t let the door hit ya on the way out.

 

Jeff and I, exhausted after a dive.  Yes it is hard for us to do it but the memories
are worth it. I can tell you when I have those weeks ing the hospital and things
are real tough, these are the pictures and memories I hang on to, and fight
so we can go back there and make more memories.

The white sands of North Beach on Isla Mujeres - with some of our greatest joys and passions, the work Jeff does with Operation Freedom Paws, paw prints for our service dogs, and the Rolleflex camera and the love we share around all of it.

Health Update: Into the Woods

Health Update: Into the Woods

The way is clear,

The light is good,

I have no fear,

Nor no one should.

The woods are just trees,

The trees are just wood.

No need to be afraid there-

I have been trying to write a blog entry as a health update for some time now. 

I do this for a couple of reasons:

1. To get the information out into the general knowledge of my friends, family and community accurately so I don’t have to tell and retell the stressful story over and over. I learned years that if you don’t explain what is happening people with fill in the blanks with crazy rumors and I prefer to share the information myself.

 2. The process of writing helps opens the pressure value on the stress around all of the medical stuff and stress greatly negatively affects my ability to heal so the writing is part of a multifaceted treatment including meditation and other continuative behavioral therapy (CBT) exercises.

I can't write fully about this one yet . . . physically it is hard to be awake for more than couple of hours at a time and many times when I am awake the medications have such hard side effects I spend that time very sick or worse.  Also I think it is difficult because I am still in the middle of the journey of it all. Usually I wait to write until I am on the downside with a clearer head and view of everything.  This time I am standing in the middle of the forest and the tress are tall and dark and the paths head out in multiple directions none of which are clearly heading to the light.

So I will revisit all of this and explain some of the deeper thoughts and feelings but for now here is the details to the best of my ability – it has taken six days to get this written so it is what I got for now.

***Warning: the following post contains medical information describing my condition; which is serious and not suitable for all audiences***

Me at O'Connor Hospital, both Girls had to get on he bed
with me - Selah wanted to add to the healing

 On Valentine’s Day, Feb 14^th, 2015, I was hospitalized with a fever of 102.9 and BP rate of 111/60 and pulse rate of 110.  My normal vitals: temp is 96.5, my normal BP rate of 120/80 and my resting pulse is 60.   I was rushed by ambulance to the ER and then admitted to the hospital.

The diagnosis is septicemia or sepsis, stemming form a bacterial infection in my bloodstream that started as a urinary tract infection that spread to a bladder infection and then into a kidney infection which caused an abscess in my kidney which ruptured and sent bacteria into my blood steam.  Sepsis or septicemia is a very serious condition, because the infection is in your blood stream as it circulates through out your body it can easily cause your internal organs to shut down.

I was hospitalized for five days and given huge doses of IV antibiotics.  The blood culture showed I was positive for gram negative pantoea agglomerans bacteria. This bacterium is known to be an opportunistic pathogen in the immunocompromised patients, causing blood, and urinary-tract infections. Once I was stabilized, I was released into home nursing care to continue IV antibiotics.  Gram negative bacteria in the circulatory system causes a toxic reaction, resulting in high fever, low blow pressure, high pulse rate and life threatening endotoxic shock, or in other words seriously bad infection.

Ellie in my hospital bed: doing her job 

Ellie is overjoyed to see Daddy.

After a few days in the hospital I was released into home nursing care.  Where with the help of home nursing care I would continue IV antibiotics for another 14 days.  We have to monitor and track my vital statistics every 3 hours – making sure my temp does not go over 101.9 – which is our “go directly to the ER” number.   The temperature is also a marker of how well the antibiotics are controlling and healing of the infection.  After the first round of antibiotics we had to wait five days and then take a blood culture test.  The blood culture revealed I had a second bacterium that was more resistant now in my blood stream, which was accounting for the continuation of the fevers.  We think the CRE was introduced while I was in the hospital.  Which is not uncommon and the main reason why both my doctor and myself want to keep me out of the hospital and in home care, away from more resistant bacterias.

We started a second round of more targeted and aggressive antibiotics – the kind of antibiotics which come with side effects very similar to chemo therapy.  So I spend a lot of my waking time with my head in a bucket or holding on to my service dog to try and make the room stop spinning.  The side effects are harsh and the infection it self also has some difficult symptoms – if you have ever had a serious kidney infection or kidney stone you have some idea to the pain I have in my back. My right kidney has a 14mm abscess so it is inflamed and very unhappy. I have been through a lot of painful medical situations in the past and this one is up there in the top 5 for miserable and terrifying. 

Evening temp spikes

I am starting my third round of antibiotics and getting care from an infectious disease specialist because we are worried that the infection is hiding in other organs.  I am exhausted all the time; my body aches all over, my back hurts very much from the inflammation of my kidneys and I exist in a state of nausea.  I am also stir crazy from not being out of bed much.  I sleep a lot.  In the next week I have a large amount of tests that will need to be done to try and locate where the pockets of infection are hiding and that means multiple hospital trips and invasive procedures. All of which I am very much looking forward too with as much glee and excitement as one in my state can muster.

My support team at home is great. My husband, Jeff is doing wonderfully in helping my monitor and record my vitals and making sure I get all my meds but he is also still doing all the full-time care giving chores of helping me when I can get food and trying to cater to what things I might actually want to try and eat, which takes a lot of time and work.  

Ellie and Selah on duty : "get back in Bed MOM!"

Ellie on the job - she takes taking care of me seriously.

Ellie my Service dog is working her butt off; she is glued to my side everyday helping me.  There are so many stories to tell about how she has helped me through this (I promise to write about them when I am able).  Selah has also stepped in to be the sentry – she runs to bark and tell Jeff if I call out in pain or the alarm on my IV pump goes off. Selh Jumps of the bed and runs of to bark, "Gwen has fallen down the well come quick come quick!"

But the burden of being a caretaker to a spouse who needs this level of care is emotionally and physically draining.  It is a hard thing to go through and it is harder still to know how hard this all is on him and to understand that my illness is the reason for it.

My IV pump - an older baxter
model "the work horse":
we hang my Banana bag
(vitamins and 5% dextrose)
on one side and the
antibiotic bags on the other side.
I also have PCA that is not pictured.

I use humor to get through most hard times, in the beginning I would joke about my condition having a higher mortality rate that Ebola.  I thought it was funny . . . considering the hospital still had Ebola warning signs up at the front door stating it was certified to handle an outbreak if one should hit in small town CA this is where you come! like some odd advertisement.  I saw those signs and found them hilarious. So the Ebola joke was for me a way of wrapping my head around how serious this is, more viscerally than filling out the advanced directive forms or having a doctor exclaim they are amazed I am stil alive for the upteenth time. My little Ebola joke was a way for me to get a handle on what was going on inside my body and what I was fighting and why I had to be a good compliant patient and rest and do as I was instructed. My little joke was how I was coping with it all. 

One of my doses of "meds"
 I do this every 4 hours.

Until the day I quipped off my little Ebola Joke to a close friend and my husband turned to me with tears in his eyes and said. “please don’t say that any more, I don’t want to hear that anymore.”

“I am joking hun,” 

I replied almost dismissively, “just about the odds you know, like gallows humor”

From a still and stone expression as a single tear escaped his steely gaze he said, “I know the odds, and I don’t think it is funny.”

He is right of course, it is not funny and we both know the odds and we are still in the woods on this one. 

All of the fur babies in bed helping with the healing: Ellie, Selah, and my cat Pax.

I am told it will be some more weeks before things will turn around and I am still strong and hopeful and in my fighting spirit.  We are coping as best we can on this one and we are lucky to have some amazing friends who come by to help with the daily life maintenance stuff which becomes seemingly impossible with all that must be doing with IV tubing and medication bags and injections – thinking about sorting laundry and vacuuming floors feels like a far away luxury of health.  So we are blessed to have the support of some really lovely friends who have come to help us keep coping.  And that is what we will continue to do until we win this battle and trust me we will win this battle and walk together out of the woods, cause that is what we do.  We keep going, hand in hand like always with two funny little pups on either side of us.

All of us

That is all I can muster for now – I’ll fill in the blanks later and continue to update as things change. Until then I’ll let Sondheim take us home.

Into the woods,

Without delay,

But careful not

To lose the way.

Into the woods,

Who knows what may

Be lurking on the journey?

Into the woods

To get the thing

That makes it worth

The journeying.

Into the woods!

Into the woods!

Into the woods,

Then out of the woods,

And home before it's dark!

Today was a tough one, one of the worst in a while.  I know all to well that I could have it worse and that there are plenty of people out there who do.  But today was one that stretched the envelope on my own strength.  I woke up to find my PICC site bleeding heavily again.  It soaked through the dressing and leaked out of the waterproof seal and onto everything.  Seeing more blood scared the shit out of me: knowing the amount of medical crap that would follow.

This is how it started - feeling a trickle of warm blood coming out of the dressing and running down my arm into a pool on the pillow.

 And it did follow; first the on call nurse looked at it, and she refused to do anything but call an ambulance, which I refused to get into because it would route me to the nearest hospital which is not the care needed.

So we headed to a slightly further ER with better care and cued up for the fight to see if I would be admitted to the hospital.  By the time we got to the ER - I had the blood running out of the bandage and into 4 layers of gauze sponge. They have to X-ray the line - make sure it is not bleeding because you pulled it out or something, they confirm the line is working, then they clean up your crazy bloody mess, and give you a new sterile dressing.

Here I am waiting . . . . and waiting . . . .

 And waiting some more . . . Jeff fell asleep in the chair next to me - poor guy has been up all night helping me every time the IV pump alarm goes off from air in the line or an occlusion of the line.

And then they want to keep you for observation, make sure your line is working, that your gut is trying to work.  And they listen to your guts and it makes no sound, or just a high pitched whistling sound all of which cause them to all make that same worried, "I don't know what the fuck to do" face.  Then you discuss the pros and cons to being admitted.

1.  The cost I cannot afford, I would be getting exactly the same treatment, same meds and same IV and same nursing care - with less sleep for 5x the cost.

2. I would be exposed to germs that with my compromised immune system could kill me.

3. Did I mention the cost and the burden that cost places on my family?


Thank goodness I got them to listen to reason and I was released beck to home nursing care.  Back to my little room with my IV pump going beep beep beeeeeeeeeeeeeeep every 15 minutes. I came home and started that iv pump again and drifted off to sleep hoping beyond hope that I would wake in some other life.

Funny thing is that I had not stopped to look at the date until after I posted this.  It was a year and a day ago when I fell unconscious while on a PICC line and had to be resuscitated by my husband, who performed CPR until the ambulance came.  My life changed that day, it dropped to a whole other level of living with illness, and a year later I fear we have leveled up again towards the big boss battle that comes at the end of the game.

"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.