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.
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.
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| Hospital stay in Febuary, with both service dogs giving healing |
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| At the Infusion Center at Dominican Hospital, April. With myservice dog, Ellie |
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| 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.
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| 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. |
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| Me with my portable IV pump, it is now my companion monthly, for 10-14 days. |
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| 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.
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| Jeff with Selah while teaching the training class at Operation Freedom Paws |
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| 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.
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.
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| 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.
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| 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 |
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