I have kept my previous posts about my health status to smaller groups,
mainly to not worry people. My
silence in public forums has been met with a number of messages asking, “What
is going on?” and “Are you Ok?”
The last thing I want is for people to fill in the void with
misinformation, so I am opting to give the full overview of my current status.
The short version: The week of May 13th, I began
to notice I was starting to have the symptoms of a bowel obstruction. I go through these intermittent
blockages on a regular basis due to extensive scar tissue (adhesions) and a
hernia in my abdomen from numerous surgeries. I have undergone seven surgeries
over the past 13 years trying to restore my GI tract from an initial almost
fatal infection, which damaged most of my small bowel. My bowel is a mess of twists and
narrows that cause continual blockages.
These blockages have painful symptoms including: severe pain and
cramping, swelling and distention of my abdomen, nausea, vomiting, diarrhea, dehydration
and a list of other truly unpleasant things. Almost all of the obstructions I experience are caused by
scar tissue and will resolve over time. Because I have already had so many
surgeries, it is never advised to do more surgery unless the obstruction does
not resolve and my bowel begins to lose blood flow, which would necessitate
emergency surgery to re-section the bowel and save my life. So I live in an almost constant dance
between obstructions.
I have been hospitalized for bowel obstructions over 20
times. The treatment for
obstruction is almost always the same; a CT scan and fluoroscope are done to
determine where the obstruction is along the bowel. Ninety percent of the time they occur in the same spot where
the intestine narrows and twists back on it’s self. The treatment is to give me IV fluids to counter act the
serious dehydration. [an obstructed bowel will rob your body of all available
fluid and push it into the bowel to try and dislodge the blockage, thus causing
your abdomen to swell painfully. At the same time your stomach will not allow
any more fluid or solids into your blocked system so the vomiting begins, this
cycle causes severe dehydration rapidly] The IV will deliver fluids,
antibiotics [because the possibility of bowel perforation and infection is
real], nutrition/vitamins, anti-nausea, anti-inflammatory and pain medicines
intravenously. Typically I
will be NPO or [L.] nil per os (nothing by mouth) and over time slowly progress
to clear liquids, then soft and squishy foods and finally bland semi food like
things. So the basic gist of the
treatment is give me fluids and medication through IV and wait until the
blockage finally moves. This
process can take days, weeks and sometimes longer. Most of my hospital stays are upwards of 10-13 days and
remarkable expensive.
Over the years my doctor and I have learned how to treat
these obstructions outside the hospital, by having IV lines administered at
home. Most normal IV’s will last
2-3 days on me before blowing and becoming useless. So on more difficult blockages I have to have a PICC line inserted.
[A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic
vein, or brachial vein and then advanced through increasingly larger veins,
toward the heart until the tip rests in the distal superior vena cava or
cavoatrial junction. The PICC line is inserted by a surgeon and is guided
through the vein using a fluoroscopy and ultrasound.]. The current PICC line I have inserted
is 46cm. Once the PICC line is inserted
I can be released to home care with a visiting nurse to monitor treatment and
change the bandages and tubing every 72 hours. My husband and I were trained to administer all of the
medications, change tubing and bags, and monitor the IV pump on a daily
basis. There are huge benefits to
being at home. First I am at much less risk for infection away from the
hospital. Seventy percent of your immune system is located in your GI tract and years of going through bowel obstructions and mal-absorbsion my
immune system is not able to fight off most infections, so hospital stays can
be a big risk for me.
The major drawback from not being in the hospital is pain
cannot be controlled as effectively.
In the hospital I have round the clock nursing and access to pain
medication, which you cannot receive at home. This makes it far more painful to be at home, but I
personally will endure the pain to stay home. As the blockage begins to resolve
and my GI tract starts to move I can disconnect from the IV pump for hours at a
time, which can give me the freedom to leave the house and for some one as
stubborn as me –it gives me the ability to go to work (this appalled my
doctor). I have continued to work while
wearing a PICC line several times over the past year. I have even run a conference while wearing one and most
people did not even notice. All I
have ever wanted was to just be normal and do my job, so I wore long sleeves to
hide it and simply got back to doing my job. I have been busted by co-workers a few times when the line
slipped out under the cuff of my sleeve or they noticed the bag of syringes and
IV supplies in my bag; when you disconnect you still have to give your self
meds and then flush your line before locking off the line again. They would ask
about the line and I would brush it off as no big deal. I try to brush off most inquires about
my medical condition as no big deal, because when people find out you live with
a serious medical condition, they tend to treat your differently and most times
not for the better. I have learned to try my best to hide it when ever
possible.
There is still a great deal of risk in wearing a PICC line,
because it is a direct opening into your arterial vein – so there is always a
serious risk of infection, risk of getting air into your lines, and problems
with bleeding if the valves are not locked properly. I have experienced all of those at one time or another. On Monday, May 20th I
experienced one of the most dangerous risks. I was awaiting the AM nurse to
assist me in prepping for the morning dosages and prepping to lock off the line
so I could travel to work. There
was a mix up in the medication, we are not quite sure what happened or how because
the IV works instantly a mishap like this has instant effect. I remember seeing, feeling and tasting
the Heparin’s metallic sting and that is it.
From here on I describe what my husband recounted to me a
week later. He said I started to
stare off blankly holding the two ends of the tubing from the IV pump and the
extension tube from my arterial vein. He asked me what was happening and trying
to grab hold of the lines to attach them like normal. I jerked back and fought him, which was very unusual. As he
reattached my tubing and started the IV pump again to the normal PRI rate, my
eyes suddenly rolled back into my head and I slumped over, not breathing. My husband pushed the IV pump and pole
out of the way and dragged my body to the hardwood floor. He yelled for our housemate to call 911
and he started to pound on my chest and breathe into my mouth administering
CPR. While my housemate was on the
phone with CPR, my husband kept pumping and breathing. After 4 minutes there was a knock at
the door and my housemate assuming it was the ambulance, threw open the
door. It was not the EMTs but
rather the young man who delivers my IV supplies from the pharmacy standing
there with a look of absolute horror.
The young man immediately started to assist – he ran out to the
courtyard to open the main gate and clear the way. He ran back in to ask for
the keys to the black Honda van so he could clear the driveway. He apparently yelled to my housemate
for the keys to the black Honda several times while she stared blankly at him,
and my husband without missing a beat in the CPR yelled back, “Nette, that is
your car!” She grabbed her purse and threw the young man the keys and he ran to
move the van out of the way.
[Nette, later told me that all the while Jeff kept pumping on my chest
and calling out, “Don’t you leave me, Gwen. Don’t you dare leave me!”] At 8 minutes the EMTs arrived and
took over the CPR. They pulled Jeff
off to the side and asked him to lock up Lobo, his service dog. Lobo had moved next to Jeff and was
doing exactly what he had been trained to do, guard his Daddy’s back and did
not move. Remarkable for the dog
to stay focused and do his job amidst all that noise, yelling and chaos. The police asked for the dog to be
removed and secured so the EMT’s could work. This is standard procedure, but apparently the police
remarked how well trained lobo was as he did as commanded in returning to his
kennel. I don’t know what the
EMT’s did, because everyone was pulled off to the side to give reports on what
happened. At 12 minutes I took my first breath. I had an extremely weak pulse and was loaded into the back
of the ambulance. Nette said Jeff
stayed calm, and focused through it all and as the ambulance sped off the
police informed him to follow them to the hospital.
Luckily we live a couple of miles from the Hospital. I apparently awoke in the back of the
ambulance. I have every scattered memories of this; flashes of the sound of men in uniform screaming at me to breathe. The EMTs where asking
questions and I couldn’t understand anything they were saying. I just remember the
shiny blue metal roof with the while concentric circle lights. Next the
cracking of the blue metal doors, and flash of bright sunlight, then the boom
of the swinging doors as we crash through. Then faces of men and women over me,
asking questions that I can’t answer and the eternal beeps of the monitors.
Everything is foggy and in slow motion. It was a long time until I saw Jeff’s
face and reached for his hand. We have been here before so many times before,
holding each other’s hand in a hospital amidst panic and chaos. People have
asked how we found each other and how is able to handle continue to be so
strong during all of these hospital traumas. Jeff is 16-year combat veteran and has seen a lot of
death. He, like me grew up with a
parent who was ill and learned early how to be self-sufficient and be a care
taker. We have a lot in common
that way and it is why we recognized one another when we met. We were brought together for a reason
and that saying it takes one to know one is a good description of how common
are minds and hearts are. He is always my rock, strong and unwavering.
But now, I can see the fear in his eyes. There is swirl of doctors and nurses,
taking blood, marking clip boards, asking things and my words don’t work and my
mouth can’t make sounds other than groans of pain. I can hear Jeff’s voice answering the questions and forming
the words I can’t put together.
Hours go by, test after test, and I stay over for observation. The test
confirms the blockage and in time I return to home care. My condition has leveled up some and
now on I cannot disconnect my Picc line form the IV pump and I am to be home
bound. Most of what occurred in the
hospital is a foggy blur and so is the first couple of days back home. Once home, in the days following my
ribs hurt like hell. Jeff had to
break my ribs in the process of giving me CPR. Jeff chuckles and tells me, “that is what happens when you
have a big ol Viking pound on your chest.”
The day after we get home from the hospital we go to follow
up with my Doctor, who already has the full report from the hospital and she is
very concerned. I am still under
the delusion that all I need to do is get the obstruction to move and I can be
back to normal and I ask when she thinks I will be ready to go back to work.
She gets a very stern look on her face and she asks me, “do understand how
close you came to dying?” Then Jeff echoes her stern look. She then shows me the results of my
blood test which confirm how dangerously low my levels are across the board, a
result of constant malabsorbsion.
My hemoglobin is 7.3 (normal is 14) all of my vitamins are very low but
my Potassium, Vitamin K, A, and B are extremely low and my vitamin B is so low
the lab has marked it as undetectable.
I have megablastic anemia and the continual low levels of Iron
[ferritin] and vitamin b12 has damaged my bone marrow and my body is having
difficulty making red blood cells.
This has happened before back in 2007 and is just one of the ongoing
side effects of the condition I live with. So I will need blood transfusions, large doses of Iron and
all the other vitamins, and depending on what further testing shows I may again
need to have a bone marrow stem cell transplant. [which is a whole other long term recovery issue but we will
come back to that another time]
The real answer about my health is this is a very serious
condition and one that will not be resolved soon. So I will be staying on the PICC line for a while
longer. I am starting to
transition from clears to soft foods but the nausea is unrelenting. I am hoping
to start to transition off the IV in the next few weeks., but that will be
determined by the continuing test results and if I can control the nausea with
oral medication. People often ask
if there is any surgery that could help or if after time this will get any
better. Unfortunately the answer is no.
I had the one possible miracle surgery that was designed to keep me
alive in 2009 from the only surgeon in the world who could do it. He was amazing and he did the best he
could but there is just not enough left of my bowel to fix things, and over
time my GI tract will continue to have obstructions and at some point one of
those obstruction will not resolve and cause the bowel to lose blood flow and
die. So barring some sort of amazing medical advancement and the ability to
have a bowel transplant in the future – things will not ever get better and
will continue to decline.
Currently I am at home under nursing care. I am feeling pretty weak, I don’t go
long without sleeping and my pain levels are pretty high. The doctor says that is all normal for
what I have been through. The
obstruction is very slowly resolving and I am very, very tired of not being
able to leave my house or be disconnected from this IV pump.
On a funny note, last week the pharmacy delivered more
infusion supplies and it was the same young man who happened to be present on
the day I stopped breathing. He was surprised to see me sitting with my IV pump
and he looked at me and got this huge smile on his face and said, “ I so glad
to see you are still here ‘cuz wow you were like totally blue. Did you know how blue you were? The EMT dudes were saying if your
husband had not been here you would have croaked cause you were seriously blue.
That was scary as hell. Did you
know you were blue? Like hella
blue!”
I laughed and replied, “I don’t remember anything but blue
is not really my color.” He stared at me for a second and then he got the joke
and laughed.
On his way out he
turned to me to say, “ your husband rocks, ya know, he totally saved your life,
that’s cool and I’m glad to see you’re still here.”
I am glad I’m still here too and my husband does indeed
rock!
We are taking it one day at a time. I am home bound and cannot drive. I have to be connected to the IV pump,
with the only exception for short excursions to my doctor’s office. I had to take medical leave from work,
which is so very difficult for me.
I am less than four weeks from the big event I plan for all year and I
have had to hand over all my tasks and let go so I can focus on healing, and
incredibly difficult thing to do. I had been trying to think of any way I could
go back to help with the event, to get back to work and with the same seriously
stern face my doctor explained that if I tried to force myself back to work
right now I would most likely die.
Sobering thought.
So I am getting real serious about recovery and letting go of anything
that is not about recovering.
