2017 may have not been an "ideal" year, but I honestly have to admit that it wasn't a wasted or horrible year either. Yes, there are things that could have gone better, health that would have been nice to see improved, activities that I wish I could have participated in, etc. However, while there were challenges, (there always will be), I learned a lot about myself. While facing fears and uncertainties, I gained courage and confidence. While in my low trenches, I survived by holding on to faith, depending on supportive family, and listening to advice from trusted medical team members. Along the way, I attempted to help others know that they are not alone with their health conditions.
Realizing the growth, regardless of how minimal, that I did accomplish in 2017, has lead me to no new resolutions in 2018. Instead, this year, I’m going to continue working on living in the moment, cherishing memories & time with kids and loved ones, using the knowledge and experiences from the past to make me more aware moving forward, and appreciate God’s continuous blessings & grace to help guide me along my life journey!
I am realistic and know that more tough days will undoubtedly be ahead, a new year will not remove all the pain, sickness, or fears! There will be days I'll feel awful, symptoms that will feel unbearable, circumstances that will confront my resiliency, and events that will challenge my self-identity and perception.
BUT, I feel comforted knowing that I will also have times of laughter, joy, and pride ahead of me. Enjoyment will be found and witnessed, sometimes in the most unexpected places. These positive moments will make life worth living, worth celebrating, and worth looking forward to and hanging on for.
As a result....
this year I'm simply praying that 2018 has more ups than downs, more laughs than tears, & lots of loving memories that will last a lifetime and beyond!
Christmas this year went as well as expected.
Time with family and well-loved traditions.
New memories created, authentic joy discovered.
Symptoms, pain, nausea, sickness still present.
My body over-exerted, pushed to the max, but
all with the understanding that I must make the
most of each moment, as the season would be
passing so quickly and time to recover would be
just around the corner.
Patience was a virtue, as my family and I
ensured that preparations were made to make
Christmas as calm, relaxed, and stress free as
possible, while not taking away from the precious
moments we were blessed to have together. The
week following, was also left low-key,
allowing my body the opportunity to recuperate.
I must admit, I was not expecting fatigue to linger so long,
but all in all, this Christmas was memorable and cherished.
The past month or so has been rather eventful. I finally felt like I was recovering a part of me that I had been missing. My goal of growing spiritually was evolving nicely. Feeling confident that I was on the right path, enjoying short outings to church and even a couple of life group meetings, and evaluating my personal goals and relationships by focusing on my book study, all added purpose to my days. I actually believed that I was on the path to regaining some self-worth and meaning in my life. Physically, my body was still symptomatic, even alongside my spiritual and emotional improvements. Symptoms still interfered and roared their ugly head, but at least I was traveling in a productive and appealing direction.
UNTIL... my body decided to throw a complete, indescribably, irrational, and unforgettable nightmare my way. Without going into the specific details about my health experience leading up to and including the infection that resulted in an unexpected hospitalization, fears have clearly returned.
I would think that it's only natural to rethink, overthink, and even become overprotective with the goal of preventing a repeat. However, I was not ready, and still not ready to accept, moving backwards. I was just gaining the confidence to take risks, as minimal as they may have been, to feel alive.
Currently, that progress has disappeared. Everyone has me walking around on eggshells, including myself. Fears of repeat infections or overexertion are at the forefront. Concerns over being sick during the holidays, avoiding all the colds and illnesses that are so prevalent right now, and worries of what is yet to come regarding PORT replacement in the future, are all playing in overdrive.
Now it's time for me to figure out how I will go about regaining the ground that this most recent health dilemma has stolen from me. But first, I must find the energy and patience within myself.
I am not a patient that likes to complain about my medical care. I pride myself in being a knowledgeable, respectful, and easy going patient. However, in certain circumstances, I'm left with no other option, such as this case. After the lack of appropriate care, in fact, being placed in a dangerous and risky predicament, I wrote the following letter to my hospital president with the goal of making them aware of the negligent care they provided and hopefully prevent a repeat in the future for others or me. (This was not the same hospital that I usually visit. All names have been omitted.)
I am writing to you in regards of treatment, or more specifically lack of follow-up, from the -------- Medical Emergency Department in --------- and/or the area of the hospital responsible for lab cultures and follow-up contacts. I am complaining, as you will see in the description below, that I, the patient, was NOT notified al all from -------- Medical about Positive Blood Cultures (Klebsiella Pneumonea) being obtained from my central line (PORT), even though I had been experiencing related symptoms and have increased risks of infections due to my health, PORT, feeding tube, and ileostomy. As I am sure you already know, bacterial infections in central lines and in the bloodstreams are not to be taken lightly. At a moment’s notice, the infection can cause chaos within the body, increasing in severity extremely quickly, often leading to death. As a patient with chronic illness, I have sadly witnessed numerous friends in my online support groups, passing unexpectedly due to sepsis. Knowing this, I am very disappointed and even outraged that a positive culture didn’t lead to a phone call or notification.
My goal in this complaint is not to have anyone fired, but do believe that whoever was responsible for not following through on what should be basic protocol, should be reprimanded and made aware of the dangers of their lack of attention. Whether it’s being educated on the dangers and specifics of PORT infections or new protocol measures, something should be done to keep this from happening to others. I was very fortunate, my primary and I were persistent in receiving a copy of the actual culture results (which should have automatically been brought to our attention) and able to begin the appropriate treatment before the infection intensified too much. However, we can’t deny the fact that my health was put at an unnecessary risks, being that nobody ever notified me or him.
I would appreciate a response to this complaint, in writing or by email, informing me of what actions were taken, if any, what your hospital procedures are regarding blood cultures for possible central line infections taken during emergency room visits, and an apology for lack of notification. I do not take my health lightly, understand that mistakes happen, but also deserve to feel as though my family, friends, and I have a competent medical center/hospital, nearby, that takes patients’ lives seriously and responsibly.
I am attaching more specific details below, as well as related medical reports. (For privacy reasons, not sharing medical reports on blog.)
More specific details regarding treatment on Nov 22, 2017 & symptoms leading up to..
Prior to the date of my complaint, I had been in search for answers. On 11/18 I visited ------ Medical ER. I have no complaints about service for this visit, though in retrospect I wish the PA or I one had elected to pull blood cultures. Had had, vomiting spell night before, rough night, awoke to migraine, abdominal pain, and intense nausea. A few hours later, while running IV fluids for day, body all of a sudden went haywire. Sitting on couch, out of blue, constant severe pain, intense rigors, and horrible cramping/spasms running down both arms, legs, abdomen, chest, upper back, and neck. The pain was excruciating and I was unable to get still or in a manageable position. Definitely off of the rating scale, no question about it, but decreased to tolerable levels by time I was seen by the PA. My arms and legs began feeling tingly and numb, my home blood pressure at that time was 95/58 No fever. Diagnosed by PA as having myalgia. That evening, fever began, highest I recorded was 101.9 - went to ----- ER and told possibly flu like illness (negative for flu). Left with directions to alternate tylenol and motrin every 3 hours. Once again, in retrospect, wish we had pulled PORT/blood cultures but still first day of symptoms.
Symptoms continued, tried to wait them out, telling myself that I had already been to the ER twice with no answers/reasons except possibly viral illness that would take time to heal. Suffered intense spells, rigorous chills, off the chart pain. Sweatsuit with heating pads and heating blankets on high, as well as blankets and tears did NOTHING to help. Kept feeling weaker and weaker. Eventually, contacted PCP on 11/21 about extremely severe attacks with pain all over body, extreme nausea , migraine, shivering chills, chattering teeth out of nowhere. I was still wrapped up in hoodie, with neck and head pain, heating pad on legs and heating blanket also on High wrapped around me completely wiped out. I told him that I didn’t understand what was going on but wasn’t getting help or answers because labs appeared ok (or near range) and the severe indescribable attacks were in unexpected spells with lingering achiness and seemed to be linked with IV hydration via my PORT.
His response: Possibly could be flu like, but also concerned that it could be an infection in my PORT as bacteria in bloodstream causes the exact same symptoms that I was experiencing. He urged me to immediately return to the ED if I had another episode as bacteremia can be very serious.
On Wed 11/22, after continued symptoms and another off the chart episode, I did once again attempt going to the ----- ER. This time to have cultures run, as suggested by my PCP, to see if I had an infection in my PORT or bloodstream. (As a patient with a PORT for home hydration 5 days a week, a GJ feeding tube for daily nutrition, and an ileostomy - I am considered high-risk for bacteremia.) The pain felt too intense to travel any distance, even making it to the car was a challenge in and of itself. By the time I was finally seen in the ED, my symptoms had become more tolerable. ONCE again I tried to explain everything that I had been experiencing. The migraines, the pain, shivers, etc…. I shared my concern about having a possible PORT infection as the most severe symptoms seemed to intensify while running my IV fluids. I specifically asked to run blood cultures. Cultures were taken from my PORT, they did not take any peripheral cultures (from my understanding it's usually protocol to take both, so as to determine if the PORT is infected or the bloodstream too). I was diagnosed with a UTI. When discharged I asked for a copy of my “routine” labs, was told that they had no concern of an infection but would be contacted if it did come back positive, though Dr ---- expressed to me that he believed everything would come back fine. Upon returning home, I looked at my complete blood count and chemistry report from 11/22, I noticed some labs being out of range, but nothing too alarming, except my procalcitonin. I had never heard of procalcitonin before. But reading the report it said my procalcitonin was 6.26(c) which is high considering that the normal range is supposed to be 0.0 - 0.05. Underneath the result was a reference table that stated anything greater than 2.0 = systemic infection (sepsis) is likely, unless other causes are known.
11/25 I continued to feel absolutely dreadful, but took the keflex pills as ordered for the UTI Dr ---- diagnosed me with. Thinking maybe it was just an awful UTI making me feel so awful (even though I had NO UTI symptoms.) I did contact my primary (he is in -------) to tell him about the continued symptoms, what Dr ------ had said about scheduling a follow-up in one week to make sure UTI had cleared, and to make him aware of the procalcitonin level of 6.26, since that was a lab that I was unfamiliar with. I also told him that Dr ------ told me I would hear back if anything actually grew in my PORT culture or if urinalysis culture showed that a different antibiotic was needed for the UTI.
As of Sat, Nov 25 I had NOT heard anything back from my Wed Nov 22 cultures, so I was trying to take that as good news. I was still feeling awful and knew something in my body was not right! But also hopeful that the keflex would help. My PCP was concerned over possible bacteremia (serious blood infection), so we were both trying to be vigilant to get our eyes on the actual culture results.
My complaint begins here, after being discharged from the ED, due to the lack of follow up for positive culture results. (I'm not sure who the responsible party for making these important follow-up contacts are, that's where I need your help.)
11/27 (Monday) I personally called -------- Medical to find out what my results from Wed cultures were. I wanted to be sure that the line cultures were negative (as something was telling me that it could be an infection) and I wanted to make sure that the Keflex antibiotic that they prescribed to me in fact did match with my urine cultures. It took calling the hospital 3 times, playing the runaround game, being placed on hold and transferred to someone else over and over again until I was finally heard something. I was rudely told that if I hadn’t heard anything that I was fine. That ------ or ----- would have called if my results had come back positive, that if I had not heard back then they were negative.
(Really? In retrospect, that is not what happened in my case.) After that phone call, I figured that it was going to be a waiting game and that with time my symptoms would resolve. According to ----Medical, nothing else could be done to help me but waiting it out.
On Tues, 11/28 I contacted ------- Medical Records and requested that they send a copy of my records, labs, notes, and cultures to my PCP for my ED visits on Wed 11/22 as he had still not received any paperwork.
11/29 PCP let me know that ------- sent records to him, but did not send the culture results that we specifically asked for, which were the most important part that he needed. Again, I called ----- Medical records, she was polite and apologized, and said she printed it off this time to make sure the cultures were there and was faxing it at that moment.
Thurs Nov. 30, my PCP let me know that he STILL didn’t have a copy of the needed cultures. I personally went to ------- Medical myself to pick up the actual copy so I could ensure that my primary received the cultures. Upon reading the results, I immediately read that the cultures were POSITIVE, yet NO ONE had bothered to attempt calling me or contacting my PCP to let either of us know. The culture was growing Klebsiella Pnuemonea!
Did they not realize how serious even life-threatening, having a line infection could be? By the time I got home, while in the process of contacting my PCP, his nurse called and said that my PCP had just received the cultures and that it was indeed positive. I was instructed to be seen in their ER, take my culture reports with me, and would need to be admitted for IV antibiotics and new cultures as this could become extremely serious, possibly even leading to Sepsis, which can also lead to death.
Talk about frustration, overwhelming fear, and confusion. Why would ----- have not let me know about these results so I could have been notified and begun treatment earlier? Why were they willing to put my life at risks? Hell, according to the paperwork I picked up on Nov 30, ----- Medical had the POSITIVE results on Sat Nov 25! I called them on Monday the 27th to ensure that the results were negative and was given the run around and eventually told that if I had not heard anything then the results were negative. Well, we found out that this was not true! My results were in fact positive, I was symptomatic and had increased risks for bacteremia due to my central line, and no one let me or my primary know anything! It was Thursday Nov 30th, over a week after cultures were taken, after persistent attempts from my PCP and me, before we were ever able to find out the truth!
I should have been admitted and receiving IV antibiotics the very day they found out that my cultures were positive. But no, they were willing to let me go without any intervention or help. Without any notifications. What if I had become septic, faced organ failure, or worse, died? Any of which were possible, because they did not take my health seriously, simply because they didn’t take the time to tell me that I needed to be started on IV antibiotics to kill the bacterial infection that was present in my line and come to find out (after admitting hospital took peripheral cultures) in my bloodstream as well.
------- Medical was negligent with my care and treatment due to lack of follow-up. ------ Medical was responsible for my care and should have contacted me immediately after seeing that the cultures were positive for Klebsiella Pneumonea.
My primary guided me in the direction that led me to correct diagnosis and assistance. He easily could have let things go as well. He stepped up, where ----- MEDICAL FAILED me! Somebody dropped the ball at my expense, which is exactly why I am filing this official complaint.
On Nov. 30, after learning my culture results from the actual copies that I requested, I did in fact follow my PCP’s advice and visited his ED. They took cultures of my PORT line as well as 2 peripherals from my arms, admitted me for IV antibiotic treatment of Rocephin, removed my PORT on since all cultures from PORT and arms came back positive for Klebsiella Pneumonea, and eventually placed a PICC line before discharging me later the following week, with the remainder of my IV antibiotic and a few days of oral antibiotic (Cipro) following the conclusion of my IV treatment plan.
The purpose of my complaint is for ------- Medical to determine who didn’t complete their job effectively, who did not follow up and contact me about the possible life-threatening results and need for IV antibiotics. I want to prevent the same thing that happened to me at ----- Medical, from happening again to someone else or me. The next time, the patient may not be so lucky, and may suffer severe consequences, or even death as a result of someone not taking a couple of minutes to make a very important and simple phone call.
Thank you in advance for your prompt investigation into this matter,
*Did sending this complaint accomplish anything? I don't know, possibly not, but it did allow me to have my say. Maybe, just maybe, it at least brought the issue to their attention and made the responsible party aware and reprimanded. Supposedly, according to Chief Medical Advisor, protocols were changed to alleviate and improve their policies to prevent this from occurring again. I know that his comment was likely just hot air, but hopefully, it did make an impact.
Giving my all,
trying to find peace and grace within myself,
searching for a better sense of my identity,
striving to portray myself authentically
while being true to my desires for life.
Giving my all,
discovering ways to feel useful,
pursuing ways to grow spiritually,
using experiences to strengthen relationships,
while hopefully providing comfort and support to others.
Giving my all,
seeking ways to physically feel better,
scrutinizing possible reasons for recent deterioration,
reaching out for medical help despite reservations,
while attempting to trust all medical advice given.
Giving my all,
writhing from unexplanable relentless pain,
shivering and shaking from unyielding chills,
crying out for something, anything, to make it stop,
while praying that answers and relief would soon come.
Giving my all,
soliciting answers for the cause of my symptoms,
patiently suffering in agonizing pain,
heaving and vomiting with head pounding,
while no one seemed to have a solution.
Giving my all,
confiding health concerns with my primary,
wishing he could offer much needed assistance,
graciously accepting his opinions and suggestions,
while struggling to keep myself together without complaining.
Giving my all,
requesting records and cultures from an ED visit,
making every effort possible to get copies to my primary,
venturing out to get my hand on the actual results,
while frustrated over the ED's lack of concern.
Giving my all,
secretly hiding my fears from family,
relying on my primary to finally find some relief,
following his orders to visit yet another ED,
while completely feeling drained and depleted.
Giving my all,
preparing best as possible for a hospital admission,
talking with my respected and reliable confidant,
gaining control of my emotions and angst,
while knowing I was about to be under the care of unfamiliar doctors.
Giving my all,
surrendering myself to their needles and tactics,
relinquishing control to them and their treatments,
repeating my health story again and again,
while gaining confidence that the worst was finally going to be over.
Giving my all,
appreciating the doctors and nurses willing to help,
acknowledging the blessing my primary has been,
recognizing the importance of reaching out for his support,
while gladly welcoming an end to my bacteremia chaos.
Not sure what I would have done if it had not been for my primary stepping in and guiding me in the right direction. I knew something was not right with my body, feared that it could be an infection in my PORT or bloodstream, but couldn't get any answers or relief. After three separate ED visits, all within a couple of days span, I felt like I must be going crazy. I started doubting how much longer I could handle or deal with these horrifying symptoms. However, my primary communicated with me, believed my agony, knew that I typically avoid emergency departments at all costs, agreed something was definitely going on, predicted it could possibly be a bacteremia infection, remained persistent on seeing actual culture results himself, discovered I had klebsiella pneumonea infection in my PORT and bloodstream from the most recent ED visit's cultures, informed and prepared his ED team of doctors for my arrival, and ultimately ended this tormenting experience. My PORT had to be removed, a PICC line placed, and IV antibiotics for days during my hospitalization, but, I was so thankful! The medical team that took care of me was great and a new sense of comfort was discovered. Now I am aware that I do indeed have a primary that I can depend on.
Moral of this experience:
Trust your body! You know yourself better than anyone else. You shouldn't be afraid to reach out to your doctors in times of need. If you are not improving, don't try to sit back and ignore. Listen to what your body is saying and take action. It can literally be the difference between life and death sometimes. Luckily, the infection I had was treatable and not resistant to antibiotics. If it had continued to go untreated, it would have likely increased in severity, leading to possible sepsis. Sepsis can lead to organ failure and even death. A reminder of just how important and essential it is to have a doctor that you can trust and communicate with. Having a doctor that's invested in what's in your best interests is a valuable asset never to be taken for granted.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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