Johns Hopkins Scholarship to Reach a Goal

The Guided Care Nurse

In Guided Care, a specially educated registered nurse plays a critical and central role in ensuring that patients receive high-quality and coordinated care. Guided Care Nurses reconnect people to the center of care, are empowered to take control of their patients’ care, provide personal support to each patient individually, and offer support to family caregivers.

To become recognized professionally as a Guided Care Nurse, a candidate with a nursing degree and a current license must complete an accredited online Guided Care Nursing course. Upon completion of the course, the nurse is eligible to take an online examination leading to the American Nurses Credentialing Center's new Certificate in Guided Care Nursing.

(http://www.guidedcare.org/nurse.asp)

Email to my Supervisor

I know that the hospital and our department have financial restraints related to approving continuing education opportunities.
I have invested a lot of myself in trying to participate in the JHH “Guided Care Nursing: program.
I have submitted two separate employee request packets over the past 6 months for this program and have not heard back.
I am SOOO Happy to find out that there is now a 100% scholarship available through JHH!!!!
I have completed and submitted all but one requirement….
They require a letter of support from my Supervisor.
I have written a proposed letter…it is attached… if you are ok with it can you Please print it on facility letterhead and sign it???
I need to get it in ASAP to be considered for the next class.
Thank You So Much… I really Appreciate Your Help!!
I truly believe that this information can help improve ED Pt Care Coordination!!!

The Letter

Monday March 28, 2011
Dear Sir/ Madam,

I am aware that our Emergency Department Patient Care Coordinator (ED-CC) has applied for your “Guided Care Nursing” course scholarship. She submitted the essay copied below. The facility and I are indeed congruent with our ED-CC's goal to improve Emergency Department Care Coordination by integrating the principles of “Guided Care Nursing”.

I have been actively searching for a method to finance the Guided Care Nursing Course since I discovered it about six months ago. The day I wandered into the general information web page, describing exactly what a “Guided Care Nurse” does I knew it was the “Cinderella’s Slipper” that I had been seeking. I have been a Registered Nurse working in Case Management settings for seventeen years. “Guided Care Nursing” is a concept that I have always believed in and informally practiced as often as possible.
Currently I am employed by a large medical center, as a Patient Care Coordinator in the Emergency Department. I assist patients, medical staff and others with planning appropriate care, placement, resource intervention, and long-term medical management. We have a large population of patients that are “repeat customers”. Many of these patients have multiple chronic conditions with little to no follow-up support system. They use the Emergency Department as their sole primary resource.
A scholarship would provide the means for me to complete the “Guided Care Nursing Course” and broaden my skill base. I would be better equipped to assist these “repeat customers” with innovative chronic health management strategies. This would not only impact optimal patient wellness, but create improved financial responsibility.
Currently my hospital is fiscally burdened with uninsured and minimally insured “repeat customers” who use the Emergency Department as their sole primary resource in managing multiple chronic issues. Implementing “Guided Care Nursing” Strategies as part of Emergency Department Patient Care Coordination would seriously benefit the patients we serve and the financial impact absorbed by the hospital.
Respectfully,


Email Notification of Award

Dear Participant
Congratulations! You have been awarded the Online Guided Care Nursing Course Scholarship to attend the session dated May 2, 2011 – June 10, 2011. We look forward to your participation in this continuing education program. Course logistics for the May 2nd session will be sent to you in the near future. If you have any questions or require additional information, please feel free to contact our office at 443-287-4745 or via email at ijhn@son.jhmi.edu.


Follow Up

I am excited to gain insight and intervention strategies to improve our ER patients quality of care/ quality of life.
My thought is that the Care Coordination/ Case Management Skills I gain, will also add to my knowledge base as a community resource in Chronic Disease Health Care Management. As life slowly unfolds and my career path becomes illuminated... I feel drawn to assist people who are faced with the challenge of navigating life with chronic health issues.

After completing this program (& Guided Care Nursing Certification Exam) I hope to begin preparing for the ANCC National Case Management Certification Exam for RNs.
( http://www.nursecredentialing.org/NurseSpecialties/CaseManagement.aspx )

Continuing Education Interests:

Medicare Guidelines
Environmental Health
Genetics/ Genomics
Geriatrics
Autoimmune Disorders
Acute Porphyria
**

Participating In A Clinical Study

This day last week I went to New York City for the first time in my life.
The anxiety of anticipation and expectation was by far, greater than any anxiety related to the actual experience... although subway navigation during rush hour on a Friday morning when computers are down... well, that was a bit "nerve racking"... especially with twin 7 year old boys prone to impulsive behaviors and high energy levels!

After a 2 hour navigational adventure, I arrived at Mount Sinai ready to participate in a Clinical Study designed to examine the long-term effects of Acute Intermittent Porphyria. I respect research and value evidence-based decision making. I am excited to be a part of the study.
The initial process was pretty standard, involving paperwork...consent review and signature... then a thorough question and answer session. Looking back, my only regret was that I should have eaten better and had more time to transition... I felt more "scatter-brained" than I would prefer but I gave them access to this blog and copies of my medical record... they have a good amount of solid information to start with.
About my "colicky-cranky" AIP...
I explained that significant stress is an unavoidable component of my daily existence. After failed in-vitro attempts we were overjoyed to build our family via international adoption. Unfortunately our ,now 7 year old, twin sons have significant behavioral demands linked to early life challenges. I try to be very careful in managing my lifestyle choices to avoid triggering my AIP... and yet it remains a constant "background music" almost every day of my life. Stress and illness seem to be the triggers I primarily cope with now that I am post-menopausal (2nd to a total hysterectomy in 2008).
The suggested treatment plan is to receive monthly Panhematin infusions as crisis prevention. I agreed.
I haven't started yet...but I fear the risks and the unknown.
Even though my quality of life has been significantly altered...I am familiar with my AIP... I am used to it.
It would be so awesome to regain some vitality... but is it worth the risk of getting a clot and becoming paralysed or getting phlebitis... or, or, or...
Sometimes it is just NOT helpful to be a nurse... my mind races with the "what ifs"...
I will try the infusions... because physically I feel like my body is decomposing daily... more and more toward a place that I really don't want to be.
I will see a Liver Specialist next week (to establish long-term monitoring) and I will set up an appointment with a Thyroid Specialist to deal with my Thyroid issues.
I am so very fatigued both mentally and physically by constant health issues that make me feel terrible... BUT I will continue to try my best to be positive, to be hopeful and to seek solutions.

Life Is Hard

Living the way I feel I should, involves tremendous amounts of selfless giving.
Tonight I feel like I gave my all today and I have nothing left.
I started the day at 6am fasting for some routine blood work and a liver ultra sound... by 8:30am I had completed those tasks and was on-duty at work... drinking instant oatmeal as I juggled multiple issues.
As the day unfolded... human need exploded all over the Emergency Department.
I worked diligently to meet the biopsychosocial needs of my patients and was fairly successful by days end.
I like making a positive difference... it is the gas that keeps my engine running.
There was a time,not so long ago when I was out of work for about a year...
My health presented similar challenges then as it does today... only without the reward of making a positive difference in the lives of others on a daily basis... I became unsure why I existed...without purpose...
Physical endurance and pain continue to challenge me in my desire to maintain a half-time professional career... but I am determined to push through as long as I can.
As a nurse I have the opportunity to see human situations that give me perspective on life...
I am truly blessed in so many ways... so very many people have much, much worse conditions... I remind myself to be grateful when self pity or other unhelpful feelings consume my thoughts.

Enzyme Follow-Up

What about enzyme replacement to treat AIP?
"Porphozym by Zymenex"...

I sent an email to one of the top AIP Specialists in our country asking him this question.
He responded within 24 hours!!!
What a thoughtful person.

His reply basically stated that "Porphozym" was found to be ineffective in clinical trials and was therefore never offered as treatment to the general population.

IV Hematin remains the treatment of choice for AIP.

Colonoscopy

At 9am this morning I was wheeled via stretcher to the procedure room for a colonoscopy.
At 41 years young I had my first colonoscopy 3 years ago because my father struggled with Cancer that began in the colon.

I am glad I went 3 years ago... they found and removed an abnormal area.
I didn't need to return for 3 years!
Now...after today... I am cleared for 5 more years!!!
The Colonoscopy is a great Cancer prevention/ early detection tool that I promote Whole-Heartedly!!

But...
It is a little harder for people with AIP.
My first experience was awful! I was absolutely miserable and stayed unwell over a week!
But...
I didn't know that I had Acute Porphyria back then!

My AIP Colonoscopy Protocol:
1. Schedule the procedure first thing Friday morning (if possible)
2. Take Thursday and Friday off from work (and make sure the weekend is clear of obligations)
3. If I still had a menstrual cycle I would try to schedule the procedure the week or two after menstruation ends
4. I use a "Dulcolax" and "Mirilax" colon "cleanse" process outlined by my Gasteroenterologist
5. The day before the procedure I am only allowed "clear" liquids...so I drank GREAT quantities of blue "Gatorade" to keep my carbohydrates from dipping too much... this also helps in avoiding dehydration
6. I thoroughly went over my AIP diagnosis with the GI doctor and the Anesthesiologist... giving them both printed literature I ordered from "The American Porphyria Foundation"
7. I determined ahead of time which medications I would be receiving and made sure that they were AIP "SAFE"
8. The nurse started an IV infusion of dextrose as soon as I arrived
9. I packed a small meal for after the procedure
10. I went home and rested for the remainder of the day

Look Good = Feel Good

My Porphyria activity/ severity can be clearly gauged by how dark my under eye circles become.
I honestly look like Old "Uncle Fester" from the "Addams Family"!!!
If I am super sick...well it just doesn't matter how I look.
But...
If I can manage to remain actively engaged in life I do my very best to do so.
I try to invest in my appearance... I want to do the best with what I have... It keeps self esteem at a positive end of the spectrum and can lift spirits too!
So...
The dark circles are a real problem!
Hiding them with traditional makeup is impossible...I have tried them all,
I did some research and found a "medical make-up" called "Dermablend"...
I bought the "Quick-Fix Concealer" made for "severe skin flaws"...
It works very well and I don't see "Uncle Fester" when I look in the mirror anymore!!!

Filling In The Gaps

It has been over a month now since my last entry.
Life has been pretty challenging between then and now, but not all bad.
My Porphyria calmed a bit and we traveled to see friends and family...
Being with the ones you love is like food for the soul!

Then after returning home a respiratory virus took over our home and local community.
The curious connection I noted was that as I "cranked up" the juicer with fruits and vegetables I was able to "crank up" my immune system!
I never got the full-blown illness everyone else did, which was great!

However...

As my immune system was going "full tilt" my Auto-Immune Thyroiditis became a big swollen issue of dysfunction... super tired...super weak...severe headaches...no endurance...significant neck/ throat discomfort...then after about a week of this my Liver began to feel irritable and swollen...I began retaining fluid...especially in the abdominal area... Thankfully, I never developed any Porphyria issues this episode.

It appears that when my immune system is turned up...it protects me from illness, but attacks my Thyroid too.
Then my Thyroid in its dysfunctional state forms an "unhealthy relationship" with my already burdened Liver causing increased malfunction.
The "Up Side" to all of this is that as my immune system gears down after the threat of illness is removed... my Thyroid reduces in size and improves functioning.
As the Thyroid improves...so does its "relationship" with my liver...
then my Liver begins to return to baseline... the fluid stops accumulating... and I can re-engage in a semi-normal life...smile!
Some might ask...why didn't you go to the doctor???
I have... thus the complete Thyroid "testing / work-up"..several times.

Diagnosis:
Chronic Auto-Immune Thyroiditis with benign nodules...
intermittent episodes of Hypo-Thyroidism and even occasional Thyroid Storm if manipulated/ palpated (physically touched)

Treatment:
Tried Synthroid...did not tolerate... migraine headaches, increased "storming" (firing erratically... too high...then too low)and a whole-body sensation of being "squeezed"... these issues persisted for about three weeks after discontinuing the medication.

Final Medical Advice:
"Learn to cope with the episodes and monitor Thyroid/ nodules with regular testing"

So...I have been coping with these intermittent episodes for four years now.
My liver function has only been impacted during these "Thyroid Episodes" for about a year now.

My new proactive plan:
I found a Hepatologist and have an initial appointment next month.
I found a Thyroid Specialist and am in the process of setting up a new patient appointment.
I joined a Long Term Clinical Study: Acute Porphyria... my initial appointment is in about three weeks.