PDFMy Journey in Medication Compliance

8/7/2019 PDFMy Journey in Medication Compliance

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A PATIENTS PERSPECTIVE

PAMELA MEADOWS, RN

WILSONS DISEASE PATIENT


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Mosby's Medical Dictionary defines health

behavior as:

An action taken by a person to maintain,

attain, or regain good health and to preventillness.


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Adherence and non-adherence are

Health behaviors. If a person is

non-adherent totheir medication regimen, a behavior

change is required to improve

adherence.


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The Wilson Disease Center for Excellence at

the University of Michigan, lead by Dr. Fred

Askari, states that Compliance can be

difficult particularly for people who do nothave disease symptoms, for people who have

an inability to focus, or for people who have

depression.


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I have experienced all three of

these contributing factors in my

journey of medicationcompliance/adherence.


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APRIL 2001:DIAGNOSED

WITHWILSONSDISEASE

MAY 2001:

WENT ONGALZIN:

ABSOLUTELYCOULD NOTTOLERATE

JUNE 2001:WENT ON GNC

OVER THECOUNTER ZINC

Asymptomatic

ScaredResearched WD;

only wanted to

take zinc

Still

scared;

switched

meds

The beginningof

non-complianceTakingmedication with

prohibited

foods, liquids,other

medications

Omitting a dose

or taking at thewrong time


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2002-2005 NURSINGSCHOOL; ENZYMES

CREEPING UP,DOCTOR SUGGESTINGSYPRINE; INSTEAD, I

SWITCH TO ANOTHEROTC ZINC

2005-2007 STILLPETRIFIED OF SIDE

EFFECTS OF WILSONSDISEASE

MEDICATIONS;REFUSED TO TAKEANYTHING OTHER

THAN ZINC

2007 MOVED TOCOLORADO

GOT NEWHEPATOLOGIST

2007-2009

LIVER ENZYMES DIDNOT IMPROVE

Scared ofside

effects;

didnt

trust MD

Still very scared of side

effects; comorbidities

Personal Stress at

all-time high. Still

afraid of side

effects.

Co-morbidities

worsening.


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AgranulocytosisAlopeciaAnorexia, epigastricpain, nausea,vomiting,diarrheaAplastic anemiaBlurred visionCutaneous maculDegenerative changesof the skin (especiallyof the neck)

Initialhypersensitivity:hives, rash, fever,anaphylaxis,lymphadenopathy

Nephrotic syndromeObliterative bronchitisOptical axial neuritisOral ulcerationsProteinuriaPtosisSerous retinitisThrombocytopenia ortotal aplasiaserpiginosa EPSlesionsGoodpastures

syndromeHypogeusia

HepatotoxicityHyperkeratosisIntrahepaticcholestasisLeukopeniaLichen planusLupus-like reactionMammary hyperplasiaMyasthenic syndromeAgeusiaatrophyDepression of serum

IgA levelsDiplopiaElastosis perforans


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Peers warning about medication side effects:

I dont know if I would let the doctor put me onthat much right away.its awfully risky

The nurse in me. Its true.Sometimes we are our worst enemy.we can

know too much that hinders our owncompliance.

Afraid of the doctors ignorance on managingmy medications.

I did not have a trusting relationship with mydoctor.


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Complexity of medication regimen:

I have several other health issues that requiretaking medications, and taking them a specificway. Several are more than once daily. Severalhave to be on an empty stomach, apart fromfood and other meds. Several have to be withfood. This is very frustrating, and causes meinconvenience, because I have an extremely

Busy life:

I work fulltime, attend graduate school full time,and have several regularly scheduledcommitments outside of these things. I get tiredof taking medications, and trying to take themall correctly.


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Stress

My personal life has been turned upside downin the past two years with a divorce, mydaughter moving 2,000 miles from me,

financial stressors and.

Physical Challenges

My liver and spleen issues; cholecystitis andkidney stone

Severe thyroid issues causing extreme loss ofenergy, loss of concentration, severe muscleaches and short stents of depression

Keeping my diabetes under control


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In early 2009, eight years into my WD

diagnosis, I was at work, and felt funny. I

looked at my colleague and said, I can feel

my spleen. It feels swollen.

I called my specialist, who had scans done

immediately, and sure enough, my liver was

enlarged more and so had my spleen.


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What do I do now? I

broke down and decidedto take a stronger

medicine. Syprine was

the drug of choice.


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Within six months of beginning

Syprine, all of my WD laboratory

tests were normal. Even my liverfunction tests were all

completely normalfor the first

time since my WD diagnosis! Ihad no unpleasant side effects

from Syprine, either.


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I empower myself. While I do value and need clinicians,only I am ultimately responsible for my own health. I stayeducated, and in charge of my own health.

I understand potential impact of diagnosis. Beingasymptomatic, I MUST remember this at all times.

I know the prescribed treatment will help. I know exactly how to take the medication and I realize

this is a life-long treatment.

I am ultimately in charge of making sure my treatmentplan is carried out.

I value the outcome of treatment more than the cost

of the treatment. (Waking up early, being inconvenienced) I find ways to fit medication regimen into my daily routine.

I have a health care provider that I trust and one who trulycares.


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There is usually no single reason for

medication non-adherence, therefore there

can be no one size fits all approach to

improving adherence.

Address the problems and reinforce positive

behaviors. Get regular follow ups. You must

have a trusting relationship with your

provider. Have a support system in place toencourage you.


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Askari, Fred MD. (2009). Wilson Disease

Center for Excellence. University of

Michigan.

http://www.med.umich.edu/gi/wilsonsdisea

se/

Feinberg, Janice L. PharmD, JD (2006). ASCP

Foundation.

Mosby's Medical Dictionary. (2009). 8thedition. Publisher: Elsevier.
http://www.med.umich.edu/gi/wilsonsdisease/http://www.med.umich.edu/gi/wilsonsdisease/http://www.med.umich.edu/gi/wilsonsdisease/http://www.med.umich.edu/gi/wilsonsdisease/

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PDFMy Journey in Medication Compliance