From Nurse to Patient: L. Myers MSN RNC CSN

People that know my story will tell me that I’m the strongest person that they know. My strength comes from God, family, and friends. Also by gaining knowledge from my doctor(s), credible sources, and pharmacists. As a nurse, I knew basic information but I’ve gained immeasurable knowledge as a patient. When you are researching it empowers you and in the words of Michael J. Fox, makes an expert of you. He is inspirational to me and I’ve watched him on television shows and in movies. It was sad to see him as a 29-year-old man with a diagnosis of Progressive Parkinson’s Disease. He has turned his disease into a cause by raising millions of dollars and has a great support system. https://www.cbsnews.com/news/michael-j-fox-parkinsons-diagnosis-7-years-of-denial-i-only-knew-that-it-would-get-worse/

When you have a chronic condition it’s important that you have documentation of each medication and the times they are taken. With modern technology, your doctor can print out a list with a schedule. I have my list in the notes section of my smartphone and alarms set for every day at 9:00 AM, 3:00 PM, and 9:00 PM. Post-transplant, the immunosuppressive drugs along with your other medications can cause side effects and it’s easy to contract diseases. 

I have had autoimmune skin disorders Epidermolysis bullosa acquisita (EBA) – a blistering disease, vasculitis from Rapamune with my 1st kidney transplant, Trichodysplasia Spinulosa post 3rd transplant, and recently Lichens Planus attributed to Furosemide. It’s so important to be in tune with your body so that you recognize the abnormal. Be consistent with your care and try to stay within the same system so that all specialists are able to communicate. If it’s not possible, ask for a copy of the visit or go to the patient portal for the information so that it’s immediately available for appointments and emergency department visits. ꕤ

List of Resources and Information ☼ https://eatspeakthink.com/31-creative-ways-to-take-your-medication/ https://rarediseases.info.nih.gov/diseases/6360/epidermolysis-bullosa-acquisita https://journals.lww.com/transplantjournal/Fulltext/2002/09150/Sirolimus_induced_leukocytoclastic_vasculitis.25.aspx https://www.bad.org.uk/pils/oral-lichen-planus/ https://www.mdedge.com/dermatology/article/254201/hair-nails/facial-follicular-spicules-rare-cutaneous-presentation https://www.uptodate.com/contents/dialysis-or-kidney-transplantation-which-is-right-for-me-beyond-the-basics https://www.kidney.org

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