In times of tragedy, I found solace in helping others and taking each day as it comes. The journey may be arduous, but I persevered, holding onto hope that tomorrow would bring a brighter day.
https://www.instagram.com/reel/C20tYS0uoBh/?igsh=Z3RpcjNpb3M0MXN1
The short answer is no. As a patient, whether you’re on dialysis or post-transplant, you assume new roles as your own advocate, pharmacist, organizer of appointments, and your labs. It’s your job to know about all aspects of your health. You may be seeing multiple specialists. It becomes a part or full-time job and allows you to detect abnormalities and notify your team.
Taking medications can have side effects, but it’s better to have them monitored by doctors than needing dialysis. After my third transplant four years ago, I experienced Type II diabetes, Covid with pneumonia, hair loss, and an autoimmune skin disorder. Patient portals are incredibly useful for managing your health and medical care.
A woman’s hair is her crown, and promises of growth are a billion-dollar business. I have spent a lot of money chasing the dream of maintaining my tresses. However, I started losing my hair, and it became noticeable to others. With every click and like on various media outlets, an overwhelming amount of targeted ads flooded my feeds. My likes ranged from vitamins for hair growth to hair products, wigs, and weaves. After considering all the options, I decided to go for a haircut. What a relief!❤️
#shehad3 #she.had3 #shehad3k #medication #organization #selfadvocacy #nurse #grace #therapy #transplant #warrior #faith #strength #mystory #health #journey #family #medicine #resilience #expert #sideeffects #consistent #chronicillness #livestrong #informed #prednisone #tacrolimus #type2diabetes #helpingothers #tellyourstory #doctors #multidisciplinary #blogger #writer #mindset #responsibility #patient #aimtoinspire #yourtruth #bookcoming
L.Myers MSN RNC CSN
My doctor calls me Buddy, when he calls it’s from a blocked number but I know it’s him. “Hey Buddy, I need a favor. “I have a patient with 30% kidney function requesting to speak with another patient about their experiences with dialysis and transplant. Could you speak with him about the modes of dialysis? He’s a doctor and he’s really nervous. I always think it’s better coming from someone who’s been through it”. I will always do this for anyone, I know what it’s like to receive a diagnosis of renal failure and all that comes along with it.
I called and addressed him by his title and told him who I was. He stated that it was fine to be on a first-name basis. He asked about my experiences with dialysis, specifically the time it takes, different modes, and transplants. We spoke for 30-45 minutes and he asked if I was married. I said yes, he asked if my husband would mind if we spoke from time to time and I replied no he would not mind. Then he said, “Would you mind checking on me every once in a while? I’m married but my wife is having medical issues. I’ll need a caretaker and this may be too much for her, my son will be moving back to help me. He is doubtful about his eligibility for a transplant because he is 75. I advised him to make 2 appointments for listing, one in his state and the other out of state at a major hospital with the rate of success with renal transplants.
Age can be a factor to be a candidate for transplant. Other factors include the length of time on dialysis, and other comorbidities (cancer, obesity, infection, obesity, smoking). It’s always best to speak with your nephrology team.
“At the end, it’s not about what you have or even what you’ve accomplished. It’s about who you’ve lifted up, who you’ve made better. It’s about what you’ve given back.” Denzel Washington
#blogger #shehad3 #nursetopatient #health #happiness #giveback #inspiration #mindset #coping #helpingothers #positivity #strength #resilience #kidneydisease #kidney #kidneytransplant #health #journey #nurse #patient #chronicillness #informed
I was living my life on dialysis achieving my goals. I was referred by my Doc to get listed at a 2nd hospital, I got listed at Our Lady of Lourdes. Getting listed is an involved process, there has to be a referral from your doctor, a meeting with the surgeon, nephrologist, nurse coordinator, social worker, dietician, and financial coordinator, and the lab drawing of approximately 25 tubes of blood for matching.
https://www.kidney.org/transplantation/transaction/waitingresources
I instantly felt a good feeling with everyone I met, especially the surgeon. He had a glow and a great smile and stated that they could help me, even with a PRA level of 100%. The team confirmed what I suspected, I did not lose the kidney to rejection, and I cried. I knew in my heart what happened. The meeting was about 2 hours and it was to determine if I had adequate support, was psychologically stable, and where the kidney would be placed. After the interview, I was asked if I had any questions. I wanted to know if the search would be in the tri-state area and if could I be officially listed after finishing my Master’s Degree in Nursing Education. They stated that they would make me inactive until graduation and that I would be nationally listed by UNOS (The United Network for Organ Sharing). I had been on dialysis for 10 years and had a routine of dialyzing on off days from work. I hadn’t urinated and I made a perfect dinner date with my friends. I would sit against the wall because I didn’t have to go. I have a strong support system and great people in my life.
My husband is God-sent. He went through everything and was willing to donate a kidney to me because he was a match but when I had my 1st & 2nd kidney transplants, I had developed antibodies against him. Both of us ever thought about it, of course, it was a big disappointment but my husband went ballistic on the coordinator of the 1st transplant team. I also thought counseling could have been better, but I accepted it. I always wanted to move on to the next step in my life. The caregiver is often forgotten about, my Ty was always trying to make me better. He had a grueling schedule, he was up at 4:30 am, feed the cat/litter box, set the machine up, picked our granddaughter up took her to and from school, tutored her, and came home to help me get on the machine while completing his lesson plans, get food for us, take vital signs, and occasionally troubleshooting with me when there were problems. He was nodding out at 7:30 pm and sometimes we were up until 10-11:30.
I finished my degree and started clinical studies at the place I worked. It was an awesome experience and I received a great evaluation from the students and my director from Drexel. I was actually full-time with all my commitments. I worked part-time in labor and delivery, participated in hospital committees, and education, and worked as an adjunct professor. I decided to take the winter semester off to relax.
I was on a non-dialysis day and my husband and I were relaxing. I received a phone call around 4:00 pm from the transplant coordinator on February 20, 2019. “Hey Lisa, we may have a kidney, you are #2 it would be a backup call if the 1st person doesn’t meet the requirements. Stick close to your phone.” We looked at each other smiling, thinking what this could mean but still apprehensive. Then I received a 2nd call at 5:00 pm, “Lisa, we need you to do a dialysis treatment.” My heart was jumping out of my chest, could this be happening? I called my nephrologist to let him know what was happening. He said, “That’s great buddy, keep me in the loop.” We went to bed, and I thought it was not meant to be but I was still happy about receiving a call since I hadn’t received any notifications in years. My phone rang at 2:00 AM in the morning, “Lisa the kidney is yours, we need you at the hospital at 8:00 am.” We were so excited for the future but I thought about my previous transplant and how I woke up in the ICU losing the kidney from hemorrhage. We were not in a position to drive, so we took an Uber to Our Lady of Lourdes. From the moment we hit the door, it was a positive experience and it started with hospital registration. We were taken to the room and I was seen by everyone, there was an IV attempt, and they apologized and stated that it could be done in the operating room. I called my family and friends, it was a big deal, to say the least. The social worker showed up and said I already know your history and Tyrone can stay with you as long as he needs and the hospital will provide meals and parking for him. She took all the worrying away and was so personable with us.
The anesthesiologist arrived, he told me how my pain would be managed and then I said my goodbyes with tears. I had been down this road before. As I was rolled into the operating room, tears started rolling down my face. My friends reassured me and Ty always did this thing with me to help me relax. He would let me feel a tensed hand and then he relaxed it and told me to go to the beach in my head and pray. As soon as I got in the room, my anxiety increased. There were 2 teams, 2 instrument tables, and a cooler labeled and I knew it was the kidney. The anesthesiologist told me that everything was going to be fine and that all the people in the room were for me. The surgeon came over, he looked like an angel; he smiled at me and told me that the kidney was perfect. He had a great spirit and glow about him and I knew God was there.
I woke up in the ICU with my husband at my side and Mark the nurse, he was constantly doing something with numbers and urine, yes URINE. I loved that his name was biblical. When I saw the urine and my numbers on the screen I relaxed and fell asleep. Little did I know a friend called the nurse to tell him what happened to me the last time and to take good care of me and he assured her that he would. My husband was so excited to see the urine and that everything was going as planned, it was his kidney too. I thank God and all the people in my life that supported me throughout this journey. I could imagine God saying, who is this Lisa she has so many people praying for her. Thank you God for giving me my life back and watching my husband sleep peacefully.
“Look for the helpers.” Mr. Rogers I love you Ty♥️
#blessed #blogger #shehad3 #nursetopatient #3rdtimesacharm #caregivers #love #marriage #dedicatedhusband #educator #goals #health #happiness #youarestrong #giftoflife #unos #dreamteam #newlife #kidneyevaluation # thecall #thematch
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
#God #faith #faithoverfear #blogger #shehad3 #giveback #inspiration #michaeljfox #mindset #fighter #mystory #coping #livestrong #positivity #strength #resilience #kidneydisease #warrior #strength #kidney #kidneytransplant #health #journey #nurse #patient #medication #expert #sideeffects #consistent #chronicillness #livestrong #informed #trichodysplasiaspinulosa #epidermylosisbullosaaquista
https://www.instagram.com/she.had3/ 