March 19, 2009 will mark the 14th anniversary of my 2nd kidney transplant from my friend/family/sister Lisa. I am fortunate to have someone think that much of me to help me with donation. We had a kidney party the day before at Alma de Cuba Restaurant. All of our Hahnemann friends came to celebrate the 2-Lisas and wish us well. Who has a kidney party? We do. It was so exciting that I would get a 2nd chance to experience life without dialysis.

It was a rough road prior to surgery. My first transplant had failed and I thought it was depression. I went to see my nephrologist (Dr. B) and told him I was feeling down and couldn’t shake it. He prescribed an antidepressant for me and told me that he would call me with my labs. I knew my husband would not be home for a few hours so I drove around to kill some time. Dr. B called me with an urgency in his voice and said, “Do not get that prescription filled, your numbers are high, your kidney has failed, and I need you to come to the hospital as soon as possible for emergency dialysis. My husband always kept me grounded and made me feel safe. There was chronic anemia, Epidermolysis Bullosa Acquista (Angry Blisters). I had blisters develop all over my body and down my throat. I was doing dialysis treatments in Willow Grove and had to get up at 4:00 am for a 5 am treatment. The nurse went to change my dressing and it had adhered to my chest. It was so painful that I asked her to stop. I could tell that she had never seen anything like this before and the looked on her face . I transferred to HUH’s dialysis unit, I went on a Saturday with a neon yellow hoodie and I felt this fullness in my throat.Dr. O, was the doc in the box for the dialysis unit that day. I called out because I had to vomit and he was the only one within earshot, he ran over to me with a large basin and I vomited approximately 500 ml of blood. This man saw a ghost and I was disconnected from the dialysis machine and wheeled with the wind in my hair to the ED. They dropped a nasogastric tube and transferred me to the ICU. I was managed on acyclovir which did not work, I was given Benadryl as well, and had a endoscopy scheduled. My results confirmed the blisters were in my throat, I felt them spontaneously develop in my mouth and it was difficult for me to eat. There were multiple guesses as to what the diagnosis would be, and a skin biopsy was done. There was this medical student that had rotated to labor and delivery, he remembered me and I thought what shenanigans or jokes did I tell. He took a special interest in my case, by now I was on a multiple consulting services: nephrology, dermatology, infectious disease, GI, and to me it was all the ologies. He came every morning and night to make sure I was comfortable, he was the sweetest man. He said right away during rounds that it was EBA and the biopsy confirmed his diagnosis. The treatment was high dose steroids, the blisters stopped and I went into remission.

Meanwhile back at the ranch in the ICU, I was ready to be discharged and asked why I was still there. “Oh, we are waiting for your doctor to order a test.” I knew there was going to be a party with my coworkers and I wanted to get discharged with a hemoglobin of 7. I had lived with anemia most of my life. I called Dr. K, “Hey, why am I still here? They said that you were ordering another test.” He told me that all testing had been done and that he was discharging me. I got up, stripped my bed, called my husband, and the nurse. As a nurse I know that your morbidity and mortality increases with the length of a hospital stay. I called the nurse again and told him that I spoke to my doctor and I have discharge orders. She said there were no orders for discharge, I asked that she looked again and it was there. I wiped down my area dumped the linen from the room, that was the effect of the high-dose steroids. I went to the party, I wanted to be with them even if I was only able to watch the fun.

I was on the mend, taking Epogen shots and Moe my donor, donated blood to me. I continued with outpatient dialysis and would call labor and delivery for ice. I would stop there some days before dialysis and one day Jane was working. She hadn’t seen me and ran over to me and grab my face, hugged me and threw me in a wheelchair and took me to the dialysis center. I could not muster the strength to fight her.

We were given a surgical date of March 19th , we celebrated with a kidney party at Alma De Cuba on March 18th. We were approached by public relations and asked if they could write a story about us. We didn’t mind because it was a beautiful story. Two nurses, same initials, birthday 7 days apart, and labor and delivery nurses. Just a side note, Moe was not the only person that offered to donate their kidney to me. It is special to have that amount of support from your work family.

Donation day: What an exciting day, a friend was giving me a new lease on life to be dialysis free. Our surgeries went well, there was urine in my bag, and I received updates about Moe. All was well and my husband went home. A friend came up to check on both of us while she was working and noticed my urine output had decreased, and I seemed out of it and sleepy. She went to the nurse and the surgeon was called in and I was taken for a biopsy of the kidney. My husband was called back in and I remember sitting in the OR waiting area. The head of the bed was flat and it was difficult for me to breathe so I yelled out that I couldn’t breathe and my friend ran over to me thinking I was in distress. I remember the lights of the operating room and waking up in the ICU intubated. I knew that something went terribly wrong and I asked the anesthesia resident to take the tube out or I was going to pull it out. I wanted my husband called because I needed my Dove soap, it didn’t make sense but imagine waking up in the ICU intubated when your last memory was being in the operating room. I don’t know the reason why I focused on soap, but I continued to argue with Dr. Anesthesia. The staff had thrown my friend out several times but that immediately changed but now they were calling her because the beast in me had awakened.

I was transferred to a surgical step-down floor and I was getting plasmapheresis, steroids, and dialysis. I was there for a month, my hospital room became a shrine adorned with flowers and well wishes. My friend Sharon cooked Easter dinner and make me a shoebox Easter basket. My friends, family, and strangers were checking up on me. Yes, a complete stranger and when I asked who she was, she stated that she was checking on me for a friend. I was making urine and my husband was so excited but I knew I was experiencing oliguria (urine output of 500 ml in a 24 hour period). We stayed prayed up but I knew that due to hemorrhage the perfect kidney from donation was not going to work. One morning Dr. B came into my room and said to me, “Stop treatment the kidney is lost and it needs to come out. Stop letting them do this to you.” I was scheduled for a nephrectomy and the anesthesiologist came to do my preop visit. Dr. K assured me that I she would be taking care of me, she was also a friend. I was taken to the preop areas and Dr. K came in and asked me if I had any questions and if I was okay. I let out the biggest scream and cried in her arms and she consoled me like a mother would do. Nursing administration came to see me and told me not to worry about anything. The story was squashed by hospital relations contacted either one of us about our story. Although the kidney was lost, it was still a beautiful story. My time off had been donated to me by Sharon as she did on several occasions. My husband asked them about my job and they reassured him to focus on me and my job was guaranteed. During one of my dialysis treatments, a patient was place next to me and was given a colonoscopy prep. I was embarrassed for her and it was a horrible smell, a definite appetite killer. After the treatment I wanted to show my husband that I was ready to walk and get weighed, he caught me as I almost fell.

I went home after a month and did my dialysis treatments in center. I was taking prednisone and would have urges to cook. I was also busy and booked for weeks my friends. I spoke with Moe throughout this period and she was so supportive and encouraging to me. My husband was a teacher and was off for the summer. Dr. K asked him to look at one of the home dialysis machines and told him that we should get training to do home-hemodialysis. We trained for 6-weeks and we were taught every possible emergency. It was nice being at home doing my treatments but it was like another job. There was inventory lack of space, setting the machine up, hypotensive episode, intense cramping episodes and time spent on the machine. I was home for almost a year from the start of my hospitalization. I went back to working full-time, did dialysis on my days off, started back with Drexel’s BSN program, and preparing for an obstetrics certification.

I saw Moe and we went into a triage room, I wanted her to see my scars, and she said, “Oh my friend look at what they did to you.” My abdomen looked like railroad tracks in disarray. I was angry and wanted to sue but knew that I would not gain anything because the consents that patients are given states that there could be damage to surrounding areas. I witnessed these consents for patients that I care for. I went to seek psychiatric help, I was experiencing post traumatic syndrome, having vivid dreams. I went to see a psychologist and she was not the right fit for me. She listened to what happened to me and told me that it was really shitty. She explained to me that I was late, not to wear any perfume because of her interstitial cystitis and the charge was $40. She wore a monitor around her neck to help with her therapy, not a known medical therapy, but I digress. (throwing shade). I left

It was time for my transplant evaluation and I had a Ct Scan done, 20 tubes of blood done, and a chest Xray. I received a call that I needed to come in for my results. I knew what that meant so I took a friend with me. He said to me that there was a spot on one of my native kidneys thought to be cancer. The practice is to take the kidney out. My friend jumped off the table, I wanted to know if it was localized and if I had to do chemotherapy. I did not have to do chemo and the cancer was localize, I would have it removed laparoscopically. I am from the Generation X era and it could be a blessing or a curse, I took it as a blessing. My mother always came to me in dreams and in times of crisis I heard her voice telling me that things could always be worse and to fight and so I did.

I attended a monthly multidisciplinary dialysis clinic. The team included Dr. K, dietician, social worker, and the nurse. My labs were discussed, mental health, medications, supplies, insurance, and any questions that I had. Regarding my labs, I would get calls while working in charge that my numbers were high and I needed to go to the ED for admission and treatment. I was working in charge trying to put out fires. I called him and stated that I felt fine and he said if anything changes to call him. His motto is, ‘Don’t treat the numbers, treat the patient.” I had my moments and once I cried in front of the team, Dr. K and the team consoled me. He started asking me to speak with patients that were newly diagnosed with renal failure, transplant, and dialysis. The 1st time I spoke with someone, I had the aha moment that Oprah refers to. “Okay God, so this is what I was meant to do? So it shall be done.”It felt cathartic to me to help someone that could learn from my experiences. Every time I came to clinic or to Dr. K’s office he would ask, “Hey Buddy, can you speak with a patient, I have a med student , fellow or nurse practitioner and would you mind having them do your assessment. I worked at a learning institution so this was routine to me. He wanted them to hear my story, everyone has an idea in their head of what a dialysis patient should look like. They were always grateful to hear my story.

I tell this story hoping to inspire someone dealing with life’s difficulties or chronic illness of any nature. These principles are applicable to any situation. *Obtain knowledge about your disease, own it: It aids in asking questions when seeing your doctor. Google is not a substitute for a doctor and can be insulting. *Identify your support system: Even if it’s a support group and/or me. Helping others is my life’s purpose. *It’s okay not to be okay: Sometimes you need to vent, cry, and not have an answer.

There will be storms but the sun also comes out again. Keep being a warrior and fight! Find your tribe. Thanks Moe

Lisa Myers MSN RNC CSN