Stephanie Grooms – Kentucky Organ Donor Affiliates (KODA)

Duanne- Kidney Pancreas recipient

Life has diverse meaning for everyone, but when you experience life from a different perspective, it takes on an exceptional meaning. You see, I developed Type 1 diabetes at the age of five. I was totally dependent on insulin, taking two shots a day as well as trying to control it with my diet. I was no different than any other kid, I just had to take medicine an accepted part of my life. However, it was different when I was at a birthday party and could not have cake or had to pass up sweets while at school or any other place for that matter. It was just my way of life that I was accustomed to. I had a very productive childhood participating in sports throughout school, even college. In 1993, at the age of 28, I developed kidney disease. After two years and the long-time effects, my diabetic specialist asked if I would consider a kidney and pancreas transplant? The University of Kentucky had just gotten a new renowned transplant specialist. I agreed with apprehension and had a consultation. I was evaluated for an entire year, checking various systems repeatedly. In February 1996, I went on the transplant list. This was a time before cell phones so I was given a pager in case of that faithful page and had to be within two hours range of the hospital. That meant not going on vacations or attending events more than two-hours away. On April 7, 1996, on my birthday, I had to be dialysis for the first time. This took place three times a week for four hours each time at Pikeville Medical Center by Dr. Bhagrath. This went on for six months. I only missed two days of work while enduring the process. I refused to let it get me down and continued on with my life playing golf and refereeing football. I was determined to live a normal life. I was paged three different times with the third being the charm. On September 21, 1996 I had a double transplant; kidney and pancreas. The surgery took 10 hours by Dr. Ranjan and Dr. Wade of University of Kentucky Hospital. I was in ICU for one week and remained in the hospital for another three weeks for a total of a month. My pancreas started working immediately, but it took two weeks for my body to accept the kidney. After leaving the hospital, I had to stay in close proximity. I rented an apartment for a month while going to the hospital daily to check for rejection and adjust my immune and rejection medications. I will never forget my fight for life. I can particularly remember this one revisit to the doctor when I asked what my diet will be. He looked at me and smiles and says “no diet of any kind because you are no longer a diabetic”. Wow! After being a diabetic for 30+ years, I finally got to eat sweets J I [...]

By Stephanie Grooms|2019-04-04T14:55:00+00:00April 4th, 2019|Pike|0 Comments

Betty-Living Donor

This was almost a forty year long wish. It started back in the early 70’s, when I was a Patient Aide at a hospital on the Urology and General Surgery floor. I took care of men having prostate surgery, gallbladder and hernia patients, ‘open and close’ surgeries, which meant they were full of cancer. Back then, before CAT and PET scans, and MRI’s were not around, things were harder on people. Gallbladder surgery involved a minimum two-week hospital stay. Poor prostate guys were there about the same time. The cancer people? We had to check charts VERY carefully, because more often than not, the patient was not told the diagnosis. That’s a whole ‘nother story. But the patients who got to me were the kidney patients. I discovered that kidney disease affected a wide range of people; and had nothing to do with lifestyle choices. They became friends, because of frequent hospitalizations. The goal was always to get their function up to 13%, because then, no dialysis. They were mostly limited to drinking less than 12 ounces of liquid daily. Salt? Potassium? HA! So, they ate bland food, were always thirsty, had to protect the arm that the dialysis port was in, and spend a lot of time in the hospital. I remember one of my favorite patients, a fourteen-year-old girl tell me that since she only had to pee once every two or three days, that she never worried about lines for the bathroom. I ached at the unfairness of it all. That was when I decided to give up a kidney. Now, my life went on, I married, had kids, gained weight, got divorced, gained more weight…and still thought about people imprisoned by their feckless disease. In March of 2009, I was utterly ashamed that I gave up my own health by my poor eating habits, so underwent weight loss surgery. And one year and over 100 pounds later, I celebrated my ‘new’ self. I was healthy again! Normal blood levels, no sleep apnea, so much more energy! A miracle of modern science. And yet… I was healthy thanks to admittedly a severe and radical surgical procedure. I started to research donating a kidney. The process was a lot easier, and more successful than back in the 70’s. I would only be in the hospital overnight. It wouldn’t cost me a penny. I would save someone. Oh, there were hurdles, and processes, and tests, and more tests, and visiting more types of professionals that I ever had. They wanted to make sure that I: 1) Wasn’t coerced 2) Wasn’t crazy. I remember the day at the NYC hospital going from test to test, pretty much the same time as a tall Hasidic Jewish man accompanied by his Rabbi. I wanted so badly to talk to him, compare notes- who was he wanting to donate to? Why did he decide? But here I was with my painted toenails and flip flops, tan from the Arizona sun, baggy shorts and [...]

By Stephanie Grooms|2019-02-06T15:58:54+00:00February 6th, 2019|Jefferson|0 Comments

Natalie- 3 time liver recipient

I have been fortunate enough to receive the gift of life three times, once from my father as a living donor, and twice from deceased organ donors. I have been blessed with 22 wonderful additional years of life and would very much enjoy sharing my story with others to assist in getting others to be willing participants in sharing life with others that are in great need of a gift to survive. My transplant anniversary is November 12, also my older sister's birthday. I feel like I have been called to share my experience to positively affect others. Please donate to assist others to live on and continue to do good works to help others.

By Stephanie Grooms|2019-02-04T11:22:40+00:00February 4th, 2019|Graves|0 Comments

Leslie-Respiratory Therapist and Organ and Tissue Donation Advocate

I have been in healthcare for over 16 years. 14 of those I have worked bedside at a level II trauma center as a registered respiratory therapist. I have always been a huge supporter of the organ donation process. I have seen it bring a feeling of purpose and fulfillment in the most dire of situations. I have also always been very active in the cystic fibrosis community. I have watched my patients/friends die from lack of organ donors but I have seem them thrive as well after a donation. Education about donation is the key to this whole process.

By Stephanie Grooms|2019-02-04T08:53:05+00:00February 4th, 2019|Lawrence County, Ohio State|0 Comments

Steve- Lung Recipient

In the summer of 2010, I contracted a case of pneumonia. The main symptom that I was experiencing was a persistent cough that just would not go away and breathlessness on what seemed like very little exertion. I made an appointment with my primary care physician, Dr. Ajit Nanda and, after examining me, he prescribed an antibiotic which seemed to cure the pneumonia, but I noticed that I still became breathless with very little exertion. I mentioned my shortness of breath to Dr. Nanda a few weeks later and he ordered a chest x-ray. In the image, he noticed cloudiness in both lungs, indicating generalized inflammation. He then ordered a computerized tomography (CT) scan which was performed at Hardin Memorial Hospital on August 3, 2010. The resulting report indicated “ground glass opacity in both lung bases” which may be indicative of chronic lung disease. Dr. Nanda referred me to Dr. Jose Mendieta, a pulmonologist in Louisville. A second, high resolution CT scan was ordered and performed on August 26, 2010. The technician reported “moderate interstitial lung disease noted throughout both lung fields.” After reviewing both CT scans, Dr. Mendieta indicated that I had a non-specific interstitial lung condition, but he did not give me any specific instructions regarding the condition. He did not make my condition sound very serious, so again I brushed it off as age and being overweight. Since I was not in any real distress, I did not give the information much thought and went on with my business pretty much as usual. No mention of the possibility of IPF resulted from either the tests or office visits. At this time I was having very little difficulties getting around and doing pretty much whatever I wanted to. While I was having some difficulties with dyspepsia, it still seemed as if my difficulties were merely the result of age and weight. Perhaps, that was just wishful thinking on my part. Sometime in early 2011, I had another bout with pneumonia, but again Dr. Nanda prescribed antibiotics that seemed to correct the problem. The CT scan image taken on March 29, 2011 shows the damage in the lower lobes of both of my lungs as compared with the scan taken seven months earlier. The report from the CT scan indicated that no progress of the interstitial lung disease was noted and there was no new enlargement of lymph nodes (adenopathy). As with the previous reports, neither I nor Dr. Nanda had any real concern about the report, since I was not having any specific difficulties. In April 2013, I mentioned my increased difficulties with what seemed like ordinary activities to Dr. Nanada. He ordered another CT scan, performed on April 17, 2013. After reviewing that scan, he suggested that my condition might be IPF. He referred me to Dr. Tim Killeen, a pulmonologist in Louisville, KY. During that appointment, I completed my first six minute walk test, which “… measures the distance that a patient can quickly walk on [...]

By Stephanie Grooms|2019-02-04T08:39:22+00:00February 4th, 2019|Hardin|0 Comments

Donna-Liver Recipient

Donna J. Bias Liver Recipient – 09/11/1994 My transplant story began when I had severe itching all over my body. I had spent hundreds of dollars on creams, gels and Benadryl but nothing helped. One weekend the itching was so bad that I decided to go to a walk-in clinic. They didn't have a diagnosis and told me to see a dermatologist. Instead, I went to see my regular medical doctor. I explained my problem, and he took one look at me, and said you are going to the hospital. At the exam, he noticed my eyes were yellow and suggested a gallbladder problem or a blocked bile duct. Right away, lab results showed elevated liver numbers. That same week, a liver biopsy confirmed Primary Biliary Cirrhosis. There is no known cause or cure for this disease except for a transplant. I had never heard of a liver transplant and knew very little about organ donation. A specialist was called in, and on my 25th wedding anniversary in 1991, he told me I had approximately two years to live. What a shock since I didn't even know I was sick and never drank alcohol or used non-prescription drugs. During the three years I waited for a liver transplant, I had bloodwork every week and transfusions due to the platelets being eaten up in the spleen. My spleen became the size of a football. The severe itching continued due to the liver being unable to filter out the bile. Just wearing clothes made the itching unbearable. There was fatigue like you can't imagine and I wanted to stay in bed 24 hours a day. At that time, there was little awareness about organ donation. So for three years, we made the five-hour, one-way trips nearly every other month to the transplant center in Pittsburgh. During the Labor Day weekend in 1994, I was admitted to the hospital in Pittsburgh for testing on another problem. While there, they did triple the number of liver transplants due to the holiday travel accidents, but there was no liver for me. Either it was not my size, blood type or the fact that others needed the transplant more than me. A few days later, I was told I was a back-up for a liver. If the person was too ill to have the transplant, I would be next in line. Fortunately for that person, he or she became well enough for the transplant. Then I was told another liver was on its way, but again someone else needed it more than I did. Finally, the third time is a charm (or was it?)! The liver had been lacerated during the removal process, but since it was a large liver and just the one I needed, my surgeon decided to repair it the best he could. The transplant went well except for some bleeding problems due to the lacerations. There has been no further treatment to the liver since that time 24 years ago! Words cannot [...]

By Stephanie Grooms|2019-01-03T08:35:24+00:00January 3rd, 2019|Cabell County, West Virginia|0 Comments

Joy- Liver Recipient

I was born and raised in Cabell County, W.Va., and other than living many years ago for 3 ½ years in Texas I have lived the rest of my life in the Huntington area. My story never gets old for me but at times when I look back now some of it seems very surreal and I wonder how in the world I got through some of the terribly painful times. There is no question in my mind it was my faith that gave me the strength. Faith is not believing God can, Faith is knowing that God will, and for me I can finish it by saying that He did. In 1994 through a routine blood test I found that I had PBC, Primary Biliary Cirrhosis. I am sure most if not all of you know that PBC is an autoimmune disease which strikes mostly middle aged ladies. I was 46 at the time. PBC is a slow progressing disease that really doesn’t have any symptoms to begin with. The doctor prescribed Actigall, a bile acid, and just watched as my numbers grew. It took about 9 years for me to get to the place where it was evident that I would need a liver transplant. The symptoms that had slowly developed were losing weight and less energy, though if you had known me then you were never have guessed it. I was always a person who would rather burnout than rust out so I never slowed down, but I didn’t know how bad I felt until after my transplant when I actually felt good again. My skin began to change colors. It wasn’t just yellow but it looked like a very ugly colored tan. And then there was the itching. It was the most difficult of all the symptoms for me to handle. The doctor gave me benadryl and atarax but there was no relief. Can you imagine itching all over your body, inside and out, places you couldn’t reach? It was worse than any of the pain I had experienced. There were times I would hold my hands under scalding water because the burn felt better than the itch. Pain is usually localized but the itching was everywhere. However, even with all this I was still very Blessed. I didn’t experience the high ammonia levels many experience and they warned us about, though I felt my mind was a little cloudy at times. But my disease had progressed to the stage of needing a transplant. I was referred by my Doctor and personal friend Dr. Florencio Neri of Princeton to Dr. Matulis (a gastro doc) in Charleston. He set up an evaluation for me at the Starzl Institute at UPMC in Pittsburgh. I started the process in January 2005 of having all of the testing done (which was extensive). I traveled to Pittsburgh a couple times for them to complete all the tests. Then on Feb. 3 I got the call. "Mrs. Bryant we are putting you [...]

By Stephanie Grooms|2019-01-03T08:29:46+00:00January 3rd, 2019|Cabell County, West Virginia|0 Comments

Mickey-Kidney Recipient

Little describes better my appreciation for organ donation, its proponents, and families who make it possible than a letter I composed shortly after my kidney transplant. The purpose of the letter was to express my gratitude to the family of a young woman whose death nearly three years ago made available to me the incredible gift of life. My thanks to Kentucky Organ Donor Affiliates for offering me this opportunity to share with others the personal significance of the goodness and unselfishness of that family. Dear Kidney Donor Family: I write to express my profound gratitude for the life-changing gift that your generosity and thoughtfulness has provided. The kidney transplant has given me a second chance to experience a normal life, free of the rigors of hemodialysis. My wife and twin sons also want you to know how grateful they are. For 20 long months, I awoke at 4 a.m. three days a week to prepare for my 5:30 a.m. dialysis sessions. The sessions were exhausting and challenging, and appeared to be never-ending. Your gift brought that to a conclusion. I realize that because of the passing of your loved one, the transplant was made possible. And I know your loss is of a magnitude that few of us can comprehend. Please know that because of the transplant and your gracious gesture, another life was prolonged and possibly saved. Again, thank you. One of the things I hope to resume as a result of the transplant is my passion for writing. I spent more than 33 years as a reporter, editor and general manager for daily newspapers in the Midwest and South, before chronic kidney disease and kidney cancer forced me into early retirement nearly three years ago. I simply lost my energy and my drive to write after I became ill. I already am experiencing a renewed desire to get back to the keyboard. The kidney started working almost immediately, and it and I seem to be adjusting well to one another. I promise to take care of it. I’d like you to know, too, that the transplant team at Charleston Area Medical Center respected your privacy, and protected your anonymity. I was advised only that the kidney came from a young woman. The transplant team is excellent and works extremely hard to make certain the patients in its care do everything to nurture and protect the precious gifts they receive. Please let me thank you once again for helping me return to a life that I wasn’t sure I would ever see again. It is truly a miracle. With great affection and sincere regard, Mickey Johnson

By Stephanie Grooms|2019-01-03T08:18:55+00:00January 3rd, 2019|Cabell County, West Virginia|0 Comments

Craig-Tissue Donor

Early in our married life, my husband Craig and I became organ donors by signing the back of our driver's license. We never questioned our decisions. We were fortunate to share 39 years of marriage. Craig was diagnosed with stage 3 cancer in 2008, We had many discussions about end of life wishes before surgeries and treatments and organ donation remained a constant. He suffered a cancer related stroke in 2015, but remained strong in his resolve to enjoy life as a cancer and stroke survivor. At 6'6" tall, it seemed this larger than life husband, father, and grandfather was invincible, but he suffered a massive pulmonary embolism in November 2016. Given his health history I had no idea whether he could still be an organ donor. I asked about this possibility with a compassionate KODA employee. That night in the ER I gave permission for his corneas to become a gift of sight, as well as other bone, skin or tissues. In the weeks following, one of the most meaningful gifts our family received was the medal and certificate from KODA. Even more precious was the letter from the Kentucky Eye Bank sharing the news that both corneas were successfully transplanted into 2 grandmothers in central Kentucky. While we were still reeling from the shock of his death and many dark days, this news became a bright spot. Eleven months later I was surprised to receive an invitation to the annual organ donor ceremony. What an incredible and emotional experience! With quilt square, photo, and memorabilia in hand, my youngest son and mother in law attended the ceremony. I will never forget the sight of the quilts, the courage and compassion of donor family members that welcomed us and shared a bit of their stories. Each activity and speaker wrapped us in love and gratitude for the decision Craig had made. Looking around the room of 200+ family members, I wondered what their donor story was. Every face represented courage, love, and selflessness. While Craig will always live on in the hearts of his family and friends, there is added comfort and joy knowing that he physically lives on in the cornea recipients. This quote says all that my family and I feel about organ donation: "Be someone's miracle. Check the box. Be a hero. Be an organ donor."

By Stephanie Grooms|2018-11-29T12:43:39+00:00November 29th, 2018|Jefferson|0 Comments

Jennifer-donated a kidney to her son, Tyson

My 18 year old son, Tyson, was diagnosed in February 2018 with IgA Nephropathy. His blood pressure was elevated during and after a minor surgery in January. He’s doctor ran blood tests and we were sent to Norton Children’s in Louisville. There it was determined through a kidney biopsy that it was indeed IgA. His health progressively worsened, and by May he was starting home peritoneal dialysis nightly. In June he was hospitalized after having 2 seizures due to his high blood pressure. We were told he would need a kidney transplant. He was placed on the national registry and I was being vetted and tested as a potential donor. We received word September 5 I was eligible for donation, and on October 9, at Norton Children’s, I gave him his second chance at life. He’s a very athletic kid, who plays soccer for a traveling club as well as his high school. He missed the spring season with his club, and his senior season with his high school team. He’s been told he’ll be able to practice and play this coming spring with his club. He will graduate with honors May 2019 from McCracken County High School. He has applied to and has been accepted to five different Kentucky universities, and has chosen University of Kentucky. He will major in Biology with hopes of attending dental school and becoming and orthodontist. He has never once asked “why me?”. He’s never refused his medicine or a dialysis treatment. Even on his worst days prior to transplant, he went to school or work (yes, he even has a part time job) and tried his hardest to get through the day. Since he’s been home from the transplant, he’s starting to go back to the kid he was before he became sick-smiling, whistling and singing around the house, teasing his little sister, and hanging out with friends. Tyson on his first day back to school, post-transplant His first day back at school is today (11/26) and he even drove himself to school. I never imagined my family would be on the receiving end of an organ donation. We (myself, my husband, and our three children) are all registered donors, and I just felt that when my time was over, my organs and tissue would be recovered and life would go on for others. I never imagined us ever having to rely on another person’s selflessness to save one of my children. I carried my phone everywhere and we made plans and back up plans in case we got the call saying there was a kidney before all my testing was complete. I can’t imagine the pain and frustration of the ones who have been waiting for years on the registry. Tyson’s story has been on our local news and in the newspaper, as well as a couple social media outlets. I truly hope someone read or saw his story and it helped sway him/her into becoming a donor. I [...]

By Stephanie Grooms|2018-11-26T11:35:17+00:00November 26th, 2018|McCracken|0 Comments

About Stephanie Grooms