“If I can get a message to anyone needing a kidney, I would tell them make sure you go to the Transplant Center that is the best. I would tell them to go to Saint Barnabas!”
The following is a story written by Rosemarie about her experience with the Renal and Pancreas Transplant Division at Saint Barnabas Medical Center:
Eleven years on Kidney Dialysis, two brushes with death, tens of trips to the ER, numerous surgeries, trips to the Cath-Lab, infections, two failed fistulas and little or no hope of ever getting a kidney transplant, I finally received, what I believe, was a miracle transplant in October 2018 at Saint Barnabas Medical Center. Here’s my story.
I was diagnosed at 16 years old with polycystic kidney disease or PKD. It’s a hereditary disease that I inherited from my father, who passed away when I was three years old at the age of 36. My older brother also inherited this disease.
I was lucky. Although I was diagnosed at a young age, I was able to live a normal, active life into my mid-forties, raising two children and doing all the things that most busy parents do. My brother, Sam, was also lucky to live a normal life until his late forties, when he finally had to go on dialysis. It was a tough time for him and his family. I couldn’t help but think what was in store for myself. Will I survive this disease? Will I see my children get married? Will I get to know and love my grandchildren? I was horrified!
After two years on dialysis, our brother Bart donated his kidney to Sam, who received a successful transplant at Saint Barnabas Medical Center. It was truly amazing! I had hope for myself.
As I approached 45 years old, my creatine levels were getting really high and I knew It wouldn’t be long before I would be on dialysis. My nephrologist recommended I put my name on the donor list and start looking for potential donors. My brother told me to call his doctor and go through Saint Barnabas but I didn’t listen. I waited until almost the last minute and registered with a different transplant center.
My brother was doing well after receiving his transplant, but passed away suddenly after five years, at the age of 54. My brother, my friend and the only person who understood what I was going through and who could help me navigate through all this, was now gone. I felt alone!
In the summer of 2007, I found myself gaining weight, being tired and out of breath. I was getting sick and not realizing it. In October, I had to be rushed to the hospital to be dialyzed. What a shock! I was not ready for this! Because of my stubbornness, I was not prepared physically or emotionally. I had no fistula. I had to get a perma-cath inserted into my chest. Thankfully, I was alive, feeling better and trying to live a normal life on dialysis, three days a week.
I had that perma-cath almost a year before I received my first fistula, but it never worked as intended from day one. There was often a clog that would send me from the dialysis center to the hospital ER, then to the cath lab for a fistulagram/fistulaplasty. If I was lucky, I would go to dialysis and be done until the next time it clogged. I can’t tell you how many times I went through this cycle and how many times I had to get a perma-cath installed when the fistula needed a rest. It really sucked! Not only was I sad and depressed, but my family was suffering along with me. I’m a very positive person, but it’s not easy to put a happy face on when your suffering every day, and knowing that my family was also suffering made it worse. Luckily, I had a strong support system at home. It really helped me get through this.
I did this for two years until I learned of peritoneal dialysis, a method of dialysis that could be done at home. In November 2009, I had a peritoneal catheter surgically inserted in my abdomen and my husband and I were trained on this tedious process. I was hopeful! No more getting up at 5AM to go to dialysis. I could do this at night while I sleep. I could go on vacation without having to schedule dialysis out of state.
2010 was a great year! I did not have to go to the ER once, and was starting to enjoy my life again.
Around that time, my boss offered to donate her kidney to me. She was tested and was found to be a match, but unfortunately, I was told that I was a highly-sensitized patient with an abnormally high level of antibodies and my chances of getting a transplant were low to none. I was devastated.
My streak of 18 months with no trips to the ER came to an end in June 2011. I was having severe pains in my abdomen. I had an intestinal blockage. My peritoneal catheter somehow got hung up in my intestines and I suffered a blockage and a subsequent perforation in my small bowel intestine. I had peritonitis. I had to have an emergency surgery to resect the damaged intestine and clear the blockage. I was in the hospital all summer with a suction tube in my nose down into my stomach. I could not eat anything. I was in the hospital until September, lost over 35 pounds and had to undergo physical therapy to gain back strength and balance. It was horrible. But I survived!
I was told it would be another year before I could tolerate any type of a lengthy surgery. My transplant surgeon told me I was at the top of the list now and he would get me a transplant. But in April 2012, the transplant program was suspended. Five years of hell and now this! I was devastated. My husband told me to register at Saint Barnabas, but I was scared and reluctant to do so.
To make matters worse, my heart was getting weaker. My blood pressure would drop so low during dialysis that they would have to keep shutting off the machine. Many times they could not even measure my pressure. I had to go on a longer cycle and take meds to keep my pressure up. I had to start going to dialysis through the night. I didn’t want to do it, but I had no choice. Luckily, this helped me.
My good friend from dialysis, also a highly-sensitized patient, transferred to Saint Barnabas and received a successful transplant within a year. She told me to register with them. I thought, if she can get a transplant, so can I!
Finally, in January 2018, I transferred and registered with Saint Barnabas. First, I met with my nurse navigator, Eleanor Simchera, RN at Saint Barnabas She was wonderful! She helped me navigate through the entire process from beginning to end. Soon after, I met with the transplant team. They were awesome! They gave me hope again!
One evening in August 2018, I wasn’t feeling well and went to bed early. Within a short time I awoke and found myself soaked in blood. My fistula was spurting blood out all over. My daughter, an ICU Nurse, was home and wrapped and held my arm while my husband drove us to the hospital. I later found out that I had a staph infection, most likely introduced at my fistula site. The infection was affecting my fistula. It wasn’t healing and it would repeatedly start bleeding on and off. Again, another perma-cath was inserted to allow my fistula to heal. I was in the hospital two weeks, only to come back again because my fistula blew up again. It was the final straw. They had to tie off my fistula. What was I going to do now? I already had two fistulas. What’s my chances of getting a third? How long will a perma-cath last? I was running out of options. I was scared!
The Sunday after being released from the hospital, my husband came home from Church saying that there was a world-renown healer speaking and that he was holding a healing vigil at the Church during the week and we were going there to pray for help. I did not want to go, but my husband was insisting. Since when does my husband believe in that sort of thing? What did I have to lose? We attended. We prayed. We met the man. I told him my story. He was truly touched by my story and promised to help me. I can’t explain the feeling that my husband and I experienced but we left knowing something good was going to happen. And a month later it did!
While at church a few weeks later, my husband and I noted we had phone messages from Saint Barnabas. As we listened to the messages, they were telling us that there was a potential donor. A woman from California was on life support after a car crash. They wanted to know if I would accept the kidney and needed to call back as soon as possible. I said yes! The donor’s kidney was a perfect match. We couldn’t believe it! Two days later, on October 30th, I received my new kidney. It was truly a miracle!
I am so thankful for my new kidney and grateful to my donor, her family, all my doctors (Dr. Patel, Dr. Atkinson, Dr. Wang) and the nurses at Saint Barnabas Medical Center. The staff is truly amazing! If I can get a message to anyone needing a kidney, I would tell them make sure you go to the Transplant Center that is the best. I would tell them to go to Saint Barnabas!
Anyone can be an organ donor, regardless of age, race, or medical history. Take 5 minutes to sign up now! You may someday be able to give the priceless gifts of life, sight, and mobility to another. One organ donor can save 8 lives One tissue donor can restore health to over 75 others. Learn more and register at www.RegisterMe.org/SaintBarnabas.