I have been on a difficult journey for over three years now, but I am a fighter and a survivor. I have had many bad days, and when I think I have hit my lowest of lows, another obstacle is put in my path. Before this unbelievable roller coaster began, I was a new mom to a beautiful, healthy miracle baby who was born by many prayers of hope and a determined mom and dad. I had taken a few months off from teaching, my other passion. I love being a mom and spending as much time as possible with my little angel, but teaching was my passion for 16 years. I loved learning new innovative ways to teach and inspiring kids to love learning. Well, that all changed in a blink of an eye.
On May 2, 2012, I was sitting at my desk grading papers during lunch and felt terrible. My heart was racing, I had a headache like none I have ever experienced, nausea, and my feet and ankles were swelling literally before my eyes. I went to the nurse; she checked my vitals and my blood pressure was 210/120! I was sent to the ER immediately. I never saw my students again, which, to this day, still breaks my heart.
Upon arrival at the ER, I had a full cardiac work up. The cardiologist found nothing. It was the ER doctor who noticed that in my routine urine test, I had a very high amount of protein. The normal levels are anywhere from 0-100. At the time, mine was 13,000. Currently, it’s over 17,000. A nephrologist was called in and a series of testing and scans were done. He was certain I had Nephrotic Syndrome. The nephrologist immediately put me on blood pressure medication, Lasix to drain some of the fluid, and cholesterol medication. After five days in the hospital, I had a biopsy, which confirmed it was Minimal Change Disease, a form of Nephrophic Syndrome. Oddly, this disease is very common in kids and not as common in adults. Doctors don’t know what causes it; there are no known risk factors or genetic links for this particular kidney disease. There is no cause and there is NO CURE.
In mid-May 2012, I was put on a high dose of prednisone and told I would need to be on it for three to four months. At the time I thought that was terrible. I was so strung out on the steroids and I was walking to keep off the pounds that come with that level of prednisone. The prednisone raised my blood sugar. I had to be closely monitored by an endocrinologist, check my blood sugar 6-8 times daily, and give myself insulin shots. My blood and urine was checked weekly to see if the protein level went down and to make sure I still had good kidney function. The good news was my kidney function remained stable, but the protein would yo-yo. It would go down a thousand or sometimes a couple thousand and then shoot back up. This went on for seven weeks before the nephrologist decided it was not working.
I had to be slowly tapered off the prednisone (over the course of the next five months) while starting a much more toxic medicine called Cyclosporine. Shortly after starting the Cyclosporine, we switched to a different nephrologist who had more experience with this particular disease. The combination of the two medications was deadly. There were days I literally could not make it up or down the stairs without stopping for a break. As the Cyclosporine dose increased, so did its side effects. I was dizzy, nauseous, dry heaving, vomiting, my hands would tremble, my feet would burn or go numb, and the list goes on. The worse part was I could not take care of my son without a lot of help. Thank God for my parents during the week and my husband on weekends. Just sitting on the floor playing blocks with my son, Devan, was exhausting.
The nephrologist took me off of the Cyclosporine about six weeks later. It was showing no change, and the side effects became worse. I had to then see a GI doctor due to issues such as nausea, dry heaving vomiting, and diarrhea. He did an abdominal X-ray, abdominal ultrasound, and pelvic ultrasound, as well as a zillion blood tests. When he found no issues there, I then had both an endoscopy and colonoscopy. The conclusion was that all the GI issues were med-related, which was the original thought, but the doctors wanted to be sure. At this point I was still being tapered off prednisone, and my hair was falling out because of it. It was a nightmare!
I was then started on another kidney med called Prograf. It is very similar to Cyclosporine, but most people who have bad reactions to Cyclosporine are able to tolerate Prograf. All was good with Prograf until the dose was raised, and then the same side effects slowly crept back! So I went off the Prograf after only 3 weeks. The next medicine of choice was even stronger, and the nephrologist wanted to be 100% sure that the diagnosis of Minimal Change Disease was accurate from the first biopsy. The medications used so far would have been the same, but if it was not Minimal Change, the next treatment would be different. This biopsy was done in December 2012. I needed to stay in the hospital overnight after the procedure. It confirmed that it was NOT Minimal Change, but rather FSGS. This is more difficult to treat and is never cured, but can be considered in remission.
A few days later, I then developed a hematoma at the biopsy site, which is very rare. It became infected and I landed back in the hospital for over a week. Since all the medications I had been on for the kidneys were immunosuppressants, I developed pneumonia while in the hospital because my immune system was shot! The good news was that I was taken off the prednisone, which meant no more insulin.
A week prior to being in the hospital in December 2012, I received a letter from the Board of Education that I needed to return to my teaching position on January 2, 2013, resign or be charged with job abandonment, which could result in loss of my teaching license. By law, even as a tenured teacher, you can be out on medical disability and your job only has to be held three months. So thanks to my husband, my cousin, and her husband, my 16 years of passion, commitment, and A LOT of personally spent money, was boxed up and put in storage. I wrote my resignation with both dignity and tear-filled eyes. I had to accept that my health was my priority.
Around mid-January, the nephrologist was ready to move to the treatment. This medicine was Mycophenalate. Unfortunately, it was a repeat of the side effects from the previous two treatments. I was only on it for three weeks. At this point, concern about my kidney function was the top priority. All along it was okay. It had declined in December, but that was thought to be due to the infection. The next and final treatment was Rituxan, a form of chemotherapy. I had one infusion that lasted four hours. I had blood and urine tests the following week, and there was no change. I had the second and last infusion (it’s only a two-time treatment), waited two weeks, and there was no change. My nephrologist still had hope it could work because 45% of patients take up to three months to respond. Well, it had been about two months, and my kidney function had continued to decline, so I was told in August 2013 I was considered to be in complete renal failure and needed to start dialysis and wait for a transplant. This was never in the cards. Total shock!
On August 7, I went to Saint Barnabas Medical Center for a kidney transplant evaluation. It was a five-and-a-half-hour day that started in a group with eight other patients. I was the only patient there with living donors. Everyone else was being put on a deceased donor list, and the current wait is five to seven years. I should have had my new kidney in a few months if all went as planned. Thank God for my potential donors! Amazingly selfless people! Each one of them is a hero to me. I will forever be eternally grateful to these people who were willing to sacrifice their wellbeing and turn their lives upside down for my life. The potential donors were James Hill (father), Bernadette Hill (mother), Karen Howell, and Aimee Kemp (friends).
It was Labor Day, everyone was having parties, and I was at my first session of dialysis. I have a high tolerance for pain, but emotionally it was really rough. Everyone there is so sick. Many can’t even walk. They come in with wheelchairs, walkers, or on a stretcher. Up until then, I just tunneled through, but reality had hit hard. I couldn’t believe I was there and waiting for a transplant. From September to December, I just kept telling myself this is temporary, and soon I will have a new kidney and a new life. All testing was complete and the surgery was set for January 2, 2014. Then three weeks before surgery, the donor, Karen Herbert, was told she had an elevated protein level in her urine and was strongly advise not to donate. I can’t put the devastation into words.
The minute my dad heard this, he was determined to be my donor. He went on a strict diet, walked two miles a day, and weight trained. He passed all the tests, and we received the miraculous news that he was a perfect six out of six match! This is very rare. But not even a week later, a basic blood test showed he had an elevated creatinine level, which was 1/10 of a point higher than what is accepted to donate. Again, complete devastation.
I just wanted my simple little life back. Never again will I take one moment of health and happiness for granted. Never again will I waste an ounce of energy on people who are only there when life is good. It’s amazing how much good I have found in people through all this and how selfless people do exist, but I have had some painfully shocking awakenings that “friends” are not who I thought them to be.
I don’t why I have this disease. I try to believe there is a much higher power at work. I do believe I was meant to stop and make changes. Changes that will affect my health and happiness, as well as that of my family. So far, this is what I believe are some of the messages I was meant to get, even if I don’t always listen to them as closely as I should:
1. Health is a gift to be treasured, and without it, you have nothing.
2. Work is work. Leave it there and forget it because work doesn’t care about you.
3. Family is the most important thing, and family is often friends.
4. You are what you eat. Eat whole, healthy foods 90% of the time, and indulge the other 10%.
5. There is always time to exercise, and some is better than none.
6. The dishes, the laundry, and dust will be there, but that time with your child or other loved ones will not.
7. Don’t be quick to judge another person, because you never know what personal struggle they are experiencing.
8. Cherish the people who love and support you, and pray for the ones who don’t.
9. Life is short, life is fragile, and I have no time for negative people or drama. Forget them, mourn for the loss of who you thought they were, and focus on the people who lift you up.
10. List your blessings everyday! There are always many no matter how bad things get.
11. It’s okay to not be brave all the time and allow yourself a good cry. Then pull up your big girl panties and keep on roaring.
12. Pray. Pray often. Prayer is powerful.
“That’s what I’ve gotten so far. It’s time for me and my family to catch a break. I pray dialysis is short-lasting and the bridge to the end of this never-ending dark hole. Please pray for a miracle; be it a selfless donor who decides to step forward or a 3 a.m. call that a perfect match kidney is being flown across the country to me. Pray for our strength, understanding, and the will to keep fighting!”
I wrote those words in March 2014. On April 19, 2014 I received that one in a million phone call telling me there was a perfect match kidney coming from a 25-year-old deceased donor in Tennessee. What do you say? First, I ask if this is even real. Am I hearing this right? Then I am elated, then profoundly saddened by the fact that a young man who was in good health suffered a fall in Tennessee in order for me to get this miracle. The emotions were so mixed. The drive from Cape May (where we had gone for a short getaway) to Saint Barnabas Hospital is still just a huge blur.
I truly believe this was meant to happen and unfold exactly as it did. My nurse was Grace, the on-call surgeon was Dr. Sun, and the phlebotomist who had to take a lot of blood from my tiny veins, and did it with astounding ease, was named Angelico. All this on Easter Sunday. Finally, after arriving at the hospital at 7 a.m., I was wheeled into the OR for a true Easter miracle.
It has been almost a year now, and I’m doing very well. I did hit a little bump in the road in September with a rejection, but it was caught early. Still, I had a 16-day stay in the hospital, with high fevers and low white blood cell levels from the medication given to reverse the rejection. I literally thought I was going to die, and never before did I feel that. The rejection was reversed and I’ve been doing fabulous ever since.
Now it is time to pay it forward, honor the man who gave me this life, and educate others about FSGS. I am currently working with NephCure, whose sole purpose is raising awareness, fundraising for research, and working to find a cure for FSGS. In addition, my goal is to educate others about the importance of being a living donor, as well as checking the donor box on your license — just as my sweet angel did for me.