David’s History with Kidney Disease…

21 years ago I went to see my doctor for a regular check up. My blood pressure was in the stratosphere: 270/140. After a series of tests, they discovered that I had lupus, and that it was attacking my kidneys. 

 

Since 1996, I've been seeing a nephrologist, Bertrand Jaber, at Tufts Medical Center. Lupus is usually triggered by stress, and so, Dr. Jaber suggested two lifestyle changes:
1. Find a less stressful career.
2. Try exercising to manage my stress.

I researched lupus and decided I didn’t want this disease to define my life.

I wanted to chase my dreams, achieve my professional goals and enjoy a healthy fulfilled life. So I embraced the idea of exercising my stress away, and that is just what I did! There were spin classes at the crack of dawn, countless hours of jogging on the streets and paths of Boston, the Paris Marathon at age 40, local road races, charity rides for AIDS, the Pan Mass Challenge, and multiple Swim-for-Life events across Provincetown harbor.  When you add it all up, I've clocked about 25,000 miles of running, over 60,000 miles of cycling, a fair amount of swimming and over a full year's time in a variety of exercise classes.

At the same time, I was handling a hectic career, nurturing a long-term relationship, traveling to interesting parts of the globe and managing real estate projects. At each step of my journey, Dr. Jaber was tracking the slow deterioration of my kidney function. We tried different combinations of medicines, but the lupus continued to attack my kidneys. Fortunately it hasn’t yet affected other organs. 

Doctors measure an individual’s blood creatinine level as a test of kidney function. The kidneys' ability to handle creatinine is called the creatinine clearance rate, which helps to estimate the glomerular filtration rate (GFR). This is the rate at which one’s kidneys are filtering.  

 

In 2014, I celebrated my 50th birthday. It was also major milestone with my kidney disease. My kidney function dipped precipitously, and I began exhibiting many of the symptoms of late-stage kidney disease: fatigue, lethargy, insomnia, swelling (in my legs), loss of appetite, metallic mouth, anemia, nausea, proteinuria and itchy skin. My GFR dipped below 15%, putting me in stage-5 chronic kidney disease (CKD) and making me eligible for the deceased donor transplant list.

I became even more vigilant and proactive in managing my health. I changed my diet again, reducing meat proteins, sodium and foods rich in potassium. Imagine giving up leafy green vegetables, bananas, citrus fruit, dairy products and nuts. But it was worth it, as my kidney function amazingly responded, and my GFR improved to 24% — still critical, but not dire.

All of this prompted the need to begin the transplant conversation with my family and friends. Once the transplant discussions began, my younger sister Ariana immediately offered to be a donor. We researched transplant centers and selected Brigham & Women’s Hospital. With the help of the transplant team at B&W, we began to formulate a plan. Last spring, Ariana underwent extensive eligibility testing.  According to the transplant team, Ariana was the closest possible match outside an identical twin. During the final stage of her screening, a CT scan detected a cancerous mass on one of her ovaries. Fortunately, the cancer was discovered early, and with treatment, Ariana's is expected to be cancer-free.  Although she is encouraged about her diagnosis, Ariana is disheartened the it makes her ineligible to be my donor .

For the last three years, I have continued to follow my nephro-friendly diet and managed to slow the deterioration of my kidney function. I’ve been working, exercising and trying to maintain a positive outlook. 

My GFR is currently 9%. 

I'm back at stage-5 CKD. Luckily, I’m am not experiencing many of the side effects associated with end stage renal disease (ESRD). In fact, if you were to see me today, you’d might never guess I was sick. But sadly, as my kidney function continues to deteriorate, I will not be able to remain symptom free for long. Sooner rather than later, my kidneys will fail completely.

Up to now, I've done everything within my power to battle this disease, and anyone who knows me can tell you that I’ve always tried to be self-sufficient. But my sister’s illness has changed the rules of the game, and it is now necessary for me to reach out and ask for help. I need a kidney donor. Although I am listed for a deceased donation, that could easily take up to 7 years to find a match. Without a kidney transplant, the best scenario I could hope for would involve a life on dialysis. 

I realize this is a BIG ask, and most certainly a BIG give for a donor.

If anyone wants to consider being a living donor candidate, please refer to the other links on this site.

My Blood Type is 0+

I'd like to extend my heartfelt gratitude to everyone supporting me in this effort.

David