Comedy show to support Cranston father preparing for kidney transplant

By Pam Schiff
Posted 9/7/16

“I don’t like to ask for help,” Paul Whitfield said. “It’s not who I am. I am the helper.”

Whitfield suffers from a rare kidney disease called focal segmental glomerulosclerosis …

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Comedy show to support Cranston father preparing for kidney transplant

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“I don’t like to ask for help,” Paul Whitfield said. “It’s not who I am. I am the helper.”

Whitfield suffers from a rare kidney disease called focal segmental glomerulosclerosis (FSGS). At this point in time, there is no known cure or cause.

The 44-year-old father of one son is on the kidney transplant list and is in need of help.

FSGS attacks the kidney’s filtering units, or glomeruli, causing serious scarring which leads to permanent kidney damage and even failure.

Whitfield was a semi-pro basketball player in December 1995. He went for his annual physical and the doctor told him that his urine sample was “cause for concern.”

“On Valentine’s Day 1996, I had a biopsy and it showed FSGS. I had no symptoms, no side effects, no idea,” he said.

For five years with this diagnosis, Whitfield went through tests, scans, and blood work.

“Right now, I have 9 percent kidney function. The problem is the symptoms such as high blood pressure can be due to a multitude of issues,” he said. The disease is masked easily.

As of now, Whitfield is only on four medications. But his symptoms have increased to include vitamin D deficiency, fatigue, feet swelling and bloating, high blood pressure, and hypothyroidism.

“Honestly, I am just sick and tired of being sick and tired,” he said.

Whitfield knows he is lucky to have kept the disease at bay for as long as he has.

“I am thankful to my doctors and the medications for getting me to this point,” he said.

From the time period of 2005 to 2012, Whitfield was actually considered to be in remission with a kidney function rate of 37 percent. But as time goes on, the medications are not as effective as in the past.

Whitfield’s doctor is the chief nephrologist at the Joslin Diabetes Center in Boston. Dr. Robert Stanton had never seen a case like Whitfield’s before.

“Since the disease is so rare, most doctors are unfamiliar with it. Not sure if luckily or not, but Miami Heat player Alonzo Mourning was diagnosed with FSGS in 2009. I was lucky enough to have my doctor reach out to his, and here I am almost 14 years later,” Whitfield said.

Every four months, Whitfield travels to Boston for blood work and blood pressure checks.

“I’ve never had to do dialysis. But I am afraid without a transplant, that will be next,” he said.

Whitfield has been diagnosed with Stage 5 renal disease and is considered to be severe with under 10 percent of kidney function. In 2013 he was placed on United Network for Organ Sharing (UNOS), and he was Stage 4 at that point.

“Typically someone in need of a transplant gets listed on a deceased list at 20 percent. Most are not sick enough at that point to need the actual transplant, but because the wait list is a minimum of five to seven years, 20 percent and under is the point where getting listed makes sense,” he said.

Currently, Whitfield and a family member are undergoing tests for a possible transplant match.

Between Sept. 9-12 his donor will undergo a battery of physical, psychological, and emotional tests.

“If this happens and everything works out and is good to go, the transplant will be fall 2016,” Whitfield said. “We are hoping for end of October if the ‘stars align.’ My transplant doctor is Martha Pavlakis from Beth Israel Deaconess Medical Center, and she is ready to go.”

He added: “This is where I had the hardest time with all of this. Asking someone, anyone for help. I am so used to being on my own, from a very young age, that reaching out is really against my nature.”

Whitfield is now going with the motto of “chin up, chest out” to show his son, second-grader Marcus, that dad is strong and fighting for his life.

“Marcus is my life, my inspiration, my buddy,” he said, holding back tears. “He knows more than any kid should know at his age. It’s hard to shield him from the reality of what is going on. I try not to sugarcoat it, but I explain to him, that there’s a fix, we have a plan and I am going to do everything I can.”

Whitfield is responsible for all the costs associated with the transplant that his insurance doesn’t cover. Most of those expenses are tied to the donor, including transportation, doctor’s bills, and the hotel before and after transplant, which is seven to 10 days post-transplant.

To help provide financial support, “Comedy for a Kidney” – a show put on by the group Funny 4 Funds – will be held Sunday, Sept. 25 at the West Warwick Elks Lodge at 60 Clyde St. in West Warwick. Doors open at 4 p.m., and the show begins at 5 p.m. There will be a pub-style menu, cash bar, raffles, and a 50-50 drawing. Tickets are $20.

Whitfield is grateful to the Oak Lawn Elementary School community for all its help and support.

“The PTG at Oak Lawn has been there for me right from the start. They posted about the upcoming comedy show and people have reached out to me that I don’t even know. I am so grateful to my friends Mike and Ruthanne Farina for their encouragement,” he said.

Whitfield said he has heard from people from work, neighbors, and friends that they will be at the show.

“I am so excited to see everyone come and have a good time. I don’t feel so badly asking them for help, since I will be able to give them something in exchange. I was told that Mayor [Allan] Fung will be coming to the show also. I am blessed to have so much support,” he said.

Whitfield does not have a goal or activity that he wants to do once the transplant is over.

“I want to do something that Marcus wants. Whatever makes him happy and smiles, that is my dream,” he said.

For more information about the comedy show, call 401-688-1945. To learn more about the transplant process, visit helphopelive.org and search for Paul Whitfield.

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