Paula Fish is in need of a kidney transplant.
The Cranston native is a retired Cranston teacher who taught at Dutemple Elementary School for 32 years and she is suffering from polycystic kidney disease (PKD), defined by the Mayo Clinic as “an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time.”
“My dad got sick at the age of 35 and died at 48 from Polycystic kidney disease,” said Fish. “At the time we did not know that this was genetic. I was the oldest of my three siblings and my dad died in September of my senior year. Despite this, I had a wonderful childhood, although being the oldest, a lot fell on me to accompany my mother with my dad to his appointments.”
In college, Fish earned her degree, got a masters in teaching, married and had her first child at around 30 years old, and at that time her health was good.
“At 36 I had my second child, and I was having some digestive problems so they were running some tests on my gallbladder,” she said. “All that looked fine, and the technician said she’d check around some of my other organs while she was looking at my gallbladder. She took a look and said, ‘Oh my God, your kidneys look like swiss cheese,’ and that’s when I knew.”
At the time, nothing was done, as Fish was not yet having any symptoms. However, about a year ago in March, she met with a doctor, and the news was not good.
“He said, ‘You’re in kidney failure,’” she said. “I was glad I was sitting down, I wasn’t expecting that.”
Because Fish has type-O blood, she needs a universal kidney donor, but is not a universal recipient. Someone with types A and B blood can take their own type, as well as the type O kidneys, but as a type O, Fish can only take a kidney from someone with type O blood, and someone whose tissues and antibodies are also a match. The testing for both herself and a potential donor are covered under her health insurance.
Neither of her siblings are matches and a niece that was tested also was not a match. Recently Fish thought she had found a donor, but as the testing progressed, he too was found to be unable to donate, as tests revealed he was pre-diabetic.
Fish now needs a miracle.
“The doctors basically say, ‘Good luck in your search,’” she said.
Fish has been put on the transplant list for the New England region and she is on the list at the Cleveland Clinic in Florida where she has also been seen.
“Florida is known to have more transplantable kidneys available because they don’t have a helmet law there,” she said.
Fish’s husband, Dean Fish, who is also a retired Cranston teacher from both Park View Middle School and Cranston High School West, has taken on her care as her medical advocate, and her son has taken on the details of the donor search. Throughout his career, Dean not only taught anatomy, biology and physiology, but also has a nursing degree and taught at the New England Institute of Technology.
“This is a disease where you look fine, and you don’t look ill, but that’s not how I feel,” she said. “I am more fortunate than others because there are terrible side effects to this disease and I know they are coming. I don’t have them yet, but they’re coming. I do feel utter exhaustion from the toxins even though my red blood count is fine.”
Fish’s kidney function is currently at 14 percent, and since dialysis only gives patients 15 percent kidney function, she is not in a hurry to start that process, which carries with it a whole other set of side effects.
In addition to the physical side effects of the disease, Fish feels the emotional effects of having a progressive disease and uncertain future as well. As the child of someone who died from the disease, Fish has an unfortunate perspective that others don’t necessarily have, as she knows what lies ahead.
“It makes me feel like I am walking in quicksand every day,” she said. “I don’t ever feel like my feet are firmly planted. When people ask me how I deal with this, I tell them that I don’t. Mentally, I put this in a box and I put the box in a corner and I don’t think about it until I need to, like for doctor’s appointments and things like that. I am trying to cram as much as possible in the time I have left.”
When people ask her how she feels about her situation, her answer is obvious.
“I’m angry,” she said. “I’ve been given literally a kind of death sentence. I’m not happy about it. At first, I was hysterical. I’ve had a lot of bad luck in my family and I thought we might catch a break. Once I was over getting upset, I got angry, and my anger fuels a lot of what I do. I’m not going to wallow in this, but it’s been like moving through the stages of grief.”
Fish tries to project strength, but says that inside she is an emotional wreck.
Part of the process of searching for a kidney involves people reaching out to her donor advocates and transplant team, which has meant Fish has had to put a lot of herself “out there” for others, and to lose a lot of her privacy in the process, as she makes a desperate plea for help.
A Facebook page has been started (www.facebook.com/paula.fish.5667), a website made (organdonor.help/), a phone number provided (401-400-0521), t-shirts have been made, an email established (firstname.lastname@example.org), and both her husband and son have put signage on their cars indicating the need for a Type O donor.
“They say we’ve done more than most to get the word out,” Fish said.
Although Fish has remained close to many of her former students, she said that this publicity has brought even more out of the woodwork and she has reconnected with many, and they are also helping to spread the word about her need for a miracle.
Fish is not supposed to know if anyone has reached out to her transplant team, not supposed to be aware of whether or not anyone is being tested as a potential donor, and therefore she continues to spread the word in the hopes that she will reach out to just the right person who can save her life.
Fish encourages potential donors to consider her cause, and emphasizes the relative ease of the surgery for those who donate.
“The testing is very thorough, and they take very good care of the donors. The surgery and recovery is easier for the donor than for the recipient and sometimes the surgery can even be done arthroscopically. For me, it is major surgery, but for a donor it is not at all as invasive,” she said.
Anyone interested in providing Paula Fish with a life-saving kidney donation should reach out to her donor advocates through the email, website or phone number above.
“Everyone is born with two kidneys, but you only need one,” she said.