Searching for a Donor
Now, to another kind of search. There’s a list in New York state, a list you’d not want to be on. It’s a wait list for an organ transplant. Reporter Laura Gamba spent time with one family, waiting and hoping the search for their daughter’s new kidney will soon be over.
Kimberly Cuesta isn’t like most fourteen year olds. She doesn’t go to school or play with friends. In fact, she isn’t able to leave the house very much because of her precarious health. But, according to her mother, Patricia, things weren’t always this way.
Patricia Cuesta 1
We used to take her to the park. She used to run to walk. She was a happy child.
Everything changed when Kimberly was 5 years old. Doctors discovered an unusual amount of protein in her urine. Then her face started to swell and her eyes started to bulge.
Patricia Cuesta 2
We thought it was food poisoning so we talked to the doctor and he said it can be an allergy.
But it wasn’t an allergy. Doctors ordered a biopsy of Kimberly’s kidney, and found that it was only working at 30%. Kimberly was diagnosed with FSGS, a rare disease that produces scarring on her kidneys, which has caused them to fail. She started dialysis right then.
Patricia Cuesta 3
I had to take her to the doctor everytime, it the catheter fell off on the floor or she touched with dirty hands cause she can catch infections and the Dr had to put antibiotic in her belly.
Which is what brings us here. To this first floor bedroom in the Cuesta home in Staten Island. Where Patricia is preparing the tubes and fluids that will do the work that Kimberly’s kidneys should be doing.
[LAYER IN SOUND BENEATH]
A catheter pokes out of Kimberly’s abdomen, and a fluid runs through it, into her belly. After a while, the fluid leaves her body through the same tube to another bag.
Cuesta – Dwelling like an hour and then drain it up.
It’s hard to watch, honestly. But it’s their routine. Patricia gives Kimberly an iPad to distract her through the process, but it seems Kimberly has gotten used to it.
The last part is what Kimberly hates the most. And oddly, it’s the least invasive part of the procedure. Having her blood pressure checked.
(Kimberly says no and then blood pressure machine.) 36 – part 2 llora
Because all of this is made more difficult by the fact that Kimberly is autistic. Before having a kidney failure, she did all stuff kids do, but now her condition means it’s hard to know how to treat her, how to help her.
Dr. Sander Florman, director of the Transplant Institute at Mt. Sinai, is part of the medical team overseeing Kimberly’s care. He says dialysis does not replace a kidney.
Dr. Florman 1
That machine replaces about 20% of kidney function, you can’t eat or drink what you want and the majority of those people aren’t able to work, travel and their chances of having a heart attack or stroke go up dramatically.
So Kimberly needs a kidney. But whether she’ll get it or not… That’s not so easy to know.
In 2014, Kimberly was added to the long New York State organ waiting list. There are about 10,000 other New Yorkers waiting for an organ. According to Dr. Florman, it’s not easy to get off that list.
Dr. Florman 2
If you look at the people waiting for a kidney transplant, the average wait depending on your blood type is anywhere from 3 to 7 years.
Dr. Florman 3
Higher waits are in places like NY, Chicago Los Angeles where there are greater burdens of disease and more people.
Simply put, more sick people in New York means the line is longer. But there are other reasons that explain why the wait is so long.
Julia Rivera 1
We have a little problem because our enrollment process has been very difficult, ok?
Julia Rivera is the Communications Director of LiveOn NY, the organization in charge of getting the available organ to the right organ receiver in the list. She says they didn’t have an online system for many years… Now they do, though, it isn’t exactly ideal. Rivera says it’s hard to navigate. This is something LiveOn is trying to fix.
Julia Rivera 2
Life in New York is a very busy hustle and bustle, right? So what we are trying to do is make it easier for everybody to sign up.
And the theory is that an easier sign-up would mean more organs for people like Kimberly. A year ago, she was number 4 on the list. Patricia was happy. She felt her daughter had never been so near her lifesaving kidney. They waited and then…
Patricia Cuesta 4
They called me and said they had a kidney that is match for Kimberly.
But her kidney failure had a side effect — seizures — that made a transplant more difficult. The doctors went back and forth on this — was Kimberly strong enough for the complicated surgery she needed, or did her seizures make it too dangerous?
Patricia Cuesta 5
Her doctor, Dr, Oconnor, the neurologist Dr., filed a letter saying that she is ok to receive a kidney, that is not an issue because the seizure is controlled and she is taking medicine.
But by the time the letter arrived, it was too late. The kidney wasn’t available anymore. It had gone to someone else.
And this happened again, a couple of months later. Patricia was called once more to go to the hospital because there was a compatible organ for Kimberly. When they were packing their things to go, they received devastating news.
Patricia Cuesta 6
They said it wasn’t very healthy for Kimberly. We were happy crying for happiness and then later on we cried for sadness.
Kimberly gets worse every day. She throws up nearly everything she eats, she is skinny and pale and in constant pain. Besides being on dialysis all the time, she takes medicine for seizure,
Patricia Cuesta 7
For the acidity, for the stomachache,
For blood pressure,
Patricia Cuesta 8
For the potassium phosphorus, the food, medicine for sleep
But that’s not the hardest part…
Patricia Cuesta 9
Sometimes she just cries and cries for no reasons and I cry with her too because it is very hard you know, I don’t know what to do to help her.
The one thing she does know how to ask her mother is to scratch her.
That is Kimberly saying ‘itching’. It’s one of the few words she knows because she constantly feels as if her body were burning.
Her mother helps her out.
There are good days too. Patricia says Kimberly remembers nice moments of the past sometimes.
Te estás riendo silly? Qué te causó gracia, qué te acordaste? Ella cuando se acuerda de algo, se ríe, no sé de qué, como no puede avisar…
(Are you laughing silly? What is making you laugh? What did you remember? When she remembers something, she laughs).
She hopes that the next available kidney is A positive. But AB and O positive are also a good match for Kimberly. She anxiously waits for the call… How anxious? She has to switch to her native Spanish to explain…
Cuando mi teléfono suena y veo Mt Sinai mi corazón late más rápido.
(When my phone rings and the number is from Mt. Sinai… her heart beats faster)
When the phone rings with a number from Mt. Sinai, Patricia says, her heart races.
And until they get that call, they are not willing to give up.
Laura Gamba, Columbia Radio News