Only 30: In America… and she needs a kidney
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Kidney patient Tihana Macakanja, right, outside York Place where she and her sister, Duska Burruss, used to operate a shop.hawes spencer
By Brittany Gamble
It’s 11am, and Tihana Macakanja has just spent two and a half hours hooked to a machine; and even after the procedure ends, she's facing a 15-minute drive home. It's an arduous cycle that she repeats three times a week, but with her closest relatives ruled out as kidney donors, dialysis is something she could be stuck with for a long time.
A native Croat, Macakanja, along with her mother, father, and a sister, came to America in 1999. They left behind her older sister– and the bombs that were falling during the Croatian War for Independence.
In 2005, on Charlottesville's Downtown Mall, the two sisters founded a Yugoslavian food store called X-Yuga. After two years, however, the duo closed the store. Macakanja, now living in Fluvanna, makes a thrice-weekly trek to a UVA-affiliated medical facility in Zion Crossroads for her dialysis.
First learned of her failing kidneys when she became pregnant in 2003, Macakanja lost most of her kidney function in 2010.
“Almost two years ago, I started with dialysis,” she says. “It’s supposed to be a temporary thing, but it’s so hard to find a donor.”
To hear the 30-year-old talk of "the list" is to learn of a litany of near-misses, potential donors who backed out (including European friends who can't afford to travel and recuperate in America). Then there's the reluctance of people who do not realize they can live full lives with just one kidney.
“Education is a big barrier that we deal with,” says Jennifer Thompson, administrative assistant for the Transplant Department for the UVA Hospital. But the main concern, says Thompson, is finding a compatible donor.
“We have people out there that want to donate but unfortunately aren’t a match,” says Thompson.
Macakanja's mother, for instance, was eager to give, but her high blood pressure might have put both donor and recipient at risk for further ailments. Both her two sisters and her father didn't match.
Unfortunately for Macakanja and many others, there are over 110,000 patients on organ transplant lists and fewer than 13,000 registered donors, so it can take a lifetime to reach the top.
Despite the setbacks, Macakanja was encouraged to learn recently that former City Planning Commissioner Cheri Lewis plans to go under the knife in March to give a kidney to a man who's the husband of a high school teacher and soccer coach of hers.
“They have been like second parents to me,” says Lewis.
By contrast, the Croatian natives find that they haven’t developed such a wealth of connections in their new country. “We’re really alone here,” notes Macakanja’s sister, Duska Burruss.
Still, after surviving a war, they say resignation is no option.
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Author Brittany Gamble was a recent intern for the Hook.
Note: story adjusted at 10:43am Tuesday, March 6 (prior to print publication) to correct a couple of facts.
15 comments
I guess a return to Croatia was never considered by Ms. Macakanja? The pool of potential donors would be much larger there. Plus it's certainly safe enough there now (they will soon join the EU). No hostilities in the last 16 years.
I'll give you three guesses as to who is paying for her medical care and to support her in her adopted country since 2007 . . .
Would you want your kidney transplant done in Croatia? While the story doesn't go into her resources, over 95% of patients on dialysis have Medicare. So she isn't the only one accessing "public" funds.
Since the 70s funding for dialysis has been different
than that for other conditions and is almost always
available for everyone (mandated by legislation).
That's not true of other diseases where many people
aren't eligible for Medicaid at all and have to make
other arrangements if they can.
Man, confused, it's not like she came here and started pilfering stuff and dealing drugs. She opened a store (albeit a silly idea). I am no bleeding heart, but I do feel for her. She should contact Krist Novoselic, a Croatian political activist in Oregon, who might have connections.
Srsly, I am glad you ackowledge the superiority of our health care system here in the US. It needs some fixing, but the house need not be razed.
As for the article, Cheri Lewis is connected to Shari, the owner of "Lambchop," that annoying puppet of yore, is she?
R.I.P.: Barry White
As a second generation Irish American "confused easily", I find your comment truly ignorant. Most who come to this country work very hard, do the work most Americans now feel too good to do and contribute to society and culture - probably more than you do. I worked for a few who owned restaurants and an average days work was 14-16 hours a day for them.
Organ donation is something many people do not consider even if your loved one can not donate organs due to other issues, skin and other items can be donated to help. Sign the organ donation portion at DMV the next time you renew your licence, donate a pint of blood, you could save a life.
@ mer - you mean Medicare, not Medicaid, and individuals with ALS who are on disability are eligible regardless of age, also.(see http://www.medicareinteractive.org/page2.php?topic=counselor&page=script... and http://www.medicare.com/services-and-procedures/end-stage-renal-disease/...).
Dialysis & transplant are so prohibitely expensive that you'd have to be beyond independently wealthy to afford it even on private insurance, which is why Medicare helps fill in the gaps in coverage.However, if you do have private insurance, for the first 30 months of dialysis, federal law mandates that your private insurance is primary, and Medicare secondary.
The bad news is that 3 years after receiving a transplant, your Medicare coverage is yanked, which is the reason many recipients can no longer afford their immunosupressants and - wait for it - end up rejecting their organs & going back on dialysis, which in turn requalifies them for Medicare. Not cost effective, because a successful transplant is less expensive in the long run than years of dialysis.
Not to mention, of course, the significant improvement in quality of life of most transplant recipients vs dialysis recipients.
Wishing Ms. Macakanja the best of luck.
Oh interesting (and terrible). I knew that high cost was the rationale
for paying for all (most?) dialysis patients (under Medicare).
Isn't Medicaid limited to the income qualifying elderly,
families with kids, and the disabled? so a lot of people
fall through the cracks needing help from free clinics,
churches, etc. esp self employed. About yanking coverage--crazy
(and terrible).
Excellent photo. Tell the story without a word.
I'm already on like my fifth kidney.
For those that don't know me , I am American citizen .
I wish people would not judge me by being born in some other country ( after all what do you think where your ancestors came from , somewhere in the long line they had to come from a different country ).
I didn't chose to be on a medicare , I didn't chose to be on dialysis .
I don't and I didn't pressure anyone to be donor tested for me .
I just hope that no one has to go through what I do and 110,000 other people that are waiting for a organ transplant .
Thank you for reading this article .
AMEN!!!!
The words are compassion and hope. This is about saving a persons life not who is "footing" the bill. I worked with Tihana for several years and she did work and worked hard. I am sure that if she had another choice other than using Medicaid she would be doing so ... as far as her nationality she has gotten her American citizenship which should not make a difference anyway. She is a human being and that is what matters ... lets hope that "confused" does not ever have to depend on state funded resources one day.
Tihana, I hope it helps a little to know that those of us who are or have been on dialysis & the transplant list well know what you are going through.
It is, alas, inevitable in this country that are people who will make unkind comments about those who require government assistance to stay alive with this disease. Please know that not everyone thinks like that.
Sending prayers to you & your sister & fervently hoping you get "the call" soon.
Thanks to everyone that DO understand
God bless !
Thanks for the kind words.