Jackson waiting for lung, heart transplants

BY STACIE BOSTON
Multimedia Reporter
01/05/2017 08:00 AM
Main Cherokee Phoenix
Cherokee Nation citizen Robert Jackson and his wife Dot laugh while performing daily routines. Robert is on a transplant list for a heart and lung, which he could get a call for surgery at anytime. STACIE GUTHRIE/CHEROKEE PHOENIX
BOATMAN, Okla. – After multiple tests and hospital visits, Cherokee Nation citizen Robert Jackson could receive a call anytime from the Cleveland Clinic notifying him that organs are available for his heart and double-lung transplants.

Dot, Robert’s wife, said when notified a jet would pick them up at the Claremore Regional Airport.
“Average wait once you get to this point continues to be about six months on heart-lung. So it could be the next day until we get to that point or we could be sitting here next fall,” she said. “You don’t know because there’s a lot to the match. It’s not a simple process at all. Cleveland (Clinic official) feels that Robert’s just a very good candidate because his kidneys are good, his liver’s good.”

The reason for the transplants, Robert said, is because he was born with a congenital heart defect that eventually caused him to not only need a new heart but also new lungs.

He said doctors told his parents he wouldn’t live to be 6 years old, but at 42 he’s beaten the odds.
“They told me I wouldn’t live until I was 6 years old, told my mom and dad that. Then it was 12, then 18. Said that I’d never graduate. Well, I’m sitting here right now 42 years old, and I have graduated,” he said.

Dot said the transplant is a “drastic, high-risk” surgery, but if something isn’t done the outlook for the next year “isn’t good.”

“If they can’t find a match soon enough, they said if he ended up in the hospital, they’d medical transport him up there and they have the machines called ECMO’s (extracorporeal membrane oxygenation) that basically can breathe and help his heart pump until they can find a match,” she said.

Now, Robert said, they’re waiting for the call and trying to prepare for recovery after the surgery.
“You’ll be in the hospital for at least two months after the surgery then back and forth,” he said.
Dot said the hospital has advised them to save $20,000, which includes the jet price, boarding and any other things they may need while in Cleveland.

“Our insurance will cover up to $10,000 so that means we’ve got 10 more to get. We’ll do whatever we have to do,” she said. “If it gets to the point where we have to start selling the house, the cars and everything else to keep him alive that’s what we do. Then you don’t have anything to come back to so that’s kind of hard, too.”

She said after the surgery Robert would be on medications before being weaned off some of them.

“We’re going to have a medication expense between $350 and $400 a month. He’ll gradually get off some of them, but it’s not like we don’t have a pretty big hurdle in front of us, but you have to take the hurdle,” she said.

Robert said he’s been on the transplant list since 2006 but because his health has been better than others he hasn’t had to be moved up until recently.

“I had a heart attack in 2005, and that day I forced myself to work. I thought I had a sinus infection. Well, kept getting worse and I was going to the bathroom and I couldn’t walk down the hallway. So we went to Claremore Indian Hospital and they sent me to Hillcrest (Medical Center), and Hillcrest is the one that told me in 2005 I had a heart attack,” he said. “In 2006 I was on the list. This is how long I’ve been waiting. They ain’t going to give you organs if you’re doing as good as...me. I can still walk a little ways. Take my own shower. You’re not going to do the surgery unless something absolutely major happens.”

Jackson said later when he visited Barnes-Jewish Hospital in St. Louis he was informed that he would also need a double-lung transplant.

“It seems like every year I go down and down further and further. I came in the house the other night and I couldn’t hardly walk,” he said. “People don’t understand when you can’t breathe how much your body hurts.”

Robert said he tries not to dwell on his conditions but live life the “best” he can.

“If I want to go to Pryor and get an ice cream cone I will,” he said. “I don’t say that I don’t think about it, I do, but I don’t do it all the time. I don’t let it ruin my life because if you did that you’re going to live in misery.”
ᏣᎳᎩ

Boatman, ᎣᎦᎵᎰᎹ. – ᎾᏍᎩᏃ ᎤᎪᏓ ᎢᏳᏩᎪᏗ ᎠᏥᎪᎵᏰᏓ ᎠᎴ ᎠᏂᎦᎾᎦᏘ ᎤᏪᏙᎸ, ᏣᎳᎩ ᎠᏰᎵ ᎨᎳ Robert Jackson ᎡᎵᏊ ᎬᏩᏛᎪᏗ ᏣᎦᏟᏍᏓᏁᎲ ᎾᎿ Cleveland ᎤᎾᏓᎪᎵᏱᏗ ᎠᏥᏃᎯᏎᎯ ᎾᏍᎩ ᎢᏳᏍᏗ ᎠᎦᏘᏴ ᎤᏂᎲᎢ ᎤᎾᏫ ᎠᎴ ᎢᏧᎳ ᏗᎬᏗ ᏧᏬᎳᏕᏍᏙᏗ.

Dot, Robert’s ᎤᏓᎵᎢ, ᎠᏗᏍᎬ ᎾᏍᎩ ᎠᏯᏄᎵ ᏥᏳ ᏫᏛᏣᏂ ᏂᏓᏳᏂᎩᏓ ᎦᎴᎼ ᏥᏳ ᏧᏂᏗᏍᏗ.

“ᎡᎵᏃ ᎠᎦᏘᏛ ᏳᎦᎷᏥ Ꮟ ᏂᎦᏯ ᏑᏓᎵ ᎢᏅᏓ ᎥᎦᏘᏴ ᎾᎿ ᎤᎾᏫ ᎠᎴ ᎧᏬᎳᎶᏍᏙᏗ. ᎾᏍᎩᏃ ᎢᏳᏍᏗ ᏳᎦᎷᏥ ᎥᎦᏌᏘᏴ ᎪᎯᏓ ᏅᏫᏍᏙᎢ ᏏᏃ ᎠᏉᏝᏍᏗ ᎠᎭᏂ ᎤᎳᎪᎲᏍᏗ ᏂᎦᎵᏍᏔᏅ,” ᎠᏗᏍᎬᎢ.

“Ꮭ ᏲᏅᏙ ᎤᎪᏛᏃ ᎠᏓᏅᏖᏗ ᏧᏠᏯ ᎢᏳᎵᏍᏙᏗ. ᏝᏃ ᎠᎯᏓᏊ ᏱᎩ. Cleveland (ᎤᎾᏓᎪᎵᏱᏗ ᏗᏄᎪᏔᏂᏙ) ᎠᏓᏅᏖᏍᎬ ᎾᏍᎩ Robert ᎡᎵᏊ ᏗᎬᏩᏩᏛᏗ ᏅᏗᎦᎵᏍᏙᏗᏍᎬ ᏧᏓᎵ ᏦᏍᏗ ᎨᏒᎢ, ᎠᎴ ᏧᏪᎳᎢ.”

ᏂᏗᎦᎵᏍᏙᏗ ᎾᎿ ᏧᏂᏁᏟᏴᏍᏗ ᏥᎩ, ᎠᏗᏍᎬ Robert, ᏄᏍᏙ ᎤᏕᏅ ᎾᎿ ᎤᏓᏅᏛ ᎤᏓᏂᎵ ᎨᏎ ᎾᏍᎩᏃ ᎤᎾᏫ ᎤᏂᎬᎨ ᎠᎴ ᏧᏬᎳᏕᏍᏙᏗ.

ᎠᏗᏍᎬ ᎠᏂᎦᎾᎦᏘ ᏚᏂᏃᎯᏎᎴ ᏧᎦᏴᎵᎨ Ꮭ ᏑᏓᎵ ᏱᎾᏚᏕᏘᏴᎯ, ᎠᏎᏃ ᏅᎩᏍᎪ ᏔᎵ ᏳᏕᏘᏴᏓ ᏃᏊ ᎢᎸᏍᎩ ᎢᏳᏩᎪᏗ ᏚᎩᏯ.

“ᎬᎩᏃᎯᏎᎸ Ꮭ ᏑᏓᎵ ᏱᏂᏓᏣᏕᏘᏴᎯ, ᎡᏥ ᎠᎴ ᎡᏙᏗ ᎾᏍᏊ ᎤᏠᏯ ᏂᏚᏂᏪᏎᎴ. ᏃᎴ ᏔᎳᏚ, ᎠᎴ ᏁᎳᏚ. ᏃᎴᏍᏊ Ꮭ ᏱᏗᎬᏍᏆᏗ ᏧᎾᏕᎶᏆᏍᏗᎢ. ᎠᏎᏅ ᎠᎭᏂ ᎠᏉᎳ ᏃᏊ ᏅᎩᏍᎪ ᏔᎵ ᏯᏆᏕᏘᏴᏓ, ᎠᎴ ᏓᎩᏍᏆᏓ ᏕᎦᏕᎶᏆᏍᎬ,” ᎠᏗᏍᎬᎢ.

Dot ᎠᏗᏍᎬ ᎾᏍᎩ ᎤᏂᏁᏟᏴᏍᏗ ᎾᎿ “ᎤᎶᏒᏍᏗ, ᎤᏦᏍᏗ” ᎠᏥᏰᎸᏍᏗ, ᎠᏎᏃ ᎪᎱᏍᏗ ᎾᏛᏁᎸᎾ ᏱᎩ ᏫᏓᎧᏃᏗ ᏑᏕᏘᏴᏓ “Ꮭ ᎣᏍᏓ ᏱᎩ.”

“ᎢᏳᏃ ᏄᏂᏩᏛᏓ ᏱᎩ ᎤᏠᏯ ᏗᏙᎵᎦ, ᎠᎾᏗᏍᎬ ᏧᏂᏢᎩ ᎤᏂᏴᏗ, ᏅᏬᏘ ᎬᏗ ᏯᏂᏴᏗ ᎠᎴ ᎪᎱᏍᏗ ᏚᏂᎭ ECMO’S (extracorporeal membrane oxygenation) ᏧᏙᎩᏓ ᎾᎿ ᎬᏩᏬᎳᏕᏍᏙᏗ ᎠᎴ ᎠᏍᏕᎵᏍᎩ ᎤᎾᏫ ᎦᏌᏙᏯᏍᎩ ᎨᎳ ᎠᏂᏩᏗᏍᎬ ᎢᎪᎯᏓ,” ᎠᏗᏍᎬᎢ.

ᏃᏊ, Robert ᎠᏗᏍᎬ, ᎠᏂᎦᏘᏯ ᏂᏓᏳᎾᏟᏃᎮᏗ ᎠᎾᏛᏅᎢᏍᏗᏍᎪ ᎤᏗᏫᏍᎬ ᎤᏂᏰᎳᎸᎢ.

“ᏧᏂᏢᎩ ᎠᏯᎡᏍᏗ ᏔᎵᎭ ᎢᏅᏓ ᎠᏥᏰᏝᎶᏅ ᎠᎴ ᏂᎪᎯᎸ ᎡᏙᎯ,” ᎠᏗᏍᎬᎢ.

Dot ᎠᏗᏍᎬ ᎾᏍᎩ ᏧᏂᏢᎩ ᎤᏂᏃᎯᏎᎸ ᎾᎿ ᏧᎾᎵᏏᏅᏙᏗ ᏔᎵᏍᎪ ᏯᎦᏴᎵ ᎾᏍᎩ ᎠᏠᏯᏍᏗ ᎾᎿ jet ᎤᏣᏅ ᏧᎬᏩᎶᏗ, ᏩᏂᏁᎸᏃ ᎠᎴ ᏧᏓᎴᏅᏓ ᎤᏂᏂᎬᎬ ᎾᎿ ᏩᏁᎲ ClevelandᏂ.

“ᎣᎩᎾᏚᏓᎸ ᏍᎪᎯ ᏯᎦᏴᎵ ᏲᎩᏂᎩᏍᏗ ᎾᏍᎩᏃ ᎢᏳᏍᏗ ᏍᎪᎯ ᏯᎦᏴᎵ Ꮟ ᏦᎩᏂᏩᏛᏗ. ᎢᎦᏲᎩᎾᏛᏗ ᏃᏍᏓᏛᏁ,” ᎠᏗᏍᎬᎢ. “ᎢᏳᏃ ᎣᏍᏗᏁᎸ ᎣᎩᏂᎾᏗᏅᏓ ᏱᎩ, ᎠᎴ ᏗᎦᏚᎴᏂ ᏱᎩ ᎠᎴ ᏂᎦᏓ ᏧᏓᎴᏅᏓ ᎾᎿ ᎤᏗᏫᏍᏗ ᎾᏍᎩ ᏱᏃᏍᏓᏛᎦ. ᏝᏃ ᎪᏇᏍᏗ ᏱᎦᏍᏗᎭ ᎣᎩᏂᎷᎯᏍᏗᎢ.”

ᎠᏥᏰᎳᎶᏅ Robert ᏃᏊ ᏅᏬᏘ ᎤᏙᏗ ᏱᎩ ᏝᎦ ᎤᏍᎦᏃᎵᏃ ᎠᎦᏲᏝᏍᏗ ᏅᏬᏘ ᎬᏗᏍᎨᏍᏗ.

“ᏅᏬᏘᏃ ᏓᎵᎬᏩᏢᏍᎬ 300 ᎠᎴ 400 ᏏᏅᏓ ᎨᏒᎢ. ᏙᎢᏃ ᎦᏱᏅᏓ ᎢᎦᏓ Ꮭ ᏩᏙᏙᏗ ᏱᎨᏎᏍᏗ, ᏙᎯᏃ ᎤᎪᏗ ᏃᎩᎾᎵᏍᏓᏁ ᎠᏎᏃ ᎾᏍᎩ ᏲᎩᎾᏛᏗ.” ᎠᏗᏍᎬᎢ.

Robert ᎠᏗᏍᎬ ᎠᎦᏘᏴ ᏧᏂᏁᏗ ᏗᎧᏬᎳᏕᏍᏙᏗ ᎠᎴ ᎤᎾᏫ 2006 ᏂᏛᎬᏓᎴᏂᏍᎩ ᎣᏏᏊᏃ ᎨᏐ
ᏏᏃ ᎠᏂᏐᎢ ᎨᏒᎢ ᎢᎬᏩᏍᏗ ᎠᎦᏘᏯ.

“ᎠᏆᏓᏅᏛ ᎠᎧᎾᏪᎷᏅ ᎾᎿ 2005 ᏥᎨᏒ ᎠᎴ ᎾᎯᏳ ᎢᎪᎯ ᏍᏓᏯ ᏓᎩᎸᏫᏍᏓᏁᎸ. ᎦᏓᏅᏖᏍᎬ ᎤᏴᏢ ᎠᎩᏂᏱᏍᎬ ᎨᎵᏍᎬ. ᎠᏎᏃ, ᎠᎩᏣᏙᎬ ᏙᏱ ᎤᏁᏓᏍᏗ ᎨᎵᏍᎬ ᎠᎴ ᎠᎩᏄᎸᎲᏍᎬ ᎦᎳᏅᏛ ᏩᎩᎶᎯᏍᏗᎢ. ᎦᎴᎼ ᎣᎩᏁᏅᏒ ᎠᏂᏴᏫᏯ ᏧᏂᏢᎩ ᎠᎴ Hillcrest ᏂᎬᏮᏔᏅᎢ ᏧᏂᏢᎩ, ᎠᎴ ᎾᎿ ᎬᎩᏃᎯᏎᎸ 2005 ᎤᏕᏘᏴᏌᏗᏒ ᎠᏆᏅᏛ ᎠᎧᎾᏪᎷᏅᎢ,” ᎠᏗᏍᎬᎢ. “ᎾᎿ 2006 ᏂᏧᎦᏘᏲ ᎾᏍᎩᏃ ᎾᎪᎯᎸ ᏂᏥᎦᏘᏲᎢ. ᏝᏃ ᏱᏗᎬᎾᏓᎲᏏ ᎣᏏ ᏱᏅᏛᏁ ᏧᎾᏆᏍᏗᏓ….. ᏏᏃ ᎢᏴᏓ ᎦᏂᎩᏍᎪ. ᎠᏋᏌ ᎦᏓᏬᏍᎪ. ᏝᏃ ᏱᎬᎾᏓᏰᎳᎩ ᎬᎿ ᎪᎱᏍᏗ ᏳᎵᏍᏔᏂᏙᎵ.”

Jackson ᎠᏗᏍᎬ ᎣᏂ ᏚᏩᏛᎯᏙᎵ Barnes—Jewish ᏧᏂᏢᎩ ᎾᎿ St.Louis ᎬᏩᏃᎯᏎᎸᏃ ᎤᏂᎬᎬ ᎢᏧᎳ ᏗᎧᏬᎳᏕᏍᏙᏗ .

“ᏄᏫᏍᏙᎢ ᏏᏕᏘᏴᏓ ᏳᎶᏏ ᏩᎦᏙᎢ ᎡᎳᏓ ᏂᎦᎵᏍᏗᏍᎬᎢ. ᎠᎩᏴᏟᏢ ᎦᎵᏦᏕ ᎢᎸᏍᎩ ᏄᏒ ᏥᎨᏒ ᎠᎴ ᏎᎦᏨ ᎦᎢᏒ,” ᎠᏗᏍᎬᎢ. “ ᎠᏂᏴᏫ Ꮭ ᏯᏃᎵᎪ ᏲᏄᎸᎲᏍᎬ ᎧᏬᎳᏕᏍᏗ ᎢᎦ ᎣᏪᎯᏍᏓᏁᎲ ᎥᏰᎸᎢ.”

Robert ᎠᏗᏍᎬ Ꮭ ᎾᏍᎩ ᎢᎦ ᏯᏓᏅᏖᏍᎪᎢ ᏄᎵᏍᏓᏁᎲᎢ ᎠᏎᏃ ᎠᎴᏂᏙᎰ “ᏫᏓᏤᏢ” ᎢᎬᏩᏛᏗ ᎨᏒ ᎾᏛᏁᎰᎢ.

“ᎢᏳᏃ ᏯᏆᏚᎵ ᎠᏇᏅᏍᏗ ᎧᏩᏲᎢ ᎠᎴ ᎤᏅᏓ ᎦᏁᏍᏓᎳᏗᏍᏔᏅ ᏯᏆᏚᎸᎯ ᏫᏥᎩᏍᎪᎢ, ᎠᏗᏍᎬ. “ᏝᏃ ᏂᎦᏓᏅᏖᏍᎬᎾ ᏱᎦᎦᏓ, ᏂᎦᏛᏁᎰᎢ, ᏝᏍᎩᏂ ᏂᎪᎯᎸ ᎾᏍᎩ ᏱᏂᎦᏛᏁᎰᎢ. ᏝᏃ ᏯᏆᎵᏍᎪᎸᏔᏃ ᎡᏍᎦ ᏯᏮᏁᏗᎢ ᎬᏅᎢ ᏂᏗᎦᎵᏍᏙᏗᎢ ᎥᏍᎩ ᏱᎾᏛᏁᎳ ᏂᏓᏤᏢᎾ ᏲᏓᏅᏔ.”

About the Author

stacie-boston@cherokee.org • 918-453-5269

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