Ugarte Family Expenses #FOF
Donation protected
August 2015
In order to get a dual kidney/liver transplant, Roma Ugarte has had to move to Tennessee. She’s left her home, her brothers, her friends and her mother in Gresham Oregon and now lives in a one bedroom apartment in Memphis with her dad. This is the history...
Fall 1998-May 1999
Just before her fifth birthday, Roma became ill. After several months of testing it was determined that both of her kidneys were failing. She would need dialysis until a transplant could be arranged. Her dad was a match and a month after Roma’s fifth birthday, she received her new kidney. That kidney and a lot of medications helped Roma to live a fairly normal life.
2008-2012
In high school, Roma’s health deteriorated as her body began to win the fight to reject her dad’s kidney. She began a regiment which included more medical appointments, more and different medications, hospital stays for various treatments and an increasing need for sleep. Dancing was good exercise for Roma after she had her transplant and something she enjoyed. By the time she reached her senior year, she was unable to fully participate on her dance team because of her health.
Doctors were also finding out more about Roma’s disease. They changed her diagnosis to Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis - ARPKD/CHF. This means that not only was her dad’s kidney no longer functioning as it had, her liver was also not working fully. It was time to begin dialysis.
Fall 2012 - Summer 2013
Roma tried to attend some community college after high school but her deteriorating health and increasing need for sleep made it impossible. She was also spending periods of time in the hospital for various treatments in order to extend the life of her kidney. It was finally determined that she was in full kidney failure and needed to begin dialysis.
Roma began dialysis the summer of 2013. She went three times a week to be connected to a dialysis machine. This four hour treatment cleans her blood which ultimately kept her alive. This is an uncomfortable process which exhausts her and is often painful due to cramping and muscle spasms. It also required an procedure called a fistula in her arm. This is used to do the dialysis.
Because Roma's condition caused liver deterioration there was some difficulty determining her treatment. Did she need a liver now or would it hold on for a while longer. Did she need a dual kidney/liver transplant? The family was working with Doctors at Doernbecher, Children's Hospital in Poetland Oregon, in conjunction with Oregon Health and Science University. Roma was put in touch with Stanford Children’s Hospital in Stanford California.
Summer 2014
Roma, Ed and Julie went to Stanford in July to be tested. The family was very hopeful for this to work out because it would mean Roma could continue to live at home and fly to Stanford when a donor became available. Their wish came true and Roma was accepted into the transplant program at Stanford. Now it was just a matter of time, waiting for someone who was willing to donate their kidney and liver after they passed away. There was a list of people needing this though. The worse you are, the higher on the list you were. But still, the organs also had to be a match.
Spring 2015
Sanford suggested that Roma look into the Tennessee transplant program as she would have a shorter wait there. They had less people on their list but had more donors. This was a shock to the family. After lots of conversations, sending of medical test results, new test and a visit to Memphis to learn about the program and for the team and the family to meet and do an evaluation.
Summer 2015
The Methodist Transplant Institute in Memphis Tennessee approved her for a dual transplant. The request for treatment then went to insurance who also approved the transplant. And then everything in the Ugarte family changed.
August 8, 2015
Ed and Julie, Roma’s parents, filled a car with everything they might want with them in Memphis and drove 5 days from Gresham to Memphis. Roma flew out on the 12th to meet them there. The family was very lucky to get a reduced-rent furnished apartment near the hospital. It is small, just 1 bedroom. Ed will sleep on the sofa hide-a-bed. Julie flew back to Portland to be with their sons. The plan was for them to trade places in a month or so.
September 27, 2015 - The Call!
Sunday morning Roma received the call that there was a person who passed away and there were organs available for her! Ever seen a bigger smile?!
Roma and Ed went to the hospital, Julie hurried to get to the Portland airport to catch a flight. Our family here saw her off. Because the removal of organs takes time, we had time to send messages and phone calls to Roma and Ed. Roma spent some time reading messages from friends and family on her phone and Facebook. Roma was taken into surgery about the time Julie was leaving Denver.
Sunday/Monday
The surgeons worked through the night removing Roma's old liver and her dad's kidney and then put in the kidney and liver from the donor. She has two new large incisions to go with the one she has from her previous surgery. Mom and dad were updated through the night and were able to see her come out of surgery. The picture on the cover of this page is the three of them right after they had a few minutes alone together. You can almost read the Faith Over Fear tattoo on her finger. This is Roma with her dad.
This is Roma after the tubes were out, feeling more awake.
Today - Monday, September 28, 2015
Roma is doing very, very well this afternoon. Her kidney is working, a lot! She is feeling pretty good, and looking very happy!
If you would like to read more about Roma and her story, please go to https://www.facebook.com/OurDaughtersJourney
In order to get a dual kidney/liver transplant, Roma Ugarte has had to move to Tennessee. She’s left her home, her brothers, her friends and her mother in Gresham Oregon and now lives in a one bedroom apartment in Memphis with her dad. This is the history...
Fall 1998-May 1999
Just before her fifth birthday, Roma became ill. After several months of testing it was determined that both of her kidneys were failing. She would need dialysis until a transplant could be arranged. Her dad was a match and a month after Roma’s fifth birthday, she received her new kidney. That kidney and a lot of medications helped Roma to live a fairly normal life.
2008-2012
In high school, Roma’s health deteriorated as her body began to win the fight to reject her dad’s kidney. She began a regiment which included more medical appointments, more and different medications, hospital stays for various treatments and an increasing need for sleep. Dancing was good exercise for Roma after she had her transplant and something she enjoyed. By the time she reached her senior year, she was unable to fully participate on her dance team because of her health.
Doctors were also finding out more about Roma’s disease. They changed her diagnosis to Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis - ARPKD/CHF. This means that not only was her dad’s kidney no longer functioning as it had, her liver was also not working fully. It was time to begin dialysis.
Fall 2012 - Summer 2013
Roma tried to attend some community college after high school but her deteriorating health and increasing need for sleep made it impossible. She was also spending periods of time in the hospital for various treatments in order to extend the life of her kidney. It was finally determined that she was in full kidney failure and needed to begin dialysis.
Roma began dialysis the summer of 2013. She went three times a week to be connected to a dialysis machine. This four hour treatment cleans her blood which ultimately kept her alive. This is an uncomfortable process which exhausts her and is often painful due to cramping and muscle spasms. It also required an procedure called a fistula in her arm. This is used to do the dialysis.
Because Roma's condition caused liver deterioration there was some difficulty determining her treatment. Did she need a liver now or would it hold on for a while longer. Did she need a dual kidney/liver transplant? The family was working with Doctors at Doernbecher, Children's Hospital in Poetland Oregon, in conjunction with Oregon Health and Science University. Roma was put in touch with Stanford Children’s Hospital in Stanford California.
Summer 2014
Roma, Ed and Julie went to Stanford in July to be tested. The family was very hopeful for this to work out because it would mean Roma could continue to live at home and fly to Stanford when a donor became available. Their wish came true and Roma was accepted into the transplant program at Stanford. Now it was just a matter of time, waiting for someone who was willing to donate their kidney and liver after they passed away. There was a list of people needing this though. The worse you are, the higher on the list you were. But still, the organs also had to be a match.
Spring 2015
Sanford suggested that Roma look into the Tennessee transplant program as she would have a shorter wait there. They had less people on their list but had more donors. This was a shock to the family. After lots of conversations, sending of medical test results, new test and a visit to Memphis to learn about the program and for the team and the family to meet and do an evaluation.
Summer 2015
The Methodist Transplant Institute in Memphis Tennessee approved her for a dual transplant. The request for treatment then went to insurance who also approved the transplant. And then everything in the Ugarte family changed.
August 8, 2015
Ed and Julie, Roma’s parents, filled a car with everything they might want with them in Memphis and drove 5 days from Gresham to Memphis. Roma flew out on the 12th to meet them there. The family was very lucky to get a reduced-rent furnished apartment near the hospital. It is small, just 1 bedroom. Ed will sleep on the sofa hide-a-bed. Julie flew back to Portland to be with their sons. The plan was for them to trade places in a month or so.
September 27, 2015 - The Call!
Sunday morning Roma received the call that there was a person who passed away and there were organs available for her! Ever seen a bigger smile?!
Roma and Ed went to the hospital, Julie hurried to get to the Portland airport to catch a flight. Our family here saw her off. Because the removal of organs takes time, we had time to send messages and phone calls to Roma and Ed. Roma spent some time reading messages from friends and family on her phone and Facebook. Roma was taken into surgery about the time Julie was leaving Denver.
Sunday/Monday
The surgeons worked through the night removing Roma's old liver and her dad's kidney and then put in the kidney and liver from the donor. She has two new large incisions to go with the one she has from her previous surgery. Mom and dad were updated through the night and were able to see her come out of surgery. The picture on the cover of this page is the three of them right after they had a few minutes alone together. You can almost read the Faith Over Fear tattoo on her finger. This is Roma with her dad.
This is Roma after the tubes were out, feeling more awake.
Today - Monday, September 28, 2015
Roma is doing very, very well this afternoon. Her kidney is working, a lot! She is feeling pretty good, and looking very happy!
If you would like to read more about Roma and her story, please go to https://www.facebook.com/OurDaughtersJourney
Organizer and beneficiary
Gina Granato
Organizer
Gresham, OR
Julie Ugarte
Beneficiary
