11
Dialysis: F.A.Q. (Frequently Asked Questions) / Re: What is the longest a patient has survived on dialysis?
« Last post by iolaire on February 06, 2023, 05:21:50 AM »That was a good run. Thanks for sharing this and the other stories.
Recent Posts
12
Dialysis: Transplant Discussion / Re: What is the longest a recipient has survived with a kidney transplant?
« Last post by okarol on February 02, 2023, 11:50:39 AM »His sister’s kidney has lasted 56 years and counting
Missouri farmer, 80, boasts one of the world’s longest lasting transplanted kidneys. His sister’s kidney has lasted 56 years and counting.
Back in 1966, when kidney transplants were new and dangerous, Butch Newman was days from death. Then his younger sister stepped up. She was a perfect match.
https://www.uchealth.org/today/missouri-farmer-boasts-one-of-the-worlds-longest-lasting-transplanted-kidneys/
Missouri farmer, 80, boasts one of the world’s longest lasting transplanted kidneys. His sister’s kidney has lasted 56 years and counting.
Back in 1966, when kidney transplants were new and dangerous, Butch Newman was days from death. Then his younger sister stepped up. She was a perfect match.
https://www.uchealth.org/today/missouri-farmer-boasts-one-of-the-worlds-longest-lasting-transplanted-kidneys/
13
Dialysis: F.A.Q. (Frequently Asked Questions) / Re: What is the longest a patient has survived on dialysis?
« Last post by okarol on February 02, 2023, 11:44:43 AM »World’s longest surviving kidney patient dies
Mercer Island resident Nancy Spaeth went on dialysis at age 18 and received four kidney transplants.
By Hannah Saunders • February 20, 2022 11:38 am
Nancy Spaeth was a nurse, mother, patient, patient advocate, dialysis pioneer, kidney transplant recipient and volunteer.
After developing kidney problems as a child, Nancy Spaeth, the world’s longest surviving kidney patient, died on Jan. 14 at age 74.
“It takes a very big personality to deal with kidney failure and being on dialysis. It takes an even bigger personality to step across the line of dealing with your own health issues to help and inspire others to deal with theirs,” said Katy Wilkens, who was a student dietician at Northwest Kidney Centers in 1975 when she first met Spaeth. “Nancy was a petite person physically, with the biggest personality to help others that I have ever known.”
Nancy began seventh-grade in 1959, which was when she noticed that brushing her thick, wavy, blonde hair became difficult. It also became difficult for the relay runner to race, and one day she noticed that her urine was brown.
After a visit with her doctor, and upon further diagnostic testing, she was diagnosed with Bright’s Disease, or glomerulonephritis. Bright’s Disease causes inflammation and damage to the portion of the kidneys that acts as a filter, and Spaeth’s doctors believed it was caused by numerous yellow jacket stings she had received while hiking in the Cascades the previous summer.
To rid her body of the illness, she was given high doses of prednisone, as well as nitrogen mustard, which caused her to slip in and out of consciousness for days following the treatment.
During fall of 1965, she began attending the University of Arizona, but by February 1966, she grew tired of vomiting in planter boxes outside of her physics class. Spaeth moved back to Seattle that year, continued her studies at the University of Washington, then transferred to Seattle University.
At the time, treatment for chronic kidney failure was still young, and patients of dialysis would need something called a Scribner shunt. At Seattle Artificial Kidney Center, a community panel known as the Admissions and Policy Committee decided which patients would receive dialysis. Spaeth referred to this panel as “The Life and Death Committee.”
The committee process consisted of a visit with a psychiatrist and psychological testing. Spaeth’s family also needed adequate insurance to afford the $30,000 cost. The committee was looking for individuals who could recover and go on to work or contribute to society, according to Spaeth.
Spaeth was selected by the committee to receive dialysis, which she began at the Seattle Artificial Kidney Center on Dec. 26, 1966. Nancy spent a year and a half of receiving in-center dialysis while she was a full-time college student and went on to receive three months of training to begin home dialysis.
She described herself as a normal student who went to parties with friends and dated men, but on the flipside, went to bed on dialysis three nights a week for eight hours, and avoided salt at all costs.
In 1970, Spaeth graduated from Seattle University with a bachelor’s degree in education. Two years later, she received her first kidney transplant from her youngest brother, Charlie, during his spring break from Stanford University.
Spaeth got married and had two children: her first, Joshua, in 1974, and her second child, Sarah, in 1976. She worked as a substitute teacher for K-12 students in the Forks School District, but returned to college to earn a nursing degree in 1979.
In 1979, Nancy Spaeth got food poisoning and lost her kidney transplant. She also divorced from her husband that year.
She received her second transplant, a cadaveric transplant, in 1981, but it failed in 1986, and she went back on dialysis.
Throughout her life, Spaeth participated in numerous research studies. She was accepted into an erythropoietin study at Northwest Kidney Centers (NKC), which made her body feel better, and she became more active. By 1989, the Food and Drug Administration approved the use of Epogen.
Spaeth received her third kidney transplant in 1989, which she lost in 1995 due to chronic rejection. By 2000, Spaeth received her fourth and final kidney transplant.
Not only was Spaeth a patient, but she was also a supporter of the world leading dialysis provider, Northwest Kidney Centers. She served on the Foundation Board and Board Quality Committee.
Spaeth was a pioneer and an activist when it came to kidney disease. She testified on behalf of kidney patients to both the state and federal levels.
“Nancy was a force for good, a constant advocate and friend to kidney patients,” said Peter Raffa, former Executive Director of Northwest Kidney Foundation. “We went onto educate our elected officials in both Washingtons. Raising more than a few dollars along the way. Nancy singing the praises of NKC, her personal story, love for her family and nursing career. Nancy will be missed by all of us, but oh what a life well lived. NKC’s mission personified.”
https://www.auburn-reporter.com/life/worlds-longest-surviving-kidney-patient-dies
Mercer Island resident Nancy Spaeth went on dialysis at age 18 and received four kidney transplants.
By Hannah Saunders • February 20, 2022 11:38 am
Nancy Spaeth was a nurse, mother, patient, patient advocate, dialysis pioneer, kidney transplant recipient and volunteer.
After developing kidney problems as a child, Nancy Spaeth, the world’s longest surviving kidney patient, died on Jan. 14 at age 74.
“It takes a very big personality to deal with kidney failure and being on dialysis. It takes an even bigger personality to step across the line of dealing with your own health issues to help and inspire others to deal with theirs,” said Katy Wilkens, who was a student dietician at Northwest Kidney Centers in 1975 when she first met Spaeth. “Nancy was a petite person physically, with the biggest personality to help others that I have ever known.”
Nancy began seventh-grade in 1959, which was when she noticed that brushing her thick, wavy, blonde hair became difficult. It also became difficult for the relay runner to race, and one day she noticed that her urine was brown.
After a visit with her doctor, and upon further diagnostic testing, she was diagnosed with Bright’s Disease, or glomerulonephritis. Bright’s Disease causes inflammation and damage to the portion of the kidneys that acts as a filter, and Spaeth’s doctors believed it was caused by numerous yellow jacket stings she had received while hiking in the Cascades the previous summer.
To rid her body of the illness, she was given high doses of prednisone, as well as nitrogen mustard, which caused her to slip in and out of consciousness for days following the treatment.
During fall of 1965, she began attending the University of Arizona, but by February 1966, she grew tired of vomiting in planter boxes outside of her physics class. Spaeth moved back to Seattle that year, continued her studies at the University of Washington, then transferred to Seattle University.
At the time, treatment for chronic kidney failure was still young, and patients of dialysis would need something called a Scribner shunt. At Seattle Artificial Kidney Center, a community panel known as the Admissions and Policy Committee decided which patients would receive dialysis. Spaeth referred to this panel as “The Life and Death Committee.”
The committee process consisted of a visit with a psychiatrist and psychological testing. Spaeth’s family also needed adequate insurance to afford the $30,000 cost. The committee was looking for individuals who could recover and go on to work or contribute to society, according to Spaeth.
Spaeth was selected by the committee to receive dialysis, which she began at the Seattle Artificial Kidney Center on Dec. 26, 1966. Nancy spent a year and a half of receiving in-center dialysis while she was a full-time college student and went on to receive three months of training to begin home dialysis.
She described herself as a normal student who went to parties with friends and dated men, but on the flipside, went to bed on dialysis three nights a week for eight hours, and avoided salt at all costs.
In 1970, Spaeth graduated from Seattle University with a bachelor’s degree in education. Two years later, she received her first kidney transplant from her youngest brother, Charlie, during his spring break from Stanford University.
Spaeth got married and had two children: her first, Joshua, in 1974, and her second child, Sarah, in 1976. She worked as a substitute teacher for K-12 students in the Forks School District, but returned to college to earn a nursing degree in 1979.
In 1979, Nancy Spaeth got food poisoning and lost her kidney transplant. She also divorced from her husband that year.
She received her second transplant, a cadaveric transplant, in 1981, but it failed in 1986, and she went back on dialysis.
Throughout her life, Spaeth participated in numerous research studies. She was accepted into an erythropoietin study at Northwest Kidney Centers (NKC), which made her body feel better, and she became more active. By 1989, the Food and Drug Administration approved the use of Epogen.
Spaeth received her third kidney transplant in 1989, which she lost in 1995 due to chronic rejection. By 2000, Spaeth received her fourth and final kidney transplant.
Not only was Spaeth a patient, but she was also a supporter of the world leading dialysis provider, Northwest Kidney Centers. She served on the Foundation Board and Board Quality Committee.
Spaeth was a pioneer and an activist when it came to kidney disease. She testified on behalf of kidney patients to both the state and federal levels.
“Nancy was a force for good, a constant advocate and friend to kidney patients,” said Peter Raffa, former Executive Director of Northwest Kidney Foundation. “We went onto educate our elected officials in both Washingtons. Raising more than a few dollars along the way. Nancy singing the praises of NKC, her personal story, love for her family and nursing career. Nancy will be missed by all of us, but oh what a life well lived. NKC’s mission personified.”
https://www.auburn-reporter.com/life/worlds-longest-surviving-kidney-patient-dies
14
Dialysis: News Articles / U.S. FDA approves first oral anemia drug for patients on dialysis
« Last post by okarol on February 02, 2023, 09:39:34 AM »U.S. FDA approves first oral anemia drug for patients on dialysis
FDA Approves Daprodustat, First Oral Anemia Treatment
Mitchel L. Zoler, PhD
February 02, 2023
The US Food and Drug Administration approved the first oral treatment for anemia on February 1, specifying that daprodustat (Jesduvroq) was labeled for anemia caused by chronic kidney disease (CKD) in adults who have been on dialysis for at least 4 months.
In announcing this, the FDA's statement highlighted that daprodustat is not approved for use by patients not on dialysis even if they have advanced-stage CKD, a condition notorious for often triggering significant anemia that requires treatment. The only existing treatment options for these patients are injected stimulants of red blood cell production (erythropoiesis-stimulating agents [ESAs]) or blood transfusions.
"With an oral drug option in addition to the FDA-approved injection options, adults with chronic kidney disease on dialysis now have multiple ways to treat their anemia," said the FDA's Ann Farrell, MD, in the agency's announcement.
"This approval demonstrates the FDA's commitment to helping bring a range of therapeutic options to patients with chronic diseases. Patients can consult with their healthcare providers to select the option that is most appropriate," added Farrell, director of the Division of Non-Malignant Hematology in the FDA's Center for Drug Evaluation and Research in Silver Spring, Maryland.
The agency's approval of daprodustat for patients on dialysis but not for patients with CKD and anemia who are not on dialysis was consistent with the recommendations it received from the advisory committee that considered daprodustat in a meeting on October 26, 2022. At that session, the advisory committee voted 13-3 that the benefits of daprodustat outweigh its risks for treating anemia in adults with CKD and on dialysis, but it also voted 11-5 against the proposition that daprodustat's benefits outweighed its risks in patients with CKD who do not require dialysis.
The Focus Is Safety
The advisory committee's split vote on daprodustat focused on safety concerns raised by results of the two large, pivotal trials for the agent, ASCEND-D (in patients on dialysis) and ASCEND-ND (in patients not on dialysis), both published in late 2021 in The New England Journal of Medicine. Both trials compared the safety and efficacy of oral daprodustat with injected treatment with an ESA, the currently preferred approach to treating anemia in all patients with CKD.
FDA staffers who spoke during the advisory committee meeting acknowledged that daprodustat's effectiveness, as documented in both trials, was not the issue. The agency agreed that "substantial evidence of effectiveness is established," said Justin Penzenstadler, PharmD, a clinical reviewer in the FDA Office of Cardiology, Hematology, and Nephrology.
Penzenstadler also cited the potential convenience of an oral agent for treating anemia compared with infusing or injecting an ESA, which requires patients to travel to receive treatment.
Intense scrutiny of daprodustat's safety by both the advisory committee and the FDA's staff stemmed in part from the history of two other agents from the same class as daprodustat — roxadustat and vadadustat — that both failed to receive approval because of safety concerns.
A Boxed Warning
Safety qualifications highlight daprodustat's new label, which the FDA said will include a boxed warning stating that treatment with the agent risks causing blood clots that can trigger thrombotic vascular events including death; myocardial infarction; stroke; and blood clots in the lungs, legs, or dialysis access site. Other warnings and precautions include risks for hospitalization for heart failure, worsening hypertension, stomach erosions, and gastrointestinal bleeding.
The FDA's approval statement also listed the most common adverse effects of daprodustat as hypertension, thrombotic vascular events, abdominal pain, dizziness, and allergic reactions. In addition, the agency advised that patients should not use daprodustat if they also take certain drugs that cause increased serum levels of the drug or if they have uncontrolled high blood pressure.
A statement released by GSK, the company that has developed and will market daprodustat, added these additional safety warnings and qualifications: "No trial has identified a hemoglobin target level, dose of Jesduvroq, or dosing strategy that does not increase" the risk for death and arterial venous thrombotic events. "Use the lowest dose of Jesduvroq sufficient to reduce the need for red blood cell transfusions. Jesduvroq has not been shown to improve quality of life, fatigue, or patient well-being. Jesduvroq is not indicated for use as a substitute for red blood cell transfusions in patients who require immediate correction of anemia."
The drug class that daprodustat, roxadustat, and vadadustat all belong to is the hypoxia-inducible factor (HIF) prolyl hydroxylase inhibitors, which stabilize HIF and thereby increase the secretion of endogenous erythropoietin and the production of red cells. This approach to resolving anemia mimics the physiologic effects that occur in people when they are at high altitudes.
According to the GSK statement, CKD affects approximately 39 million people in the United States and about 6 million of these people also have anemia. Approximately 810,000 of these people with CKD have end-stage renal disease, including about 558,000 patients on treatment with dialysis.
The ASCEND-D and ASCEND-ND trials were sponsored by GSK. Farrell and Penzenstadler had no disclosures.
Mitchel L. Zoler is a reporter for Medscape and MDedge based in the Philadelphia area. Twitter: @mitchelzoler
For more news, follow Medscape on Facebook, Twitter, Instagram, and YouTube
https://www.medscape.com/viewarticle/987789
FDA Approves Daprodustat, First Oral Anemia Treatment
Mitchel L. Zoler, PhD
February 02, 2023
The US Food and Drug Administration approved the first oral treatment for anemia on February 1, specifying that daprodustat (Jesduvroq) was labeled for anemia caused by chronic kidney disease (CKD) in adults who have been on dialysis for at least 4 months.
In announcing this, the FDA's statement highlighted that daprodustat is not approved for use by patients not on dialysis even if they have advanced-stage CKD, a condition notorious for often triggering significant anemia that requires treatment. The only existing treatment options for these patients are injected stimulants of red blood cell production (erythropoiesis-stimulating agents [ESAs]) or blood transfusions.
"With an oral drug option in addition to the FDA-approved injection options, adults with chronic kidney disease on dialysis now have multiple ways to treat their anemia," said the FDA's Ann Farrell, MD, in the agency's announcement.
"This approval demonstrates the FDA's commitment to helping bring a range of therapeutic options to patients with chronic diseases. Patients can consult with their healthcare providers to select the option that is most appropriate," added Farrell, director of the Division of Non-Malignant Hematology in the FDA's Center for Drug Evaluation and Research in Silver Spring, Maryland.
The agency's approval of daprodustat for patients on dialysis but not for patients with CKD and anemia who are not on dialysis was consistent with the recommendations it received from the advisory committee that considered daprodustat in a meeting on October 26, 2022. At that session, the advisory committee voted 13-3 that the benefits of daprodustat outweigh its risks for treating anemia in adults with CKD and on dialysis, but it also voted 11-5 against the proposition that daprodustat's benefits outweighed its risks in patients with CKD who do not require dialysis.
The Focus Is Safety
The advisory committee's split vote on daprodustat focused on safety concerns raised by results of the two large, pivotal trials for the agent, ASCEND-D (in patients on dialysis) and ASCEND-ND (in patients not on dialysis), both published in late 2021 in The New England Journal of Medicine. Both trials compared the safety and efficacy of oral daprodustat with injected treatment with an ESA, the currently preferred approach to treating anemia in all patients with CKD.
FDA staffers who spoke during the advisory committee meeting acknowledged that daprodustat's effectiveness, as documented in both trials, was not the issue. The agency agreed that "substantial evidence of effectiveness is established," said Justin Penzenstadler, PharmD, a clinical reviewer in the FDA Office of Cardiology, Hematology, and Nephrology.
Penzenstadler also cited the potential convenience of an oral agent for treating anemia compared with infusing or injecting an ESA, which requires patients to travel to receive treatment.
Intense scrutiny of daprodustat's safety by both the advisory committee and the FDA's staff stemmed in part from the history of two other agents from the same class as daprodustat — roxadustat and vadadustat — that both failed to receive approval because of safety concerns.
A Boxed Warning
Safety qualifications highlight daprodustat's new label, which the FDA said will include a boxed warning stating that treatment with the agent risks causing blood clots that can trigger thrombotic vascular events including death; myocardial infarction; stroke; and blood clots in the lungs, legs, or dialysis access site. Other warnings and precautions include risks for hospitalization for heart failure, worsening hypertension, stomach erosions, and gastrointestinal bleeding.
The FDA's approval statement also listed the most common adverse effects of daprodustat as hypertension, thrombotic vascular events, abdominal pain, dizziness, and allergic reactions. In addition, the agency advised that patients should not use daprodustat if they also take certain drugs that cause increased serum levels of the drug or if they have uncontrolled high blood pressure.
A statement released by GSK, the company that has developed and will market daprodustat, added these additional safety warnings and qualifications: "No trial has identified a hemoglobin target level, dose of Jesduvroq, or dosing strategy that does not increase" the risk for death and arterial venous thrombotic events. "Use the lowest dose of Jesduvroq sufficient to reduce the need for red blood cell transfusions. Jesduvroq has not been shown to improve quality of life, fatigue, or patient well-being. Jesduvroq is not indicated for use as a substitute for red blood cell transfusions in patients who require immediate correction of anemia."
The drug class that daprodustat, roxadustat, and vadadustat all belong to is the hypoxia-inducible factor (HIF) prolyl hydroxylase inhibitors, which stabilize HIF and thereby increase the secretion of endogenous erythropoietin and the production of red cells. This approach to resolving anemia mimics the physiologic effects that occur in people when they are at high altitudes.
According to the GSK statement, CKD affects approximately 39 million people in the United States and about 6 million of these people also have anemia. Approximately 810,000 of these people with CKD have end-stage renal disease, including about 558,000 patients on treatment with dialysis.
The ASCEND-D and ASCEND-ND trials were sponsored by GSK. Farrell and Penzenstadler had no disclosures.
Mitchel L. Zoler is a reporter for Medscape and MDedge based in the Philadelphia area. Twitter: @mitchelzoler
For more news, follow Medscape on Facebook, Twitter, Instagram, and YouTube
https://www.medscape.com/viewarticle/987789
15
Dialysis: News Articles / Re: Opinion: The nightmare of dialysis
« Last post by cassandra on February 01, 2023, 06:44:27 AM »Thanx for posting Okarol. I forwarded the link to some family members and friends 
Just because I can. I’ve been doing this nonsense for 27 years now, and that’s besides the 13 years I enjoyed my dad’s kidney.
Too late for me for a TX, but Home D (peritoneal and hemo) really are a (not as horrific ) alternative.
Just because I can. I’ve been doing this nonsense for 27 years now, and that’s besides the 13 years I enjoyed my dad’s kidney.
Too late for me for a TX, but Home D (peritoneal and hemo) really are a (not as horrific ) alternative.
16
Advocacy / Rare Kidney Disease Foundation
« Last post by SooMK on January 30, 2023, 01:18:32 PM »I have recently started volunteering with the Rare Kidney Disease Foundation. It is an advocacy group for patients of ADTKD, either UMOD or MUC1. Everyone is a volunteer. We are excited by possible treatments for this genetic disease. One of our goals is to try to find as many patients who don't know they have these diseases and refer them for free testing. It is suspected it is far more common than is realized.
These are the questions that can help direct you for testing:
Do several of your family members have kidney failure?
Has your doctor said you have an inherited kidney disease, but he or she isn’t sure of the exact name?
Has a disease run in your family for a long time, but no one knows what it is?
If you are asking yourself any of these questions, you may qualify for a free genetic test to determine if you have ADTKD.
Rare Kidney Disease Foundation, https://www.rarekidney.org/genetic-testing
These are the questions that can help direct you for testing:
Do several of your family members have kidney failure?
Has your doctor said you have an inherited kidney disease, but he or she isn’t sure of the exact name?
Has a disease run in your family for a long time, but no one knows what it is?
If you are asking yourself any of these questions, you may qualify for a free genetic test to determine if you have ADTKD.
Rare Kidney Disease Foundation, https://www.rarekidney.org/genetic-testing
17
Dialysis: News Articles / Re: Opinion: The nightmare of dialysis
« Last post by SooMK on January 30, 2023, 01:08:16 PM »This link got a 404 error but I found it here:
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html
It took maybe three minutes to read and it is frightening and heartbreaking. I think of my Mom and what she went through. I'm thinking of my family members and what they may have in their future and I think what I have avoided, so far.
Thank you for posting.
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html
It took maybe three minutes to read and it is frightening and heartbreaking. I think of my Mom and what she went through. I'm thinking of my family members and what they may have in their future and I think what I have avoided, so far.
Thank you for posting.
18
Dialysis: Transplant Discussion / Re: Referrals?
« Last post by MooseMom on January 30, 2023, 08:28:45 AM »I hope someone from the UK can help you with your questions because the answers really depend upon which kind of system governs your access to healthcare.
When I moved back to the US, I saw a GP to whom I told my history of fsgs. He ran labs and referred me to a nephrologist within the practice, and it was the neph who I saw on a regular basis. He was the one who prescribed and managed the various meds he put me on when he saw just how bad my renal function was. He was also the one who referred me to a Chicago based transplant hospital when it came time to be listed.
After a two year wait, my neph referred me to another transplant hospital in Madison, WI, which is where I got my transplant.
Now, 10 years later, I see my GP for anything/everything not related to my transplant. He is the one who manages my BP meds and a statin, while my tx coordinator manages my immunosuppressants. My clinic isn't interested in things like cancer screenings or bodily injuries; those sorts of things are managed by my GP. If I were to get in an accident or get some illness unrelated to my transplant, I'd go through my GP but would let my tx clinic know.
Does that help?
When I moved back to the US, I saw a GP to whom I told my history of fsgs. He ran labs and referred me to a nephrologist within the practice, and it was the neph who I saw on a regular basis. He was the one who prescribed and managed the various meds he put me on when he saw just how bad my renal function was. He was also the one who referred me to a Chicago based transplant hospital when it came time to be listed.
After a two year wait, my neph referred me to another transplant hospital in Madison, WI, which is where I got my transplant.
Now, 10 years later, I see my GP for anything/everything not related to my transplant. He is the one who manages my BP meds and a statin, while my tx coordinator manages my immunosuppressants. My clinic isn't interested in things like cancer screenings or bodily injuries; those sorts of things are managed by my GP. If I were to get in an accident or get some illness unrelated to my transplant, I'd go through my GP but would let my tx clinic know.
Does that help?
19
Dialysis: News Articles / Opinion: The nightmare of dialysis
« Last post by okarol on January 30, 2023, 02:19:19 AM »Opinion: The nightmare of dialysis
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html
Edited: link corrected
okarol, admin
https://pantagraph.com/opinion/columnists/hale-the-nightmare-of-dialysis/article_ef9ad77a-990e-11ed-8102-273272cb66e9.html
Edited: link corrected
okarol, admin
20
Dialysis: Pre-Dialysis / Re: How bad did it get.
« Last post by okarol on January 30, 2023, 02:14:49 AM »I am not going to speak for okarol, but I do believe that her comments were misunderstood.
One has to understand that those needing a kidney (or those seeking an altruistic living liver donor) are (mostly) already on dialysis and have gone through the proper transplantation work-up like any and all patients that have been approved for transplant.
The doctor, nurses, medical team, etc have done their part for approval and signing off on the paper work to get someone listed. As I understand it, people are listed on the same list as those awaiting a deceased donor, but if they find a living match (which doctors will tell you are preferred), it could really move things forward quickly. There are some locations that people wait 7 years or more for that call, but if they can find a willing donor, they can go through the approval process and a surgical date can be scheduled. So, potentially, yes, someone could remain on dialysis for years longer if they did not find a living donor match.
At the meeting with my transplant coordinator (when I needed to sign off on forms), I was advised that I would be listed on the deceased donor list, but in the meantime, I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much. And anyway, I eventually pursued a double organ transplant, so it was best to wait on the deceased list.
That said, there is a push for people to find their own donors. And yes, this has medically-minded people approval. Here is a "How to" fact sheet from a national organization here: https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor
Here is a heartwarming story that swept the nation because it was hockey related: https://www.goodmorningamerica.com/wellness/story/hockey-fan-asked-kidney-homemade-sign-game-found-59337896
This article discusses how "rich" and "cute" people have a leg up on the rest of us average adults because people are more drawn into their stories. For example, I have a family member that got tested to donate to a child that needed a kidney, but never tested to see if he'd be a match for me, because the kid was cute. Even raised funds for them.It was for this reason I never sought out a living donor...no one would want to donate to an Eastern European woman that looks like ringleader of a Balkan crime gang though I too was a (not as cute) sick kid. And hundreds of people came forward to get tested to see if they were a match to a billionaire.
https://www.thestar.com/news/gta/2016/10/23/organs-for-the-rich-and-cute-should-patients-campaign-for-their-own-donors.html
It all comes down to the kindness of strangers who want to do something for someone. It happens.
One must unravel the idea of "searching to exchange/receive body parts" over the Internet because that takes one into some potentially dark territory that is illegal, and not what looking for a living donor is about. For example: https://www.dailymail.co.uk/news/article-11461933/Mexican-woman-killed-organs-flying-3-000-miles-Peru-meet-man-met-online.html
Also, if we use the term “Frankensteinish”, we contribute to the misinformation and disinformation about organ transplant because a lot of people still hold some really odd thoughts about the procedure. I have been called Frankenstein. I have been called "Living Dead Girl" by people that simply do not understand.
Anyway, in this long meandering post, I just want to say, that yes, people do search out living donors and it is a lot of work to organize. If people want to do that and are great at campaigning, God love'em! There are not doing anything wrong and transplant programs advise that this is an avenue to investigate.
Some of us can't or don't feel comfortable doing it. Others can and pursue it. Good luck to them.
I mean this all in the nicest way too! But I probably just confused more things...
Thank you
