Help Mom Beat Ormond’s (disease)
Donation protected
Last Memorial Day, my mom admitted herself into the Emergency Room because she was quietly suffering in pain for weeks, then her symptoms became too much to bear. She said it felt like dull knives were lodged in her lower back, her legs were numb, she had a fever and felt nauseas for days.
The turning point was when she hadn’t eaten, but woke up vomiting. What she’d been feeling for several days was more than a flu, or a virus, it was something else - and very serious. She remained in the hospital for testing and evaluation for 6-days; she wasn't getting better and none of the tests were definitive. After a week, she was transferred to the Mayo Clinic in Rochester, MN (2-hours from her home). It was there she was seen by specialists (Urologists, Rheumatologists, Nephrologist) - some of the world's best doctors.
RPF - The Diagnosis & Disease
Four days before my 40th birthday, the care team at Mayo diagnosed my mom with a rare kidney disease. A small number of cases have ever been reported, and it typically affects men. Had she not gone into the ER when she did, or not have been sent to Mayo, this Memorial Day could've marked the 1-year anniversary of her death.
Instead, Memorial Day will be the annual celebration of her life. God wasn’t ready for her yet. My mom has been diagnosed with Retroperitoneal Fibrosis (RPF) also known as Ormond’s Disease. It is a slowly progressive disorder in which the tubes (ureters) that carry urine from the kidneys to the bladder become blocked by a fibrous mass, and cause inflammation in the back of the abdomen. The disorder causes pain that worsens with time, pain and swelling of the legs, and decreased urine output.
More info: RPF - Ormond's Disease
Her battle with this disease has been a daily struggle. She not only has the disease, but the ureters became logged in her abdomen and lie on a major artery. Because of this, it could not be biopsied or easily moved. Last month, she underwent a life threatening surgery that was actually recorded. It will be used for medical research - due to the rareness of her illness and the complications she faces. We “prepared” for her death last month, before she underwent the surgery. Family gathered, her Will was updated, and discussions were had. As her only child, I still cannot wrap my head around her diagnosis, nor fathom losing her this soon. She is only 61.

The last 12-months have been HELL for my mom. She suffers daily (in ways too personal to share) from an illness that came out of nowhere. My mom doesn’t drink, smoke, or do drugs. She’s lived a clean life and this illness is simply just unfair.
 About My Mom
She works at a small company, and has been there for more than 10 years. She goes to work, church when she can, and home. Her favorite “person” in the whole world is her dog, Romeo. He’s a 7 year-old Mal-Shi (Maltese x Shih Tzu mix). She used to work as a personal in-home health aide for the elderly until she hurt her back. She loves antiques, gardening, bargain shopping at estate sales, and all things Romeo. She lives a very quiet life - and ask anyone - she is the sweetest, kindest person you will ever meet. No one deserves to be sick - especially not my mother.
 My Mom’s Message to Others
“Please, please, please have your blood tested yearly, and do not dismiss chronic pain or discomfort with aging. I consider myself lucky even though I am presently being treated for a disease with a big name and limited funding for a cure. I consider myself lucky because I live in a state with the best care available to treat Retro-peritoneal Fibrosis (RPF). I am grateful to live in Minnesota and the Mayo Clinic saved my life. I believe this disease RPF chose me so that I can help others. I lost kidney function due to this illness and spreading awareness is very important.”
My Mom’s Treatment
Because this disease is so rare, there is no known cure or consensus on the best approach. She has been open and willing to try everything the doctor’s recommended:
• Medication: She tried several different medications during the first few months, such as drugs that suppress the immune system to try and shrink the mass (e.g. Corticosteroids). The medications did not work.
• Urethral Stent (with medication): Because only 1 kidney is functioning, she needed a stent (draining tube) placed in her ureter to provide short-term relief.
• Monthly Procedure: Due to the density of the mass, her stent needed to be replaced more frequently than most: every 3 (weeks) instead of every 3 (months).
• April: My mom underwent a risky, rarely done, and life-threatening surgery.
• Mid-May Post-operation visit at Mayo Clinic.
• Mid-June: Procedure to check the function of the other kidney.
• On-Going: Kidney function analysis and testing, stent if kidney cannot function on its own.
*** How You Can Help ***
A. Please donate if you can, any amount helps offset her expenses.
B. Let me know if there are any foundations or charities I should reach out to for her.
C. Like this page and share it with others.
How the Funds Will Help
Even with insurance and our family's help financially, my mom's medical bills have become too much to bear. From doctor’s bills and insurance co-pays to travel costs and lost wages, her expenses have added up quickly over the year - and will continue. I have started this GoFundMe page to help my mom get the financial assistance she needs. We may not raise enough to cover her financial burdens 100%, but any amount will be a blessing. I know she worries about her bills every moment, and I need her to switch her focus to her health, eating better, walking regularly - just getting healthy again. The money will be used to cover her medical expenses, lost wages, and to get her car repaired.
• (2) ER Visits
• Hospital Stay (15 Days)
• Diagnostics (X-rays, CT Scans, MRIs, etc)
• Monthly stent replacements (required anesthesia, doctor visit, etc)
• Surgery
• Follow-up Appointments (Every 4-Weeks)
• Lost wages due to out of work
• Transportation Costs (Mayo Hospital visits are 4 hours round-trip)
• Auto Repair

The turning point was when she hadn’t eaten, but woke up vomiting. What she’d been feeling for several days was more than a flu, or a virus, it was something else - and very serious. She remained in the hospital for testing and evaluation for 6-days; she wasn't getting better and none of the tests were definitive. After a week, she was transferred to the Mayo Clinic in Rochester, MN (2-hours from her home). It was there she was seen by specialists (Urologists, Rheumatologists, Nephrologist) - some of the world's best doctors.
RPF - The Diagnosis & Disease
Four days before my 40th birthday, the care team at Mayo diagnosed my mom with a rare kidney disease. A small number of cases have ever been reported, and it typically affects men. Had she not gone into the ER when she did, or not have been sent to Mayo, this Memorial Day could've marked the 1-year anniversary of her death.
Instead, Memorial Day will be the annual celebration of her life. God wasn’t ready for her yet. My mom has been diagnosed with Retroperitoneal Fibrosis (RPF) also known as Ormond’s Disease. It is a slowly progressive disorder in which the tubes (ureters) that carry urine from the kidneys to the bladder become blocked by a fibrous mass, and cause inflammation in the back of the abdomen. The disorder causes pain that worsens with time, pain and swelling of the legs, and decreased urine output.
More info: RPF - Ormond's Disease
Her battle with this disease has been a daily struggle. She not only has the disease, but the ureters became logged in her abdomen and lie on a major artery. Because of this, it could not be biopsied or easily moved. Last month, she underwent a life threatening surgery that was actually recorded. It will be used for medical research - due to the rareness of her illness and the complications she faces. We “prepared” for her death last month, before she underwent the surgery. Family gathered, her Will was updated, and discussions were had. As her only child, I still cannot wrap my head around her diagnosis, nor fathom losing her this soon. She is only 61.

The last 12-months have been HELL for my mom. She suffers daily (in ways too personal to share) from an illness that came out of nowhere. My mom doesn’t drink, smoke, or do drugs. She’s lived a clean life and this illness is simply just unfair.
 About My Mom
She works at a small company, and has been there for more than 10 years. She goes to work, church when she can, and home. Her favorite “person” in the whole world is her dog, Romeo. He’s a 7 year-old Mal-Shi (Maltese x Shih Tzu mix). She used to work as a personal in-home health aide for the elderly until she hurt her back. She loves antiques, gardening, bargain shopping at estate sales, and all things Romeo. She lives a very quiet life - and ask anyone - she is the sweetest, kindest person you will ever meet. No one deserves to be sick - especially not my mother.
 My Mom’s Message to Others
“Please, please, please have your blood tested yearly, and do not dismiss chronic pain or discomfort with aging. I consider myself lucky even though I am presently being treated for a disease with a big name and limited funding for a cure. I consider myself lucky because I live in a state with the best care available to treat Retro-peritoneal Fibrosis (RPF). I am grateful to live in Minnesota and the Mayo Clinic saved my life. I believe this disease RPF chose me so that I can help others. I lost kidney function due to this illness and spreading awareness is very important.”
My Mom’s Treatment
Because this disease is so rare, there is no known cure or consensus on the best approach. She has been open and willing to try everything the doctor’s recommended:
• Medication: She tried several different medications during the first few months, such as drugs that suppress the immune system to try and shrink the mass (e.g. Corticosteroids). The medications did not work.
• Urethral Stent (with medication): Because only 1 kidney is functioning, she needed a stent (draining tube) placed in her ureter to provide short-term relief.
• Monthly Procedure: Due to the density of the mass, her stent needed to be replaced more frequently than most: every 3 (weeks) instead of every 3 (months).
• April: My mom underwent a risky, rarely done, and life-threatening surgery.
• Mid-May Post-operation visit at Mayo Clinic.
• Mid-June: Procedure to check the function of the other kidney.
• On-Going: Kidney function analysis and testing, stent if kidney cannot function on its own.
*** How You Can Help ***
A. Please donate if you can, any amount helps offset her expenses.
B. Let me know if there are any foundations or charities I should reach out to for her.
C. Like this page and share it with others.
How the Funds Will Help
Even with insurance and our family's help financially, my mom's medical bills have become too much to bear. From doctor’s bills and insurance co-pays to travel costs and lost wages, her expenses have added up quickly over the year - and will continue. I have started this GoFundMe page to help my mom get the financial assistance she needs. We may not raise enough to cover her financial burdens 100%, but any amount will be a blessing. I know she worries about her bills every moment, and I need her to switch her focus to her health, eating better, walking regularly - just getting healthy again. The money will be used to cover her medical expenses, lost wages, and to get her car repaired.
• (2) ER Visits
• Hospital Stay (15 Days)
• Diagnostics (X-rays, CT Scans, MRIs, etc)
• Monthly stent replacements (required anesthesia, doctor visit, etc)
• Surgery
• Follow-up Appointments (Every 4-Weeks)
• Lost wages due to out of work
• Transportation Costs (Mayo Hospital visits are 4 hours round-trip)
• Auto Repair
Organizer
Jazz Etheridge
Organizer
Minneapolis, MN