By Linda Titel
Shiocton resident Tammy Daul is no stranger to pain and suffering, for the last 15 years she has suffered from kidney disease and failure at the age of 51.
It all started when she was pregnant with her third child, her daughter, Amber.
Daul was working night shift at Procter and Gamble and three months pregnant when she suffered a severe migraine headache, which shortly was followed by a nose bleed. Because she was pregnant she went to the hospital right away to get checked out, after taking her blood the doctor referred her to a nephrologist. A nephrologist is a physician who studies and deals with nephrology. Nephrology is the adult and pediatric study of the kidneys and its diseases.
Daul’s nephrologist took an ultrasound scan of her kidneys and told her they were both failing. Because she was pregnant they could do nothing for her but put her on bed rest until the baby was born.
Daul’s baby daughter, Amber was born healthy and now Daul could get a biopsy done on her kidneys.
She said they monitored her for four years until she had to go on dialysis. Daul said the doctors really never found out what caused her kidneys to fail, but later when she was referred to Mayo Clinic in Rochester, Minnesota, they found she had a rare life threatening blood disease called Atypical Hemolytic Uremic Syndrome. Atypical HUS is a rare, chronic disease in which uncontrolled activation causes blood clots in small blood vessels throughout the body. It affects various organs, including the kidneys, heart, lungs, brain and gastrointestinal systems.
Daul’s aunt, Ann Sims that came back to Wisconsin from serving in the Air Force in Germany told her she would donate one of her kidneys to her.
Daul said, “It was December 2006 and the donated kidney lasted for 10 years.”
Previously Daul had used peritoneal dialysis for a year, during the night, sleeping, for eight hours a day. The peritoneal dialysis process is where blood is cleaned inside your body. A plastic tube called a catheter is surgically placed into your abdomen (belly) to make an access. During the treatment, your abdominal area is slowly filled with dialysis solution through the catheter. The blood stays in the arteries and veins that line your peritoneal cavity. Extra fluid and waste products are drawn out of your blood and into the dialysis solution. After a time, the dialysis solution with the absorbed waste products is drained out a tube and discarded.
Since Daul’s kidney failed again from unknown causes, she endures four hours of dialysis four times a week from a portable hemodialysis machine.
Someone must be present every time she does her home dialysis to make sure nothing goes wrong with the machine, which has happened in the past.
Amber said, “There have been some times that they had to call 911 or my mom would have died.”
Daul also has to take a lot of medications for her disease. Although her current kidney is not working she has to continue on the anti-rejection medications so she doesn’t build up antibodies that will prevent her from getting another donor kidney.
She takes about 10 prescriptions a day.
After her first kidney transplant she was on a certain medication that caused her constant nausea and bathroom trips. She lost a lot of weight, was down to 98 pounds and was very sick. Her doctors could not figure out what was causing her illness. Daul finally ended up in Mayo Clinic where they found out that she had a rare blood disease, so rare that out of a population of 1 million people, only two people would have the rare disease.
She said at one point she was so sick and weak that she just wanted to die but her daughter Amber, now 15, would have none of that talk. Amber stood by her side and coaxed her into eating one spoonful at a time, and then another and another.
Daul’s significant other, Donnie Peeters was also there to support her when he could get away and take time off from work.
Finally, after getting treatment for the blood disease her strength and determination to get better came back after a three month stay at Mayo Clinic in Minnesota. Daul was able to stay at the Hope House in Rochester between treatments at the Mayo Clinic. Although Mayo tried to save her donor kidney with medication, they could not because it was too damaged so Daul is currently back on the donor list. She was told it could take five to 10 years to get a new kidney donated to her.
Daul has three children, Jonathan, 25, Nicholas, 22, and Amber almost 16. Amber is Daul and Donnie’s daughter. Daul was told that her children couldn’t be a donor for her because the risk of them getting kidney disease themselves was too great, according to her doctors. Donnie also was a potential donor but was not a match.
To make matters worse, Donnie was up north at their cabin when he started feeling bad so he called 911 and they rushed him to the hospital. The doctors determined that he had a massive heart attack and they had to do surgery on him and put stents in.
He is currently recovering at home after his ordeal.
The family has been through a lot throughout the years. Daul said, “Thinking positive and finding humor in things has brought us through some tough times.”
She said as she laughed that Amber wants to become a doctor or nurse when she gets older, Amber immediately spoke up and said, “I’ll do anything as long as it’s not in the medical field, I’ve seen enough of that!”
Donnie brought up the fact that anyone may step forward to donate a kidney but there are guidelines and resources to help a potential donor decide. He also said, “If someone decided to become a donor and they are not a match for Tammy, you can still donate your kidney, it’s called an exchange and in doing that it will help bring Tammy further up the waiting list. It is important that everyone who wants to be a donor makes sure they check the box off on their drivers license too.”
Daul daughter’s Amber who is a sophomore said, “I want my mom at my high school graduation,” it’s two years away and I want her there.” She hopes someone will step up and donate a kidney soon, but for now they just live one day at a time to it’s fullest and pray for the best.
If you would like to become a potential donor all you have to do it go to mayoclinic.org/livingdonor to get started. If you have any questions you can send an email to LIVIVGDONOROGANTP@mayo.edu or call (866) 227-1569. All information is kept confidential and private.
Another resource is by visiting Mayo Clinic’s living donor toolkit to learn what living donors can expect with tests and screening, the procedure, risks, recovery, financial information and more. the web address is connect.mayoclinic.org/page/transplant.
If you would like to contribute in any way, monetary or other please contact email@example.com.
Any contribution would be greatly appreciated by the family.
(References from Mayo Clinic’s website).