I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on September 04, 2008, 06:20:22 PM
-
Area man diagnosed with one in million disease
By joel stottrup
Princeton Union-Eagle
Jesse Wredberg of Princeton could be one in a million.
That’s if you consider that Wredberg, 25, has what is called Goodpasture’s disease, also known as Goodpasture’s Syndrome.
Goodpasture’s, an autoimmune-type disease, is rare, according to the Renal Unit of the Royal Infirmary of Edinburgh. It’s estimated there is only about one case per million people each year among the white European populations. It is considered even more rare in most other races.
Goodpasture’s is most common in people ages 18-30 and 50-65, though some as young as four and as old as 80 have had it. It affects men and women almost equally.
Goodpasture’s, named after the late American pathologist, Dr. Ernest Goodpasture, can affect both the lungs and kidneys, as is suspected to have happened with Wredberg.
The Edinburgh source on the disease states that the symptoms can show up as kidney disease alone, or in rare cases only as a lung disease. In some cases both can occur.
The kidney disease primarily involves the kidney’s filtering units.
Wredberg’s kidneys are bad enough that he is being considered for a kidney transplant from his father Jim as early as this coming November, according to the family.
Wredberg, who has a wife, Rachel and two children, Shealynn, 6, and Ashton, 4, is a pipefitter, working out of Pipefitters Local 539 in the Twin Cities.
An upcoming Sept. 12 benefit to help the Wredbergs comes close to nine months after Wredberg figures he was first having Goodpasture’s symptoms.
During an interview last week at his home, Wredberg noted that last fall was the third year in a row he had pneumonia. He went into Fairview Northland to treat it on Nov. 22, 2007.
About a week later, on Dec. 3, while at work in St. Paul helping install heating and cooling lines at a bank, he began feeling sick at about 8 a.m. He also found out he was unable to urinate. He “kind of ignored” the sick feeling, he said, and stuck out the whole work day.
But he felt the same ill feeling at the beginning of his next day at work. He frequently felt like he had to urinate, yet he was unable to and he vomited. He called Rachel to make a hospital appointment in Princeton and the earliest opening was 4 p.m.
Lab work was done and when he got home from the hospital checkup, the couple received a call that Jesse was having renal (kidney) failure. He was told he should go to the University of Minnesota Hospital, Fairview, right away for more testing.
“They did every test known to man,” Wredberg said about the testing over the next two days at the U of M Hospital.
He received the Goodpasture’s diagnosis Dec. 6. Rachel says he received eight plasma exchanges at the U of M Hospital while there until his discharge on Dec. 12. The plasma exchange, a type of plasmapheresis, was to remove the antibodies from his blood that was attacking his kidneys, said Jesse and Rachel.
He went back down to the U of M Hospital for a couple more such plasma exchanges after the discharge.
Jesse has also been getting dialysis treatments regularly ever since he received his Goodpasture’s diagnosis.
His dialysis schedule, for some months, was four-hour sessions, three times a week.
That was cut back beginning in late July this year to three-hour sessions, twice a week.
Jesse has been working off and on, fitting in work days with his dialysis schedule. As is common with other dialysis patients, Jesse has been tired after the end of each of the sessions.
He also had several hospitalizations earlier this year. There was the nearly week-long stay at Mercy Hospital starting in late February for dealing with the infection where his catheter went into his chest.
Then, in mid-March, he went into the U of M Hospital for three weeks for a stroke, Rachel said it occurred after he had shingles that weren’t treated.
But after being out of the U of M Hospital for five days, he was back into the same hospital last April. “They thought his fistula was infected,” Rachel said. That is the entry point in one of his arms for inserting the dialysis needle.
He went home after his discharge with a little vacuum pump for Rachel to use to remove any pus from the fistula area.
Wredberg hasn’t had to stay in the hospital the last few months, Rachel said last week, calling that “good.”
Yet still another snafu came about on Aug. 23. While Jesse was at work, something went wrong with a jack holding up a truck and the rotor on a wheel where the tire had been removed came down on his left foot.
Jesse had the foot in a cast during his interview on Aug. 26.
In remission
Rachel and Jesse said his Goodpasture’s disease has been in remission since sometime in June. But the damage to both of his kidneys has been so great, the two said, that the paperwork and testing was started to consider him for a transplant.
Jesse’s father Jim was tested and found to be a good donor. Others tested were Rachel and Jesse’s sister Tiffany and Jesse’s mother Teresa.
Rachel noted that a transplant could not take place any sooner than after six months of the Goodpasture’s disease being in remission.
The creatin level in his kidneys has improved so a reevaluation will be done in November or December on whether there should still be a transplant, Rachel said. However, a transplant could likely be ordered because of the condition of his kidneys not improving enough yet, she said.
Jesse is on a regional list for a kidney to transplant whether it is from a living donor or deceased.
The Wredbergs were asked how the pneumonia that initially brought Jesse into the hospital last December related to the Goodpasture’s.
The two said it is uncertain there is a link. But because of going in to treat the pneumonia, the malfunctioning of the kidneys was noticed, thus leading to tests that resulted in the Goodpasture’s diagnosis, she said.
No one knows, Jesse and Rachel said, what causes Goodpasture’s disease or whether it is an environmental cause or hereditary.
The day Jesse and Rachel were interviewed, was a dialysis day for Jesse and he had slept much of the day after the session was over.
Jesse and Rachel seem to remain cheerful despite all that has happened since last December.
“Actually, I’m starting to feel the best that I have in a while,” Jesse said. He noted that he is trying to get to work as often as possible.
As Jesse and Rachel talked about how things have gone, Jesse said, “We were kind of blessed to have her [Rachel’s] mom (Debbie Stay) watch the kids twice a week during dialysis.”
Rachel said she is moved by the support her family has received.
“People send us cards and don’t put names on them,” she said. “People that you don’t know, they appreciate you. So many people you don’t know are sending cards and we’re getting phone calls from people. The community has been a great help.”
“We’re definitely indebted to a lot of people,” Jesse said. Members of his union took up a collection and donated $3,000 to the Wredbergs.
Benefit
The Wredberg’s are facing some significant out-of-pocket medical costs.
About 20 percent of all the Wredbergs’ medical costs and prescriptions are not covered by insurance. That means they have about $3,100 of uncovered monthly expenses. Plus there are other costs from frequent checkups, hospitalizations and transportation.
Immanuel Lutheran in Princeton is planning to help by conducting a spaghetti dinner and silent auction on Sept. 12 for three hours starting at 5 p.m.
A Jesse Wredberg benefit fund is also set up at Bremer Bank.
http://millelacscountytimes.com/index.php?option=com_content&task=view&id=906&Itemid=1
-
I am one of the "1 in a million" who also contracted GoodPasture's Disease, a horrible and insidious disease.
My renal specialist at Stanford told me I was one of a handful he'd met in all his years as a nephrologist.
Nobody knows what causes it; Nobody really knows what will happen in the future after a patient goes into "remission."
It's like constantly walking at death's door.