Print
E-mail
Comment
Rate
Beloit mom pins hopes on marrow transplant
 |
| Staff photo by Julie Becker Heather Marzorati sits with her 16-month-old son, Zane, at her home Saturday. |
By Julie Becker
Daily News staff writer
ROCKFORD - After nearly four years of battling a rare, life-threatening blood disease, countless hospital stays and plenty of close-calls, Heather Marzorati is ready to get healthy and get on with her life.
The 26-year-old will begin the process of undergoing a bone marrow transplant at the University of Wisconsin Hospital in Madison Wednesday, to combat her Paryxismal Nocturnal Hemoglobinuria (PNH) - the condition that has been wreaking havoc on her body.
PNH essentially causes a person's body to kill off its own red blood cells through an acquired gene mutation, and can cause blood clots, impaired bone marrow function and depleted energy levels.
Despite the combination of anxiety, fear and excitement that has her on edge, the young mother seemed surprisingly calm and upbeat at her home Saturday afternoon - an amazing feat considering her struggle since diagnosis and what she still has ahead of her.
In 2004, about 18 weeks into her pregnancy, doctors realized Marzorati's blood counts were down. There was a good chance it was related to her pregnancy but, just to be safe, they decided to perform some tests and a bone marrow biopsy.
A couple weeks later, as she lay on a hospital bed anxiously awaiting the ultrasound that would tell her the sex of her baby, Marzorati says, “For some reason I could tell something was wrong.”
Her baby had no heartbeat, the doctor said.
As if that weren't a big enough blow, “Literally, while I was laying there and the ultrasound jelly was still on my stomach, my cell phone rang and it was the hospital calling with the results from the biopsy,” Marzorati said. “That's when I knew I was really sick.”
After her diagnosis, she began taking blood thinners to prevent blood clots, which she's had in her liver, abdomen, legs and head. Her older brother and sister were tested to see if their bone marrow was a match for Marzorati's - a bone marrow transplant is the only cure for PNH - but no such luck, so her name was placed on an international bone marrow registry.
Although doctors advised her not to have children because of the high risk involved, Marzorati said she wasn't ready to give up her dream of starting a family.
“That was really hard for me, so I joined this PNH support group online and talked to women with PNH who had babies, so Brian and I decided to at least try again,” she said.
She gave birth to her son, Zane, in June of 2006, 28 weeks into her pregnancy. She had to be MedFlighted to Loyola University when doctors discovered her liver had been clotting throughout her pregnancy, and both Zane and her gallbladder were immediately removed.
At 2 pounds 14 ounces and about 15 inches long, Zane stayed in a neonatal intensive care unit for the first two months of his life, and now has cerebral palsy as a result of a brain bleed that occurred at birth, but Marzorati calls him her little miracle.
“Zane is the 25th documented case of a woman with PNH having a baby, so I'm pretty impressed,” she said. “Sure, he has issues, but he'd rather be here like this than not be here at all.”
Since his birth, both Zane and Marzorati have required frequent trips to the doctor, and she has been to the hospital about once every three to four weeks for issues including both a blood clot and subdermal hematoma in her head, and the intense headaches she's had as a result.
Brian's health insurance covers any tests and lab work they need, but the Marzoratis are responsible for the full cost of any appointments - perhaps the most difficult thing the family has dealt with.
“It's week to week - there's no savings account. We get this much money a week and we know by the end of the week it's going to be gone,” Marzorati said of how the family makes ends meet.
“Brian wants to take time off to be with me at the hospital, but we have to decide if we can afford it, and it shouldn't be that way,” she added.
Heather's mother, Janet Bell, agreed, “It's been real difficult for the whole family and we've been trying to be as supportive as possible, but it's hard.
“Some people have been asking, ‘How can we help? In any way, just let us know,' and sometimes it's just easier for people if they want to help, to just help them financially. Lots of people don't have time and can't help in other ways, so at this point it would just be great.”
Marzorati begins chemotherapy in Madison Oct. 3, and the bone marrow transplant Oct. 10. Doctors estimate her hospital stay will be about four weeks.
Once she receives the bone marrow from her donor - who is a male with a different blood type than her own - her blood type will change and any blood work she has done in the future will indicate she is a male, something Marzorati finds amusing.
Other not-so-amusing side effects of the transplant could include hair loss, infertility and premature menopause, but Marzorati is willing to face the risk in exchange for a normal life.
“Brian and I both kind of feel like I'm a ticking time bomb, and I guess I figure this is the lesser of two evils,” she said. “I just want to get back to me again. I feel like the last three or four years I've had to put my life on hold, and I just want to feel normal again.”
The family has set up the “Marzorati Benefit Account” at First Community Credit Union. People can put money into the account at both the Beloit, 1702 Park Ave., and Machesney Park, 1405 W. Lane Road, locations.
“To be honest, if people aren't able to give anything financially, I'd love for them to say some prayers,” Marzorati added. “It's so cliché, but I think, really, that's what's going to keep my family strong and get us through all this.”
The 26-year-old will begin the process of undergoing a bone marrow transplant at the University of Wisconsin Hospital in Madison Wednesday, to combat her Paryxismal Nocturnal Hemoglobinuria (PNH) - the condition that has been wreaking havoc on her body.
PNH essentially causes a person's body to kill off its own red blood cells through an acquired gene mutation, and can cause blood clots, impaired bone marrow function and depleted energy levels.
Despite the combination of anxiety, fear and excitement that has her on edge, the young mother seemed surprisingly calm and upbeat at her home Saturday afternoon - an amazing feat considering her struggle since diagnosis and what she still has ahead of her.
In 2004, about 18 weeks into her pregnancy, doctors realized Marzorati's blood counts were down. There was a good chance it was related to her pregnancy but, just to be safe, they decided to perform some tests and a bone marrow biopsy.
A couple weeks later, as she lay on a hospital bed anxiously awaiting the ultrasound that would tell her the sex of her baby, Marzorati says, “For some reason I could tell something was wrong.”
Her baby had no heartbeat, the doctor said.
As if that weren't a big enough blow, “Literally, while I was laying there and the ultrasound jelly was still on my stomach, my cell phone rang and it was the hospital calling with the results from the biopsy,” Marzorati said. “That's when I knew I was really sick.”
After her diagnosis, she began taking blood thinners to prevent blood clots, which she's had in her liver, abdomen, legs and head. Her older brother and sister were tested to see if their bone marrow was a match for Marzorati's - a bone marrow transplant is the only cure for PNH - but no such luck, so her name was placed on an international bone marrow registry.
Although doctors advised her not to have children because of the high risk involved, Marzorati said she wasn't ready to give up her dream of starting a family.
“That was really hard for me, so I joined this PNH support group online and talked to women with PNH who had babies, so Brian and I decided to at least try again,” she said.
She gave birth to her son, Zane, in June of 2006, 28 weeks into her pregnancy. She had to be MedFlighted to Loyola University when doctors discovered her liver had been clotting throughout her pregnancy, and both Zane and her gallbladder were immediately removed.
At 2 pounds 14 ounces and about 15 inches long, Zane stayed in a neonatal intensive care unit for the first two months of his life, and now has cerebral palsy as a result of a brain bleed that occurred at birth, but Marzorati calls him her little miracle.
“Zane is the 25th documented case of a woman with PNH having a baby, so I'm pretty impressed,” she said. “Sure, he has issues, but he'd rather be here like this than not be here at all.”
Since his birth, both Zane and Marzorati have required frequent trips to the doctor, and she has been to the hospital about once every three to four weeks for issues including both a blood clot and subdermal hematoma in her head, and the intense headaches she's had as a result.
Brian's health insurance covers any tests and lab work they need, but the Marzoratis are responsible for the full cost of any appointments - perhaps the most difficult thing the family has dealt with.
“It's week to week - there's no savings account. We get this much money a week and we know by the end of the week it's going to be gone,” Marzorati said of how the family makes ends meet.
“Brian wants to take time off to be with me at the hospital, but we have to decide if we can afford it, and it shouldn't be that way,” she added.
Heather's mother, Janet Bell, agreed, “It's been real difficult for the whole family and we've been trying to be as supportive as possible, but it's hard.
“Some people have been asking, ‘How can we help? In any way, just let us know,' and sometimes it's just easier for people if they want to help, to just help them financially. Lots of people don't have time and can't help in other ways, so at this point it would just be great.”
Marzorati begins chemotherapy in Madison Oct. 3, and the bone marrow transplant Oct. 10. Doctors estimate her hospital stay will be about four weeks.
Once she receives the bone marrow from her donor - who is a male with a different blood type than her own - her blood type will change and any blood work she has done in the future will indicate she is a male, something Marzorati finds amusing.
Other not-so-amusing side effects of the transplant could include hair loss, infertility and premature menopause, but Marzorati is willing to face the risk in exchange for a normal life.
“Brian and I both kind of feel like I'm a ticking time bomb, and I guess I figure this is the lesser of two evils,” she said. “I just want to get back to me again. I feel like the last three or four years I've had to put my life on hold, and I just want to feel normal again.”
The family has set up the “Marzorati Benefit Account” at First Community Credit Union. People can put money into the account at both the Beloit, 1702 Park Ave., and Machesney Park, 1405 W. Lane Road, locations.
“To be honest, if people aren't able to give anything financially, I'd love for them to say some prayers,” Marzorati added. “It's so cliché, but I think, really, that's what's going to keep my family strong and get us through all this.”
 |
||
| Marrow donors always needed |
Article Rating
Reader Comments
The following are comments from the readers. In no way do they represent the view of beloitdailynews.com.
Submit a Comment
Login below to post your comment. |
Not yet a member? Use the form below to register. |
