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Candace Mulcahy
- Female
- Vestal, NY
- United States
- Blog Posts (2)
- Discussions (11)
- Events
- Photos (3)
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Candace Mulcahy's Page
Latest Activity
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Chloe (26 months) has been on Soliris for a year and three months after four months of unsuccessful plasma therapy and hemodialysis. We attempted to stretch out her infusions to four weeks from three weeks several months ago, but her…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Chloe has been clear of fevers for the last couple of weeks, and her labs looked beautiful today!
hemoglobin - 12.5 (best ever!)
creatinine - .3
BUN - 24
She's been looking good, feeling good, and full of mischief! She's even growing!…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Chloe (15 months) received her Soliris infusion yesterday - the first that was stretched to 3 1/2 weeks rather than 3 weeks. She's been on Soliris since the end of March. Her labs are a little off, so we are re-checking her tomorrow:
H&H:…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Hi everyone!
Chloe (14 months) received another Soliris infusion (300 mg) on Tuesday. To be honest with you, I can't even remember how many she's gotten - maybe 8 or 9? since her first at the end of March. Chloe received her first two…
Candace Mulcahy commented on MARCIA AGUALLO BAKER's blog post 'Genetic testing'
We are also waiting for the testing in Iowa - I think they might do them in a "batch." We are eager to get news so we can move on with testing the rest of our family.
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Kerri-
That is wonderful news! I'm so happy to hear such progress with Ash! The silver lining around this dark cloud is that all of our kiddos are making history with Soliris - and paving the road for families in the future. My family feels so…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Wow. This is an exciting and very scary time. Good luck on stopping the Soliris! Skyler is making history...and we all so appreciate it. We'll be saying lots of prayers.
Chloe's blood pressure has been a bit higher, and her red blood cell…
Heather Still commented on Candace Mulcahy's photo
That picture is priceless. She's like "yay me". I love it.
Candace Mulcahy updated their profile photo
Candace Mulcahy replied to Christy's discussion 'Recipes'
I'm also looking for ideas - particularly baby foods and finger foods. All the things that are generally recommended to start with are full of potassium!
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Hi everyone-
Chloe had her 4th Soliris infusion today. Before the infusion, her labs were:
Creatinine: .5
BUN: 19
LD: 279
Hemoglobin: 10.5
Hematocrit: 29.5
Platelets: 307
Her blood pressure was in the 90s/60s throughout the infusion. Potassium,…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
Thanks, Jodi! It does feel amazing - just a couple of weeks ago, I couldn't see a light at the end of this very dark tunnel. We've only begun on our journey, and I can only imagine how hard it has been for families whose loves are not as…
Candace Mulcahy replied to Linda Burke's discussion 'Soliris'
This is the longest stretch of good news for Chloe since January. It's hard not to get excited when she is feeling so well, acting like a typical (tiny!) 11-month old, and her body is responding so positively.
Chloe's hematocrit (23.4)…
Linda Burke commented on Candace Mulcahy's blog post 'Soliris and Chloe (the younger Chloe)'
You are welcome to post in either spot. A huge bonus to posting a Blog right here on the HomePage (as opposed to a Forum) is that this Blog section appears on this aHUS site's Facebook Page. Read by our wonderful and supportive 322 Facebook…
Profile Information
- Birthday
- November 16
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Not Tested, Interested in Undergoing Genetic Testing
Chloe's Diagnosis
Chloe was born on May 7, 2009, and was diagnosed with aHUS on January 22, 2010. She was initially inpatient for 2 1/2 weeks, and responded well to plasma infusions. We are working with a nephrology team at State University of New York Upstate Medical Center. Four days after she was discharged and after her second outpatient FFP infusion, she was re-admitted - this time for just over two weeks. The second bout came on much quicker, and was more severe than the first. Those few days at home gave her enough time to develop a cold, which triggered the disease. Just before she was to have the vas cath re-inserted and start on pheresis, her creatinine levels stabilized so she stayed on infusions.
She went to outpatient infusions six days a week for two weeks, and then during one of her infusions, she received 250ml over 2 hours rather than her usual 100 ml over 3 hours. A mistake that put her into fluid overload, compromised her heart and lungs, and allowed the disease to kick back into high gear.
She went to outpatient infusions six days a week for two weeks, and then during one of her infusions, she received 250ml over 2 hours rather than her usual 100 ml over 3 hours. A mistake that put her into fluid overload, compromised her heart and lungs, and allowed the disease to kick back into high gear.
Candace Mulcahy's Photos
Candace Mulcahy's Blog
Soliris and Chloe (the younger Chloe)
FYI - I moved updates on Chloe's progress to the Soliris forum. I think that makes more sense, right?
Posted on April 2, 2010 at 7:08pm — 1 Comment
Chloe's first days on Soliris
Linda asked me to post on Chloe's first days on Soliris...
As a little background - Chloe is 10 months, diagnosed on January 22nd, getting near daily ffp/cpp, which seemed to be working...except that her tiny little body couldn't handle the high levels of fluid. She was fluid overloaded during an outpatient infusion two weeks ago, which sent her into her latest hospitalization. Chloe's doctors, Drs. Listman and Schurman at Golisano Upstate Medical Hospital in Syracuse, have a…
ContinuePosted on March 29, 2010 at 10:30am — 9 Comments
Comment Wall (8 comments)
- At 10:02pm on March 9, 2010,
Linda Burke said…
- Candi,
So sorry to hear that Chloe is back in the hospital today....my thoughts and prayers are with you!
- At 7:05pm on February 2, 2010,
Heather Still said…
- Hi Candace. Thanks for the update. Things must be going very well with Chloe, being able to decrease infusion frequency after only 13 days is awesome news. Hope the improvements continue!!! Take care and we're all here if you need us :)
- At 6:59pm on February 2, 2010,
lisa ann peterson said… - i have a little chloe with ahus too....i hope your lil chloe starts feelin better...
- At 1:25pm on January 28, 2010,
Melissa Hearn said… - Welcome to the site Candace. I hope that it provides the needed support, encouragement, and understanding that it did for me when my sweet little baby Bryan was diagnosed with Atypical HUS. He is 11 months old now, but was only 4 months old when first diagnosed. He was in the hospital for about 2 months before trying a relatively new and non FDA approved drug Soliris. He is now home, healthy and happy only having to go in once every 3 weeks for an infusion of Soliris as an outpatient treatment. If there's any questions you have, or anything you need, I would love to talk to you directly.
Melissa Hearn
- At 9:51pm on January 27, 2010,
Heather Still said…
- Hi Candace. Your Aunt Shirley has filled me in on some of your situation. I know that you are in Syracuse with your daughter whom is 8 months old, but that's about it. I would like to start by saying you are in very good hands at Upstate. The pediatric Nephrologists (Shurman or Listman?) have had great success in my son's course of treatment. Is your daughter typical or atypical HUS? What course of treatment have they used so far? My son, Ryan, is 10 years old now and still has managable kidney function after 7 years of Atypical HUS. I will answer any questions you have to the best of my ability and will share my cell phone number if you want it. Just let me know what I can do to help. Your family is in my thoughts. Stay strong.
- At 9:04pm on January 27, 2010,
Linda Burke said…
- Hi Candace!
Hope you're getting a chance to filter through the info on the site, but I'd like to also direct you to the two tabs at the top of the page, "About aHUS" and "A Parent's Perspective" (still under construction) as well as the Soliris Forum. The Foundation for Children with Atypical HUS has a great website with quite detailed medical information at www.atypicalhus.50megs.com, seen in the Links Box on the Home Page. Feel free to comment here and there, asking questions to help you gas ain better clarity - we're here to help!
- At 10:25am on January 27, 2010,
Cheryl Biermann said… - Welcome Candice, We hope to hear that things are going well soon. Please feel free to interact with any of the forums or blogs. We look forward to getting to know you.
- At 9:04am on January 27, 2010,
Shirley L Cosgriff said… - Candy, I hope this website helps you. I have given your email address to Heather Still who has a son Ryan 7yrs old and has had this since he was an infant. She also goes to Upstate and she should be a lot of support. Please let me know if I can do anything and know we are all praying for Chloe, and you, Nate and Alex as well. Love A. Shirley
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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