"Praying for jack and your family"
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Dana M Simone
- Female
- Shrewsbury, MA
- United States
- Blog Posts (8)
- Discussions (2)
- Events
- Photos (3)
- Photo Albums
- Videos
Dana M Simone's Page
Latest Activity
Linda Burke commented on Dana M Simone's blog post Jack update"Your family will be in our thoughts next week - wishing Jack all the best for a smooth surgery event and a speedy recovery! "
Dana M Simone commented on Cheryl Biermann's blog post No Title"Good news, Cheryl...you and Nathan are both incredibly strong!"
Dana M Simone posted a blog postJack update
It's been a while!Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient for 2-3 nights…See More
Dana M Simone commented on Jessica Olivia Frysz's blog post LONG awaited update"Jessica, Congratulations on your new job! I'm glad you enjoyed your time in our central MA town of Rutland:)"
Dana M Simone commented on Phyllis Ann Talbot's blog post New News and date to 'stress' over ;-)"Sending lots of prayers for Hyde and you!"
NATALIE WALLACE commented on Dana M Simone's blog post Vision Problems"Found out at our last hospital stay a few days ago that Ben has cataracts in the the eye that doesn't have vision. However the eye that has a pin hole of vision does not. Just thought I'd through that out their. Lastly, when our nurd…"
Dana M Simone commented on Cheryl Biermann's blog post Merry Christmas everyone!"Merry Christmas, Jessica...please believe! Your miracle is coming!
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Dana M Simone commented on Cheryl Biermann's blog post Merry Christmas everyone!"Thanks for the great message, Cheryl. So many of us have experienced miracles this past year, and we offer our thanks and praise to God...praying for Christmas miracles for those in our aHUS family still fighting the battle. God is good...stay…"
Dana M Simone commented on Jessica Olivia Frysz's blog post Triple bouts with bad news"Jessica, remember that the Christmas season is a time of miracles....you are in my family's prayers."
Dana M Simone commented on Cheryl Biermann's blog post Just an observation"Wow....Jack had his Soliris infusion today as well - I'll start monitoring to see if there's a notable cognitive difference right after, compared to 7 - 14 days later. He also had his first ultrasound since the transplant to look at hiw…"
Dana M Simone commented on Colette Ann Frysz's blog post update"Happy Birthday Colette! Thank you for sharing your reflections and using your birthday wishes to ask for a brighter future for all families dealing with aHUS."
Dana M Simone commented on Joy Lewis O'Brien's blog post Back in the saddle again"Congratulations, Joy and welcome back!"
Dana M Simone replied to Bill Biermann's discussion Protocol for Treatment of Atypical HUS"Hi Len,
My son had a cadaver kidney transplant this past June. He received his first dose of Eculizimab just hours prior to the surgery. I believe the second dose was 24 hours later, and then once per week for couple of weeks,…"
Cheryl Biermann commented on Dana M Simone's blog post 501(c) (3) - contributing to the aHUS Foundation"That is such awsome news, we will be on the lookout! "
Profile Information
- Birthday
- June 17
- 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 membership request involves business interests as I seek additional aHUS information for business applications.
- no
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Dana M Simone's Photos
Dana M Simone's Blog
Jack update
It's been a while!
Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)
One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient… Continue
Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)
One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient… Continue
Posted on May 8, 2012 at 5:57pm — 2 Comments
501(c) (3) - contributing to the aHUS Foundation
Question, probably for Bill & Cheryl....It's time again for my company's United Way campaign. Last year I designated my contribution to the aTypical HUS Foundation as a 501(c)(3) tax-exempt organization. I obviously want to continue to do so and encourage others to as well....my concern is - is the money really getting to the foundation?!
Posted on October 12, 2011 at 9:10am — 4 Comments
Transplant Update
Hi Everyone!
Jack came home from the hospital on Monday - this week was a little overwhelming, just trying to adjust to the sudden, new and different lifestyle. Clinic twice this week - modifications to some meds; phosphorous, potassium and magnesium on the low side, so taking supplements. Otherwise, he is feeling great and it's amazing how healthy he looks! We still want to shield him from the outside world, but are trying to be sane about it.
I had taken…
ContinuePosted on June 24, 2011 at 5:46pm — 2 Comments
Day 4 Transplant Update
Jack moved from ICU to the Transplant unit Wednesday night. The staff is great - very intent on educating us about the new med regiment - meds to fight rejection, infection, hbp. Central line for dialysis was removed yesterday:)!Electrolytes have been on the low side, so Jack is getting IV sodium, magnesium, phosphorous, and drinking those delicious potassium powered drinks.
This morning's labs include: Creatinine: 0.51, HCT:…
ContinuePosted on June 17, 2011 at 9:34am — 11 Comments
Comment Wall (6 comments)
- At 10:31pm on July 9, 2011, Linda Burke said…
- Happy birthday to Jack!! Your family truly has reason to celebrate....
- At 11:47pm on June 20, 2011, Linda Burke said…
Hi Dana,
Just checking in for an update and to hear some new good news about Jack....
- At 10:19pm on May 8, 2011, Linda Burke said…
Hi Dana,
Hope things are progressing well with Jack's transplant team and all the things that need to be processed in order to be "listed'. Have you gotten insurance approval for Soliris already, or is that still an ongoing process?
It's interesting that several of our aHUS kiddos have vision issues, so if Jack's nephrologist has some articles, I think everyone would appreciate the info. If you'd prefer to email the articles to me at Linda@atypicalhus.org , I'll be certain to post them. Best wishes...please keep us posted.
- At 8:15pm on August 23, 2010, Cheryl Biermann said…
- We are happy to have you here and look forward to hearing your story-but I need to let you know that it is Linda and her family we have to thank for the interactive site, although we are thrilled to be able to participate. We opened the other static site years ago and always wanted to do more but just couldn't pull it together. You can imagine our excitement when Linda contacted us about doing this, haven't they done a wonderful job?!
- At 11:34am on August 23, 2010, Cheryl Biermann said…
- Hi Dana,
Welcome to our website, we look forward to hearing from you, feel free to join in!
- At 11:03pm on August 22, 2010, Linda Burke said…
- Hi Dana,
Welcome to the interactive website of The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disorder. Please leave a comment indicating your interests for our online aHUS community.members.
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 "aHUS Bootcamp" and "About aHUS" tabs 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.
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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.
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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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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