Phyllis Ann Talbot Female Cumming, GA United States: Share on Facebook Share Twitter

Phyllis Ann Talbot's Friends

View All

Phyllis Ann Talbot's Discussions

Dialysis
25 Replies

Started this discussion. Last reply by Cheryl Biermann Aug 1, 2011.

View All

Phyllis Ann Talbot's Page

Latest Activity

Phyllis Ann Talbot posted a blog post

Update on scopes and other fun stuff

Just realized that I havne't posted here in FOREVER! Can't remember if I even put on here that Hyde was having a colonoscopy and Endoscopy a week or 2 ago? Anyway - it was a result of on-going diarrhea after his virus back in January that landed us in the hospital for a week - here's the latest below.Hi - quick update - first off Hyde survived his colonoscopy and endoscopy - he didn't have a ton of fun but at least it's over. The initial thoughts from the doctor were fairly good - most…See More

May 1

0 Comments

Phyllis Ann Talbot commented on Cheryl Biermann's blog post Passing on the torch

"GREAT job on another successful fundraiser!!! And that's great on the passing of the torch - how cool when Nathan and Hyde get older and their friends can get drug (I mean help) as well!"

Mar 28

Aida Billingsley left a comment for Phyllis Ann Talbot

"Hi Phyllis, just wanted to thank you for your input. I hope you are all doing well! "

Mar 21

Cheryl Biermann commented on Phyllis Ann Talbot's blog post Well - as usual Hyde wants to keep us on our toes - and note to any Soliris and transplant folks out there

"Phyllis, as you know, we've always got # issues, I will pass this along to Nathan's docs. I would have some questions for your t-plant team. #1 is this a problem that shows up in the genral t-plant population? #2 what percentage if…"

Mar 21

Phyllis Ann Talbot commented on Aida Billingsley's blog post Inquiry on possible Soliris side effects....

"Hey there Aida! how are you? I haven't seen anything with hyde regarding his antibodies. His platelets actually went way up - but we did the transplant at roughly the same time we started Soliris - so he may not be a good…"

Mar 20

Jessica Olivia Frysz commented on Phyllis Ann Talbot's blog post Well - as usual Hyde wants to keep us on our toes - and note to any Soliris and transplant folks out there

"I am glad to hear that despite the iffy biopsy results, that Hyde is doing phenomenal. With the new school, just explain the situation at hand and Hyde I'm sure will do just fine as he has a transplant, he will fit in, unlike myself who was on…"

Mar 20

Phyllis Ann Talbot posted a blog post

Well - as usual Hyde wants to keep us on our toes - and note to any Soliris and transplant folks out there

***quick addendum to our Carepage update below for anyone on here who's similar to us with t'plant along with Soliris therapy - want to see if anyone else has had similar 'odd' biopsy results? The main thing (and I didn't put this on the carepage update) is that they found 'some damage' to the vessels in Hyde's/uncle Warren's kidney and our dr found this 'surprising' given how rock steady his creatinine, etc have been. Hopefully it's normal t'plant stuff - but just want to know if anyone's…See More

Mar 19

2 Comments

Phyllis Ann Talbot commented on Amy Swarbrick's video

Brody's Journey

"Oh my GOODNESS Amy! He's gotten SO BIG!!!! Haven't seen any pictures of him in a while I guess!!! Too cool! Best wishes to you all!"

Mar 14

Linda Burke commented on Phyllis Ann Talbot's blog post New News and date to 'stress' over ;-)

"WoW...very impressive, Phyllis! We'll have to upgrade you from the junior medical badge in the kids' toy doctor kits at Child Life's playroom at your hospital playroom to a Nobel Prize for Mothering (okay, but they really SHOULD…"

Mar 3

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!"

Mar 3

Cheryl Biermann commented on Phyllis Ann Talbot's blog post New News and date to 'stress' over ;-)

"Thanks for the very detailed account! Love details. Our older kids have already met with blue ribbons on the disease, one did a "can music influence blood pressure?" (Yes, by as much as 10 pts. systolic), and…"

Mar 2

Phyllis Ann Talbot posted a blog post

New News and date to 'stress' over ;-)

hi everyone, was waiting to get through this week to update all, on the 'good news' front - I ACCESSED Hyde's PORT!!!! and DREW BLOOD, and DID HIS SOLIRIS INFUSION, and SPUN OFF THE BLOOD IN THE CENTRIFUGE WE ARE BORROWING! OK, so the amazing home health nurse was sitting right next to me the whole time, and we practiced on a dummy for a few hours before - but still! I was very excited and so was Hyde. We are going to have REALLY cool science fair projects when the kids get older! (If they let…See More

Mar 2

3 Comments

Phyllis Ann Talbot commented on Nicolas's video

aHUS by Lou Anne

"love this Nicolas! Tried from my phone and couldn't get it to work - GREAT job! and what a doll in your Lou-Anne!"

Feb 29

Grace commented on Phyllis Ann Talbot's blog post Biopsy update and 4th Annual Hike for Hyde

"I'm sorry the biopsy did not provide better news, but hopefully it will be a small blip in an otherwise good health! Good luck with home infusions, I'm sure it will be a relief."

Feb 26

Melissa Hearn commented on Phyllis Ann Talbot's blog post Biopsy update and 4th Annual Hike for Hyde

"Phyllis, sorry to hear the scary sounding results. Praying for better outcomes next time, and that the steroids don't make you all crazy!"

Feb 23

Cheryl Biermann commented on Phyllis Ann Talbot's blog post Biopsy update and 4th Annual Hike for Hyde

"Thanks for letting us know. Prayers. I'm forwarding this to our docs to keep the information going."

Feb 20

Profile Information

Birthday: September 6

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:: Factor H (CFH) Protein(Gene)

My name is Phyllis Talbot and I am the mother of an adorable 2 1/2 year old little boy named Hyde who is struggling with a very rare disease called Atypical HUS. This journey began for us in January of 2008 and Hyde is currently on peritoneal dialysis every night at home for 10 hours. He is considered at end stage renal disease and his kidneys are permanently damaged. We have suffered with severe anemia, high blood pressure, low platelets, as well as bouts of respiratory failure and a seizure over the last 18 months. Hyde is currently stable and actually feeling good and acting like a normal 2 1/2 year-old.

Here's a link to an article the local paper did on Hyde:
http://www.forsythnews.com/news/archive/2450/

Also - here's a link to the webpage we set up:
www.hike4hyde.com

Phyllis Ann Talbot's Photos

Loading…

Phyllis Ann Talbot's Videos

Hike4HydeVideo

Added by Phyllis Ann Talbot

Phyllis Ann Talbot's Blog

Update on scopes and other fun stuff

Hi - quick update - first off Hyde survived his colonoscopy and endoscopy - he didn't have a ton of fun but at least it's over. The initial…

Continue

Posted on May 1, 2012 at 9:23am

Well - as usual Hyde wants to keep us on our toes - and note to any Soliris and transplant folks out there

Continue

Posted on March 19, 2012 at 9:43pm — 2 Comments

New News and date to 'stress' over ;-)

Continue

Posted on March 2, 2012 at 9:26am — 3 Comments

Biopsy update and 4th Annual Hike for Hyde

Hi everyone, you might have thought I forgot about you for the biopsy result but we've been going back and forth with the dr's while they mull over how to handle the biopsy results. It wasn't horrible but it definitely wasn't the best news either - the pathology report showed 'borderline acute rejection'. I know this sounds alot like the first biopsy he had back in August - but that one actually said that it might be the result of a poor sample, and it was…

Continue

Posted on February 20, 2012 at 9:30am — 3 Comments

Home (for now) and happy Kidneversary!

Hi all - let me start by saying this isn't exactly how I imagined writing this update - I'd been planning my big Kidneversary update in my mind for the last couple of weeks and as usual - Hyde had other plans!

On the short term front - yes we are home. The feeling for now is that Hyde's mouth sores were due to the medicine change, and he also got hit around the same time with some type of nasty virus causing the high fever and diarrhea. He's been fever free…

Continue

Posted on February 1, 2012 at 7:11pm — 4 Comments

Comment Wall (30 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 1:53pm on March 21, 2012, Aida Billingsley said…: Hi Phyllis, just wanted to thank you for your input. I hope you are all doing well!

At 10:29am on November 13, 2011, Joy Lewis O'Brien said…: Thanks, Phyllis! I will definitely look for the full articles in about a month or so. I appreciate the notice!

At 11:33pm on March 16, 2011, Linda Burke said…: Hi Phyllis,

Hope that Hyde is at home now and comfortable after the stent removal - said some prayers that all would go smoothly....

At 2:52pm on January 6, 2011, Jill Ziegler said…: Hi!

Thanks for your compliments. I am so sorry to hear your little one is dealing with all of this. Hopefully a transplant will come sooner rather than later for him. I am praying this will be the year for me. I will be transplanted at the Univ of Iowa whenever it happens. They are a superb team!!!! Thanks for reaching out to me and I look forward to staying in touch. Are you on facebook?

xoxo

Jill

At 11:17am on December 29, 2010, Cheryl Biermann said…: Oh, no, was Hyde sick? Hope he felt well enough to enjoy Christmas?

At 11:22pm on December 27, 2010, Linda Burke said…: Hope to hear that Hyde is on the mend soon !

At 2:20pm on August 25, 2010, Joy Lewis O'Brien said…: Thank you, Phyllis! It will be interesting as we plan a ceremony and then a separate reception here in MA and one in TX (where my family lives). I foresee lots of cake in my future!

At 8:27am on July 1, 2010, Deborah Deffenbaugh said…: Hi Phyllis--Sorry I took so long to respond to your friend request. I don't visit my home page often as I ususally go right to the research blogs and discussions. How is everything going with Hyde? Alyssa is still on track for a transplant using Soliris this summer but it seems as if we keep running into snags. We wanted to do it in Iowa but our donor won't fly and can't drive for at least 2 weeks. She understandably doesn't want to be away from home that long so we switched to Univ. of Rochester, which is a huge teaching hospital in our area. We can't use the Dr. we have had since the beginning as he doesn't have privileges there. So now we feel like we are starting over with the learning curve---Ugh!!!

At 1:47pm on June 24, 2010, Abrahim Saleh said…: Hi Phyllis! I can't believe you are that close to my sister! All along she has felt alone that there was very little hope, but with other parents like herself w children plagued by aHus, she will feel a sense of hope when she hears about it. I have been trying to get her to become a member. Soon she will be able to share Abraham's story with everyone. Thanks again for commenting and welcoming us as members.

At 6:09pm on April 19, 2010, Cheryl Biermann said…: Wow-Phyllis you ALL did a fantastic job, thank you to everyone!

No comments yet!

View All Comments

Welcome to
The Foundation for Children with Atypical HUS

Sign Up
or Sign In

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.

************************

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...

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.