4th Annual Hike for Hyde at Sawnee Preserve Park
April 14, 2012 from 9am to 2pm
Fun family day in honor of Hyde Talbot and Bryan HearnSee More
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Phyllis Ann Talbot
- Female
- Cumming, GA
- United States
- Blog Posts (72)
- Discussions (32)
- Events (1)
- Photos (57)
- Photo Albums
- Videos (1)
Phyllis Ann Talbot's Discussions
Dialysis
25 Replies
Started this discussion. Last reply by Cheryl Biermann Aug 1, 2011.
Phyllis Ann Talbot's Events
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4th Annual Hike for Hyde
April 14, 2012 from 9am to 2pm – Sawnee Preserve Park
Phyllis Ann Talbot's Page
Latest Activity
Grace commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
Happy anniversary! and happy happy "normal" life! I hope Hyde recovers rapidly and has a good biopsy tomorrow with as few complications/hassle as possible!
Cheryl Biermann commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
Thanks for all the detail! Looking forward to our update in 7 months! Love you guys! Here's to popcicles, ice cream and lots of salty snacks, oh yes, and a 16 oz. toast of kool-aid, cheers and many more anniversarys to come,…
Melissa Hearn commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
SO Happy you are home. What a crappy week, and what a wonderful one year celebration. Looking forward to many more Kidneversaries to come!!!!
Linda Burke commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
Tearing up....and so grateful for the joyful year you've enjoyed - with many more to come. Donors for our aHUS patients are incredibly special people!
Cheryl Biermann commented on Phyllis Ann Talbot's blog post 'Back in the hospital and the 'bad' anniversary'
Just get him and Ruthie and up and down bed! Seriously, I think Nathan actually misses them, he fondly talks about how well he slept when he was in the hospital all the time. Mom when you can raise your head a little, without bending…
Linda Burke commented on Phyllis Ann Talbot's blog post 'Back in the hospital and the 'bad' anniversary'
You are too funny....even in the face of all these bumps in the road! Hope Hyde's symtoms settle and that he's able to go to Rapamune - your background info is extremely valuable to those considering a kidney transplant with…
Back in the hospital and the 'bad' anniversary
Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well, and our transplant program tries to…See More
Blog post by Phyllis Ann Talbot
4th Annual Hike for Hyde at Sawnee Preserve Park
January 19, 2012 from 6pm to 7pm
Fun family day in honor of Hyde Talbot and Bryan HearnSee More
Event posted by Phyllis Ann Talbot
Phyllis Ann Talbot replied to Jessica Rios's discussion 'Soliris side effects'
hmmmm - my son Hyde has been on Soliris since Jan of last year and I can't say that I've noticed any effects to his hair? Sorry! not sure if your sister is on any other meds that could cause this?
Phyllis Ann Talbot commented on Cheryl Biermann's blog post 'Merry Christmas everyone!'
Thanks Cheryl and Dana for the messages! I couldn't agree more!
Phyllis Ann Talbot commented on Cheryl Biermann's blog post 'A Question for Transplant with Soliris patients'
Good grief Cheryl is he doing it on purpose so you can't relax!!!! J/k Nathan!!!!! Sorry , Igot nothing for you!
Joy Lewis O'Brien left a comment for Phyllis Ann Talbot
Thanks, Phyllis! I will definitely look for the full articles in about a month or so. I appreciate the notice!
Phyllis Ann Talbot left a comment for Joy Lewis O'Brien
Joy - sent you a friend request so I could send you an e-mail - somehow skipped that over the last few years! Congrats again on your very exciting year! I had a question - I had set up a Google alert to send me stuff if anything…
Cheryl Biermann commented on Phyllis Ann Talbot's blog post ''Normal''
How much fun! Totally relating to your energetic Hyde...Nathan disappears and since the one kid on the block his age is pretty much a couch potato, I find him glued to Wii Boxing, or Wii running or X-BOX battles, drenching with sweat! …
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
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
Phyllis Ann Talbot's Blog
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…
Posted on February 1, 2012 at 7:11pm — 4 Comments
Back in the hospital and the 'bad' anniversary
Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.
First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well,…
Posted on January 28, 2012 at 10:17am — 2 Comments
'Normal'
Just realized how long it has been since the last update - the good news is that it's because we've been so crazily busy doing 'normal' things - there's nor much crazy medical stuff to tell!
Bill and I had a great trip out to Park City (for all of 18 hours) - Hyde ended up not going - there was some concern at the last minute due to the how high up the resort the meeting was being held was - over 8500 feet and they had a few folks with altitude sickness so we…
Posted on November 2, 2011 at 4:55pm — 1 Comment
Another visit to the Pink Pig
Here's a link - 2 more videos here from our visit this morning with a local morning show ;-)
http://www.myfoxatlanta.com/dpp/good_day_atl/FOX-5-Storm-Chaser-Visits-the-Pink-Pig-20111101-gda-sd
Posted on November 1, 2011 at 1:40pm
This will only really make sense if you are from Georgia, but ......
This is a long standing tradition that I actually did when I was a child, well it's now a fundraiser for our local hospital and put on by Macy's, and each year the folks at out hospital nominate a patient to be the 'VIP' or very important patient who gets to ride the very first ride of the season (in a whole and I mean whole new outfit provided by Macy's). So this year Hyde and Ruthie got to experience this honor, here's a link and there should be a few more things coming in the next few days,… Continue
Posted on October 27, 2011 at 9:10pm — 2 Comments
Comment Wall (29 comments)
- 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!
- At 8:37am on April 19, 2010,
Heather Still said… - Hearing that you did AWESOME on your fundraiser this weekend. Congrats and thank you for all your hard work :)
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...
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
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