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Phyllis Ann Talbot
- Female
- Cumming, GA
- United States
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Phyllis Ann Talbot's Discussions
Dialysis
17 Replies
Started this discussion. Last reply by Linda Burke Aug 8.
Phyllis Ann Talbot's Page
Latest Activity
Profile Information
- Birthday
- September 6
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) Protein(Gene)
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
Latest on t'plant and last clinic info
Hi there everyone - I'm late updating from this last clinic honestly because we are in a bit of a funk. A little bit stalled on the medical stuff - so I'll run through that and then get to the fun stuff ;-).
For the #'s folks - things are rocking along, Potassium of 4.3, phos of 8.5 (this is back up this month so they may change around some meds), BUN 44, creatinine 10.5, Platelets 215 and HGB and HCT down a little to 9.1 and 26.2. We are increasing his Aranesp from every 2 wee
… ContinuePosted on August 27, 2010 at 11:16am — 2 Comments
Transplant eval
Hi there - here's the post to our carepage - once we start moving forward on this - my carepage updates are probably a little less technical than what makes sense on this page - so I may start just putting the nitty gritty more detailed stuff here - but if I don't - feel free to ask me anything - we are happy to share in the hopes that the info or issues that come up with us on this journe
… ContinuePosted on July 13, 2010 at 8:37pm — 2 Comments
Vacation, the 4th, and news!
Hi there everyone! Sorry for the extra update this month but a couple of things we wanted to tell you all about and realized that there's something for everyone - all my GA folks are going to be lost on the first paragraph and all you Northern cousins and friends will be lost on the second! Check out the new pics we posted to help explain!
… ContinuePosted on July 5, 2010 at 1:51pm — 8 Comments
Clinic and vacation
Clinic and Vacation
Hey there everyone - just got back from a LONG clinic today. For the #'s folks here we go - BUN is down to 52, creatinine is down to 9.5, Potassium is down to 4.3, Calcium is steady at 9.8, HCT and HGB are still low at 9.3 and 26, and platlets are steady at 225. The big #'s news is his phosphorus - which had been giving us fits for awhile (last month is was 11.6 and this needs they lik
Posted on June 14, 2010 at 2:51pm — 7 Comments
Clinic today
Well, we are getting back to normal after all the excitement from the hike and had clinic this morning. Things went pretty well and Hyde was SO brave for having his port accessed (this had been getting more and more tramatic for the both of us the last few months) that Ms. Ginger (our child life specialist) got Hyde a super special toy. Have I mentioned lately how lucky we are to have Egleston/CHOA practically in our bac
… ContinuePosted on May 17, 2010 at 9:30pm — 9 Comments
Comment Wall (24 comments)
- At 2:20pm on August 25, 2010,
Joy Lewis 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 :)
- At 9:18pm on March 9, 2010,
Linda Burke said…
- The two big questions....how're Hyde's BP doing and what's the big news on the Tooth Fairy front for Ruthie? 8-D
- At 1:23pm on March 1, 2010,
Jodi Kayler said… - Wishing and praying for an uneventful surgery today. Hang tough little Hyde. XOXO, The Kaylers
- At 7:53pm on February 18, 2010,
Jodi Kayler said…
- Haha. No tigers this last trip. But I have some shameless photos with Elvis--and I saw Carrot Top. =)
- At 8:17am on February 16, 2010,
Joy Lewis said…
- Hi Phyllis! PA's are similar to NP's in their scope of practice but NP's can have their own patient load as a primary care provider, and can write prescriptions on their own. The education requirements are different too--when I graduate in 2011, I'll be a practicing NP. My clinicals are built into the program, whereas PA's have more of a medical model with a residency. (There's some variation by state, too.) It's exciting stuff!
- At 8:11am on February 12, 2010,
Kerri Grey said… - Thanks Phyllis, will keep you all updated.... we think hes pretty cute but we are biased. lol
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 2010 genetic testing and treatment.
Did you know...
• • • • • • • • • • • •
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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