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Jill Ziegler
- Female
- Jonesboro, AR
- United States
- Blog Posts (6)
- Discussions (1)
- Events
- Photos (4)
- Photo Albums
- Videos
Jill Ziegler's Discussions
Hospitals Using Soliris
2 Replies
Is there any hospital in the US that has used soliris successfully? I know Iowa is considering it, nut has anybody done it?ThanksJillContinue
Started this discussion. Last reply by Cheryl Biermann Sep 27, 2010.
Jill Ziegler's Page
Latest Activity
Dana M Simone commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
I guess I speculate too much by nature, although, I have gotten much better through the years of putting everything into God's hands and going on faith!
Cheryl Biermann commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
Yeah, we've always always said, normal doesn't have to be typical, you don't focus on what can't happen, but only all the multitude of things that are possible, now our list of possibilities just got a lot longer!!!
Jill Ziegler commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
You know, I see this expereince in a totally different point of view. Yall were the healthy mothers with sick children and I was the sick mommy with a healthy child. I am 110% happy it was me and NOT Madeline. But when I look back over the three…
Cheryl Biermann commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
I just find myself tearing up when thinking about everything, whereas before, just as you said, you just do what has to be done, no matter what, where there is a will, there is a way!
I don't dread that bad things might reoccur, only if…
Dana M Simone commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
Jack also went through a brief period of adjustment post-transplant (06/13)....I think it was just overwhelming to suddenly be free of dialysis after 4 years, plus he had just graduated, and was turning 18. Almost 4 months later, his life is 180…
Found the Kidney Shaped lollipops and will be passing them out for Halloween, along with a note teaching kids to love their kidneys!!!
Status posted by Jill Ziegler
Seriously? I have to wait 2 years to see you all again! I vote to make this an annual event!
Status posted by Jill Ziegler
Monica D. Keleher left a comment for Jill Ziegler
Hi Jill - I was so amazingly wonderful to meet you in person this past weekend at the aHUS Parent Conference. What a beautiful person you are, inside and out! Blessings to you! Monica
Who brought the jelly belly kidney suckers to conference? Need them to pass out at Halloween. Looking on internet. Yeah, I'm that mom!
Status posted by Jill Ziegler
Jill Ziegler commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
I bet he is doing fine. Chris says I talk super fast now.....prob the steriods:) Its prob the mama bear in us to worry about our kids,
Cheryl Biermann commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
T plant was 8/31. Yep, Nathan's a pretty laid back kid, but he's waking up before me, talks non-stop sometimes, nit picks his sister & reminds us of things, like, will dad miss mass when he's at Iowa? He'll keep…
Jill Ziegler commented on Jill Ziegler's blog post 'www.kidneysnowincluded.blogspot.com'
I cant remember, how many weeks has it been since transplant? I know Bill mentioned that at the conference about he says yeah I feel better with no enthusiasm. But he is younger, a boy and may not be able to describe how he feels. I think I…
Profile Information
- Birthday
- March 8
- 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?
- Yes
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Jill Ziegler's Photos
Jill Ziegler's Blog
www.kidneysnowincluded.blogspot.com
Many of you have been so kind to follow my kidneys not included blog but since a new chapter has begun.....like a butterfly (thank you Linda) I have started a new blog following my journey post transplant.
www.kidneysnowincluded.blogspot.com
I hope you will find it uplifting and encouraging. And please feel free to ask me any questions. I am an open book and honestly, nothing is too personal! LOL
If you are not…
ContinuePosted on October 9, 2011 at 11:02pm — 11 Comments
Life is Good again!
I am exactly one week post kidney transplant and I haven't felt this good in 3 years! I still have a few more hurdles to get over with the recovery process but my life has already changed drastically for the good. I had a living donor give me one of her strong, beautiful kidneys on June 23. I am so thankful and pray that each and every one of you wo are still battling HUS and dialysis will get your lives back as well. The recovery hasn't been too bad. I thought I was ready for the pain because… Continue
Posted on June 30, 2011 at 9:11am — 6 Comments
My Blog
www.kidneysnotincluded.blogspot.com
My journey of kidney failure and aHUS.
Posted on January 5, 2011 at 5:37pm — 2 Comments
My Blog
Here is a link to my blog. It details my story with aHUS from the begininng. Unfortunately, I have had some bad experiences with my old nephrologist. But hopefully someone can learn from the experiences I have been through, I have also met some of the countries best and brightest regarding aHUS. So check it out!
www.kidneysnotincluded.blogspot.com
JZ
Posted on May 14, 2010 at 10:12am — 4 Comments
Comment Wall (20 comments)
- At 2:59am on October 11, 2011,
Monica D. Keleher said…
- Hi Jill - I was so amazingly wonderful to meet you in person this past weekend at the aHUS Parent Conference. What a beautiful person you are, inside and out! Blessings to you! Monica
- At 12:20am on October 10, 2011,
Patrick Brophy said…
Hi Jill
Thanks for inviting me to be your friend! Let me know if I can help out with any questions you may have. Pat Brophy
- At 1:47pm on October 9, 2011,
Nicolas said… - Hi Jill,
I read your page. It's wonderful. I agree with you. We are a small family. Here in France, Lou-Anne, our daughter who is 6 years old who suffers from an aHUS. She became ill in January 2006. After five years of dialysis, it is Soliris since July 15, 2011, the day of his transplant. Here in France there are only very few children grafted Soliris (1 or 2). We do not have permissions for the Soliris but it's coming.
I dream of the day when we can all get together and celebrate the end of this disease thanks to treatment.Best regards
- At 12:12am on June 21, 2011,
Linda Burke said… Hi Jill,
You've been in my thoughts and prayers - a special week for you! Wishing you all the best, and sending a hug - Linda
- At 9:29pm on June 2, 2011,
Grace said…
- Good luck on your walk Saturday--I'm sure it'll be great. And best wishes for your upcoming transplant--that's so exciting! I hope it's the commencement of many years of good health.
- At 7:57pm on March 25, 2011,
Linda Burke said…
Hi Jill,
I was thinking that you might want to post your Kidney Walk info under the "Events" section- I'd love to see other aHUS patients/families post comments of support or messages that they/ve formed teams in their communities, too.
- At 7:14pm on March 7, 2010,
Bill Biermann said…
- happy belated birthday!
- At 10:15pm on March 6, 2010,
Linda Burke said…
- Wishing you a happy birthday tomorrow- may this year be filled with blessings beyond your wildest dreams!
- At 6:03am on November 23, 2009,
Sara Palmer said… - Hi Jill thank you for your reply. I cant help thinking that here in the UK so little is known about aHUS but then I think of the size of the UK compared to USA and then it appears right that there are more cases identified there than here and therefore the USA are more on top of it, 2 years ago when Jack died the Consultants could only treat his symptoms and that was through Plasma, but Soloris had not been heard of for aHUS so it has come on in the last 2 years not sure it has ventured to the UK yet though! What do you believe trigged your dormant gene to come to life? I dont know what triggered Jacks as he lived nearly 5 years without it being active then it all of a sudden struck. I know subsequent relapses were usually started by a cold type illness. I so worry deep down that my Daughter may to be sitting with a ticking time bomb but sometimes knowing is worse. It took 5 months and results back from Paris to find out what was actually wrong with Jack, the UK really are not that advanced. Everyone helps everyone else on this site so welcome and thanks for sharing your story.
- At 6:07pm on November 22, 2009,
Deborah Deffenbaugh said… - Hi Jill! Thanks for introducing us to this website. Hopefully both you and Alyssa will find support and some answers here. Alyssa is doing well physically but I am a little worried about her emotional ly. I think she is understandably discouraged and now that we have to go to Iowa before the prospect of any transplant--it weems even furher out of reach to have a normal life again. How is everything with you? When is Madeline's BD? Take care and hope all is well.
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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.
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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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