"I'll talk to him and see what he's come up with over the weekend :) "
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Cheryl Biermann
- Female
- Barnhart, MO
- United States
- Blog Posts (49)
- Discussions (182)
- Events
- Photos (8)
- Photo Albums (1)
- Videos (1)
Cheryl Biermann's Discussions
Taking the dread out of the hospital visits
1 Reply
Started this discussion. Last reply by debbie thelwell Jan 18.
kidney stones
Started Sep 26, 2011
Transitioning
5 Replies
Started this discussion. Last reply by Cheryl Biermann Jul 27, 2011.
Cheryl Biermann's Page
Latest Activity
lisa ann peterson left a comment for Cheryl Biermann"I don't think he's worried bout insurance I think it's more me. We did have her vaccinated for meningitis and it didn't take to one form of meningitis. Also he's mostly concerned about when the point to stop Solaris is.. He…"
Cheryl Biermann left a comment for lisa ann peterson"Arrrgh! Why isn't he talking to the docs on this site? You get immunized for menegitis, and check the titers every so often! Please, you mean to tell me he said you have to find out about the insurance? That…"
Cheryl Biermann posted a blog postMemorial Day Weekend
I hope everyone has a wonderful Memorial Day weekend. This is Bill and I's anniversary week too, so we will be visiting our family members who have moved on to much greener pastures, heaven. It has been 16 years since we lost our oldest son, Billy to a car accident when he was 9. The anniversaries of his birth and death are, of course, really hard on the whole family, but Memorial Day weekend isn't so bad, because we get to celebrate the lives of many. May you all be blessed with the…See More
Cheryl Biermann commented on Jessica Olivia Frysz's blog post I am doing just fine :D"I am so happy you found your hearts desire in working with animals! They can only benefit from your passion, and I too am short, I know animals could care less about your size, (except of you're overly large and try to ride them or…"
Cheryl Biermann commented on Diane schaller's blog post Stomach aches"I cannot add anything further to the discussion except to say that Nathan has had issues from the time he could speak. Most of it was naseau and diareha. The nausea is realated to aHUS directly, because kidney patients of all kinds have…"
Dana M Simone commented on Cheryl Biermann's blog post No Title"Good news, Cheryl...you and Nathan are both incredibly strong!"
Linda Burke commented on Cheryl Biermann's blog post No Title"Glad to hear that you got the 'deluxe accomodations'! Your path has had a bit bumpy, and it's too bad that Nathan's health has had so many twists...let's hope that next week's labs are fine and that his info…"
Svetlana Finley commented on Cheryl Biermann's blog post No Title"Thanks for update!! We are glad his kidney doing well, hope blood will go away very soon"
Cheryl Biermann posted a blog posttrying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying! so we had nathan's kidney biopsied. we were tickled to find out we could stay in…
trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying!so we had nathan's kidney biopsied. we were tickled to find out we could stay in general care as this is the section of the hospital built in this century! a real bed not a chair and dvd player, not vhs, but of course we watched almost non stop river monsters. the biopsy went fine, butnit was a good thing to have an anthesiologist and not just sedation as he did wake up very…See More
Cheryl Biermann commented on Ivette Rios's blog post Bye Bye Stomi"You keep that attitude, Ivette. I admire your attitude, good luck in school and everything else, you're a champ.
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Cheryl Biermann commented on Cheryl Biermann's blog post Update on BK"We should have known when we sat in an empty admitting area for 30 minutes before they called us, (there by 6am), admitted by 6:30. We should have known when blood wasn't drawn until 9:30. We should have known when meds due at…"
Cheryl Biermann posted a blog postUpdate on BK
Well, Nathan did respond to the dose of Cypro, however, his creatnine jumped again so it's time to biopsy the kidney. Everything else looks good, (I got that oh oh feeling when his blood pressure sky rocketed earlier this week). The thinking is the BK is in the kidney or because we've lowered the anti-rejection meds so much in response to the virus that he has a little rejection. There is also the added interesting tid-bit that the kidney does not like prograf to begin with. It also could…See More
Linda Burke commented on Cheryl Biermann's blog post Nuerology Update, BK Virus, ect."May all the labs be wonderful, with an easy route (finally) for Nathan! Sending y'all a hug with best wishes!!!"
Profile Information
- Birthday
- March 1
- Do you have a friend or family member diagnosed with aHUS?
- Yes
Cheryl Biermann's Photos
Cheryl Biermann's Blog
Memorial Day Weekend
I hope everyone has a wonderful Memorial Day weekend. This is Bill and I's anniversary week too, so we will be visiting our family members who have moved on to much greener pastures, heaven. It has been 16 years since we lost our oldest son, Billy to a car accident when he was 9. The anniversaries of his birth and death are, of course, really hard on the whole family, but Memorial Day weekend isn't so bad, because we get to celebrate the lives of many. May you all be blessed with the…
ContinuePosted on May 25, 2012 at 2:09pm
trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying! so we had nathan's kidney biopsied. we were tickled to find out we could stay in…
trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying!
so we had nathan's kidney biopsied. we were tickled to find out we could stay in general care as this is the section of the hospital built in this century! a real bed not a chair and dvd player, not vhs, but of course we watched almost non stop river monsters. the biopsy went fine, butnit was a good thing to have an anthesiologist and not just sedation as he…
ContinuePosted on May 4, 2012 at 10:22pm — 3 Comments
Update on BK
Well, Nathan did respond to the dose of Cypro, however, his creatnine jumped again so it's time to biopsy the kidney. Everything else looks good, (I got that oh oh feeling when his blood pressure sky rocketed earlier this week). The thinking is the BK is in the kidney or because we've lowered the anti-rejection meds so much in response to the virus that he has a little rejection. There is also the added interesting tid-bit that the kidney does not like prograf to begin with. It also…
ContinuePosted on April 17, 2012 at 9:13pm — 1 Comment
Nuerology Update, BK Virus, ect.
Today we had our much anticipated visit with neurology. There were some indications via medical sources that neuroloical conditions could improve after transplant and/or Soliris.
Chorea was still evident but was called mild. Medication could be given for it, but he'd been on it before, (Depakote), and it caused his blood levels to plummet so we are not going down that road.
In a year, provided there are no seizures, he will be given another EEG, if it is…
ContinuePosted on April 9, 2012 at 4:28pm — 2 Comments
Passing on the torch
Crazy March Madness here in Missouri again. :) Baseball started with a new team, kindergarten testing coming up and someone "forgot" to give us the permission to join the Jr. National Honor Society, (anyone want to bet he didn't want to stay after school any more?), not to mention this wonderful spring a month and a half early! Bill is off tonight with the St. Louis Astronomical Society volunteering at one of St. Louis's premier children's hospital, St. Louis Children's...how cool is that…
ContinuePosted on March 27, 2012 at 8:01pm — 3 Comments
Comment Wall (44 comments)
- At 11:39pm on May 26, 2012, lisa ann peterson said…
- I'll talk to him and see what he's come up with over the weekend :)
- At 11:30pm on May 26, 2012, lisa ann peterson said…
- I don't think he's worried bout insurance I think it's more me. We did have her vaccinated for meningitis and it didn't take to one form of meningitis. Also he's mostly concerned about when the point to stop Solaris is.. He said he's looking into it. I think that he is truly putting Chloe's best interest first. I was frustersted that it wasn't going my way but I'm sure I got his head to thinking we will get it figured out it just might not go as fast as I want it. I know he was going to talk to some docs. I think it's just really overwhelming
- At 1:55pm on March 21, 2012,
Aida Billingsley said… Hi Cheryl, Thank you so much for answering my comment. so glad to hear you are all doing well!! I will check on Alexion's website. Thanks so much!!
- At 3:31pm on January 13, 2012,
Martin Martinović said…
Dear Cheryl,
thank you for the welcome and I hope that our friendship will be for the mutual benefit.
Best Regards
- At 4:02am on January 12, 2012,
Thank you! I visit the web site you recomended me, it is also interesting. I am glad that I can communicate and share expirience and problems to you and others peoples, it is much more easier to live with it. I will continue to communicate with you at this site. I apologise for my gramatic mistakes. See you
- At 6:01pm on January 3, 2012,
Kathleen McGregor said… - Thank you for the welcome. I am glad they have made progress with this disease.
- At 7:53pm on December 23, 2011, Kaye Vaughn said…
I received and accepted your invitation to become a friend. I have been exploring the foundation's website since during the time in August when Hannah was in ICU for so long, and I have forwarded information and links from it to Hannah's doctor. It's a wonderful resource.
I was especially interested in the information you sent Danna. Is there a place we can see the latest thinking about aHUS and continuing Solaris? I see on their own website references to when Solaris is discontinued, but I see nothing at all about recommendations of exactly when or even whether Solaris is to be discontinued or the frequency of infusions drastically reduced.
With the drastic changes in the outlook for patients now that Solaris has been approved, where is tracking being done about the course of treatment and outcomes, relapses, and resumption of treatment?
Was there a study that found that even with Solaris treatment, the disease remains there, more or less lurking and ready to become active if the drug is reduced or stopped?
- At 11:54pm on December 22, 2011, Kaye Vaughn said…
Hi Cheryl, I'm Kaye Vaughn, grandmother of Hannah, the aHUS patient, and mother-in-law to Danna Vaughn with whom you have corresponded recently. I'm interested in a reply you sent Danna recently regarding the current thinking on staying on Solaris and about scientists thinking there is low-level activity that cannot be detected. I would very much like to read all about that. Can you please share the source? Hannah was originally scheduled to begin taking Solaris less frequently in February, but her physician is at this point undecided about reducing the frequency. Thank God, Hannah continues to do very well with her infusions and is generally thriving.
- At 12:36am on December 15, 2011, Linda Burke said…
Just checking in to see how Nathan's been doing - hope things are settling down a bit after the infusion.
- At 3:25pm on November 23, 2011, Ryan Still said…
Hey cheryl hows nathan doing?
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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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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