"Hi Joey, We haven't heard from you in a while, so I hope that means your brother is doing much better. If he is still on plasmaphersis and still getting "restless legs", it could be calcium-related. If citrate is used as a blood…"
Joey Krug's Page
Latest Activity
Joey Krug replied to Linda Burke's discussion Soliris"My brother has started to improve with soliris, he is on his second week, yesterday his creatinine fell from 3.3 to 2.5, and today it fell from 2.5 to 1.9. He might get out of icu tomorrow!"
Joey Krug replied to Christy's discussion Prayers"He is in PICU there. I forgot to add, has anyone heard of ahus patients having restless legs syndrome like symptoms? It happens to my brother sort of randomly, and gets pretty bad during plasma exchange.."
Joey Krug replied to Christy's discussion Prayers"My brother is now in U of Iowa Hospital, he has a bacterial infection (probably in his lines) and is septic. He is in much better hands who actually know what they are doing! He is hemolyzing. Please pray that he gets better and more stable to allow…"
Cheryl Biermann left a comment for Joey Krug"Sorry to hear about your brother's blood pressure issues, I want you to know that we too are praying they are able to bring it down soon. Just as hopefully, a little comfort to you, most of us have been in that range, if not that high, and have…"
Joey Krug left a comment for Linda Burke"He's not doing too well bp got really high to 200/100. :(. Thanks for the support!"
Linda Burke left a comment for Joey Krug"Hi Joey,
Just checking in to say hello and to see how your little brother Kelley is doing now....wishing you all the best!"
Linda Burke left a comment for Joey Krug"Hi Joey,
I believe that you're the first teen who's joined this online aHUS community in support of a sibling (a brother, in your case) with aHUS. My heart goes out to you, and to your whole family. Feel free to post a family photo, write…"
Heather Still left a comment for Joey Krug"Praying for your brother. How old is he? Hoping you can find some answers on this website and that finding some people that know how you're feeling is a comfort to you."
Joey Krug replied to Christy's discussion Prayers"Please pray for my brother Kelley, he has kept hemolizing goig to hospital, getting home, and repeating. I hope he gets better and gets Soliris, thanks in advanced."
Cheryl Biermann left a comment for Joey Krug"Welcome to our interactive site, I hope this site gives you some comfort and information as you wade through the tangled web of aHUS. We look forward to hearing you story and and please feel free to join in an any of the conversations."
Profile Information
- 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
Comment Wall (6 comments)
- At 5:58pm on August 11, 2010,
Grace said…
- Hi Joey, We haven't heard from you in a while, so I hope that means your brother is doing much better. If he is still on plasmaphersis and still getting "restless legs", it could be calcium-related. If citrate is used as a blood thinner during pheresis, it chelates (removes) ionized calcium. When calcium levels get too low, it can cause a variety of syptoms including tingling, "restless legs" and muscle cramps. To prevent this calcium gluconate is infused at the same time, but the dosage or infusion rate may need to be adjusted during treatment. If you need more information please ask. I hope you are having a fun summer!
- At 6:45pm on April 28, 2010, Cheryl Biermann said…
- Sorry to hear about your brother's blood pressure issues, I want you to know that we too are praying they are able to bring it down soon. Just as hopefully, a little comfort to you, most of us have been in that range, if not that high, and have come out of it all right. God bless you all.
- At 7:50pm on April 26, 2010, Linda Burke said…
- Hi Joey,
Just checking in to say hello and to see how your little brother Kelley is doing now....wishing you all the best!
- At 11:03pm on April 22, 2010, Linda Burke said…
- Hi Joey,
I believe that you're the first teen who's joined this online aHUS community in support of a sibling (a brother, in your case) with aHUS. My heart goes out to you, and to your whole family. Feel free to post a family photo, write about your experiences, or ask questions - of course with your parent's approval- and your parents and whole family is welcome to join this website, too. Of course we'll join in prayers for Kelley.... God bless you all !
- At 7:50am on April 22, 2010, Heather Still said…
- Praying for your brother. How old is he? Hoping you can find some answers on this website and that finding some people that know how you're feeling is a comfort to you.
- At 6:07pm on April 19, 2010, Cheryl Biermann said…
- Welcome to our interactive site, I hope this site gives you some comfort and information as you wade through the tangled web of aHUS. We look forward to hearing you story and and please feel free to join in an any of the conversations.
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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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.
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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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