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Svetlana Finley
- Female
- Salem, OR
- United States
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Svetlana Finley's Discussions
Leg cramps
3 Replies
Started this discussion. Last reply by Cheryl Biermann Sep. 13, 2009.
Welcome, Svetlana Finley!
Latest Activity
Hi Zofia,
Thanks for update!!! It is awesome she is doing soo well!! Happy Birthday to Ania!!!
He looks sooo cute ;-)
Thanks for update, we been praying for Ben. I am so sorry that he is not better yet, we will continue praying and believe that it will turn in right direction and God will give doctors wisdom what and how needs to be done for his healing.
U can try to contact our doctor in Oregon Doernbecher Children hospital, i know they do transplants and she is very interested in Soliris. Let me know if you want information.
Thanks for the news ;-)
I hope Anna is feeling better. I know it must be a stressful time for your whole family, you are in my prayers.
Anna still running fevers 103.2 and her blood in urine is up so does is protein. We will be doing full sets of labs tomorrow morning.
My advise would be to go back to the ER and have her labs run again after calling and letting them know the situation. I've told them before, this is what is happening, and we will be in in a little over an hour for a full set of labs, if you would…
chloe did the exact same thing 2 weeks ago but no ear infection she caught a viral bug that was going around.. we are still running tons of labs cause her H&H are low and creatnin is high.. we are getting more labs today and we are trying to hold of…
She had cold with fever and we did labs they did went down, but as she got better they went back up dr. put her on antibiotics for ear infection. Yesterday was her last dose and last night she started running fever again. I don't really know what to…
In Anna's case her dr. will get her treatments going, i hope your dr. is right and next week will be better ;-)
Praying for Ben and whole family...
Awesome!!!
Profile Information
- Birthday
- October 8
- 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:
- Tested but Awaiting Results
Svetlana Finley's Photos
Svetlana Finley's Blog
Anna and fevers
She had cold with fever and we did labs they did went down, but as she got better they went back up dr. put her on antibiotics for ear infection. Yesterday was her last dose and last night she started running fever again. I don't really know what to do, we just had her labs done on Tuesday and they were all normal.
Posted on July 15, 2010 at 12:33pm — 4 Comments
Update on Anna
Anna is been doing well, it is been 2 month with out treatment. She still takes iron supplement and lisinopril for BP. She still has some blood in her urine with dip stick it showing 2+ and little bit protein. Rest of her labs looks great even sometimes she looks soo pale it will go thru my mind "if she is ok". We praying that she won't relapse anymore. We still getting her labs done every 2 weeks, our next dr. app on May 24.
She is back to gymnastics, but having hard time to catch up with h
… Continue Posted on April 29, 2010 at 1:32am — 6 Comments
Anna is home and her line is out ;-)
In last two weeks Anna been having problems with her central line untill last weekend it was really started getting more worse. I had to pick up Anna from school on Monday and take her to Doernbecher hospital, for check up and culture of her line. On Tuesday morning Anna went to school and stayed there untill she was done with her school. During lunch time i received call from Anna's doctor telling me that she has STAFF infection and that they need to admit Anna and remove line on next day. I wa… Continue
Posted on March 5, 2010 at 9:46am — 5 Comments
Anna's visit to ER
Anna had unexpected ER visit last night. She started running fever i made phone call to doctor on call David. He decided to save our time and send us to local ER. Why sometimes i don't listen to my self? I was thinking what is the right choice to take her in. From one view i didn't wanted to drive an hour to children's hospital to her her cultures done. My doctor was saying the same thing and it was ok to go to local hospital even in the past we had p
… Continue Posted on February 7, 2010 at 7:49pm — 3 Comments
Anna
Anna is been doing well, last weekend she had a cold and our doctors were worry about her get relapse, but NO her labs were good. She went 4 weeks with out any problems, so our plan will continue another 4 weeks, then possibly, to get her line out right after she is done. We will be just watching her how she does, if she will need it another treatment, then she will be getting another line. Anna is very excited to get her line out and get in the pool ;-) My worry is in the past 2 years they trie… Continue
Posted on January 22, 2010 at 10:58am — 2 Comments
Comment Wall (36 comments)
- At 10:53am on June 22, 2010,
Linda Burke said… - I just want to let u know that there are free movies going thru summer. In our town they been doing for several years and it is all over US. Here is the link to find more information.
http://www.regmovies.com/nowshowing/familyfilmfestivalschedule.aspx
Have great Summer ;-)
- At 8:34am on May 10, 2010,
Elizabeth Farrell said…
- Hi Svetlana
Thanks for sharing that information.It's good to know that episodes can be that far apart.I hope your daughter is making a good recovery. Liz
- At 12:42pm on May 4, 2010,
Peg Reilly said…
- Thanks for wecoming me Svetlana. Peg
- At 12:13pm on April 29, 2010,
Lisa Beardmore said… - Hi soliris isnt an optiom for me, i havent heard of it before but they cant actually find the faulty gene in me so dont know what to do help prevent the HUS coming back. I did try rituximab after my first transplant but it didnt work and it was vey expensive. I am currently not on the transplant list as im not seen as a good cause as so many are waiting in englands for one. x
- At 1:47am on March 10, 2010,
Jooste Vermeulen said… - Hi, yes Rijk still gets peritoneal dialysis every day. We don't know for how long. Might be life long or when his body is big enough to risk a simultaneous liver/kidney transplant.
- At 10:48pm on March 4, 2010,
Linda Burke said…
- Welcome home!
- At 10:27pm on March 2, 2010,
Linda Burke said…
- Keeping you in our thoughts and prayers, hoping that the removal of Anna's line tomorrow goes well and that the infection is soon cleared. God bless you all!
- At 12:33pm on February 12, 2010,
Theresa Pereira said… - She will be 8 years old in May.
- At 11:43am on February 12, 2010,
Theresa Pereira said…
- This must be purchased organic and pure.
It is costly but worth it and believe it does contribute to her strength and health (esp kidney condition)
http://www.acai.vg/
I have attached a link if you want to research
Delete Comment
- At 11:43am on February 12, 2010,
Theresa Pereira said…
- Vitamin deficency B12 can trigger HUS. Also certain protien deficencies can.
We tested B12 but this showed up fine.
So now we are testing all and thyroid to rule out anything.
Science doesn't know EVERY trigger so as I mom I want all covered cause you just never know....
Gatta think outside the box.
BTW - Olivia takes half an ounce of ACAI BERRY every day
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 2010 genetic testing and treatment.
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...
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
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