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Svetlana Finley's Discussions
Leg cramps
3 Replies
Started this discussion. Last reply by Cheryl Christine Pallme Biermann Sep. 13, 2009.
Welcome, Svetlana Finley!
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Sorry to hear about this, it must be very hard, but don't give up!!! God has plan and He will find you awesome kidney!!. We are praying for you!!
Hi Sally, thanks for your story i think we all been tru this when first diagnostics and relapse it most hardest part, then u just have to keep eye on everything any changes to catch on time. We be able to save Anna's kidney by catching her relapse o…
I can understand Anna's enthusiasm! I hope she clears the infection soon and remains stable and line-free for a long time!
Anna will not start Soliris unless she will start showing any sight of relapce. Research is for 12 and up and Anna will be 12 on May 22, so we just hope she can last with out the treatments untill then.
Sveta
When do you all get to start Soliris again? It will be good to see here save those kidneys.
So happy for Anna! It must feel so good to her. We'll pray she doesn't ever have to have another one! So is she starting soliris even if she is not needing infusions? I love Doernbechers, you guys are so lucky to be there. Cadance loved playing bing…
Hoping that Anna's numbers hold and that her staph infection clears soon!
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. O…
Awesome news, Amy!!! Anna has her line out ;-)
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 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
Update on Anna
As many of u know my oldest son Enoch had H1N1 and still battling with Tamiflu and it looks like it is not really helping. Today is his last dose and we will see what to do next. My younger son Misha got better with in 24hr after he got his meds and on the way to school.
Today Anna started so far she has cough and fever just 100.1, so we just sitting and waiting if her fever will go up. I did e-mail to our doctor and waiting what they want us to do. I know we can't give her any Tylenol, what do… Continue
Today Anna started so far she has cough and fever just 100.1, so we just sitting and waiting if her fever will go up. I did e-mail to our doctor and waiting what they want us to do. I know we can't give her any Tylenol, what do… Continue
Posted on October 29, 2009 at 11:50am — 8 Comments
Update on Anna
Hi, everyone!!
We had wonderful trip and made lots of memories ;-) Anna met with Tinkerbell and got to go on every ride she wanted;-)
We had her labs and treatment done last Wednesday it went pretty well, her labs still great. We will be continue every 3 weeks and eventually got once a month until she is 12 (in May) or before if research will be available for kids. Our dr. was talking about get fistula again and i don't really like that idea specially if we will be switching to Soliris she doesn… Continue
We had wonderful trip and made lots of memories ;-) Anna met with Tinkerbell and got to go on every ride she wanted;-)
We had her labs and treatment done last Wednesday it went pretty well, her labs still great. We will be continue every 3 weeks and eventually got once a month until she is 12 (in May) or before if research will be available for kids. Our dr. was talking about get fistula again and i don't really like that idea specially if we will be switching to Soliris she doesn… Continue
Posted on October 23, 2009 at 9:31am — 3 Comments
Comment Wall (32 comments)
- 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
- At 10:10am on February 12, 2010,
Theresa Pereira said…
- I am glad to hear this about Anna and wish you best of luck.
Have you had her vitamins and proteins tested?
Rgds.
Theresa
- At 7:55am on February 12, 2010,
Theresa Pereira said…
- Olivia has no damage to the kidney. She has a healthy kidney.
Since all genetic testing came out normal. Negative for Adams 13 and TTP and also some other type of new testing they do in Toronto which came out negative, her Dr. is testing further if its HUS at all. Symptoms match but blood and kidney results don't. Her Dr is leading specialist/research in HUS in Canada and head of pediatrics for the Canadian Kidney Foundation. We have had her blood sent to Germany, Italy, Toronto and New York. After years of study on her, they can't find anything. He has been in talks with the company that produces Solaris. They are well aware who she is. I did ask the specialist if Solaris was an option when she was in the hospital for her biopsy and he said not at all, she is not in that situation to be on that.
Next step, we are going to test her blood for vitamin and protein dificencies as well as thyroid. These tests are done locally and assume results will be in 48 hours.
Keep up the prayers, I pray for each and every child suffering with this frusterating condition and would love to hear your story.
Theresa
- At 7:54am on February 12, 2010,
Theresa Pereira said…
- Good morning
The only treatment she received while in the hospital (average 4-5 days) was IV fluids and twice platelets because she showed signs of blood in her vomit.
Other than that not much other than Tylenol for stomach cramps.
Her thrid episode was the milest.
She was on iron suppliment after her release for two months.
After the second episode my husband and I had suspected it was the motrin that was triggering this because we would give it to her when she showed signs of fever and what we thought was the onset of the flu. So after her second episode when the neph requested a biopsy we felt it was risky for nothing as we believed it would never occur again. Once she fell into a third episode (always triggered with her brother catching the stomoch flu) and it was the mildest one yet, we decided to biopsy the kidney. A week and half later we get an email from the hospital GREAT NEWS.....
- At 11:32pm on February 8, 2010,
Kortnee Fornetti said… - Thank you! I can't believe how supportive and welcoming so many people have been already! Our experience just began 3 weeks ago and it's been so overwhelming! It is so comforting to know that other people have gone through this and have a place to share their stories and information, especially because it seems so rare! Thank you for making this website so welcoming!
About
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...
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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
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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