"Lisa, i contacted Alexion and got Anna registered with them, got all info, talk to my doctor and she told me they already contacted her about Soliris. That is how we started, my doctor was worry about insurance u can talk to Alexion and they will…"
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Svetlana Finley
- Female
- Salem, OR
- United States
- Blog Posts (19)
- Discussions (60)
- Events
- Photos (99)
- Photo Albums (9)
- Videos (1)
Svetlana Finley's Discussions
Platelets aggregation
Started Dec 29, 2010
Leg cramps
3 Replies
Started this discussion. Last reply by Cheryl Biermann Sep 13, 2009.
Welcome, Svetlana Finley!
Latest Activity
Svetlana Finley posted a blog postAnna and Soliris
Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.See More
Svetlana Finley replied to Linda Burke's discussion Soliris"Anna just finished her 4th treatment.
before first treatment her labs:
PLT 245
Hemoglobin 11.8
Hematocrit 35
2nd
PLT 267
Hemaglobin 12.7
Hematocrit 37.4
3rd
PLT 260
Hemoglobin 12.4
Hematocrit 36.7
4th
PLT 323
Hemoglobin 13.1
Hematocrit…"
Svetlana Finley commented on Diane schaller's blog post Stomach aches"HI Diane, Anna went thru stomach pains they couldn't figure it out what cause it, GI doctors prescribed her several different meds for 6 weeks corse, to calm her stomach and then it got better. "
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks for update!!! Glad to hear he finally get to swim and play sports. I think that is most awesome feeling for our kids ans us, when they are free from their lines. With Anna we started Soliris, then we will redo her antibodies results in…"
Svetlana Finley replied to Linda Burke's discussion Soliris"HI everyone, Anna started her Soliris treatments last week. Even her bloof work was good we decited to start Soliris based on her kidney biopsy results, constantly having blood and proteine in her urine and back pains. This week it was finally she…"
Svetlana Finley replied to Lannette Yorgason's discussion Check ups"Hi Lannette, for check up i think it is better talk to ur doctor, our doctor wanted to see us every 6mo, but with all Annas problems she end up see us every month, Labs was done monthly, but if Anna was sick we had to do labs on that day to make…"
Svetlana Finley commented on Amy Swarbrick's blog post Tummy Troubles"Thanks Amy for suggestion, BTW Amira say HI!!!"
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"
Linda Burke commented on Svetlana Finley's blog post Update on Anna Finley and questions"Sorry that it's been such a roller coaster for Anna, which means that it's likely that your whole family would welcome a more peaceful springtime!
I'm not aware of any aHUS patients using Soliris for antibody issues such as you…"
Cheryl Biermann commented on Svetlana Finley's blog post Update on Anna Finley and questions"Well, I'm glad sports are the reason for her resistance. There are exceptions made by these programs, you're not going to get an advantage from using them properly, only when healthy people choose to abuse them. I remember even…"
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Anna used to take Pred, wile she was on Plasma exchange back in 2010 she didn't like it. We got her off as soon as she be eble too and yesterday I talked to her, she poor tears over and over. Looks lie it will be very tough to make start again,…"
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks for reply Michele, how offten he recived those medications?"
Profile Information
- Birthday
- October 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?
- 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 Soliris
Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.
Posted on May 18, 2012 at 11:44am — 1 Comment
Update on Anna Finley and questions
It is been crazzy here seems one thing after another. She had her ear surgery in December, then in January she started having back pains and blood and proteine in her urine. Then in February she had stomuch paint to the point she totally stoped eating doctors diagnosed her with Lactose intolarance, telling me she cant have any dairy product and putting her on 3 different medications for it. I looked up on internet about Lactose intolarance and finding out Anna never had any of the simptoms…
ContinuePosted on April 4, 2012 at 5:17pm — 4 Comments
Update on Anna Finley
Hi everyone,
First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.
Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.
Yesterday we were first ones to see our doctor and last ones left her office…
ContinuePosted on January 31, 2012 at 7:48am — 1 Comment
What hotel for conference?
I am wondering those who coming to the conference what hotel everyone planing to stay? I would like to stay where other will be staying, so we can carpool.
Posted on September 15, 2011 at 10:21am — 4 Comments
Update on Anna and CD46
Hello everyon!!!
It's been awile since i updated on Anna. She is been doing well and enjoying gymnastics. Today we had our visit with our doctor, Annas labs continue stay where we like them too. They took her off blood pressure medication one medication less ;-) We also had disscation on some testing they did in the begining this year so she is positive for CD46 and she just below range for Factor B normal for it was 20-51 and hers is 19, so our doctor dosen't know really if that is…
ContinuePosted on September 12, 2011 at 11:48pm — 2 Comments
Comment Wall (41 comments)
- At 4:19pm on October 14, 2011,
Ryan Still said… - hey Svetlana Finley how is Anna doing
- At 4:26am on October 12, 2011, Monica D. Keleher said…
- Hello Svetlana -was so great to meet you at the meeting! Thank you for the friend invite :) Take care, Monica
- At 7:58am on October 11, 2011,
Selma Bennett said…
Yes! It was so great to meet you too! Glad you made it home safe and sound. Still trying to process all the information we got at conference. A time full of tears, many smiles and lots of hope!
- At 1:46pm on August 23, 2011, Ryan Still said…
- 6 medals nice
- At 5:14pm on August 15, 2011, Ryan Still said…
- How many medals has she won
- At 3:59pm on August 14, 2011, Ryan Still said…
- Hi Svetlana how long has Anna been doing gymnastics
- 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 Barker 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.
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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.
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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!
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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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