The Atypical HUS Foundation

lisa ann peterson
  • Female
  • Okanogan, WA
  • United States
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Started this discussion. Last reply by KaTrina Slaughter Sep 17, 2009.

 

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At 12:13am on November 9, 2012, Linda Burke said…

Hi Lisa -

Been hoping that some good news is headed your way - heard any updates yet regarding Soliris?

 

At 9:32am on October 10, 2012, Cheryl Biermann said…

Lisa, crossing my fingers for Chloe!  Thanks for letting us know, we'll all be praying for the best possible.

At 12:31am on October 10, 2012, lisa ann peterson said…
Well I know it's been awhile bits here is a quick update Chloe will be having a biopsy on Tuesday the 16th and may start Solaris shortly after the biopsy I will try an keep everyone posted a to what steps we take after her biopsy and how it all goes. I'm not very good and staying up to date....
At 1:20am on July 22, 2012, lisa ann peterson said…
Well Chloe caught a very yucky bacterial infection called pseudomonas. She's been fighting it for over three weeks and just got off a very strong antibiotic for ten days. We went to get repeat labs yesterday and Chloe's bun is 40 and her creatnin is .68 ad her potassium is 6.2 her blood pressure has been going super high and super low. Shes been super tired today and her ear started draining again so the infection might be back :( so dr h called today and he wants to see Chloe first thing Monday morning and he wants her to see the ENT doc... Poor Chloe tonight she said a prayer at dinner and asked God to help her not be sick anymore. I just hope that the infection gets cleared up and we can figure out how to get her kidney numbers back to normal and I'm praying that her AHUS doesn't relapse... I'll post more on Monday
At 10:56pm on May 28, 2012, Linda Burke said…

Hi Lisa,

Just checking in to let you know that I'm thinking of you - hope today has brought some sense of peace.  The struggle with aHUS is difficult and wearing, so many of us understand the frustrations that parents can encounter during the ups and downs of the disease process.  I know we've spoken of having you register Chloe's aHUS case and your accompanying wishes and concerns at 1-888-SOLIRIS - if you've already called, I hope they had some insights that helped.  Sending along a hug, Linda

At 8:51pm on May 27, 2012, Cheryl Biermann said…

Hi Lisa, Nathan needed two menegitis vaccinations because one didn't take.  There are options.  I know I come on strong, but that's because this disease is so tricky, and sneaky and dangerous!  Right now current research is pointing to the disease is never truly quiet, changes are happening even when in" remission".  It is our docs opinion that he stays on the meds and doesn't come off, for this reason.  I think this is the right thing too, because he had negative results just because he grew!  We had to have an increase in the dose.

At 11:17pm on May 26, 2012, Svetlana Finley said…

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 give you information and they will also contact your incurance about covarege. If your doc. just want to lower Cloe meds and just see what happens i dont think that is right way to go. I will suggest to contact Alexion they will assign you a case worker and they will help you. i totally agree with Cheryl.

At 10:17pm on May 26, 2012, Cheryl Biermann said…

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 doesn't make sense at all, the hospital should be doing this, our entire team of doctors/transplant nurses and social worker were involved trying to get it for Nathan!  He needs to call Alexion and talk to the docs on the doc to doc registry!  Your social worker needs to be involved and so does the doctor.

At 9:50am on May 26, 2012, lisa ann peterson said…
Well lil miss had her doctors visit today. We discussed Solaris and we discussed Chloe's future. I talked with dr. H about Chloe being on all the high doses of meds and what its doing to her body. I told him I think I would like to use Solaris and he informs me the study is now closed they are not accepting patients. I felt like I was punched in the gut. We discussed Chloe being on so many pills and he said well she looks good now I told him its easy for you to look at the now but I am her mom and I need to look at the big picture what these meds and this disease is slowly doing to her body. We are going to see what her body can handle and we are going to start weaning her off some blood pressure meds and stomach meds in hopes that she maintains without them. She can't be on these meds forever without it causing damage to her other organs. He also said if we decide to try and get the insurance to approve the medication that we are subjecting her to being susceptible to meningitis. So He said he will do some more research but as of now there are no answers for her and I tell u what as a parent that is overwhelming and frustrating and it makes me sad. But really I am greatful that I have Chloe and that she looks good. We don't have results to her labs and won't have those till Tuesday so I'll update when I find out labs. I just wish that this darn disease had a cure and that we had a long term plan for Chloe..
At 9:52am on March 7, 2011, lisa ann peterson said…
Lil miss has another headache today poor Lil miss I feel so bad for her 

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:
Factor H (CFH) /Protein (Gene)

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Lisa ann peterson's Blog

So it's been awhile.....

Well I'm first going to apologize to my Ahus friends for not sharing all that has happened in the last 3 months... So first Chloe actually had her biopsy the first week of sept.. She bled a little more than normal and she was not happy about that but she is healed up now and back to her beautiful self.. Second we just celebrated her 9th birthday what a blessing every day has been with her I'm great full for every day and every moment I get to be in her presence I'm blessed to have my beautiful… Continue

Posted on September 22, 2013 at 4:00pm

Thursday is the big day

Well it's hard to believe that little miss Chloe has been doing treatment every other week since November..Chloe is having her kidney biopsy on Thursday at 845 am we are ready for some long awaited answers.. Is the medicine working? Will we continue to use the medication? And how is her AHUS doing? Well I will tell u how I think she is doing... She looks amazing and is off many of her meds her labs have been good this past month but most of all she is happy :) as far as moving goes we might not… Continue

Posted on June 25, 2013 at 7:25pm — 1 Comment

Biopsy update

Chloe's biopsy showed mild inflammation of the intestine. Doc said nothing to be super concerned about. He thinks its abdominal migraines and he is starting her on some elovil (sp) she had to go get an EKG to make sure her heart is strong enough for the medication. I will let you guys know what the EKG says and if the medication works

Posted on May 17, 2013 at 12:37am — 1 Comment

Chloe's endoscopy

Chloe had an endoscopy yesterday and they said her intestines look great.. They took a few biopsies and we will know by the end of the week if her stomach problems are from some disease process or If they are from abdominal migraines.... Also Chloe's treatments have been going well and her kidney biopsy is scheduled for June 27th in Seattle it's been the longest 6 months of my life... I'm very interested if its helping.... Praying for some answers and ohhh man was it nice to see dr h in Seattle… Continue

Posted on April 24, 2013 at 11:20am — 2 Comments

San Diego childrens

Does anyone know anything about San Diego childrens I was wondering about docs over there???

Posted on March 18, 2013 at 11:44pm — 1 Comment

 
 
 

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