waiting for neuro doc to call back and tell me that her mri results last time i knew faster so i am a little worried.... iam inpaitent
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lisa ann peterson
- Female
- Okanogan, WA
- United States
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lisa ann peterson's Discussions
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Started this discussion. Last reply by KaTrina Slaughter Sep 17, 2009.
lisa ann peterson's Page
Latest Activity
lisa ann peterson commented on Cheryl Biermann's blog post 'cahterization leads to better numbers'
nice to hear that nathan is up and moving.. i will be praying that nathan gt stronger each and every day...
lisa ann peterson commented on Bill Biermann's blog post 'Cheryl and Nathan's big day'
sooooooooo awsome i am so glad to hear your great news.. god bless your family
lisa ann peterson commented on Dana M Simone's blog post 'Vision Problems'
chloe has vision problems and headaches. she wears glasses and sometimes her vision goes blurry.. the neurologist is investigating why this is all happening. the kidney doc says that her norvask(amlodapine) can cause headaches so we are doing more…
lisa ann peterson commented on Bill Biermann's blog post 'Linda Burke is honored as one of Maine's Volunteer of the Year finalist'
congrats linda
lisa ann peterson commented on Phyllis Ann Talbot's blog post 'What a morning!'
i think that truly our kiddos love to keep us very busy.. i will be praying that you will not have to walk a tightrope and things will get better fast.. and that his wonderful kidney will stay safe and healthy.. lots of prayers your guys way
Kerri Grey commented on lisa ann peterson's blog post 'lil miss chloe'
Wow Lisa,
How horrible for you all to have to go through!!! (((Hugs)))
lil miss chloe
well lil miss chloe had an ultra sound and we will know the results of that tommarow. also her labs are getting closer and closer to meeting all the criteria of the study. her hemoglobin is 10 her hematocrit is 29 her creatnin is .50 and her bun 22 and her ldh is 300 and also her platlets are 250. she also is wearing the 24 hour blood pressure monitor.. so we will send that back tommarow. on the 21st she will have the next MRI and she will also get labs again to monitor her. I am nervous and…See More
Blog post by lisa ann peterson
Cheryl Biermann commented on lisa ann peterson's blog post 'lil miss chloe'
I'm with you Lisa, this waiting really stinks; they're just kids. When do they have time to do kid stuff? We were talking about that this morning, as Nathan roamed around in his boxers, 20 times I said Nathan get dressed so we…
lil miss chloe
i woke up this morning thinking about how on the 28th of march chloe has been dealing with this disease for three years. it doesnt feel like its been that long. well lil miss has been staying strong, i find it amazing that we take away epogin in feb and she is maintaining her blood levels they are low but they have been lower. i have to believe that god has a plan and that I am just supposed to wait. chloe on wed will have some more testing, they are going to do a bladder scan and she will also…See More
Blog post by lisa ann peterson
Svetlana Finley commented on lisa ann peterson's blog post 'Chloe'
Thanks for update, I hope they will figure what causing those headaches, Anna has them too,we are waiting to see our specialist in May.
Linda Burke commented on lisa ann peterson's blog post 'Chloe'
Phooey....let's hope the news turns to a nicer tune soon, sweet Chloe needs some feelin' better days! Skyler's labs were slightly off for 2 months, guess it's been a bad winter of minor colds going around here in…
Cheryl Biermann commented on lisa ann peterson's blog post 'Chloe'
Hi Lisa,
Good luck with everytrhing, I know I probably don't need to remind you not to give her dye during her MRIs, but I'm doing it anyway, just in case in the frantic need to relieve her of symptoms and pain and…
Kerri Grey commented on lisa ann peterson's blog post 'Chloe'
keeping you in our thoughts and prayers!!!
Chloe
Well lil miss went to the doctor today and the neuro doc said that we are going to keep a diary of her headaches and doc Hernandez is going to change blood pressure meds to see if her headaches get better. She is also getting another MRI to check her lower spine to see if that's what's causing her incontinence there is also alot of other tests they are going to run to see if they can figure out why she is having those migraines and they also don't think it's the Chari one malformation. Also she…See More
Blog post by lisa ann peterson
Labs were same as last month but Chloe now has a cold and a blood pressure of 148/128 waiting an hour and taking it again
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Comment Wall (35 comments)
- 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
- At 11:21pm on February 18, 2011,
lisa ann peterson said…
- Chloe has been getting very bad headaches so they are going to do an MRI next week unless they get worse then we will get one this weekend.. She is getting bout 1 an hour not sure if it has to do with her fall on valentines and the fact that she has fractured her neck a couple years back
- At 9:41pm on February 7, 2011,
Grace said…
- I'm sorry you and Miss Chloe have been having a rough winter. My thoughts & prayers are with you.
- At 6:08pm on January 22, 2011,
Riley Brewer said… - Hi Lisa, thanks for the comment. I'd never heard of aHUS before last Saturday. Dr. Hernandez has been fantastic and we're learning fast. We are at Sacred Heart waiting for the surgeon to finish inserting a catheter for dialysis. It's a bummer, but we're in good hands here.
- At 8:30am on December 17, 2010,
Cheryl Biermann said…
Oh, no, Lisa, I just saw the comment about Chloe being in the ICU from following Linda's comment. Are things looking any better? Saying a prayer for her.
- At 10:29pm on December 16, 2010,
Linda Burke said…
Hi Lisa,
How's Chloe doing tonight? So sorry to hear that you've had to put on your 'tuff hat' yet again after she's been admitted to ICU...hope they're not seeing that her respiratory issues are provoking aHUS activity. Saying prayers for Chloe and you all.
- At 10:12am on November 6, 2010,
Joy Lewis O'Brien said… - Lisa, I'm glad to hear that Chloe's hearing seems to have improved! Ear pain in kids can be so horrible--it makes them so tired and cranky. I'm glad her doctors have found something to make her feel better! Keep us posted!
- At 12:13am on September 24, 2010,
Linda Burke said…
- Almost time for the Tuff Hat Tournament....wishing you good weather and a great turnout! Thanks so much to your friends and families for helping you to raise $ for aHUS research!
- At 5:00pm on July 4, 2010,
- Thinking of you & hoping Chloe's feeling well enough to have some fun. Fingers crossed for Tuesday and beyond.
- At 12:22am on July 4, 2010,
Jodi Kayler said… - Hope you guys are hanging in there. I hope Chloe has better labs on Tuesday. =( Let us know. Happy 4th! -The Kaylers
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)
lisa ann peterson's Videos
Lisa ann peterson's Blog
lil miss chloe
well lil miss chloe had an ultra sound and we will know the results of that tommarow. also her labs are getting closer and closer to meeting all the criteria of the study. her hemoglobin is 10 her hematocrit is 29 her creatnin is .50 and her bun 22 and her ldh is 300 and also her platlets are 250. she also is wearing the 24 hour blood pressure monitor.. so we will send that back tommarow. on the 21st she will have the next MRI and she will also get labs again to monitor her. I am nervous and… Continue
Posted on April 7, 2011 at 12:53am — 1 Comment
lil miss chloe
i woke up this morning thinking about how on the 28th of march chloe has been dealing with this disease for three years. it doesnt feel like its been that long. well lil miss has been staying strong, i find it amazing that we take away epogin in feb and she is maintaining her blood levels they are low but they have been lower. i have to believe that god has a plan and that I am just supposed to wait. chloe on wed will have some…
ContinuePosted on April 1, 2011 at 9:18am — 1 Comment
Chloe
Well lil miss went to the doctor today and the neuro doc said that we are going to keep a diary of her headaches and doc Hernandez is going to change blood pressure meds to see if her headaches get better. She is also getting another MRI to check her lower spine to see if that's what's causing her incontinence there is also alot of other tests they are going to run to see if they can figure out why she is having those migraines and they also don't think it's the Chari one malformation. Also she… Continue
Posted on March 22, 2011 at 12:17am — 4 Comments
Lil miss Chloe P
Ok guys Iam a little raw when I explain this.. We hot Chloes MRI results back from ties and it seems that she has a borderline chiari one malformation It might explain more than we thought like peeing pants headaches leg and arm pain vision problems and vomiting at random.. I don't know much from here except that we are hopefully going to hear from the nerosurgeon today to find out what the next step is.. All I keep wondering is " really" Ian normally the woman who has a list of questions for… Continue
Posted on March 3, 2011 at 9:14am — 10 Comments
Chloes day
Well let's start with some good news... Chloes heart is still strong thank god.. Now with labs which are still good well hemoglobin was 10 hematocrit is 30 and platelets were 250 and creatinine is .48 and bun 28 ldh is 215 so no solaris yet.. We will remain off epo and wait another month before labs unless she starts to get sick she qualifies except for her ldh and platelets so like I said we wait. I felt like a nervous wreck thinking of how tired she has been and how tired she will get..I pray… Continue
Posted on February 17, 2011 at 9:54pm — 2 Comments
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 2011 genetic testing and treatment.
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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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