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Paula Blanchard Lamigo
- Female
- Quantico, VA
- United States
- Blog Posts (2)
- Discussions (15)
- Events
- Photos (15)
- Photo Albums (2)
- Videos
Paula Blanchard Lamigo's Page
Latest Activity
Paula Blanchard Lamigo commented on lisa ann peterson's blog post Lil miss chloe"Lisa,
We are having the same problem, Devin's #'s aren't quite right either. I need to take him in to get labs done again to see how they look. He does, however have an LDH over 700, that isn't the number we…"
Paula Blanchard Lamigo commented on lisa ann peterson's blog post lil miss chloe bug"Lisa,
I'm keeping my fingers crossed for Chloe (not that I want her sick in any way), but I do want her to get into the study. We are at the same place, Devin's numbers are just slightly "too good" to get into the…"
Paula Blanchard Lamigo commented on Donna Kolp's blog post Bilateral Nephrectomy"Donna,
God is watching over Jonathan & we will keep him in our prayers. I hope the results come back as a benign tumor. We'll keep you in our prayers."
Paula Blanchard Lamigo commented on Paula Blanchard Lamigo's blog post Devin's update"It's from a combo of his hematocrit, hemoglobin, & his LDH (mostly his LDH)."
Amy Swarbrick commented on Paula Blanchard Lamigo's blog post Devin's update"I hope everything works out for Devin and he can easily get into the trial. I was wondering how you know that Devin is always in a low state of hemolysis? Brody as well has a factor H mutation and currently has 100% of his kidney function. We do lab…"
Paula Blanchard Lamigo commented on Paula Blanchard Lamigo's blog post Devin's update"I have heard that through the grapevine as well. I know that Devin, like Chloe, is in a constant state of low level hemolysis. I don't know the % rate of that, as I never asked. When I discussed the study with Dr. Kher, I specifically did not…"
Cheryl Biermann commented on Paula Blanchard Lamigo's blog post Devin's update"Paula, that would be wonderful!"
Paula Blanchard Lamigo posted a blog postDevin's update
I know I don't post on here very often, but I thought I would let you know what's been going on in our world. I have been working to get Devin into the pediatric clinical trial of Soliris, pretty much since I heard it was going to happen. Well, tonight I checked my personal email & both the physicians at Driscoll in Corpus Christi sent me a message to contact them as soon as possible. Our nephrologist, Dr. Kher, had already filled out some paperwork and releases and sent them on to them.…See More
Paula Blanchard Lamigo commented on Linda Burke's blog post Congratulations, Cheryl Biermann!"Way to go Cheryl!!!!!"
Paula Blanchard Lamigo commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Congratulations Tara! What an accomplishment! Your continued research in aHUS, has helped numerous families and has had a far-reaching positive impact on many people. It's a wonderful feeling to know that someone like you is helping to unravel…"
Paula Blanchard Lamigo replied to KaTrina Slaughter's discussion Treatment"Don't be afraid of a rejection from Tricare (or Triwest) as that region's insurance will be. If a letter from your physician states the necessity & the validity & not to mention, the cost effectiveness of the kidney transplant +…"
Paula Blanchard Lamigo commented on Deborah Deffenbaugh's blog post Alyssa is out of the OR"We hope Alyssa has a speedy recovery. We are praying for her."
Paula Blanchard Lamigo commented on lisa ann peterson's blog post update on lil miss chloe"I know you are dealing with lots of stuff right now, but these kiddos have enormous strength. Hang in there! We've got you in our prayers. I know this commercial will inspire more people to donate to save lives. :)"
Paula Blanchard Lamigo commented on lisa ann peterson's blog post softball tourney and chloe update"Way to go Lisa!!!!"
Paula Blanchard Lamigo commented on Linda Burke's blog post Pediatric CLINICAL TRIAL Link"Had our appointment on Friday, Dr. Kher is going to start trying to contact people regarding the trial & he told me he would let me know what he finds out in about a week. Lisa, if he finds out anything that might be helpful, I'll let you…"
Profile Information
- Birthday
- December 19
- 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)
Paula Blanchard Lamigo's Photos
Paula Blanchard Lamigo's Blog
Devin's update
I know I don't post on here very often, but I thought I would let you know what's been going on in our world. I have been working to get Devin into the pediatric clinical trial of Soliris, pretty much since I heard it was going to happen. Well, tonight I checked my personal email & both the physicians at Driscoll in Corpus Christi sent me a message to contact them as soon as possible. Our nephrologist, Dr. Kher, had already filled out some paperwork and releases and sent them on to them.… Continue
Posted on November 11, 2010 at 9:15pm — 4 Comments
Devin's Update
Well, Dwaine and I got back home late Sunday night and Devin didn't miss us at all. Of course he was glad we were home, but he did not ask for us the entire weekend. He just loved playing with Grandma & Grandpa. Both he and my parents were completely worn out from playing all weekend. Devin's last appointment was October 8th and he looks great. His HCT & HGB were low (as they always are), but at least the numbers were closer to the low end of the normal range. However, his proteinuria… Continue
Posted on October 22, 2009 at 10:59am — 7 Comments
Comment Wall (8 comments)
- At 3:19pm on October 19, 2009,
Heather Still said… - Hi Paula. It was awesome meeting you and Dwaine in Iowa. After 7 years it is amazing to see the progress in research and to be able to chat with people that have experienced a life like ours. This website has created a unique support system for all of us that I never dreamt we could have with aHUS. Best wishes to your family and I look forward to future updates on Devin.
- At 10:28pm on October 18, 2009,
Linda Burke said… - Hey there Paula!
It was great to met you in Iowa and, as Dwaine is likely reading this over your shoulder, thought I'd let you know that I just emailed the aHUS "business card" I designed.... hope he has some sucess with it. Looking forward to more cute Devin photos!
- At 9:37pm on October 18, 2009, Cheryl Biermann said…
- Paula, I'm so happy to have met you and Dwaine and hear all about Devin! It is really awsome that Katrina and you have hooked up as friends! What a support you will be for each other with your very unique circumstances! My husband was so excited to talk aviation with Dwaine, especially after his visit to Quincy-big time sticker shock. Hope to hear more from you soon, especially if the docs gave you any good news...stickin with you through it all, bill & cheryl
- At 7:20pm on September 3, 2009,
KaTrina Slaughter said… - Hi Paula,
Syd has Tri-care Prime. But is seen outside the Navy hospital. Once they see her chart, they already know they can't handle her. Plus our new doctor is awesome, and told them, that they couldn't handle her case and that she would be her primary care provider. She's just as overly protective as I am. Speaks well for her. Had to teach them about doing H&H every week, but at least they listen. But I think if they said to cut FFP cold turkey, I would end up in the hospital from stress and driving them crazy. :)
- At 7:17am on September 3, 2009,
Phyllis Ann Talbot said… - Hi there Paula - Devin is adorable!! Just was looking through things and saw you recently moved to Virginia? My husband's family is from Columbia, MD so we are up there a couple times a year. We send our labs, etc to Johns Hopkins since it's a little closer but when we were on hemo dialysis we almost went to Children's - we ended up switching to PD so didn't have to worry about that at least. Our son Hyde turned 3 in July. Glad to touch base with others on this website!
- At 7:54am on August 10, 2009, KaTrina Slaughter said…
- Does the moves not scare you the most. :) I don't do well with change at all. I get all OCD regarding Syd and moves. Your little boy is so cute.
We just moved from Jacksonville to Norfolk. Haven't met new doctors yet, but I hate the thought of changing her routine and worrying what her numbers will be. When they tapper you off, how do they do it? Do they monitor H&H more closely??
We meet the new doctor on Thursday. I am a complete wreck. Thankful that we are in a hotel room right now and I can monitor her all night. Doesn't do much for my dark circles, but I will take dark circles and an ulcer over another relapse.
- At 9:42pm on August 8, 2009, Linda Burke said…
- Hi Paula,
Thanks for your comment to KaTrina - we recognize that Devin's and Sydney's fathers are both in the military and appreciate their service to our country. It must give many additional challenges to have multiple moves that require not only family upheaval but also changes in medical personnel/approaches. We are grateful for all the sacrifices made by military families, especially for you and KaTrina as you care for a child with aHUS.
We welcome your participation and look forward to hearing Devin's story.
- At 11:13pm on July 15, 2009, Linda Burke said…
- Hi Paula, and welcome to the newly launched interactive website of The Foundation for Children with Atypical HUS. Our goal is to link family, friends, patients, and researchers dealing with aHUS into a collaborative and supportive network that shares information and ideas about aHUS. In exploring the path of aHUS and sharing our stories, we enlighten others and light our personal journeys as well. We look forward to your participation.
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 "aHUS Bootcamp" and "About aHUS" tabs 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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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