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Melissa Hearn's Events
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2nd Annual Hike for Hyde
April 17, 2010 from 9am to 2pm – Sawnee Mountain Preserve Park
Melissa Hearn's Page
Latest Activity
Sorry to hear you're not going home today Phyllis. That darned BP always gets in the way of happy homecomings!!! Also sorry to hear about the allergic reaction!
Do you guys need anything?!? I can be there in 20 minutes just say the word! Sorry I di…
Kerri,
I know what you mean about the emotional roller coaster. I so wish every case was the same and the doctors and research was all figured out already!!!! I also can completely relate to not knowing what and how much to share with friends and fa…
We stopped all plasma pheresis on Bryan as soon as he started his Soliris, for the reasons mentioned above, the exchange taking the medicine out along with the blood. Bryan was getting FFP by the way, and it was the same concern. Bryan's doc, Dr. Sh…
Thanks for the update Kerri! That will be my prayer too! Hang in there. We're all cheering for you!
2nd Annual Hike for Hyde at Sawnee Mountain Preserve Park
April 17, 2010 from 9am to 2pm
A fun-filled day - check out www.hike4hyde.com and go to the registration page. Event is in honor of Hyde Talbot, Bryan Hearn, Kegley Hubbard, as well as all the other kids struggling with AHUS!
Hi Martha,
We're also in Atlanta and my little boy Bryan is also on Soliris. I knew there was someone else much older who had started Soliris, but not much more. I'm happy that you've found your way to this site. It's a great place for communication…
For Bryan, he definitely had the "happy effect". I'm not 100% sure if that was due to the Soliris or stopping the CVVH, which definitely seemed to suck the life out of him. Also, he had a ferocious appetite all of a sudden where he hadn't been eatin…
Good Luck! I will be praying that Soliris works for Ashley the way it has worked for Bryan!
Thanks for your kind words everyone!
Phyllis - I'll definitely be there. Not sure about the kiddos yet, I want to make sure we're 100% clear of runny noses before bringing them over to play with Hyde.
Oh Phyllis my heart goes out to you. I was thinking about you all day yesterday and wondering what the doctor would say. I'm very happy to hear that you both like this new doctor, and that he comes highly recommended. If you ever want to talk I'm he…
Yep, I have to agree, a permanent, under the skin port, awsome, they even let you use numbing cream. It's not like numbing cream on a vein that causes the vein to disappear so they don't use it. Good luck. Let us know when so we can pray up a storm.
Poor baby got a LOT needle sticks. We will be praying for surgery go with out problems. His infusions will be a lot better after.
Oh man, poor little guy....that's a lot of needle sticks. It brought back bad memories for me of when Brody was in the hospital (before his central line) and they were having such a hard time getting blood that they started sticking him in the head!…
Melissa - I'm right there with you on the whole thought of going in for surgery - but I do have to say the portacath Hyde has has been great - REALLY makes clinics and everything else that much easier.....by the way - looking forward to seeing you g…
Thanks for the update, Melissa....Skyler's portacath has been in use since right after his initial Soliris infusion - I don't think either of us could have stood using a regular IV all this time. Keeping fingers crossed that your journey will become…
Profile Information
- Birthday
- October 26
- 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
Bryan
Bryan is 5 months old, and has been in and out of the hospital for the last month and a half with HUS. This seemed to be triggered by his 4 month vaccinations, and was first thought to be typical HUS, and then determined to be atypical. He has been doing plasma pheresis treatments for two weeks now, and is now trying something called aqua pheresis. He is currently being treated at Children's Healthcare of Atlanta at Scottish Rite. I'm interested in networking with other parents of children with atypical HUS, and learning more about the disease, etc.
Melissa Hearn's Photos
Melissa Hearn's Blog
A couple updates
Hey all,
Sorry I've been absent for a while. Getting too caught up in life I guess. . .
Anyways, there's been some good news for us - Bryan's Soliris has been covered by the new insurance company trough April 19th. At that point, we will need to submit more paperwork showing that the drug is still working, but I suspect that that is just a formality and things will continue without a hitch.
The less exciting news is that his Soliris infusion didn't go very well last Tuesday. It took 3 hours wo… Continue
Sorry I've been absent for a while. Getting too caught up in life I guess. . .
Anyways, there's been some good news for us - Bryan's Soliris has been covered by the new insurance company trough April 19th. At that point, we will need to submit more paperwork showing that the drug is still working, but I suspect that that is just a formality and things will continue without a hitch.
The less exciting news is that his Soliris infusion didn't go very well last Tuesday. It took 3 hours wo… Continue
Posted on January 28, 2010 at 1:13pm — 6 Comments
Ready for Iowa
Bryan's numbers continue to look good.
Here's his latest:
Na 138, K 4.6, Cl 102, CO2 21, Ca 10.8, Albumin4.5, BUN 13, Creatinine 0.41, Hemoglobin 9.6.
I look forward to seeing everyone in Iowa tomorrow!
Melissa
Here's his latest:
Na 138, K 4.6, Cl 102, CO2 21, Ca 10.8, Albumin4.5, BUN 13, Creatinine 0.41, Hemoglobin 9.6.
I look forward to seeing everyone in Iowa tomorrow!
Melissa
Posted on October 15, 2009 at 10:09am — 2 Comments
Comment Wall (14 comments)
- At 3:06pm on October 25, 2009,
Sylwia Antkowiak said… - I pressed enter to early... So when I read about Soliris it really makes me cry..if it only came out a little bit earlier maybe we could save Maya's kidneys as well. Now it's too late.Anyway have you heard maybe of any trials with Soliris on the transplanted patients? Thank you and speak to you soon.
- At 3:04pm on October 25, 2009,
Sylwia Antkowiak said…
- Thank you Melissa for your kind and warm words. So happy I found this site, Once I started to read I couldn't finish and ended up going to bed at 4am.When I read about Soliris
- At 3:24pm on October 19, 2009,
Heather Still said… - Hi Melissa. It was great to meet you in Iowa and I hope your trip home went well.
- At 12:15am on September 2, 2009,
Linda Burke said…
- Hey there!
So glad to hear that Minoxydil is doing the trick to keep Bryan's pressure in check - Hunter used that with success but did develop an "Eddie Munster" hairline (still kinda cute)! I'm hopeful that you'll be writing from home sweet home tomorrow. ;)
- At 8:20pm on August 29, 2009,
Jodi Kayler said… - Hi Melissa,
I'm glad to hear that home is on your horizon. I remember coming home after 4 months. I pulled in the driveway and bawled like baby! Our last month of our initial stay in the hospital was also due to uncontrolled blood pressure. We found a combination of multiple meds were the only thing that worked. I think we've tried every bp med in the book. The following cocktail is what works for us: Norvasc, Labetelol, Cozaar, Lisinipril. Coen does a lot better on multiple meds rather than larger doses of fewer meds. We also have isradipine as a emergency PRN incase his BP spikes (we never use it anymore). After we started Soliris, his BP has continued to slowly improve. We are still on all 4 meds but lower doses of all of them.
Hopefully, since you started Soliris early, and Bryan's creatinine is good, maybe you won't have long-term BP problems. If you have to give meds at home, let me know. I have lots of tips on how to get meds down babies. =)
BTW, I want to commend you for all you have learned in a very short time. It is clear that you've have been doing your research and learning all you can. I've found that being informed is absolutely critical in being able to communicate with doctors clearly--especially once your home and they rely on your updates.
- At 7:11pm on August 27, 2009,
Cheryl Christine Pallme Biermann said…
- Melissa, Congratulations on Bryan's recovery! I cannot believe how quickly these kiddos get after beginning on Soliris! Take care.
- At 12:55am on August 15, 2009,
Svetlana Finley said…
- Thanks for update. Our doctors are waiting on Soliris for Anna, because of our incurance. I am glad to hear that Bryan will be starting very soon. Keep us updated.
- At 12:21am on August 14, 2009,
Linda Burke said…
- Hi Melissa,
I've already emailed you our doctors' contact info so that you can either email or fax it to Dr. Sherwinter. Our wonderful team of pedi nephrologists (Matt Hand, DO/ Carrie Gordon, MD/ and Oliver Frement, MD) can be reached at (207) 662-5522. They are on staff at The Barbara Bush Children's Hospital unit at Maine Medical Center. I'll let them know to expect a contact from Dr. Sherwinter soon. Take Care, Linda
- At 10:18pm on August 13, 2009,
Heather Still said…
- Hi Melissa. Your family is in our thoughts and prayers as you struggle with this illness. My son has had active Atypical HUS for 7 years now. He did pheresis for the first few years and currently is maintained with plasma infusions. He still has about 30% kidney function and lives his life as an active 10 year old. Take care and I am here for you to share any info I can.
- At 8:23am on August 10, 2009,
Linda Burke said…
- Hello,
Thanks for your comment. Interestingly, Skyler's complement levels of C3 and C4 were drawn the 1st day in the hospital, as our terrific pedi nephrology team was well prepared due to their experiences with Skyler's older brother Hunter. Skyler's C3 and C4 levels were normal - our doctors began Soliris anyway to halt aHUS activity. (Lab numbers for Skyler's complement levels are in our June 19th Soliris Forum post.) Hope your day is a good one.
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...
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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