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Melissa Hearn
- Female
- Lawrenceville, GA
- United States
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Hi all,
I just wanted to give everyone a quick update on Bryan. He is doing good. His labs remain pretty much the same. He continues to have a low hemoglobin (10 range), but it has not dropped below 10 for awhile, so we are not doing Epo shots at th…
Hi there, Bryan doesn't have Factor H, (he has no known mutation - all testing has come back negative) however, he is on Soliris and it has worked miracles for him. He goes in once every 3 weeks for an IV infusion of the drug and continues to have n…
You are a beautiful writer! Thank you so much for sharing these thoughtful, well put together words. Your outlook is so positive and uplifiting. Thank you Thank you Thank you!!!!
Hi there,
We believe in probiotics as well. Bryan has at least one Yobaby yogurt everyday. :) We haven't had anyone else tested at this point, as all of Bryan's tests (and all have come through at this point) have all come back negative. Good luck!…
Wht a BEAUTIFUL smile Tristan has! Thank you so much for sharing your story. Your son will be in our prayers, I am so glad you were able to get such great medical support from Dr. Brophy. I really enjoyed meeting him at the conference last October a…
It's SO hard when family disagree on huge issues like this. We were opposite in my family. Rich (my husband) was the one who was reading all the medical journals online and pushing the doctor with why aren't we trying this and this and this, where I…
Good luck with the new medication! I know that adding a new med into the mix is absolutely no fun! I'm sure that Miss Ruth was just gorgeous. I hope to one day get her autograph. :)
Hi Lisa,
We're praying for you! It sounds like it may be perfect timing for you to be able to do the Soliris trial. How awesome to not have to fight the insurance company for payment. I know how scary it must be to stop treatment and just wait for a…
Linda,
I know you must be so EXCITED and so SCARED too. I've been watching anxiously for this day to come. Dr. Sherwinter is thinking the same thing about Bryan, that we would too try to wean him off of the Soliris at or around one year after starti…
So happy to hear Chloe's continued great lab results!!!
Enjoy the birthday on Friday! What a CELEBRATION!!!!
Good luck with the donor search. That's great that your professors are stepping in to help.
Awesome news about Disneyworld. :) Say Hi to Mickey for me. :)
Wow that is wonderful new to hear that Alyssa has been approved for use of Soliris during transplant. I certainly hope that transplant wouldn't be needed and Soliris would do it's magic before a transplant was even needed, but if that doesn't work o…
YEAH!!!! WOO HOO!!!!! That is such wonderful news!!! I am so happy to hear of Chloe's improved lab results AND wet diapers!!!
I love to hear of talks of HOME!!! and smile thinking about what a wonderfully special birthday celebration little Chloe h…
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 (16 comments)
- At 9:13am on May 20, 2010,
Wendy Flinn said…
- Hi Melissa. It sounds like our sons are kind of alike with their aHUS. My son has no known genetic mutations either and his HUS was triggered by his vaccines too. They won't document that in his record but I know that what it was. His immunologist said that was most likely what it was too. I will pray for your adorable baby boy. He's is so cute. I am happy for you that the soliris is working for Bryan. Thank God for modern medicine.
- At 8:11am on March 17, 2010,
maria vicenta carratala rios said… - Hi Melissa. Could you contact with me? I am a member of this page and I have a little child who has suffered four years ago ahus and a consequence taken off the kidneys, Now he has the possibility to use the Soliris, but I would like to contact because I do not know the secondary effects and so on.
- 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 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
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
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