The Atypical HUS Foundation

May 2010 Blog Posts (25)

Update on Ania

Ania is doing quite well. We try to make the breaks between FFP longer. She used to get plasma every Monday, and now She gets it every eighth day since April. Next week we will start getting FFP every ninth day. We make this change very slowly and carefully, making some urine tests in home, and extra testing in our hospital. We had tray to do same thing two years ago but than it finished with the relapse. She is bigger and stronger now, so we are trying again. Her test results are surprisingly… Continue

Added by Zofia on May 31, 2010 at 3:52am — 5 Comments

PNH

Hi all,

I know this is a little off the aHUS track but PNH is one of the things Ashley was tested for in the beginning. I was reading our local newspaper this morning and there is a local lady that has PNH and over here in Australia Solaris is approved for use with PNH patients but as yet is not funded by the phamaceutical benefits scheme. PNH sufferers are trying to push that it be put on the pharmaceutical benefits scheme as without the use of this drug they dont have much chance of…

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Added by Kerri Grey on May 28, 2010 at 1:49am — 4 Comments

Genetic testing

Hi everyone! Does anyone know how long it takes to get the genetic testing back. It has been a month now and we are very anxious to get the results. Ben's biopsy came back showing no permanent damage. If anyone could give us an idea of what our wait time is I would appreciate it.

Added by MARCIA AGUALLO BAKER on May 26, 2010 at 1:09pm — 11 Comments

florida trip

Well, the Florida trip that Jessica went on with her classmates went along smoothly. She got to dialysis and back to her hotel without a problem thanks to a cab driver that kind of took her under his wing. Also her treatment went well which was very good news. She had a great time and got to swim with the dolphins. I'm waiting to see pictures of this. She explored Epcot center and got to see behind the scenes at Animal Kingdom. All in all she tried to make good choices food wise and use good… Continue

Added by Colette Ann Frysz on May 26, 2010 at 8:30am — 3 Comments

lil miss chloe peterson

my friends iam so tired today.. we went to spokane last night at 9pm for her sleep study.. she slept i didnt... well she has mild sleep apnea the doc said that he is going to have the tech count how many times she actually stops and has difficulty breathing and let me know... iam not sure thats a good thing to tell an over protective tuff hat momma.. but they are giving her a c-pap machine so we are waiting....i dont know if i had updated this yet she is now the proud…

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Added by lisa ann peterson on May 25, 2010 at 4:06pm — 3 Comments

A LONG awaited update

As my mom posted on this site I took a trip to Florida. Well, I came back safe and sound, managed my dialysis very well in Florida, managed to get to and from dialysis without a problem, because of one thing....luck would have it, I was on my way to dialysis when my cab driver, Wil gave me his cellphone number and told me to call him personally to have him come get me to take me back to the hotel after I was all done. My treatment time was 3:15 in the afternoon, but I got there an hour…

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Added by Jessica Olivia Frysz on May 25, 2010 at 11:34am — 4 Comments

Ben getting stronger!

Hi everyone! Just wanted to keep everybody posted on Bennie. He was moved out of ICU and now in a regular room. His blood pressure has improved and he has even been able to take a couple of steps. He had his kidney biopsy Friday and it went well. He did have to have a catheter placed because he had some bleeding from the biopsy and had some blood clots causing him to not be able to urinate. That was traumatizing to him but he was a brave boy. They did have to put him on some anxiety medication… Continue

Added by MARCIA AGUALLO BAKER on May 23, 2010 at 9:39pm — 3 Comments

Benjamin update

Hi everyone! Happy to report that Benjamin was moved out of ICU into a regular room last night. His MRI showed the seizures were caused by his blood pressure and he did have some swelling of the brain but felt that this would resolve with time. Even though his blood pressure is still an issue, his labs came back better. He was able to stand and even take a step today. It seems like the weakness in his leg is improving. There is a little bit of disagreement between the kidney doctor and the… Continue

Added by MARCIA AGUALLO BAKER on May 19, 2010 at 10:39am — 4 Comments

lil miss chloe peterson update

lil miss had her apt yesterday and all went well.. this is the gist of it... we are stopping plasma treatment as of now and we need to wait for a relapse to treat again.. dr.H said at the first sign of relapse we will begin to treat..kinda scary for me but i know that he has a plan and he will watch her closely. the good part is that she is going to do the pediatric study…
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Added by lisa ann peterson on May 18, 2010 at 11:52am — 7 Comments

Clinic today



Well, we are getting back to normal after all the excitement from the hike and had clinic this morning. Things went pretty well and Hyde was SO brave for having his port accessed (this had been getting more and more tramatic for the both of us the last few months) that Ms. Ginger (our child life specialist) got Hyde a super special toy. Have I mentioned lately how lucky we are to have Egleston/CHOA practically in our…

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Added by Phyllis Ann Talbot on May 17, 2010 at 9:30pm — 9 Comments

Latest update on Ben!

Thanks everyone for all of your advice and prayers. The latest on Ben is his EEG came back normal, which you guys told me may happen. We haven't gotten the MRI results back. Are concern now is that Ben is showing weakness on the right side of his body as if he had a stroke. Every time he has a seizure, it causes more weakness. He can barely lift his arm now. I completely agree on all the comments on the biopsy of the kidney. I can see that it will probably not be very helpful at all. I am sad… Continue

Added by MARCIA AGUALLO BAKER on May 17, 2010 at 8:43pm — 8 Comments

MRI and Contrast

EMERGENCY- NOTICE!

Do NOT allow and MRI with dye! Plain MRIs are fine, useful for detecting damage following a stroke or seizure. They dye in these tests, (sometimes called and MRA), is not able to be excreted in any person with kidney failure!

There are many reasons for receiving an MRI, those of you with seizure complications may have more reason for an MRI than others.

The agent Gadolinium a non-radioactive agent that allows a clearer picture…

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Added by Cheryl Biermann on May 17, 2010 at 10:30am — 3 Comments

Tristan's Story

I just found this site on the net and joined recently and thought I would introduce my son. His name is Tristan and last August when he was 18 months i took him to the dr. for his 18 month wellness checkup. He recieved his vaccines that day which included his mmr and varivax. He wasn't sick that day and he'd been perfectly healthy before. But later that day he started having diarrhea which worsened as the week went on. I took him back to the dr where we were told he just had a virus. He started… Continue

Added by Wendy Flinn on May 16, 2010 at 11:34am — 4 Comments

Emergency!!!! on Ben

I am sad to report that I just received a call from my mom and Ben was just sent to the hospital by ambulance. They think he had a seizure but we are not sure. All I know is that he had been vomiting off and on all day today when I was visiting him. He was more active than all the other times I was there but he still was very pale. He has been doing treatments every other day and today was his day off. He got up to go to bed and fell down with no control of his body. He could not recognize his… Continue

Added by MARCIA AGUALLO BAKER on May 15, 2010 at 9:43pm — 11 Comments

Update on Brody

Hi Everybody,

I don't get to check this wonderful site as much as I would like but I do think about you all and your children often. It's nice to know that even at our worst times there are others there to lend their support and who understand what is going on.

Brody is doing great. More independent everyday. I'm not sure if that is a good thing or not;) "I know how" "Me do it" I love it... The other day it was sad though when we went to get labs done and he was very concerned…

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Added by Amy Swarbrick on May 15, 2010 at 2:21am — 9 Comments

Reflecting, Looking Forward

Five years ago today, I received a kidney transplant. It was an emotionally intense time that brought joy and unimaginable vitality. I was freer than I had ever thought possible upon commencing dialysis almost five years previously. The open doors beckoned, doors that seemed to slam shut when my own bogey of aHUS returned two years later.


I have many fond memories of the young woman I was, but I don't miss her. I have weathered the storm and found refuge within myself. If…
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Added by Grace on May 14, 2010 at 9:36pm — 4 Comments

My Blog

Here is a link to my blog. It details my story with aHUS from the begininng. Unfortunately, I have had some bad experiences with my old nephrologist. But hopefully someone can learn from the experiences I have been through, I have also met some of the countries best and brightest regarding aHUS. So check it out!

www.kidneysnotincluded.blogspot.com

JZ

Added by Jill Ziegler on May 14, 2010 at 10:12am — 4 Comments

Off to Florida

Well we all got up at about 4:00 am to get Jessica to the airport. She's being a somewhat normal college kid and taking a Florida trip after the year's classes. The only thing she gets to do that her classmates don't is go to a dialysis treatment somewhere else and find a ride there. Fortunately between us we did get these issues ironed out before she left this am. By about 9:30 am she ought to be arriving in Florida. She's looking forward to being able to swim with the dolphins and see behind… Continue

Added by Colette Ann Frysz on May 13, 2010 at 8:31am — 1 Comment

Pictures from the 2nd Annual Hike for Hyde!

Hi everyone - I FINALLY got around to posting some pics from the Hike (thanks for the nudge Linda ;-). Check them out!

Added by Phyllis Ann Talbot on May 12, 2010 at 2:07pm — 1 Comment

New to the website

My son Riley aged 3 was diagnosed with HUS last June when he suddenly became very ill. He was immediately put on dialysis. Doctors thought that his kidney function would return and that it was e-coli. When this didn't happen i learnt how to dialysis and brought him home. We recieved test results just a month ago which confirmed Riley has atypical-HUS with complement factor H. Because Riley went straight to ESRF the only way forward for him is a combined liver-kidney transplant.… Continue

Added by Stacey on May 12, 2010 at 11:42am — 15 Comments

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