On February 28th, global awareness RARE DISEASE DAY, help NORD and Eurordis launch their joint initiative of a new online set of rare disease patient communities. Continue
The new Community for aHUS (English version) can be found here:…
Added by Linda Burke on February 28, 2011 at 9:00am —
On February 23rd, I officially turned 23 years old. Despite the fact that I had to work and also go for my dialysis treatment on my birthday, it turned out to be a pretty good birthday. What is so awesome is that I keep proving so many doctors wrong in the process...no one ever thought I would make it to 23 years of age, nor did they think I would be able to graduate from college with a BS in veterinary technology. Through all of the worries of both my parents and my medical team, I've… Continue
Added by Jessica Olivia Frysz on February 27, 2011 at 11:12pm —
Added by Linda Burke on February 26, 2011 at 8:30pm —
Quick addition for my AHUS folks - especially the Soliris ones ;-) - are the older ones (thinking of Coen and Skyler before he stopped) on 600 mg dose or still the 300? Hyde's on 300 mg every 2 weeks and he's currently at around 19.0 kg - plan is to up him to 600 mg when he hits 20 kg? Just want to make sure that's around when everyone else did the same? Thanks!!!
Hi there everyone - sorry for the delay - but we were rocking along very smoothly and I had decided to just update… Continue
Added by Phyllis Ann Talbot on February 24, 2011 at 5:51pm —
Things aren't going well for Anna recently. She is in hospital now, and it is her third stay in hospital this month. She used to take FFP once for two weeks, and now even twice a week seams not enough. Docs consider changing her therapy from FFP infusions to plasmapheresis. I don't like the idea at all. It would be necessary to put her catheter back and that would make an enormous change in her live. We are scared because we can't find any reason for such change in her condition. Please… Continue
Added by Zofia on February 19, 2011 at 6:00am —
Sorry - I've gotten yelled at for not posting earlier......good news is we've been busy doing 'normal' things.....
Hyde did well on his first official transplant clinic - dr's are pleased and labs are good - BUN 19, creatinine .4, platelets, 356, HGB/HCT 12.1/35.6, phosphorus - 4.4. The only problem is his prograff level (this is the level of one of his main immunosuppressant) was 5.8 and it should be around 10 at this point - so we are upping his dose…
Added by Phyllis Ann Talbot on February 18, 2011 at 12:29pm —
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
Added by lisa ann peterson on February 17, 2011 at 9:54pm —
It's been a long time since I've updated. I'm in the midst of having my daughter with HUS begin her life by herself as a funcitoning productive adult. I house many many thoughts about how this will all work out. I house even more worries. She graduates in May and this in itself is such a big accomplishment. She will have her bachelor's in Vetrinary Technology. Not an easy program but she so loves the course. In trying to be her sounding board for possible jobs and locations we have to… Continue
Added by Colette Ann Frysz on February 17, 2011 at 8:53am —
Hello again, Hope all is good for everyone I was wondering if anyone that is involved in fund-raising could/ would be able to give me some pointers on how to start one. I am very interested in bringing awareness to this disease and to the beautiful souls that are afflicted by it. So please if you have any information for me i would be truly grateful. Thank you
Added by Destiny Floyd-Rakes on February 16, 2011 at 6:56pm —
i think that this week has been the hardest knowing that we are headed to spokane on thursday for labs.. i have been feeling sick to my stomach that my little girl might have low levels because i think we get so used to the calm... i also have noticed that she is a little paler and is more and more tired. but iam sure that god is watching over her.. she was built so unique and strong iam so amazed at her strength. well i will post… Continue
Added by lisa ann peterson on February 14, 2011 at 7:48pm —
So, it's been a very long time since I've been able to get onto this site to post news from Buffalo, NY. Well, despite the cold and the snow and also losing power here at home, I have been having some issues. Well, the government, the CMS has changed the policy on how Epogen is given. Instead of giving it IV, they are now giving it subcutaneous and this has had harmful effects on me. So, my blood pressures had risen and I began having other issues. Now, things are changing where I can get my… Continue
Added by Jessica Olivia Frysz on February 13, 2011 at 12:42am —
Well - after lots of ups and downs - we did make it home today - I am of course a nervous wreck and expect to have to jump in the car and run back to Egleston at any moment if Hyde starts running a fever but we are home. Bittersweet since we are in separate households - ruth - my sweet flu girl GETS to spend the night with Aunt MaryBeth and uncle Smith with daddy (AKA quarantined) and the ENTIRE family , ruth, Hyde, Bill, Phyllis, Grandma & G'pa Talbot, and Uncle…
Added by Phyllis Ann Talbot on February 11, 2011 at 9:01pm —
Added by Bill Biermann on February 11, 2011 at 5:26pm —
UGHHH - have no idea why this should surprise me - it is us we are talking about here - I apparently made a very good case to the dr's yesterday of all th pros of us coming home (I can do mostof what they do here at home, he can leave the room, we'll be back Monday for labs and can be readmitted if need be, etc. etc) then of course I got nervous that they listened to me but oh well. So went home feeling good - if Hyde could hold his own today with labs we'd break outta this joint (at least for… Continue
Added by Phyllis Ann Talbot on February 11, 2011 at 10:01am —
Well, here we are at Egleston - trapped in a teeny room - oh well.....Hyde's doing well - feels pretty good, hasn't had any IV fluids since Tuesday AM when his port stopped working and seems to be holding his own. Labs are OK today - BUN 22, creatinine .4,HGB/HCT are down to 11.6 and 32.3 but they think this might be from all the blood draws and his platelets are up to 265 - so overall pretty good. They don't seem to be in too big of a rush to let us leave - and…
Added by Phyllis Ann Talbot on February 10, 2011 at 10:59am —
Sorry for the late update but our first thing in the morning port surgery turned into 12:30 so he didn't get done until around 2ish and then we had an hour long saga to get caught up on all his oral meds - fun fun! He also had a bad tummy ache and headache this morning and the whole not being able to eat or drink - just ughhh - Bill had fun this morning before I got in..... Still don't know anything about H O M E. We didn't get labs today since his port wasn't working. He did get his 4th… Continue
Added by Phyllis Ann Talbot on February 9, 2011 at 4:37pm —
7 years ago, Heather Still and her Mother in Law Flew in to St. Louis to witness a fundraiser that we host in St. Louis. Since that time, Heather Still and her family have held a fundraiser each and every year. Heather;s efforts are coming close to raising $100,000 for the Foundation !!
And all of that has occured while going back to school and also taking care of a child with Atypical HUS.
Thanks a lot, Heather. The future of our children has never looked better,… Continue
Added by Bill Biermann on February 9, 2011 at 3:11pm —
An inspirational poem by Edgar Guest......
While my favorite visual imagery is the line, "Success is failure turned inside out -The silver tint in the clouds of doubt, " it seems that what resonates most within my heart today is, "So stick to the fight when you're hardest hit - It's when things seem worst that you must not quit."
When things go wrong, as they sometimes will,
- When the road you're trudging seems all…
Added by Linda Burke on February 8, 2011 at 11:23pm —
Sorry for the late update - I start getting texts when I'm too late on this - sorry!!!
Big picture we are still doing well - platelets, BUN, creatinine, etc are all stable. Hyde's still pooping (he is on probiotics for those that asked as well as flagyl for the CDIFF). Hopefully this is just slow process but will be improving. The biggest pain is Hyde's port stopped working - this is totally his luck - port works fine for 2 1/2 years and then stops working the…
Added by Phyllis Ann Talbot on February 8, 2011 at 12:39pm —
Well - we got a few answers and some more questions since the last update. Some testing came back yesterday and it looks like Hyde has CDiff - which is an infection that is apparently fairly common when you've been in the hospital, on antibiotics, and your immune system is basically completely knocked out. They started Hyde on flagyl to treat this yesterday - unfortunately - so far today it doesn't seem to be helping a ton yet. So they'll give it today and then may…
Added by Phyllis Ann Talbot on February 7, 2011 at 10:51am —