hospital....

[Zofia]

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 pray for Anna.

 

[Svetlana Finley]

Hi Zofia

 How is is Anja doing today? Is there possible to get Soliris for her? Anna had plasmapheresis and is not fun, specially, no sport or even getting wet.  Our Anna is doing ok, she is been having colds and today her labs are a little lower, then usually.  

Praying for Anja and your family ;-)

[Jessica Olivia Frysz]

Zofia,

 

I'm so sorry to hear about Anna. Sometimes these things just happen I'm afraid, it's how the disease works. But, this disease tends to work in different ways in many different patients.  I've been living with this disease for a very long time, and at first I was getting Fresh Frozen Plasma (FFP) myself. Have doctors tried whole blood or even flushed red blood cells??? I understand your concern for the Plasmapheresis, because it means putting Anna on a machine, but if there is a way to avoid it, could they use a different blood product?

[Theresa Pereira]

Anna will be in our prayers.

How is she doing?

Maybe you should consider Soliris if available?

Sending hugs....

[Grace]

I'm so sorry to hear that Anna has not been doing well. What a difficult time for her and all who love her! I hope you are getting the answers you need and she is on the road to better health. 

When you say plasmapheresis did not work well in the past, was it how Anna tolerated it or how the disease responded (or didn't)? If you do go with plasma pheresis/exchange, I'd recommend you ask them to run it as slowly as possible and give IV calcium. Symptoms of low calcium can be unusual rather than 'by the book'. I found this helped tolerability, but it was never a great experience.

[Zofia]

Hi Destiny,

is plasma exchange a different name for plasmapheresis? Do your daughter has both: AV and infusion port at the same time? Why? Is placing the AV in arm comfortable? Ania used to have them in her chest, and it was not comfortable at all.

[Destiny Floyd-Rakes]

We are sending Anna and your family lots of prayers. My daughter had an AV placed  in her left arm and that is what she uses for her plasma exchanges and she gets that done twice a week. She also has an infusion port because I felt a lot like you are feeling in less then a year she had 4 ports placed and 2 pick lines the last time we were hospitalized I told them that they would not place another pick line because every time she would get an infection in the line only, still to much for a little girl to go threw.

[Giovanna caputi]

Cara Zofia vi siamo vicini e pregheremo per lei.

[Linda Burke]

Hi Zofia,

Sorry to hear things are not going well....how did your talk On Monday go with Anna's doctors?  Will they consider Soliris for her? Is it available in your country?

[Amy Swarbrick]

Anna is in our prayers. Ditto Jonathan's comment... One child and their family suffers, we all do. We know the pain, heart ache, the stress. My heart goes out to you guys. 

[Jonathan Aguallo]

We are praying for Anna and your entire family.....  It is as if we all feel the pain when any of these kids with aHUS are relapsing and in trouble.......