03-07-2014, 07:20 AM
23
Re: Hemophagocytic Lymphohistiocytosis (HLH)
Originally Posted by Uncle Joe
->
Bloody 'ell matey, I couldn't even get my tongue around it to pronounce it, but wishing your relative all the best. I used to be a blood donor and would willingly donate bone marrow had we been a match, but I don't think any of the medical profession would approve as I have been prescribed long term Warfarin and I don't think your relative would benefit.
03-07-2014, 07:23 AM
24
Re: Hemophagocytic Lymphohistiocytosis (HLH)
Originally Posted by EZ Rider
->
Thanks Joe. Its really does help to know people care. She is being taken to Kings College today. Nothing sinister showed up on the CT scan thank God and she is starting a treatment of steroids today.
You're very welcome matey - chin up, stay positive, she will get better in due course.
06-07-2014, 11:57 PM
25
Re: Hemophagocytic Lymphohistiocytosis (HLH)
The latest update. She is now in Kings College Hospital London where they have far more experience of this awful disease. They have found she also has Glandular Fever which the HLH is feeding on so the two problems are being treated together. She is making slow progress and has been eating a little.07-07-2014, 08:26 AM
26
Re: Hemophagocytic Lymphohistiocytosis (HLH)
Originally Posted by EZ Rider
->
The latest update. She is now in Kings College Hospital London where they have far more experience of this awful disease. They have found she also has Glandular Fever which the HLH is feeding on so the two problems are being treated together. She is making slow progress and has been eating a little.
Oh matey, one damn thing after another, but good to know the hospital are treating her properly and she is progressing. What she now needs is a few of my 'piglet pies' - they will build up her strength and resistance!!!
07-07-2014, 06:45 PM
28
Re: Hemophagocytic Lymphohistiocytosis (HLH)
Originally Posted by EZ Rider
->
The latest update. She is now in Kings College Hospital London where they have far more experience of this awful disease. They have found she also has Glandular Fever which the HLH is feeding on so the two problems are being treated together. She is making slow progress and has been eating a little.
It is good to hear that she is making some progress and is in very good hands at KCH.
07-07-2014, 09:21 PM
29
Re: Hemophagocytic Lymphohistiocytosis (HLH)
So sorry to hear this. I'd definitely look for a support group.My son has a rare condition and even the paediatrician who had worked for years in the hospital had never come across the condition. My health visitor then found a support group and I couldn't believe it!!
It's just great hearing from people who are experiencing what you are.
There's always hope xx
14-07-2014, 02:37 PM
30
Re: Hemophagocytic Lymphohistiocytosis (HLH)
Hopefully this will be the last post from me on this subject. Ruby is now very much on the mend. She is eating a little and putting on weight. Still on Steroids which will be slowly reduced over the coming days. Unfortunately her immune system is virtually non existent so she will be on antibiotics for the foreseeable future and barring anymore setbacks she could be home within a few days. Thank you all for your concern and encouraging messages.|
|
