Sunday, August 27, 2006

From Guido

Hi John, hi Krissy,

As I may have written in the past, I have some professional experience with people who are battling with MDS and similar problems. It is a tough and long battle, with many complications. There will be downtimes, like you're experiencing now. It is invaluable that you have the support around you that you have. It is unique in my (limited) experience to also have a world-wide community around you, many of whom you have never met or even spoken to. I am 100% confident that the professional care you're receiving over in Hershey will be of the highest level, and you know you're in good hands there.

Although I cannot look into the future, I feel assured that this cloud will pass, and that you'll walk out of there in good and short order. Meanwhile, keep your high spirits and confidence. You'll get there.

Best wishes,

Guido aka Pharmolo [Northern Trip]


Showercloud over the coastline near Shader, Isle of Lewis, Scotland


fisherkristina said...

Dearest Guido,  I guess I am a little slow, i didn't realize you had professional experience with people who are battling MDS and similar problems.  What is your profession?  

Talking a little medical jargon here, John has autoimmune hemolytic anemia.  I know he is in great hands here, but he is being given IVIG, and doesn't seem to be responding.  Actually, they are not sure.  You can't just go on getting 2 -7 bags of blood a day w/o getting a cure, can you Guido?  Just wondering.  John also moved from beginning dialysis to intermediate dialysis today.  They may put him on permanent soon they said.  Anyway, can he get cured from the AHA if the IVIG doesn't work?  I was just wondering.  I need some answers.    

Okay, I will remain hopeful unless they tell me otherwise.  And no matter what happens, I know John will go to a good place.  I mean Heaven.  Okay, I should just erase this now and email you in private about it, so people won't know the possible seriousness of John's condition.  But I think I will leave it in.  I think I feel led to do that.  Oh well.

I love you Guido, and J-Land.


pharmolo said...

Krissy and John,
I emailed you my answer directly, but will summarise for other readers.

Where there is life, there is hope.
Don't give up until the time is there.
I am a pharmacist and have worked with people suffering from MDS in the past.
It is for the doctor to decide whether the treatment for AHA is working. John's underlying condition complicates matters to a certain extent, so I wouldn't like to speculate on further options should the current treatment with prednisolone and IV IG not be working.

The kidney dialysis really is the least of your problems. There are thousands of people around who live a reasonably normal life around the dialysis sessions, although they are a bit of a burden.

Keep your spirits high!