Hello

[Ginzo]

I am a 38 year old Canadian, and about 2 months ago I was in India when I was diagnosed with  Henoch-Schoenlein Purpura, since then it has taken more than 80% of my kidney functioning. I have been living in Tokyo, with my Japanese wife for the last 8 years and am writing this from my hospital bed (as I am still being treated to try and control the symptoms in Tokyo). It has given me many other nice diseases to go along with it (HSP)

I am really new to all of this as prior to August I was, and thought of mysellf as pretty healthy and strong.

I am here for information, encouragement, and sharing.

[justme15]

Hi!
What is their plan for your declining kidney function? have they discussed dialysis? transplant?

[lmunchkin]

Welcome Ginzo!  So glad you found us!  I had an old friend who had this, but she never had to have D.  She took some steriods and other meds. and it cleared up eventually.  Hopefully, yours will get corrected to by medication, I certainly hope so!

Have they said how the vessels became inflamed?  Was it some type of bacteria or what?  I so hope they get it corrected, cause D. is no picnic! You just take care of yourself and come here often and we will help in anyway!

By the way, how are things in Tokyo since the Tsonmia? That was an awful tragedy and we in the US have been praying for Japans recovery.

Again welcome and God Bless,
lmunchkin
 

[Ginzo]

Hi Guys.
Well. I have been on Steroids from the beginning (I have been in hospital for two months now   ) I have done Plasma exchange, which didn't work, and now they have me on a pulse treatment of Cyclophosphamide.

But between that, and for the last three days they have been giving me Intravenous Immunoglobulin (IVIG).  The problem is I am leaking large amounts of protein in my urine and can't seem to stop it (hence the IVIG)

No talk yet about dialysis or transplant though.

However, looking at my GFR and Creatinine levels I am sure that it is coming somewhere down the road. To be honest, this is very scary for me and very hard to adjust to emotionally.

Tokyo is getting back to it's feet.
Ironically,  I was almost killed on March 11th 2011 when the theatre I was in collapsed (two of my co-workers sitting next to me were crushed to death). Now I have been in hospital for over two months fighting my own body.

Life is as weird as it it farcical.

Thanks for listening.

[justme15]

Well, you never know what those kidneys are gonna do! meaning,  you could hang in there at 20% function for a while, which isn't bad. I am not sure how fast the progression of kidney failure is with your disease. with mine, FSGS, it had been a very slow deterioration.  So it is good that you are researching and educating yourself now so that you will be prepared if/when that day comes.  It may still be difficult to accept, but at least you will have some knowledge of what to expect.

[Poppylicious]

  Ginzo. 

Life is as weird as it it farcical.

Indeedy.  I hope you find some support and reassurances here.

[Rerun]

Hi Ginzo and welcome to IHD.  I'm so glad you found us.  Where were you when the tsunami hit?  I hope they can stop all this before you lose all your kidney function.  Stay here and read all you can.

Hang in there....

Rerun, Moderator     

[Ang]

 

[willowtreewren]

HI, Gizno!

 

One of the scariest things is lack of understanding. You can find out so much about loss of kidney function here! And that should empower you and reduce the anxiety. It still sucks, but at least you can learn more about the situation so you can feel more in control.

I'm sorry about all you have experienced.

 

Aleta

[big777bill]

  Hello Ginzo I'm new here too and have been hanging at 18 to 20% kidney function. Hopefully we both can learn some from others that have been through this already. I know it makes me feel better knowing I'm not alone in all of this. Sending prayers your way for healing.

[CebuShan]

       Ginzo! Glad you found us! I'm sure you will find answers to most of your questions here. Check in often and again, welcome to the family!   

[Ginzo]

Hi Everyone, and thanks for your messages of encouragement and affirmation.
It has been a roller coaster of emotions since the end of August for me (not to mention health).

I  have been hosptialized for months now and (I am writing this from my hosptial bed) it has made me a little crazy I think.
However, I am trying to learn as much as I can, and not to jump to any hasty conclusions about treatments or other things. 

I am wondering, has anyone read the book Kidney Diet Secrets  --- by Rachel Gordon?
It costs $47 for just a .pdf, which seems pretty high to me.

But I am really goign to try and hit this with a total change in diet to try and ward off dialysis as long as I can.

Any other information, cooking sites, anything (for once I get out of hospital) would really be appreciated!

Thanks in advance!

Ginzo  (by the way "jinzo" is Japanese for Kidney)