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  YAP Forum  Treatment options and CKD  Have your say h...
 Re: Have you say here on anything 'kidney' related
 
 12/08/2009 14:32:44
megs23
1 posts


Re: Have you say here on anything 'kidney' related
 (N/A)
Hi,
So I'm writing because sometimes in my life I feel that no one actually understands what I'm going through, and although my family try very hard to be supportive, it's not always enough.
I'm 21 years old and have been diagnosed with FSNS for the past 2 years (diagnosed at 18). Since January this year I have been stable, in that my protein leakage in my urine has been lowered. However my recent test (early august) shows that I've back tracked, my blood pressure is high again and my cholesteral is also slightly high. I too like you Rach am also oveweight. 2 and 1/2 years ago I had a lapband put in to help me loose weight, 6 months later i was diagnosed with this condition and lost fluid over 12kg in one week.
I used to wonder all the time why me? And though i dont wonder this as much these days sometimes I find this battle really hard to deal with. I was told I could never have kids, and at 21 that is a hard burden to bear. I also wonder if there is natural therapies out there that I could use? Herbal remedies etc? I mean of course in conjunction with my cyclosporin.
Also no one seems to be able to tell me if there are certain foods or drinks etc. that I should be avoiding. I dont smoke, I very rairly drink and when I do, usually it's only one or two maximum!
I wish there was an alternative and would love to chat to people in a similar situation to know that I'm not alone in this, and that I'm not the only one dealing with this!

Thanks
Megan
 04/02/2010 14:28:37
MissyD
13 posts


Re: Have you say here on anything 'kidney' related
 (N/A)

Hi Megan,

I too was diagnosed with kidney failure at a young age....just before my 22 birthday.  There have been many times in my life since I was diagnosed that I wondered "why me?" and "that no one understands what I'm going through".  But believe me Megan...you are not alone, and may of us feel exactly like that.. 

I was put on many different medications, that didn't seem to help my condition too much.  I even had Chemotherapy, which was a trail process at the time.  But for me, having an aggressive form of kidney faiure, the "miricle remedy" I so hoped for, was not to be found. After the chemo which I endured for 5 months, there was a slight improvement in my kidney function, but alas that was short lived.

I was put on new mediations, and basically waited until my kidneys had worsened and I had to start dialysis.  I have been told over the years, that I may not ever have children, that comment still hurts as much today as it did the first day I was told.  Especially when beiing a woman makes you feel as that it is your natural given right to have children.  The gyno I saw said that once I had recieved a transplant and got my kidneys under control, and then started hormone theropy there was a small chance of me possilbly being able to have kids.  I guess I'll just have to wait and see about that. 

But since that day I have really considered adoption, or becoming a foster parent.  There are so many children out there who are in despearate need of a safe and loving home.  Having your own child, and experiencing all the joys of motherhood, would mean the world to me, but then knowing I could provide a loving home for a child in need would be pretty special too.

Anyway, I just wat you to know you are not alone, and that there is hope for us all.  I am hppy to chat you too of you'd like to chat sometime .

Good Luck in all that you do.

Regards,

MissyD 

 10/04/2011 11:17:28
kem2710
7 posts


Re: Have your say here on anything 'kidney' related
 (N/A)

Hi,

Im writing to ask about some more information on FSGS and IGA i have one kidney was born with it, and in that kidney i have both of these diseases. im not long 18 i found out in november last year. im also about to be put on cyclosporine and also a form of steriods, not sure what the doctor is puttting me on. i dont like to follow every word of my low salt diet but i do avoid eating salty food.

Any information would be nice. thanks

 14/04/2011 14:23:30
Kidney Kat
28 posts


Re: Have your say here on anything 'kidney' related
 (Australia)

Hi Kem

You are trying to help yourself and reaching out to others - and that is a really positive step in becoming an expert patient.

You will find lots of information in our Fact Sheet on IgA Nephropathy at www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx

If you have any further queries, you can ring our Kidney Health Information Service Line (KHIS) freecall to 1800 4 KIDNEY - 1800 4 543 639 and a Health Manager will personally ring you back and chat with you about your concerns.

Some other links of interest noted in the PATIENT INFO area, under RECOMMENDED LINKS

  • International IgA Nephropathy Network www.igan-world.org/
  • IgA Nephropathy Foundation (Canada)  Berger's Disease, IgA nephritis & IgA glomerulonephritis (http://www.igan.ca/ ) and you can join their Support Group at www.igan.ca/id49.htm
  • Your doctor is your best contact for information - they should give you time and explain the condition to you, tell you what you can do to help yourself and give you detailed information on your treatment plan etc. But we can help you too.

    Warm regards - your Web Angel.

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