MPGN1_daughter_12_just_diagnosed_I'm_terrified!!!!

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jadesteva
Posts: 2
Joined: Mon May 24, 2004 4:33 am

MPGN1_daughter_12_just_diagnosed_I'm_terrified!!!!

Post by jadesteva »

Hello I'm the very scared mom of Shaye.. who is 12
She has MPGN type1. I'm freaking out. Anyone know about this particular disease?
It came as quite a shock. I'm scared to feed her everything seems to be on the excluded list. How can she have a normal life.
The more that I research the more fearful I become.
It has in the three weeks that we have been diagnosed already havoed our lives. I remain calm in her presence but loose it inside.
I'm a single mom of four and that is tearing me up now also as I am isolated and am financially strapped... I lost my job while at the hospital with her. I'm trying to do the best for her but it is trying.
BrendaM
Posts: 30
Joined: Mon Apr 26, 2004 8:57 am
Location: Cotswolds, UK

Re: MPGN1_daughter_12_just_diagnosed_I'm_terrified!!!!

Post by BrendaM »

I know how you feel believe me, I went through the same 12 months ago when both my children were diagnosed with kidney disease. I can't help about MPG but others here can - and you have reached the best place for understanding, support and practical advice. Life will be hard but others here know and have lived through what you are going through and will help all we can
Best wishes
BrendaM
Cheryl in CT
Posts: 412
Joined: Wed Apr 21, 2004 10:17 pm
Location: Connecticut, USA

MPGN type1 in 12 year old

Post by Cheryl in CT »

Hi!

I know how terrified you must be for Shaye, and my heart goes out to you. Having children of my own, I know how difficult it is to deal with any pain or illness they may have to face.

Sadly, there are many children out there who are dealing with MPGN and other types of renal issues. There is a highly recommended support group called NephKids that has attracted a number of parents who share ideas and information about their own children's renal problems. You'll find it at: http://cnserver0.nkf.med.ualberta.ca/nephkids

I will also send you a PM with the e-mail address of another single mom to contact. She has lots of experience in dealing with her own son's renal illness, and I'm sure she will be happy to assist in pointing you in the right direction in terms of helping Shaye.

I'm wishing you nothing but the best in dealing with all that life is sending your way right now. There IS hope, and there are places to go for help, so please hang in there. We'll be thinking of you, and we'll be here for support, whenever you need it.

Cheryl
Art from Ontario
Posts: 55
Joined: Mon Apr 26, 2004 1:11 am
Location: Niagara, Ontario, Canada

MPGN1

Post by Art from Ontario »

These sites may be of help

Infomation :

http://www.healthcentral.com/mhc/top/000475.cfm


Support Group for MPGN patients:

http://mysite.freeserve.com/mgninfo


....Keep chin up
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JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Hi jadesteva...

Just a question..

Which country are you in? In the UK the NKF and its local and young persons groups can put you in touch with others in the same situation.
www.kidney.org.uk/ypg/ and www.kidney.org.uk/LocalGroups/ They also have a HelpLine you can call.


In the US the AAKP serves a similar purpose.

http://www.aakp.org/


I can't imagine many things much more scary than what you are going through but you need to know there are others out there who are in a similar position to you and can help and support you through this.

http://www.kidney.org.uk/Medical-Info/k ... /mpgn.html may also be useful
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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kim
Posts: 65
Joined: Fri Apr 23, 2004 4:42 pm
Contact:

MPGN

Post by kim »

Hi,
I have had MPGN III for eight years now. I have led a very normal life and although it is very scary at times, feel blessed to have had such a long time without dialysis or anything yet. I know it must be soo difficult to have it happen to your child. This board is wonderful and supportive!!! And everyone is soo willing to answer any questions they may be able to help you with. There are several of us here with MPGN, so feel free to ask any questions. Feel free to send private messages any time you wish. Take care of yourself!!!
Kim
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jadesteva
Posts: 2
Joined: Mon May 24, 2004 4:33 am

MPGN_fears_Thank_you_so_much_for_your_replies

Post by jadesteva »

Thank.you.sooo.much..for.your.replies...it.really.amazed.me.that.people.would.actually.take.the.time.to.post.to.my.desperation..Your.kindness.has.given.me.hope...I.would.write.a.million.thank.yous.to.you..however.my.keyboard.is.broke....
You.helped.me.to.see.light.at.the.end.of.my.darkness....

xoxoxox
Steva,Shaye's.mommy
Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Jadesteva- best wishes to you ;)

Post by Elaine »

Hello read u post. So sorry to hear your news about u daughter. I too have a 16 year old daughter who has kidney disease and has been on peritoneal dialyis for 17 mnths nearly :roll: Life can be tough such a rollercoaster. She has been in hospital 5 x in last 5 mnths came out yesterday after 1 week with infection/ peritonitis. Life can be really tough but you take each day as it comes and learn to be flexible as required.
As others' have said there are many supportive groups to assist you and your family like this board & CHAT etc.

I wish u all the very best and there are alotta people in simailr situations as uself who may be able to advise/ support you. :wink:

take care best wishes Elaine ;) :wink: :P
michelle999
Posts: 11
Joined: Sun May 30, 2004 11:36 pm

Post by michelle999 »

Hi,

Sorry to hear about your bad news. I thought you might like to hear my story, and it might help give you some light at the end of the tunnel.

I was diagnosed with MPGN about 4 yrs ago, I still don't know what type. I was losing massive amounts of protein, and was very swollen. Anyway, the Dr's gave me steriods, and the disease went into remisson.

I had a relapse about a year ago, but the disease went into spontaneous remission after about 3 months. To date, I have normal kidney function, my blood tests are good and I just go back for check ups about every 6-12 months.

I hope this helps you. MPGN does not always have to be a truly dreadful thing.

Best wishes,

Michelle.
lynne smith
Posts: 1
Joined: Wed Aug 04, 2004 7:35 pm

To Steva

Post by lynne smith »

Hi Steva and other members with MPGN,

I have identical twin daughters- one with MPGN 2. We have lived with MPGN for 12 years, and have met quite a few people with all the types.

The Uni. of Iowa is doing an MPGN database survey trying to find some information that will eventually help fill in the many unknowns about the disease, its course, effective treatments and hopefully a route to a cure. I would encourage you to take a look at the site and consider participating. It's one way to help understand this disease.
www.nursing.uiowa.edu/MPGNDatabase

We are running the first round of statistics this month, and some interesting data is coming out. The more people we can get the better the information reliability.

Even with MPGN 2 there are many who have remained stable for many years. There will be an MPGN 2 research conference next week. The NIH is having a conference to address GNs next year. Things are starting to move forward--in that is hope.
Contact me if you want to talk,
Lynne
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