Hi my name is Scott

[scottiowa]

Hi,my name is Scott Wheeler. I am 43 yrs old and I live in Iowa. I am a father of 2 daughter's and have 3 grandchildren. I was diagnosed in 2011. I had to endure 3 yrs of Hemodialysis. Then I had a transplant. But the Nephrologists will tell you that this disease has a 50/50 chance of coming back post transplant. That's exactly what mine is doing. My last month's labs showed my kidney function down to about 36%. My biggest fear,other than death,is having to go back on dialysis. Thank you for letting my share my story

[Ghoskins]

My husband has C3G. He is stage “kidney failure.” He is not on dialysis yet. We are near Iowa City and getting care at UIHC. Is that where your nephrologist is located?

[scottiowa in reply to Ghoskins]

Yes. My rare kidney disease Nephrologist is at UIHC,in peds nephrology. My regular kidney dr is in Ft.Dodge by where I live

[Ghoskins in reply to scottiowa]

She is my husband’s nephrologist too. We are very grateful for her.

[scottiowa in reply to Ghoskins]

Dr.Carla Nester

[scottiowa in reply to Ghoskins]

What is the name of the C3G group you started on facebook?

[linfuller Ambassador in reply to scottiowa]

There is a Facebook group called C3G Warriors - we would love to have you join us there!

[scottiowa in reply to linfuller]

I tried to find that this morning. But couldn't find it. Please send me a friend request. My name is Scott Wheeler

[linfuller Ambassador]

Welcome, Scott! I'm so sorry to hear that your transplant is in danger. I understand the fear and stress - my father had C3G before it was a known disease, and he went through four transplants. He fought going back on dialysis each time until the last possible minute, because he was so miserable on it. Watching a transplant fail, holding your breath each time you get labs and hoping for good news - it is so hard. Have your doctors tried any treatments for the C3G? Have you looked into the possibility of drug trials? I'm not sure if any are open to transplant patients, but it might be worth looking into. Also, have you considered peritoneal dialysis if/when the time comes? I know many dialysis patients find this alternative much easier on their bodies and their lifestyles. Sending you hugs! Whatever happens, you will get through it.

[scottiowa in reply to linfuller]

I have tried to qualify for drug trials but wasn't qualified enough

[linfuller Ambassador in reply to scottiowa]

Ah, that stinks. Hopefully your kidney can hold out until they get the drugs on the market, then.

[ANDYL_DDD Ambassador]

Welcome scottiowa, good to have you here.

Transplant and dialysis really stinks when it comes to drug trials, these patients just get knocked/ let down when they are at their lowest. But you keep strong and very focused PLEASE. ( New drugs and trials are just around a very short corner )

God bless.

[DavidF_NKF Partner]

Hi Scott, It's great to have you in the community. I'm very sorry to hear of your declining kidney function. Hopefully, from this community, you will find strong support and ways to cope with your fears.

[DavidF_NKF Partner]

Scott, Linfuller is right to suggest looking into peritoneal dialysis. Please click on "Dialysis/Transplants" in the Topics listed above- there's information in which you may be interested.

[Vik95]

Hi Scott,

How are you doing? How is your kidney doing? I’m thinking of you and hoping to hear good news back from you.

Vikki