My wife is getting a new kidney!

Hello Goodgerdom!

Last summer my wife was diagnosed with Iga Nephropathy, which is a rare genetic disorder that eventually shuts down the kidneys. The good news is she remains in good health, but her kidney function recently passed the threshold needed to be placed on the kidney donor list. Our hope is that having caught the disease early enough, we can either find a match from a friend or family member, or advance through the donor list process quickly enough that she never has to go on dialysis. The other good news is that if you need to have a organ transplanted, kidneys are the way to go, as it is the most common transplant procedure, and generally considered the safest. So, once we find a shiny new kidney, my wife can expect to live a long and normal life, which is a doubly good prognosis as my wife and I are also still relatively new parents with a two and half year old boy who is our pride and joy.

While we do have insurance we have already started to accrue an impressive collection of medical bills, which will only continue to grow.

We would truly appreciate any support, well wishes or social media shares that you could provide.

We have established a GoFundMe page: Team Becki. For anyone who kindly makes a donation, feel free to include your GWJ name or indicate that you are from this great community, or simply drop me a pm. I will do my absolutely best to personally thank everyone and hope to be able to pay any kindness forward once we have reached the finish line.

Here is a link for information about Iga Nephropathy.

Thank you and thanks to Certis for permission to post this!

Oh, Akunin, your family is in our prayers. I feel terrible being so far away from you guys, I wish I was as close physically to you as a feel we are emotionally. It kills me that the only real help I can give you is through the web.
Much love to you guys, I wish I was closer to go help you guys with your tittle boy or whatever else.
Keep us updated, please, and I am reposting your fund raising through my social media.

The best of luck to you and your family, we're here for you.

Good luck! Chipped in. Do you know approximately when is the surgery expected to take place?

That's quite something to happen to a person. Good luck with finding a kidney and the recovery after.
Hope the bills won't put you two into poverty and people are able help out a bit

Good luck, know that I will keep both you and your wife in my thoughts!!!

Best of luck to you both.

Good luck to the both of you.

Good luck to your family, may everything go as well!

Thanks everyone!

Gorilla.800.lbs wrote:

Good luck! Chipped in. Do you know approximately when is the surgery expected to take place?

She will go in for her first match evaluation in the next month or two, then it will be time to check family and friends to see if there is a match, if not we will be placed on the wait list. So, if we have a match in the first round we could be looking at the surgery in the next 6 months to a year. If we go on the list the timing will be less certain, but her doctor believes that she will move quickly up the list because of her age and otherwise excellent health. So, maybe more than a year if we are wait listed but likely less than two or three.

She is following a strict non-phosphate diet that is designed to preserve her kidney function as long as possible, so hopefully, even if we are looking at the longer time frame, she can avoid dialysis and go straight from her current kidneys to the donor.

Further out, evidently they are making real strides are growing new kidneys out out of a patients own DNA, which would potentially eliminate the need for the anti-rejection drugs. Hopefully such an option would be available before she would need transplant #2. (The average use of a transplanted kidney is 17 years, though again, young age and healthy living can greatly extend that time frame.)

I will certainly keep everyone posted as we go through this process.

This post was just brought to my attention as I am a filthy skimmer. I've known the bloke and the misses for several years. I will be tossing into the plate as soon as I get home.

They're great people. If you cannot help donate, please pass the link around. When I was diagnosed with Heart Disease last year Akunin was right there checking on me and offering his support. When I lost one of my dogs back in 2007 he also took the time to console me and share stories with his hounds. When I lost my father, his sympathy was given yet again.

He's a strong family oriented fellow who cares a lot for his son and other people. There were many guild Dungeon Runs stopped in their tracks so he could check on Eli. This is a good man.

Chipped in, best wishes to you both!

That website is kind of nifty. I had never used it before, but it's a great idea and easy to use. I fully expect regular updates and patches for this alpha.

Thanks for all of the recent donations and kind words. My wife and I have been truly amazed by the support.

So what's a non-phosphate diet like?

Sticky notes FTW (call me archaic) - I have to wait for some deposits to clear but I'll help out w/ what I can. I truly hope your wife's procedure is cleared and successful. Until then, may your biggest worries be potty training and monsters under the bed

I donated. I am sending good thoughts to your family.

GoldenDog wrote:

So what's a non-phosphate diet like?

Hmm, off the top of my head. No to low beans (including soy), cheese and dairy, chocolate. Strangely white bread is better than wheat, which also catches things like pancakes. Also, anything with caramel coloring, which actually catches some of the meat alternatives.

Its not a horrible diet by any means, and her doc said even the occasional pizza is ok.

0megawolf wrote:

Sticky notes FTW (call me archaic) - I have to wait for some deposits to clear but I'll help out w/ what I can. I truly hope your wife's procedure is cleared and successful. Until then, may your biggest worries be potty training and monsters under the bed

Heh, we haven't even begun to tackle potty training besides introducing him to the concept with books and his own potty, hopefully he starts showing some interest soon.

concentric wrote:

I donated. I am sending good thoughts to your family.

Very much appreciated!

All the best. Hope you find a good match quickly.

As promised, sorry it took so long but I've had a couple of surprises to juggle down here

Good luck.

I wish I could give so much more. Good luck and keep us in the loop.

Thanks for the donations and well wishes!

My wife goes in for her next check up next week, hopefully her numbers continue to hold. I will keep everyone informed when we have actual news on the organ transplant front. As I mentioned earlier, we are expecting be screened by that system this year but as yet they have not scheduled anything.

I have a brief update and a quick question.

My wife will have her first evaluation with one of the transplant teams in early January and in the literature she has been given, it looks like, should she not have a friend/family match, she should be on the donor list within 180 days of that first evaluation if everything goes smoothly.

So, yay, progress!

Now a quick question, we plan on submitting to three separate hospitals, none of which are in our home city. UNC Chapel Hill will be doing the first evaluation and then from our understanding we can then have that evaluation shared with the transplant teams at Charlotte and Charleston.

Chapel Hill and Charleston are about 3.5 hours from where we live but have the advantage of having friends or family locally that we can use as support and with lodging. We don't know anyone in Charlotte but it is closer to our home being only a couple of hours away. My question is if anyone has any advice is evaluating hospital/medical staffs in the event that all three transplant teams accept my wife?

Finally, my wife doesn't have a GWJ account but she wanted me to share her recent FB with GWJ:

Many of you already know this, but I'd like to share about the medical issue that I am dealing with - I was diagnosed with IgA Nephropathy last year which is a random genetic disease that will lead to the eventual failure of my kidneys. I am currently at stage 4 which sounds (and feels) scary though I am mostly symptom free (I am extremely tired sometimes but I have a high energy 2.5 y.o. so that may have something to do with it!). I'll need a new kidney at some point in the future and have been referred to three transplant centers to begin the evaluation process. My initial evaluation is scheduled for January 2nd in Asheville. I am scared but also trusting that I will move through this process with strength and success. My wonderful mom has started a gofundme site and I am amazed and very grateful for the kindness directed my way from friends, family, friends of friends, and generous strangers. I want to thank everyone for all of the love and support that I have already received and I will post updates on my way to my "shiny new kidney"!

Also, the gofund page has been updated with a picture of our family, including yours truly.

Thanks for the update! And good luck with everything

I have no info on hospital staffs, but if you guys go to UNC, you can stay in our guest room in Cary. It's about 30+ minutes from UNC, which is a bit better than 3.5 hours.

My review from our previous stay: Quintin_Stone and Yellek's guest room is comfy, and comes with free in-room live entertainment if you leave the door open a few inches.


LouZiffer is talking about our cats, just to be clear.

Quintin_Stone wrote:

LouZiffer is talking about our cats, just to be clear.

Spoil sport.

Completely forgot to donate in the past months! Another small donation coming your way. I've set up a monthly schedule.