My wife is getting a new kidney!

I've done the same.

Quintin_Stone wrote:

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.

I have a cousin who lives on the north side of Raleigh who has offered us space but I appreciate the offer. If we do end up going the UNC route, I hereby put the RTP crowd on notice that a slap and tickle will be in order while we are there. From my understanding, the hospital stay will be about a week and then we will need to remain near the hospital for 2-4 weeks following surgery, so there should be plenty of time to pull something together.

Gorilla.800.lbs wrote:

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

concentric wrote:

I've done the same.

And again, thanks so much to you both and to everyone for their support and well wishes!

Bad Ferret, I hope the process goes smoothly and quickly for you Should you find yourselves referred up to Johns Hopkins in Baltimore, the Bear Den is open to you. We are about 30 to 45 min from the Hospital. I also wish to add one piece of advice. I had a friend go thru a similar idiopathic disease that attacked his liver. After the surgery, he felt great and left the hospital sooner than recommended and had complications which caused the transplant to fail. I would urge you and your wife to make the decision to stay in the hospital as long as the docs want you to.

Update time!

My wife has now met with all three of the kidney centers that she will be working with.

Here is my wife's recent update in her own words:

Hey everybody,

So 2015 has already shown a lot of development in my quest for a spiffy new kidney. I've met with two of the three transplant centers (UNC Chapel Hill and Charlotte). In March I'll travel to all three centers for testing and meeting with various specialists which should allow me to be enrolled in three transplant systems, each with their own potential donor pool.

I have learned that it is preferable to transplant a living donor kidney as the success rate and chances of avoiding complications are much better with a living donor, and the wait is much shorter. It feels uncomfortable asking this but if you have any interest in being tested for the possibility of a match I would be incredibly grateful. A donor would likely have a hospital stay of a couple of days and could return to work within a few weeks. Much of the pre-testing can be done wherever you are located, and my insurance will cover the medical costs. The really hopeful thing about the living donor process is that anyone who is willing to be tested for a match wouldn't even have to be a match for me. Transplant centers now conduct matching programs where the friends and loved ones of all of their patients are matched against other people in their programs so someone I know might be a match for another patient, while that person's donor might have a match for me (the old kidney switcheroo).

Please know that I don't expect anyone to feel obligated to volunteer for testing but the transplant centers encouraged me to get the word out so that I can hopefully avoid having to go with a non-living donor. If you have any interest in learning more about being tested or just what the process would entail, you can contact me and I can give you direct contact info for the Living Donor Coordinators.

Much love and thank you for all the support and kindness offered.

We are really hopeful that things will go smoothly and that she can get a new Kidney this year, but first we need to find that new kidney. Now giving up one of your own organs is a big deal, but luckily, as a species we were given an extra one. This means that living kidney donations are by far the most common type of living donor donation and are relatively straight forward for the donor. The kidney matching programs that they have now are really revolutionary but they depend upon getting folks tested. So, once again I will ask for your social media shares. Perhaps someone in your network knows someone also going through this process, if we can link our testing efforts in can be a win/win.

You can read more about the kidney donation process here.

And some news about kidney matching here.

And finally a continued thanks for all of the well wishes and donations. I know a number of you have set up monthly donations and it really is appreciated. My mother-in-law keeps the gofund page updated with news as well, so that continues to be a great thing to share.

Good luck, hope your wife finds a donor soon! Thanks for the update.

Time for an update and a question.

The team at UNC Chapel Hill reviews my wife's case on Monday, we are very optimistic that they will accept her into the program which will then kick off the living donor matching in earnest (she has already accrued time for a deceased donor but that wait time can be years.) Her nephrologist now estimates that her current kidneys will last for about another year before she will need dialysis, so the clock is definitely ticking to find a living donor. I will be signing up to see if I'm a match but the odds aren't great that I will be, and my wife has several friends and relatives who are in the process of signing up to be tested but the more people willing to be tested the higher the chance that we will find a living donor. While we realize that donating a major organ is a huge commitment, one bit of information that we have learned from the kidney teams is that as a species, we don't medically need the second kidney that we are all carrying around, and that only having one does not increase the risk for anyone who donates. In short, if your kidneys ever stop working, they both stop, so having an extra one doesn't provide any medical benefit. Basically, we evolved two kidneys purely as a means to protect against trauma, which is why active duty military or law enforcement folks can't be kidney doctors. Short of getting a gored by a bull or speared/stabbed/shot in one of your kidneys, we are all just carrying around an extra one.

Which leads me to my question, I'm thinking of creating a blog, website or dedicated facebook page for my wife's search for a new kidney and was wondering if anyone had any recommendations on which way to go. Sites like caringbridge tailor their design for people with chronic illness and seem relatively straight forward to set up but I wonder if a blog might seem more personal. We do make post to our facebook pages, but fb seems increasingly wonky, in that we have heard from several friends that they haven't seen all of our updates. I have a friend who's son was born with a heart condition and has needed a heart transplant, and they set up a dedicated fb page for their son's journey which has generated a lot of social media interest. A separate fb account would also seem to have the advantage of being able to be flagged as public, so that we could more easily share it with communities such as this one. My dream would be for my wife's story to be picked up by some level of media as I keep seeing stories about other people seeking kidney transplants at places like CNN and Yahoo, often with follow up stories about how a complete stranger volunteered for testing and proved to be a match. I'm thinking of starting locally with this effort and see if the local TV station has any interest in featuring her in one of those person of the week segments. My wife truly is amazing, despite dealing with this condition she has been bravely soldiering on with her work as a parent educator, a great mom to our very energetic three year old son and just being a wonderful friend and wife. Personally, I think she has a great story to tell.

So, any advice or ideas that I can pursue as far as leaving no stone unturned in our pursuit of a new kidney?

Best of luck to you and your wife.

I've used Caringbridge for a number of situations and don't see why your wife's situation would not be a good match. Additionally you may find some of your extended circle already have caringbrige accounts which makes it easy for them as well.

I recently read about some programs where a willing donor who is not a match gives a kidney to someone who is a match and a chain is started until it circles back to the original person. That's worth looking into.
When I heard about that I looked into donating but I basically can't

realityhack wrote:

I recently read about some programs where a willing donor who is not a match gives a kidney to someone who is a match and a chain is started until it circles back to the original person. That's worth looking into.
When I heard about that I looked into donating but I basically can't

Yeah, all of the centers are doing this now, including UNC, so that's why were trying to get as many people as possible to sign up.

Rahmen wrote:

Best of luck to you and your wife.

I've used Caringbridge for a number of situations and don't see why your wife's situation would not be a good match. Additionally you may find some of your extended circle already have caringbrige accounts which makes it easy for them as well.

Thanks, it looks like you can set Carinbridge to public, which is what I'm looking for, that way we can keep our FB post with pictures of our boy just for friends and family and yet still keep a place where we can make updates while my wife goes through the donation process.

like i said. Unfortunately I can't donate. Best of luck though.

Hey everyone.

We have had a hellish couple of weeks.

The CaringBridge page is up and has all of the details, please consider sharing the CaringBridge page with anyone you can think of.

http://www.caringbridge.org/visit/be...

For the many of you who are friends with Becki on Facebook, you probably know many of these details but for everyone else, Becki has had quite the couple of weeks.

Two weeks ago she was rear ended and our beloved Toyota Matrix was totaled. We thought at the time that she had escaped any injury and her GP didn't detect anything but the events of the following two weeks have made me wonder.

On June 5th, Becki started demonstrating stomach flu like symptoms which progress until Sunday of that week when it was discovered that she needed an emergency appendectomy. We hoped that the appendectomy would be the end of her current medical issues but follow up testing yesterday that her kidneys are not functioning very well at all right now. She spent last night at Mission Hospital here in Asheville, and will likely be there until at least Monday. The Doctor's are currently not sure exactly what is going on right now, and there is still a hope that with fluids and rest her kidneys can stabilize, but there is also the real possibility that she will need to start dialysis in the coming weeks.

Regardless of the outcome of this current episode, we need your help. We need noble souls to contact Amy Woodward, the Living Donor coordinator at UNC Chapel Hill. Amy can be reached via: Phone: (984) 974-7568

We also need your help in sharing Becki's story. Locally, medium's like WLOS's Person of the Week might be a worthwhile goal: http://www.wlos.com/community/featur...

But if you know of any other media outlets to share Becki's story with, please feel free.

And please share Becki's CaringBridge site. The site has been made viewable by all, so that people beyond our social media contacts can be kept informed more easily.

Becki is a great mom, wife, friend and co-worker and right now she is really affraid that her condition and treatment will negativelly impact her quality of life in those areas. She needs our love and support and the knoweldge that we will all be here for her. And most imporantly off all, she needs a new kidney as soon as possible. If you had been considering contacting the Living Donor program, but thought that Becki had plenty of time, or maybe someone else would be a match, please know that the time is now to make that call to Amy Woodard.

Thank you!

What blood type is she?

Man, that's rough.

I actually don't know what to say for once.

There's been an update and a rough week for Badferret and his spouse:

http://www.gofundme.com/frmr9o

Totaled Car, House issues, appendix surgery. Prayers and love to you friend.

Donated just now. Hope it helps, Badferret. Sounds like you've had a sh*tty few weeks, too.

MathGoddess wrote:

What blood type is she?

Ironically, she is O + the universal donor. But, if you are at all curious about living donation, please contact Amy in the post above, with the transplant network's system of extended matches, you don't have to be a direct match to my wife, or anywhere near North Carolina. Amy will walk you through some initial questions and then if you still qualify and are intersted, she will send you a packet with forms and everything you would want to know about the procedure.

Quick update, I am back home with my 3 year old son, while my sister-in-law takes the overnight shift at the hospital. We will know more tomorrow as to whether or not she will need dialysis in the near term. Our hope is that with continued IV, her creatinine levels will come back down after spiking yesterday. They have shown the tiniest hint that they are trending down, but we won't know for sure for at least 24 more hours.

I truly do appreciate all of the well wishes, donations and offers of help, it means more than you know! I am guessing that my posting will be a bit erratic for the next few days but I will do my best to provide updates.

Badferret wrote:
MathGoddess wrote:

What blood type is she?

Ironically, she is O + the universal donor.

O- is the Universal Donor. On the other hand, I am O+, which is close but not quite.

Quintin_Stone wrote:
Badferret wrote:
MathGoddess wrote:

What blood type is she?

Ironically, she is O + the universal donor.

O- is the Universal Donor. On the other hand, I am O+, which is close but not quite.

Gah, will have to double check and make sure I have the right O.

At the hospital on my phone so will be brief. Diagnosis came in as tubular necrosis which does mean that she will start dialysis today but there is a 75 percent chance that she will be able to come back off of dialysis after a few weeks of dialysis, as the tubes are the one part of the kidney system that can regrow.

She is sleeping next to me after getting her dialysis port installed this morning and other than really missing our boy is maintaining her spirits.

#Edit. She's off to dialysis, 3 plus hours till she is back.

Hang in there Badferret.
I have been dealing with a few family health issues over the last 3 years so I'm sending you whatever positive energy and empathy I can muster at this point.

Oh my goodness, I am just so sorry. I cannot imagine having this happen to my wife. So terrible. Believe me, if I could take this away from her and put it on myself, I would in a heartbeat. So sorry.

I am going to look over the living donor. However I tried to donate blood a few months ago and was told I couldn't because I spent a few months in England back in the late 80's. Turns out, that was when the whole "mad cow" thing was happening, and that can lay dormant for decades. So I have a permanent block from donating blood.

I can't believe I just found out about this.
Thoughts and prayers from Mexico.

I just chipped in a bit, hope it helps.

Second day of dialysis in the books. Her hemoglobins were low so she got a blood transfusion as well today, which hopefully won't complicate her search for a new kidney too much but it needed to be done. They haven't told us when she might be able to go home yet, but I'm hopeful for this weekend. They just moved her into a slightly larger room with an actual window, and that should help her from going completely stir crazy. Our little one is holding up amazing well and has been really great on the phone with her.

I updated the caringbridge page with some more info.

Hopefully, the next update will be to report that she is home!

Glad she got a nicer room. It helps when you are more at ease. Hopefully out soon again though!

Best of luck, Badferret. I truly hope for the best.

I looked into living donation but can't personally. As for blood type remember you can chain so anyone might work.
Good luck to you

realityhack wrote:

I looked into living donation but can't personally. As for blood type remember you can chain so anyone might work.
Good luck to you

Yes, absolutely right, they don't just match for her, they match in a whole network, think six degrees to Kevin Bscon's kidney.

In good news, despite also being diagnosed with C. Diff, she is currently on target for discharge tomorrow!

Badferret wrote:
realityhack wrote:

I looked into living donation but can't personally. As for blood type remember you can chain so anyone might work.
Good luck to you

Yes, absolutely right, they don't just match for her, they match in a whole network, think six degrees to Kevin Bscon's kidney.

In good news, despite also being diagnosed with C. Diff, she is currently on target for discharge tomorrow!

Good news on the discharge. My wife also had c. diff in the hospital the other week, but they didn't tell us for a week. They also don't tell you the majority of cases are acquired in the hospital.

Wow, it has been six months since I updated this thread? Well, here is a quick Christmas Eve update.

Things are finally reaching a place that kind of resembles normalcy. My wife has been successfully transitioned to peritoneal dialysis and should be getting her overnight cycler in the next week or so, which will allow her to do her treatment at night. Currently she has to do the PD treatment manually four times a day, which while it can be something of a logistical annoyance, at least doesn't make her feel bad, which is a huge improvement over the hemodialysis that she had to do before.

Unfortunately it took several attempts for her docs to get the PD dialysis dialed in, which meant that my wife had to remain on hemo through October. The hemo treatment consisted of about 4-5 hours hooked up at a dialysis clinic three days a week. She felt pretty normal on the days that she didn't have hemo but on treatment days she felt completely wiped out following the treatment which also made her feel guilty for being less available for our boy and me. Complicating matters even more was that her hemo port had been installed right above her heart, meaning that she couldn't take a real shower while that port was in her chest.

But, as I said, she has now been on PD for about two months and once the cycler is here, she can pretty much get back to a completely normal life for now. Unfortunately, PD dialysis doesn't work forever, on averaging being effective for about seven years, so she still does need to find a kidney but until that shiny new kidney materializes she can live as normal of a life as possible.

I also wanted to thank everyone again who has donated to her gofund page, shared her story via social media and sent us well wishes. The GWJ community is truly amazing!

Our hope for 2016 is that she will find a match and she can go ahead and get the transplant. Currently a few folks have been tested, no direct matches yet, though one person has been entered into the system to see if they can be matched to someone else, so we remain hopeful on that front but still need to get the word out for anyone who might be interested in becoming a living donor.

Again, thank you Goodgerdom and may everyone have a happy and safe holiday season!

Update time!

My wife is getting a new kidney!

Surgery is currently scheduled for the end of November, so just a month a way.

I have done a horrible job of keeping this thread updated but we have kind of entered our "new normal" with my wife on daily peritoneal dialysis and raising our four year old; my time at the site has been limited and tended to gravitate to my "escape" topics.

I do want to thank everyone for their support and kindness since this all began. If you are curious about the donor or would like to read my wife's words she updated the caring bridge site.

If all goes according to plan I will be back in December with an update on an armed and fully operational kidney!

Awesome! Hope everything goes well!