Getting closer

Jake's one step closer to getting his transplant. Yesterday, the hospital called to let him know that the transplant team had accepted him as a patient and would recommend him for the UNOS transplant list. But, the insurance company has to approve it first, and who knows how long that will take. We are, however, very excited that the hospital approved him and things are really starting to move forward.

This is one of my favorite pics of Jake. He's holding our cousin Rachel.

Home

We're home! Yay! The drive from Salt Lake to Phoenix isn't one that I recommend you make on a regular basis. Especially since there seems to be a speed trap about 75 miles outside of Phoenix. We passed four cops in 20 minutes, and the last one pulled me over. I was going about 5 miles over the limit. He gave me a warning though. I don't know if that was because I really looked cute in pigtails, that we were coming from the Mayo Clinic (he asked why we were in Arizona) or a combination of the two. Not that I'm complaining. I'm happy to not have a ticket.

Now it's just a waiting game for us. We'll here on Wednesday if Jake has been listed. After that, he can stay here until the organs become available. He'll need to have blood drawn once a month so that it's available for tissue typing when the time comes.

Here's the one and only photo we took on this trip: Mom
and Jake at the rest stop overlooking the Grand Canyon.
I'm sure they'll be sooooo excited that I posted
this, so shhhh it's a secret.

Second day of tests

Today was Jake's second day of tests. We had to be at the hospital at 6:30 a.m. Jake had a fasting blood draw and they took 21 tubes of blood. We met with his social worker, his nurse coordinator, a dietitian and one of four surgeons that perform the kidney/pancreas transplant operation. Here's what we learned today.

Blood: O is the universal donor, but someone with O can only receive O. A can get A or O. B can get B or O. AB can get A, B, AB or O. Positive and negative don't matter. Most people are O, so it's the longest list. AB is the rarest, so shortest list. Jake is A.

The list: Right now, in this region, there are four or five people on the A list ahead of Jake. Assuming he's put on the list, priority goes to the best match, not to who is the sickest, because dialysis is available. The hospital has done 28 kidney/pancreas transplants so far this year. If you follow those statistics, Jake is looking at about a 6-12 month wait. Which is much better than just a kidney, which would be three to five years.

Candidate: Everyone we met with today seemed to think Jake was the ideal candidate, so pending something unforeseen, we're pretty sure he'll be put on the list. We should find out about that a week from Wednesday.

Surgery: After the surgery, Jake would have to stay in the hospital five to seven days. He would have to return to the hospital three times a week for two weeks. And then two times a week for another two weeks. And then a week of final testing before he can come back to Salt Lake. He would need a "caregiver," which would probably be me, to stay with him for at least two weeks following his release from the hospital. After that he would have to return to Phoenix after four months, eight months, a year and then once a year for the rest of his life.

Meds: Jake would initially be on anti-viral, anti-fungus, antibiotic and immune suppressive drugs. After a certain amount of time, they would take him off the first three. He would need to take immune suppressive drugs for the rest of his life.

Organs: Once removed from the donor, the kidney/pancreas remain viable for up to 24 hours, which gives us a bigger window to play with than most transplants. Once notified of the available organ, the hospital has one hour to contact Jake, make sure he's healthy and accept the organs. Otherwise, they get sent on to the next candidate.

I think that's it for today. I'll post more if I remember or learn anything else new.

Day one of testing

We spent the day at the Mayo Clinic and Jake had a couple of tests with more tomorrow. Here's what we learned today.

After the tests, a panel will meet and discuss Jake's case. Following that meeting, they'll call and let us know if Jake is a candidate for the transplant list.

Because Jake would be getting two organs, he automatically would be bumped higher on the list.

Depending on blood type, the wait for an organ can be a few weeks or more than a year.

Success rate for kidney/pancreas transplant is about 93%-94%

If Jake gets the transplant, he'll have to stay here for four weeks following the surgery.

And finally, Jake and I can spend 48 hours together without killing each other. But we still have 48 hours left, so no bets on how that will play out :)

We made it

After a very long drive, we've made it to Phoenix. And after getting stuck behind some big trucks, I can honestly say that I understand road rage a little better. Anyway, no big incidents. We got here safe and didn't get lost. Tomorrow, we've got a full-day of meetings/tests. Oh, and I brought a camera, but no USB cable to upload photos. I knew I forgot something. I guess it could be worse. That's all for now. Hopefully I'll have something interesting to post tomorrow. -Jess

Me and Jake

A little more information for those of you just tuning in. There are five kids in our family, and Jake falls smack dab in the middle. Our parents thought J names would be soooooo much fun. So we're Jennifer, Jonathan, Jacob, Jessica and Joshua. Jake and I are the only ones still living at home. Funny thing is, though, we can go for days without seeing each other. So after this trip, we may have had enough together time. The next post will be from Arizona. At least 10 hours stuck in a car together. Wish us luck!

Me and Jake when we were still cute and little.
This was soon after he was diagnosed with diabetes.

A change in direction

I know I am horrible at this whole blog thing. Sorry. I hope to be more consistent in the future.

I'm changing direction on this blog. My posts for the next while will be centered on my brother Jake.

Jake is diabetic. He's had the disease since he was 3. When you have diabetes that long and as severely as Jake, it does a number on your kidneys. Well Jake's kidney's have finally had it, and the doctors have decided to take the next step.

Long story short, we've known for a while that Jake needs a transplant, but it's just recently that the insurance company has agreed. However, the insurance company won't pay for it here, so we have to go to Arizona.

We're driving down to the Mayo Clinic in Phoenix in a week for two days of testing. When his kidney function dropped from 23 percent to 17 percent in three months, the insurance company decided that yes, maybe he is sick. Hopefully after all the tests, he'll be on the kidney/pancreas transplant list.

We don't know very much about the process, but I guess that's what we'll learn while we're there. The goal is to for him to have the kidney/pancreas transplant and then he would no longer be a diabetic. That's the ideal. If he gets a lot worse while waiting, then we'll try for a living donor.

Here's some links to info. you might find interesting. I'll try to keep this updated as we learn more.

The May Clinic

National Kidney Foundation