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

A new look

I know I haven't done much lately, so I thought I'd try something new.
Now that I'm done tinkering, what do you think? Maybe next time I
might even try to write something interesting :)

Tag I'm It

A = ADVOCATE FOR: Truth
B = BEST FEATURE: My eyes, smile
C= COULDN'T DO WITHOUT: Family
D = DREAMS AND DESIRES: Buy a home, have kids, travel
E = ESSENTIAL ITEM: Lap top
F= FAVORITE PAST TIME: Reading, photography
G= GOOD AT: Writing
H = HAVE NEVER TRIED: Sushi
I = IF I HAD A MILLION DOLLARS: I would buy a house, pay off my mom's, invest the rest
J= Junkie for: Popcorn
K = KINDRED SPIRIT: Mina
L = LITTLE KNOWN FACT: I'm a sci-fi nut
M = MEMORABLE MOMENT: Going through the temple
N = NEVER AGAIN WILL I: ?
O = OCCASIONAL INDULGENCE: Movies
P= PERSON I MOST ADMIRE: Mom
Q = QUOTE: Worry is the dark room in which negatives can develop
R = REASON TO SMILE: Cause it's fun
S = SORRY ABOUT: Not spending more time with my friends
T = TAG SOME FRIENDS: Annie
U = UNINTERESTED IN: Baseball...boring
V = VERY SCARED OF: Rejection - it feels like crap
W = WORST HABIT: Worrying
X = X MARKS MY IDEAL VACATION SPOT: Europe, New Zealand, Scandanavia
Y = YESTERYEAR DECADE OF CHOICE: '4os - great clothes and music
Z = ZODIAC SIGN: Aquarius

Look what I did!

I love to read. Big surprise! With that love comes a lot of books. Especially with the book reviews I have done/will be doing, the books are really stacking up. I have been in desperate need of more storage for my "collection." So when I found a bigger bookshelf at the store that was on sale, it was a no-brainer. Of course it was something I had to assemble, and at 80 pounds it's no light weight. It took me about 3 hours to put it together - it would have been a lot faster had I been able to find the electric screwdriver! It came with more than 80 screws, so you can imagine how my arm/wrist was hurting by the time I was done. It's also a bit bigger than I initially thought, so my room is pretty much wall-to-wall furniture, but I have tons more space for all my stuff! Next to it you can see the quilt I had mostly completed before I left for Europe. I finished tying it today, and I only broke three needles in the process :)

Coming home

The last day was 11 straight hours on a plane from Paris to Salt Lake. The airport in Paris was huge. It had something like five terminals and each terminal was divided into little terminals. Our taxi driver dropped us off at the wrong mini terminal - it took us 15 minutes to make our way to the Air France/Delta section. At least it wasn't the wrong terminal all together or we would have had some serious problems figuring out where to go. Our flight was delayed, so we had plenty of time to get to our gate. Once they started to board, we had to go through customs/security. Of course I was the only one flagged for an in depth search. I had to take off my shoes and had to have a pat-down. Apparently there's a picture of this, but I have yet to see it. Annie and Trisha thought it was great fun. At least the officer was nice and was joking with me the whole time. After I got my shoes back on, we made our way down a ramp and onto a bus, which drove us to our airplane. The nonstop flight from Paris to Salt Lake is new, and Delta had been making all this hoopla about more leg room, personal TVs, etc. They lied. There was nothing special about this plane except my seat actually reclined this time. No extra space, not personal TV. What a letdown. It was a long flight. There were three movies - one of which we watched on the way to London - and they were played one right after another. Not the best strategy if you're trying to keep people occupied. We had four hours left when the last one was over. Eleven hours cooped up anywhere will drive you bonkers, so you can imagine how happy we were when we finally landed. And it was so nice to feel warm again - although it's gotten old pretty fast. So that's it. That's the end of our trip. We parted ways at the airport and I haven't seen Annie or Trisha since - although I have IM'd Annie. Below are a few pics I snagged from Annie's site.

Jess and Trisha at the Salt Lake International Airport.
This is from our first travel day when we were leaving for London.

Jess trying to sleep on the plane from Salt Lake to London.
It looks like I cut my hair in this picture. Hmmm, maybe I should...
The lady next to me would not turn out her light - she drove me nuts.

Europe Day 8

This was our last full day in Paris. I also got a full-blown cold, too. We started another marathon day at the Musée d'Orsay, which houses impressionist paintings by masters such as Degas, Monet and Van Gogh. The museum is housed in an old train station, which is why the ceiling is so awesome. The Rodin Museum was next on the list. Love his sculptures, especially those of hands and, of course, "The Kiss." We ate lunch in the sculpture gardens there. Yum! After that, we headed off to the Pere Lachaise cemetery where famous artists, writers and musicians are buried. It was very beautiful in a morbid sort of way. The girls wanted to go shopping afterward and we walked the streets of Paris for three hours before heading back to the hotel for dinner. By this time I was so tired and felt so crappy that I went back to my room to pack and go to bed. Annie and Trisha took to the streets again after dinner and I think they had a lot of fun wandering around.

Musée d'Orsay

Dome of the Invalides and Rodin's "The Thinker"

Rodin's "The Thinker"

The hydrangeas in Paris were enormous. These were as tall as Annie.

Chopin's grave at the Pere Lachaise cemetery

Jim Morrison's (aka Jimmy Rasmussen - sorry Trisha)
grave at the Pere Lachaise cemetery

The crypt next to Jim Morrison's grave is covered
with graffiti notes from some of the musician's fans.

Pere Lachaise cemetery

Pere Lachaise cemetery

Pere Lachaise cemetery

Europe Day 7 Part 2

Thinking about it, this really was a long day. How did we do so much? After we left the Louvre, we walked through the Tuileries garden on our way to the Musee de l'Orangerie, which houses some of Monet's water lilies paintings. It's an awesome building, the way the paintings are displayed makes you feel like you're out in nature among them. Next, we headed back to our hotel for a little rest time before heading to the Arc de Triomphe and the Champs-Elysées. A couple of funny stories about this last trip. First, Annie forgot her metro ticket, so she decided to just buy another ticket. That would have worked except Trisha and I had already gone through and come back out, so our tickets were now void. We ended up walking back to the hotel, getting Annie's ticket and going to a completely different station so our tickets would work. I guess it was a good thing, because we made it to the Arc just as the sun was setting - the perfect time to see Paris and all it's lights. Second, we were walking along the Champs and were getting hungry. We walked past the nicest, most upscale McDonald's probably on the planet, but passed it by. We kept passing cafes, but they were expensive. We passed another McDonald's - not quite as nice as the other - but the girls wanted to keep looking. We finally ended up in this shady French fast food place. I lost my appetite as soon as we walked in, but Annie and Trisha were willing to risk it. And risk it they did. Annie said it was the absolute worst fast food she'd ever tasted, and it showed on her face when she pulled what we think was a brown piece of slimy lettuce off of her sandwich. It was one of those times that I wish I had taken a picture. I didn't know such faces of disgust existed :) On a more serious note, this was one of the days that I really regretted not bringing my SLR camera. I kept thinking, "Oh, if only I had it I could do..." It's really heavy and I was smart to leave it home, since I can't afford to replace it, but oh how I missed having manual control.

The Tuileries garden

Annie and Jess eating yummy ice cream in the Tuileries garden

The so-called "kissing bridge." You're supposed to walk across it
with your significant other and kiss at every lamp. I don't know
what that's supposed to do for you other than the joy, or lack thereof,
of kissing someone so many times, but that's what you're supposed to do.

A closeup of the columns at the end of the "kissing bridge."

Jess outside the sushi restaurant on the way back to our hotel...

Arc de Triomphe

Arc de Triomphe

Me at the top of the Arc de Triomphe. For some
reason my camera liked to make me blurry...

The Eiffel Tower "twinking" as seen from the top of the Arc de Triomphe.

A view from the top of the stairs that you have to climb to get to
the top of the Arc de Triomphe. We counted approximately 200.
3 words: Buns of Steel!

Europe Day 7 Part 1

Day 7 was another full day, and as such has also been divided into two parts. Our "tour" was officially over at this point and we were on our own for the last two days. Our first stop was Sainte Chapelle. I had been there before on my first trip to Paris and had been bugging the girls about going there. Jamie had told Trisha about it, too, so they said they'd go, but I think they thought I was overdoing it with the praise. I wish I had taken a picture of their faces when they walked in... the looks on their faces were priceless. To be fair, I don't think you can walk in there without being a bit overwhelmed. The walls are lined with stained glass windows that are practically floor to ceiling, with the ceiling painted blue with gold stars. You are surrounded by stained glass (80% original) and a kaleidescope of colors. When we got there they were starting a tour in English. It just so happened that we were the only English speakers who wanted it, so we got a 40+ minute private tour. Very, very cool. I don't think captions are necessary with these pics - just enjoy.

Sainte Chapelle is surrounded by other buildings, so this is the most of it
you can usually see from the outside. Unfortunately those other buildings
also block the sunlight from coming in the stained glass windows. . .

Our next stop was Notre Dame cathedral. It was fun for me to see the facade without scaffolding. We walked through, but didn't take any photos inside. It's pretty impressive, but I like Sainte Chapelle better. Afterward we went and bought crepes from a street vendor. I got mine filled with Nutella - gasp, chocolate, which tastes more like hazelnut than anything. I though of Mom while I was eating it :)

Apparently there is always one group or another protesting something in Paris. This was one of them. Couldn't tell you what they were protesting, though. We saw them on our way to the Centre Pompidou, a really cool museum that houses modern art. The building is cool because all the inner workings - water, electricity, etc. - are on the outside in different colors. It's like the building is turned inside out.

Protesters

Fountain outside Pompidou - look familiar?

Next stop was the Louvre. Part of it is on this post, part on the next. The Louvre is so big we had to map out what we wanted to see and skip a lot of the rest. We just didn't have time to do and see everything we wanted - we needed a week, at least.

Winged Victory - Nike of Samothrace

Closeup of the Nike of Samothrace

While Trisha checked out the stuff on ancient Egypt, Annie
and I ate lunch on a balcony at the Louvre. The view was
great, the food was better, the experience was priceless.

Europe Day 6

Day 6 was our day at Disneyland Paris. It was quite an adventure buying tickets for the metro, and it took us a while to find the ones that were not 50 Euros! I think it ended up being approximately 8 Euros each way, which was much better. It was an overcast day and looked like it might rain, but while we were getting our lunch, the sky opened up a torrential downpour. It poured for about 30-45 min and then it cleared up, and by the end of the day the sun was out. Crazy weather - reminded my of home :) I didn't take any pictures at Disneyland - let's face it Disney is Annie's thing - but I did get a Buzz Pez dispenser :) By the time we left the park, we were all pooped. I think we all had some of the best-night's sleep of the trip that night.

Annie and Jess at the entrance of Disneyland Paris.
Thanks, Annie, for the photo.

Europe Day 5 Part 2

We toured the inside of Versailles, which is just a little over the top. I mean how big of an ego can one person have? The pictures don't do it justice. It's gold swirls and flowery stuff everywhere.

Painted ceiling in Versailles

Chandelier and painted ceiling

Painted ceiling

Tapestry

Hall of mirrors

Where's Annie? Can you find her among the crowd in the hall of mirrors

After leaving Versailles we spent the afternoon shopping. I got some cute tops, Annie bought a red dress and Trisha came along for the ride :)

Next was a trip to the top of the Eiffel Tower. Annie only wanted to go to the middle level - she doesn't like heights - but we talked her into coming to the top, which I think she's glad she did.

View from the top

Annie taking a picture

Another view from the top. The Arc de Triomphe

Annie and Trisha

Me at the top. Do you like the windblown look?

One of the wheels that raises and lowers the elevators

Eiffel Tower