WAHOO!!!!

Lot just off the phone with the transplant (I need to shorten that word somehow to make it easier to type) team and as soon as he looses the weight, around 10 pounds now, and takes an online class about his prescriptions and how he will need to take them, when, how many, side effects, etc, he can have a transplant!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

His antibody and white blood counts are at 0, which is VERY good news. The higher those numbers, the less chance that a match will be found, whether living or cadaveric (big word, but it sounds better than dead).

If you would like to see if you match, let us know in whatever way is easiest for you and we will give you the name and number of the person you will need to talk to to start that process. You will be able to complete steps 1 and 2 which is talking to her and a blood test.

More people, more info.

 *If you would like to be tested to see if you are a potential match for Lot, please, please, call, text, email, or send us a message on facebook. A living donor kidney is better tested and lasts longer than a cadaveric donor kidney.*

After we learned all about the living and some about cadaveric donors, we saw a social worker. She talked to us what to expect (or at least plan) after the transplant. Lot will be in the hospital for 5-7 days and then need to stay in Utah for a few more weeks. We could leave after a week out of the hospital, but it could be up to 3 weeks (4 weeks total). If there are no problems with the healing of the 4-5 inch incision, and NO rejection episodes, we could be home in 2 weeks. It is a very individualized process and no one is the same.

During this time in Utah, Lot will have labs drawn on Monday, Wednesday, and Friday, before 8am and have an evaluation of the lab results after 2pm that same day. Lot will not be able to drive for 3-4 weeks post op, so guess who gets to make very good use of our GPS (and of taking the wrong exits and being the one person in the state going the speed limit)? I am so not looking forward to that.

Because we have to stay in Utah for a little while, we will need someplace to stay where Lot can avoid people, sick people and kids to be exact. If whoever is a glutton for punishment and is watching our kids at this time wants to bring the kids down, that is fine. If they are sick or have been, Lot will have to wear a mask around them. If we go anywhere, he will have to wear a mask. Going to parks and possibly outdoor malls is fine. Walmart and anyplace there is going to be sick and a lot of people, is off limits. Lot will be immuno-suppressant for the rest of his life, but this first 3 months after the transplant is the most critical that he not get sick or have an rejection of the donor kidney.

Next we saw a transplant financial coordinator. She talked to us about insurance, the costs of the transplant with various insurance options, the prescription costs when we leave, etc. The only cost to us when we leave the hospital is for the prescriptions. Everything else will be billed to the insurance first and then us. The total cost before insurance for a cadaveric donor is $265,700. A living donor is $292,700. Medicare Parts A, B, and D cover the majority of the cost. Lot qualifies for what is called Extra Help, the costs will be even less to us. We are not sure what those costs will be until we get a bill. If everything goes smoothly during surgery, it will be less than if they run into any unforeseen problems. Same thing with the prescriptions. There is a drug called Valcyte (no generic at this time) that Lot may have to take, although 90% of patients have to take it, so there is a high chance Lot will fall into that category. Anyway, that drug is very expensive, but it is only needed for 3 months. After that, he will be on Prograf, Prednisone, and Cyclosporine. Those are the 3 immune-suppressant drugs that Lot will have to take for the rest of his life. He will not have to be on Humira for his psoriasis and athritis being on the 3 drugs. Humira is in the category of immune-suppressant drugs and being on 4 does not help at all. The other 3 should help control the issues that the Humira is for.

After the financial coordinator, we saw the dietician. The worst thing that she said was that Lot should not eat whole wheat anything, ie, pasta, bread, rice. White only, which is bad for us because we love whole wheat bread and spaghetti noodles. The nutrition factor is icing on the cake, we just love how they taste. Lot also needs to give up his chocolate milk, it is too high in calories. He needs to get his BMI down to 35 or less in order to receive a transplant, so from his dry weight (first thing in the morning, after he has drained the fluid and used the bathroom, but before eating), he needs to lose about 10 pounds. They thought it was more, but we had just eaten and he had not had his last drain, which added about 3 pounds to his weight.

Once Lot has received his transplant, he can relax on the renal diet (tons of protein, white starches, fluid restrictions, etc). He will be able to have potassium containing foods, just in moderation (breakfast burritos and hash browns here we come!). She also gave us a website to use when planning meals, davita.com. It is all renal diet approved and after talking to others on the diet, there are good recipes on there.

The last 2 people we saw were the transplant nephrologist and the transplant surgeon. They told us that Lot is a little anemic, but we knew that already. It is really hard to get all the protein that he needs in a day, especially after being told 7 1/2 years ago to go low protein. Lot is currently eating 4-5 servings of lean protein (turkey, fish, chicken), a protein supplement, a renal vitamin and a pro-biotic. We normally go through a dozen eggs in about a week and a half. Now, I buy a dozen and half every week and sometimes need to buy another dozen. Eggs are an easy, fast way for Lot to get protein. We also don't have any meatless meals.


We didn't learn too much from these 2 that we hadn't already heard or that we already know. For 6-8 weeks after the transplant (I have typed that word so much that I now have a hard time typing it), Lot will be under a weight restriction. Lifting Konnor, who is 24 pounds right now, may not be allowed. Lot will also need to be very careful for the rest of his life in getting hit where the new kidney will sit, which is in the left or right upper hip area. After 3 months, he will just need to avoid contact sports where he may get hit there.

One last thing, if we do any traveling where will not be in close driving range and/or phone contact, we have to call the center. When Lot is put on the cadaveric donor list (gotta loose those pounds first), if a kidney becomes available and we are not able to get there in time or not in contact for a few hours, the kidney will go to someone else. The wait time is about 2 years for someone with type B blood, so it is imperative  that we find a living donor and as fast as we can.

We will know more in a week and a half when we get the results back from Utah about the 14 vials of blood and urine sample taken on the 22nd.

Living Donor Process

We received a ton of information yesterday. We have done some research so it was not as overwhelming as it could have been. Because there is so much information, I will be splitting it up into a few posts. I thought I would start with the one that all of you really want to read it about, the living donation process, which is long and more involved that the process is for Lot.

First and foremost, the donor has to be very healthy and they prefer between the ages of 20 and 60. There are quite a few conditions that will exclude you from being a donor:

• NO high blood pressure
• NO diabetes
• NO heart problems
• NO cancer, even if it is in remission
• NO frequent infections (UTI's, ulcers, etc.)
• NO kidney stones
• NO smoking, drugs, or alcohol use
• Must be psychologically stable
• Have a BMI less than 32

You will not be able to participate in any high risk behaviors after the donation (BASE jumping, sky diving, etc). This is due to the fact that when there is a traumatic injury to your body, no matter where it is, the kidneys are the 1st to shut down. With only one kidney, the risk that you will have to go on dialysis for kidney failure is just too great a risk to make for an adrenaline rush. But don't worry, Lot will be under the same restrictions and more post transplant. He should avoid high contact sports where he could get hit in the hip area as that is where the transplanted kidney will sit.

There are 5 steps to becoming a viable kidney donor.

First, you will need to call our transplant services donor assistant. She will do an initial screening over the phone that should take about 20 minutes. She will give you more information during this call on how to  donate the blood for a kidney function test and blood pressure checks (3) by your doctor. These results will be sent to the donor assistant. If all these tests come out well, you move to the second step.

Second, there will be quite a few labs that will have to be preformed. There will be vials and vials of blood taken (Lot had 14 taken yesterday), which includes a creatine (kidney function) test a 24 hour urine analysis (you collect your pee in a container than needs to be refrigerated for 24 hours).

The third step is the determining factor if you can donate a kidney to Lot. This is where they do the authorization for compatibility tests.You have to have a B or O blood type with low anti-bodies that match Lot's. This test takes 2 weeks to get the results back, so if you are serious about donating, you CAN NOT drag your feet. As soon as a potential match is found, everyone else that wants to donate is put on hold until the 1st person is cleared or denied for donation.

Fourth, the potential donor goes to InterMountain Medical Center and has 2 days of tests and talking to everyone on the transplant team (6-7 people). The first day is what we did yesterday with talking to the team to make sure we are ready for a transplant and what to expect before, during, and after as well as more blood drawn. The second day is more tests, heart stress tests, CAT scans, ultrasounds, etc. Just a ton of tests. You will get to break for lunch and the hospital has a very big, very good cafeteria. It is not the stereotypical bad hospital food. They even have an ice cream bar with Farr's ice cream.

The last step is the donation itself. Once you have been declared a match, we are notified that there is a live donor and the surgery will be scheduled during regular hours. There is a risk that the surgery will get bumped for any emergency surgeries or cadaveric donor transplants. I am really hoping that this does not happen as that would be a wasted trip to Utah for us and the donor.

This process takes 3-4 months if everything goes smoothly. Lot needs to get to 107-109 kilos before he can be put on the cadaveric donor list and have a transplant. He is at 115 right now. Unfortunately, he has to give up his love for chocolate milk and whole wheat pasta and bread. He has to have white bread, pasta and rice. Which means we all will be eating that which is a major bummer because we love whole wheat pasta and brown rice more than the white.

I guess I should also state that there is no cost to the donor. Our insurance, along with Inter Mountain Medical Center, pick up the costs. I am not for sure about the first stage of testing, but everything after that is covered. You will have to pay for travel, food, and lodging to and from Utah though.

Now, if you are still with me through all of that, if you would like to begin the process of being tested, please contact us through email, calls, or texts and we will get you the number of our transplant services donor assistant and she can walk you through the process of what you will need to do. You will become very familiar with her as you will be running everything though her first.

A line keeps running through my head from The Hunger Games: "May the odds be ever in your favor."If all goes smooth, by the end of the year, our roller coaster ride will come to an end and we can hop on the smooth tunnel of love ride and sail off with only a small ripple in the water every now and then.

Walkers Everywhere!!

It is official! Konnor is now walking! It has taken me so long to upload a decent video that Konnor now does not need a wall, chair, pant legs, etc to pull himself up. He can do it by himself in the middle of the floor. He walks more than crawls now and he has only been walking for 2 weeks. He loves to take a drink with him on his walks as well as anything that gets stuck on his feet (a cheese wrapper and a small cup are today's items of choice).

But enough reading on your part, here is a short video of what you want to see. Enjoy!

Konnor's 1st Birthday!!!

**Update (May 2, 11 am) We just got back from Konnor's doctor appointment and he is in the 77th percentile for weight and 64th for height. He is growing and developing great. We did have a concern with his dirty diapers and came out with the diagnosis of lactose intolerance:( I guess it makes sense since I was lactose intolerant when I was pregnant with him. I may just start buying almond milk for everyone so that I don't have to buy 3 kinds of milk every week. Konnor will need to get his fat, that he would otherwise get from whole milk, from another source.

**There is also a picture of the dinosaur cupcakes at the bottom.

One year ago tonight, I was laying in the hospital, trying to sleep. Konnor was safely tucked in his bassinet and only a few hours old. He weighed in at 8lbs 15oz and 21 inches long. Tomorrow, we go in for his 1 year appointment. The year has flown by. He is on the verge of walking unassisted, says mom, dad, and hi. He loves to explore and shake everything. He gets very upset if he is not allowed to go outside. Baths are also not high on his list of favorites. He eats everything put in front of him and loves to drink from his sippy cups. He hates when we are not eating the same thing he is. 2 haircuts are under his belt, which is ever expanding. He is currently in 18-24 month clothes and wears a size 5-51/2 shoe. His favorite song is the Star Wars theme song (although he will dance to just about anything). He loves to tear apart Drake's Lego's and dump all of them out and crawl through them.

Konnor is fairly easy to please and loves to laugh, giggle, and smile. He is a mover when he sleeps and we love to go and peek in on him before we go to bed to see what new/funny position he is in. Unloading the dishwasher (whether the dishes are clean or dirty) is a favorite pastime of his. Peek-a-Boo is still a favorite game. His eyes are still a very pretty shade of blue with a light blue halo around the iris's.

Konnor is a very easy going baby and usually rolls with whatever we have to do. He brings so much joy to us and our house. It has been a whirlwind year and as hectic as it was at times, Konnor was always the bright spot in the tough times. We are so thankful that we have been intrusted with his care while he is on this earth. We are excited to see what the next year brings with Konnor Grayson!

We had a small party for Konnor tonight and remembered to take pictures!!

Konnor seems to know exactly what to do with his jumbo cupcake:) He had enough frosting on his face that we had a hard time seeing if he was smiling or not.

He is such a mover that so many of our pictures of Konnor are blurry:)

Nope! Not road rash! That is what a 1 year old can do to a red velvet cupcake in about 2 minutes. Oh, and the frosting was a marshmallow frosting, so he was extra sticky.

Cake boogers:)

As much as he hates to have his hair washed, I just had to do it. He rubbed cake and frosting all over on the left side of his head. He was also Two-Face for a little while. The right side of his face was fairly clean, but it was a totally different story on the left:)

He loves to chase and bite balls, and now he has 2 of his own so Chloe won't get mad that her big blue ball is all slobbery.

Most of his loot:) Konnor pushes around everything he can that helps him to walk, so we decided that he needed things (that were not chairs or a doll stroller) to do that with. Grandma and Grandpa got him the rideon/push train that he has yet to play with because Drake and Chloe seem to think that baby toys are more fun than all of their stuff.

Oh, his cake! I made a red velvet (and really need to get my brother's recipe as the two I used were not nearly as good as his). I made a giant cupcake for Konnor and had regular cupcakes and a layered 8 inch cake as well. The cupcakes had big green triangle sprinkles for spikes and a pick that had a dinosaur head on them. The frosting was a light yellow. So, we had yellow and green dinosaur cupcakes:) I will try to take a picture of them before the rest get eaten tomorrow, but in the mean time, here is a screen shot of the kit that I used. I found it at Zurchers.

 

I almost bought this kit:

But I really liked the dinosaurs.