Tough Mudder

A bunch of Jared's friends teamed up to run the Tough Mudder to support him and help with fundraising. Jared ended up in the hospital that weekend and was unable to go watch them. I took the kids and went to show our appreciation. It was a COLD day in October. I quickly realized I should have left my two littlest ones with a sitter. They survived though and thanks to Sydney for staying with Sami at the starting line so I could walk the course and get some photos.

It was amazing to watch. I felt so humbled watching these men and women go through the obstacles. I know Jared really wanted to be there. It was an amazing experience, and we are so grateful for those that participated and for the loving support of all our friends and family. 

Team Mad Dog, Tough Mudder Ocotber 2012

Me

First I should give an update...well not much has changed. Still waiting. Jared's MELD score hasn't changed and he still doesn't feel well most of the time. I wish I had some progress to share but unfortunately I don't.

On another note, I just wanted to ramble for a moment.

As I was thinking about the list I made of things I wanted to get done today it crossed my mind that I should be grateful for my health. Now I am not the most healthy person, I eat my fair share of junk food and exercise is sporadic if even existent at all. I have my aches and pains (who doesn't) but I think I am generally in good health. I know many people who suffer from migraines and other things that hinder their daily activities, and while I can't do things like run a marathon or play sports, thanks to my knees, I can go about my days and accomplish many things without worrying about how I am going to feel that day. I wish those who had medical problems would be able to get well and feel well on a daily basis. Especially Jared who is waiting for his liver transplant and doesn't feel well most of the time, but still goes to work each day and comes home to our family chaos :) I am grateful for all he does for our family and I hope he gets his transplant soon. And in the meantime I am grateful for my health and that, besides my scattered brain, I can be here for my family every day.

Love this

I love this!
I want these for me and the kids :) Create awareness!

Officially on the "list"

I forgot to post this but a few weeks ago jared was officially put on the list for a liver transplant. Yay! His MELD score is still a 15 and he will be checked regularly to monitor his score. We have been asked by several people how long he will have to wait and the only answer we have is, "we don't know" it all depends on how quickly his MELD score rises. The transplant center is currently transplanting patients with a MELD in the upper 20's and low 30's....so we have a while.

Our first overnight hospital stay....

Well we had our first overnight hospital stay last week. Jared went to the ER because he had severe abdominal pains and he was vomiting. They admitted him and did a bunch of tests. All the tests came back OK, however, we haven't heard back to see if they found anything on the MRI. I think I have already voiced my frustration with trying to get test results back from doctors. They did the MRI right before they released him and said the Dr. Should have the results when he did rounds the next morning, well we weren't there during rounds so I guess we have to wait until they decide they have time to call us. I have tried calling but just get transferred around to different people and don't get any answers, grrrrrr!

Well at least we had a nice view from up there on the 9th floor :)

Jared's Dad got his new kidney.

Jared's dad has been on the list for a kidney transplant for a little over a year and he finally got his new kidney earlier this week. Here is his wonderful story.

We visited Russell the day after his surgery, he did very well and is expected to go home real soon. It was surreal being there on the 10th floor at IMC, knowing we will be there ourselves in the "hopefully near" future. A liver transplant is much more extensive than a kidney transplant so Jared will be there a lot longer than Russell and Debbie, but they have an awesome transplant team so I know he will be in good hands.

Oops

I accidentally deleted my last post. Not important enough to rewrite it so I will move on. We had a clinic appointment yesterday, everything went well and Sue (our transplant coordinator and advocate) will present our case to the board (the team of transplant doctors and specialists) for approval and listing. This is just how they do it, they know he needs the transplant but they have to follow protocol. We should be hearing from Sue soon to find out how it went and if there is any other tests they need before they go ahead with listing. Jared has a pretty straight forward case so she doesn't anticipate any issues.

That's all for now :)

Moving Forward

We are finally moving forward. We got word today that the insurance company has agreed to pay for the transplant surgeon to remove Jared's gall bladder, that is good news. Also the ascites has gotten bad enough that they are going to schedule a paracentesis and drain the fluid. That is really good news because it has been making him miserable. So with the gall bladder and the ascities taken care of he should feel much better. It is looking like both procedures will take place within the next couple of weeks. I will post when we know dates. Along with all that we are moving forward with the transplant work up so he can finally get listed. There are several tests that have to be completed like lots of labs, chest x-ray, echo-cardiogram, to name a few. These tests will hopefully be completed in the next couple of weeks as well. So It looks like we will be spending a fair amount of time at the hospital in the coming weeks. So excited :)

Update- the paracentesis is scheduled for tomorrow, 2/10/2012

UPDATE: Jared will not be having his gallbladder removed before the transplant. The risks are too high, and being that he doesn't have gall stones they have decided it is best not to put him through a surgery and complicate things.

More Cookbooks!!

We received the second round of cookbooks and they are available for sale. We got the first shipment at the beginning of December and we sold out in just a few weeks. It was awesome, we had no idea we would be able to sell them so quickly. Everyone was so supportive. We have a new flier as well as we got a donation account set up so people could donate if the wish. For anyone that would like to make a donation they can do so at any Mountain America Credit Union to the "Jared Maynes Transplant Fund".

Now the Gall Bladder???

Looks like Jared may be having gall bladder surgery too. He would loose his gall bladder in the transplant surgery anyway, however it is causing him a lot of pain, so they are looking to remove it now. The risks are high especially because his platelets are low so his blood will not clot as it should. We are dealing with the insurance company because they don't want to pay the transplant surgeon to do a gall bladder removal, but we saw a trauma surgeon and he said he would not touch it because the risks are too high with him being a transplant candidate. He recommends a transplant surgeon do it. SO the transplant team and trauma surgeons are going to bat with the insurance company to try to get the procedure covered with the right surgeon. It has been an ordeal but hopefully they will be able to work it out soon so we can get it done and he can feel better while waiting for the transplant.

Seeing the signs

The signs of liver disease are surfacing. Ascites is really beginning to bother him. He is really uncomfortable and the leg cramps continue. Something new is the sores showing up on different areas of his skin. It resembles eczema and is itchy and irritating. We thought he may have esophageal varices but the ER DR. said differently so we will see I guess.

15 MELD

After a pointless five hour visit to the ER last week we got labs done and found out Jared's MELD has reached 15! The magic number when they officially put your name on the transplant list. Well it is not that simple, they will discus Jared's progression in the transplant team meeting that they have every Thursday. I hope to be hearing from them soon....

So, What is this MELD score?
Model for End Stage Liver Disease
-Predictor of mortality while waiting for a transplant
-The MELD score is calculated by a formula that uses 3 routine lab results
     1.Bilirubin, measure how effectively the liver excretes bile.
     2. INR-Prothrombin time, which measures the livers ability to make blood clotting factors
     3. Creatinine, which measures kidney function. Impaired kidney function is often associated                                with severe liver disease.
MELD scores range from 6-40, 40 being the most ill. MELD scores can change on a daily basis or they may remain stable for long periods of time.

To be placed on the transplant list for a liver one must have a MELD score of at least 15. In August of 2011, when we found out Jared would need a transplant his MELD was 10. In late November 2011 he was tested again and at that time he was at 14. On January 25, 2012 Jared's MELD score has reached 15!