GoFundMe

Some people have asked or mentioned that we should have a way for people to donate online to help us with the overwhelming medical bills that continue to add up. Someone told me about this site so I checked it out. It liked it so I went ahead and set it up. Here is the link http://www.gofundme.com/3apl6o. Please feel free to share it.
We have had financial trials before, but this has been the hardest to try to keep up with. we literally have thousands of dollars in medical bills we are trying to pay and the amount rises monthly. If anyone would like to donate any amount is helpful and greatly appreciated. Thanks for all the love and support.

TIPS

At Jared's last clinic appointment the doctor mentioned a procedure that may be in Jared's future. He continues to have fluid accumulate in his abdomen and they have to keep draining it off. There are always risks to having the fluid drained, which he experienced last October. Since the diuretics are not keeping the fluid off enough they may consider doing a TIPS. It is where they go in and place a stent to create new connections between two blood vessels in the liver. There are always risks with any procedure. The worst risk with this one is; because he already has a bad liver it could cause him to go into complete liver failure. We don't necessarily want that because there is always the possibility they wouldn't be able to find him a new liver in time. I don't know what the doctors will decide at this point. It all depends on the acities that continues to build up.

Click here to read more information about TIPS.

Passing time

It's been a year and a half since Jared was officially put on the list. Passing time is hard and discouraging. I can't imagine what it is like for him. To be sick all the time, to never feel well, to have no energy and always be in pain. His face and arms and legs have become very thin too. His abdomen is always swollen from the ascites, which makes him very uncomfortable. His MELD score still hovers in the 16 or 17 range. He is still able to go to work which I am grateful for; I know it is hard for him. I know the time will come for him to get his transplant but waiting is hard.

Another hospital stay

I should have written about this months ago but I got lazy and kept putting off.  It happened last October (2012).

Jared ended up in the hospital again after a paracentesis (procedure to drain fluid off his abdomen). During the procedure they punctured his bowel allowing bacteria to seep into a sterile area. We went home after the procedure and he quickly became ill. He had a high fever and was in a lot of pain. We went to the ER where he was admitted. The white blood cell count was over 90,000 and should have been 0, so he was pretty sick. They did lots of tests and put him on antibiotics. He was there for 4 days before they released him. During his hospital stay his MELD got as high as 19. It has now dropped to 16 and stays in the 15 to 17 range most of the time.

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!

The Cookbooks

Family and friends are jumping in to help. They put together this wonderful cookbook to sell to help with the cost of Jared's liver transplant. They gathered 650 recipes and typed each one up. Sent them off for printing and we ended up with beautiful cookbook full of fabulous recipes from all our family and friends. Special thanks goes to those that helped type in recipes and proofread each one...twice. Also, there is much gratitude to those who submitted recipes and who are in full swing selling cookbooks so fast we will likely be sending for a second shipment soon, and the first one arrived only a day ago. You all know who you are. THANK YOU!

Cookbooks are $14 each + $3 shipping if you live outside of the Salt Lake City, Utah area.
Please contact Paulette if you would like to order a book, paulemay@msn.com Thank You!

Miles away????

Time for an update. So Jared had his apt. with the hepatologist yesterday. And we left feeling quite discouraged. The Dr. said he thinks the pains Jared has been having are his gallbladder and is doing some tests and looking at removing it now if it needs to be. He went over his chart and asked a bunch of lame questions...seriously, LOL. To sum it up he told us Jared is miles away from Transplant...."miles" what the heck does that mean?? The appt. took 2 1/2 hours and what we took from it was it is going to be a long time before they even consider listing him, and he scheduled our next clinic appt. for next May. I was annoyed and we were both a little upset when we left. Well I decided I wanted more answers so I called the transplant coordinator this morning. Long story short. Jared's MELD score jumped from a 10 last August to a 14 as of yesterday. They will list him at a 15. She said with a 14 they recheck the MELD every three months unless he gets really sick, then we can call them and they will check it. Patients usually get the transplant when the MELD reaches somewhere in the 20's. She is going to speak with the Dr. and let me know what the game plan is. So anyway I feel a little better now and I am not thinking it is going to be years away. On another note I am happy to tell everyone the cookbooks have been completed and shipped and should be here by Monday or Tuesday of next week YAY

Waiting

I don't like waiting. It's been about two months now, since we found out Jared needs a liver transplant. He has a "supposedly" rare genetic disorder called Alpha 1 Antitrypsin deficiency. He has the ZZ phenotype and it is destroyed his liver. I guess they call it rare because of the people that have this ZZ phenotype 95% of them have lung problems not liver. Anyway He has to get dental clearance before they will move ahead with putting him on the transplant list. He has 2 dentist appointments left, then we can move along. Well move along to more waiting......

Alpha-1 Antitrypsin Deficiency

Alpha 1 and a liver transplant

Jared is a 34 year old husband and father of four children. He comes from a family of ten siblings. Family is everything to him. Jared has been sick off and on for the last few years. He got really sick in February of 2010 while visiting family in Colorado. He went to the urgent care there and they did numerous tests and CT scans and found his liver and spleen to be much enlarged. The doctors told him and his wife that he may have Lymphoma. After returning home they saw his regular doctor and they did more blood work and CT scans and came to the conclusion that he had a virus called CMV. He seemed to be better after about a month. About the same time the following year he began having the same symptoms again. He went back to the doctor where more tests were given. Tests for the same virus came back negative so he was sent for more blood tests and CT scans. His liver and spleen were again much enlarged and they were told again that Lymphoma was a possibility. Jared was referred to a gastroenterologist who ordered more blood work and a Liver biopsy. Before the results came back the doctor stumbled onto something and immediately sent Jared for more blood tests and a chest x-ray. He found that Jared has a rare genetic disorder called Alpha 1 Antitrypsin deficiency (ZZ gene) and stage four cirrhosis of the liver. The only cure for Alpha 1 and liver disease is a liver transplant. After learning about the disease they had their family tested for it. Two of Jared’s sisters have the same disorder with the ZZ gene but are not showing any signs of liver or lung disease yet. Two of Jared’s children have the SZ genes, which puts them at risk for lung disease. Right now it is just an awareness issue with the children and they are taking precautions to avoid harmful substances that are harmful to the lungs. Right now the main focus is getting Jared a liver transplant. The cost for a liver transplant is about $500,000. While the family does have health insurance it will still be quite a financial burden, we anticipate the out of pocket costs to be approximately 20,000 the year he receives the transplant. The cost of the surgery is only the beginning. Prescription medications following the surgery are $120 per month after insurance pays. There are several medications Jared will have to take for the rest of his life so his body doesn’t reject the new liver. These medications will surpass the family’s annual deductible within the first few months each year.

Alpha 1 (ZZ) leads to emphysema in 95% of people with the disorder, only 5% get liver disease. Alpha 1 is often misdiagnosed for 7 years or more. Many people that have the disorder and have no idea it even exists. Awareness is the key, and a simple blood test is all it takes.

What is Alpha-1?

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes. One defective gene came from their mother and one from their father. There are many types of defective alpha-1 antitrypsin genes. The most common abnormal genes are called S and Z. Normal genes are called M. A person who does not have Alpha-1 will have two M genes (MM). People identified with Alpha-1 most commonly have two Z genes (ZZ). Current evidence suggests that there are about 100,000 people with Alpha-1 (ZZ) in the United States. Another deficient gene combination is SZ, although people with this gene combination are less likely to get lung or liver problems than those with two Z genes.

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a buildup of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

Governor, Gary Herbert of Utah has graciously proclaimed November 2011 as Alpha-1 Awareness Month. This is the 2nd year the Governor has issued a proclamation for the Alpha-1 Community