I don't like coming up with a title for each post...

Jared getting dialysis. Marcus wants his chair right up next to the bed. :)❤️

Jared talking to Jeff Oliver (his boss) this morning.

10/25/14

Jared is #1 on the list. There was even an offer for a liver last night, but the organ wasn't healthy. Jared is doing good and they are continuing to get him as healthy and stable as possible for surgery. He is doing dialysis again today. They say once he gets his new liver his kidneys will begin to recover. They are pretty angry right now.

We met a fellow Alpha that received his transplant earlier this year. Paul Owen came to visit us. It was good to meet him, he is kind and it was encouraging to talk to someone that's been through it all and is doing great. 

Marcus got here a few min. ago. Jared was really happy to see him. Marcus looked like he was having a hard time so we went for a walk so I could talk to him. He said, "I'm about to cry with Joy. I didn't think this was going to happen for a while." He is so sweet and caring. The other kids should be here soon to see Jared. He hasn't seen them since we got here.

Jared loves visitors so if anyone wants to come see him text me and  let me know who you are :) and I'll give you his room number.  801-921-3676

Wasn't expecting this quite yet...

We are at the hsopital again. We got here yesterday (thrusday) at 5am. Jared had a fever and was in a lot of pain. He was sick enough that they admitted him. He's got an infection in his belly again, his blood pressure keeps dropping, he is dehydrated, and his hematocrit has been really low. He has received 3 units of blood so far. Yesterday his MELD score came back at 31 which is great, but the Dr. said 35 would be better. Jared has blood type O which is in high demand so unfortunately that makes his wait time longer.

So... This morning the Dr. came in and said his MELD jumped up to 40!!! I think we were all pretty shocked to hear that. I wasn't expecting this quit yet... they say he could receive offers for a new liver this weekend. There are a lot of factors though, they have to make sure the organ is a good match, fit and healthy, so it could be 1 to 2 weeks before he get his transplant. His kidneys are shutting down, that is what spiked his MELD.  They are doing dialysis for his angry kidneys :) and working to get him stable enough for surgery. Pretty sure he/we won't be going home anytime soon...

Its crazy his MELD jumped 14 points in two days.
I'll try to keep updating when I can.

It's getting to the really hard part.

The years of waiting have been miserable to say the least. As time goes on, with every new change I find myself saying, Wow, this is the worst yet.)

Last month Jared had to have an impacted wisdom tooth removed. There was a marked decline in his health and confusion afterward. After the surgery he was so confused he could not even carry on a conversation. We ended up in the ER twice that weekend. The pain medication he was taking for his tooth surgery was causing him a lot of confusion. His liver can't process it, so of course it was going into the bloodstream and getting to his brain. After the second visit to the ER the doctors finally said, "absolutely no more pain meds." They upped his lactulose to try to clear it out of his system. He became dehydrated from that and we ended up at the ER again. For the next couple of weeks his confusion was still really bad. We are managing it a bit better now. We're trying to get the right dose of the lactulose to keep him comfortable but also to help him be able to think clearly. His Dr. says it's always a balancing act trying to find the right dosage for each patient. Each day is different, some are better than others. Sometimes he can think okay and other times are really difficult. Days, times and numbers are really hard for him to keep straight. He has difficulty using his phone and the remote control and even having conversations on the days when it's a little worse.

Jared has finally gone on an LOA and will not be going back to work until after transplant. We are trying to figure things out with his work and looking into what needs to be done so his benefits can continue when his short-term disability runs out. We may have to apply for Social Security disability if we aren't able to work things out with his employer. He will receive full pay and benefits through February 24, 2015. We're hoping to be able to continue it past then, but it's all a waiting game to see if we can get him approved for long-term disability in time.

His MELD score is 26 still. I think we are past the point of him going back downward. I think he's going to continue to progress from here. His doctor even said he thinks that he could end up hospitalized by the end of this year. By that he means he will be hospitalized until he gets his transplant. He did also say that if things continue to progress the way they have been over the last several months, he thinks Jared will be transplanted within a year. Each day is harder and I hope soon we will be able to see the light at the end of the tunnel. One thing that has been helping me is something my mom said, and I keep reminding myself, "One day this will all just be a bad memory." That may seem negative but to me it just means that this will not go on forever and we will be able to look back one day and say, "That really sucked. I'm glad it's over."

10-13-14

Got Labs done today. MELD is 26. The coordinator called me shortly after and said Jared's hematocrit is really low so he has to have a blood transfusion tomorrow. He is not doing so good lately. His HE is is crazy. He is so confused all the time. He can't even work his phone or the TV remote. He has been in an LOA from work for a couple weeks. He's supposed to return on the 20th. I'm afraid he may not be able to go back. We go to the transplant center tomorrow for a clinic appointment and I'm hoping they will be able to help him feel and think better.

Another day in the hospital

We went to the hospital this morning after Jared being in terrible pain most of the night. He has had 7 liters of fluid draind off his belly in the last week. They ended up having to replace the stent in his liver. The blood wasn't flowing through causing him all the pain and swelling. We got home at about 7pm and he slep the rest of the evening. Hopefully he feels better tomorrow.

They did labs while he was there and his MELD is still 23.

Dr. doing the ultrasound to check on his organs and the fluid in his belly.

Yard sales are a LOT or work.

We had a few yard sale fundraisers this summer. They were a lot of work and fun at the same time. I want to thank Jessica Schwendiman and my Eagle Mountain neighborhood for putting so much work into the yard sale in Eagle Mountain.

A video my friend made.

update

As you can see I am terrible at updating. I am an over-thinker, so when I think about writing an update I have in my mind that it will take me a while, thus I never get around to it.

I don't even know what to title this post. We have had quite the summer and I'm not quite sure where to begin. I choke up as I think of what I'm going to write. I will start of by saying: I hope some day I am able to pay it forward and help others like we have been helped since all this started. I am overwhelmed at the outpouring of love and support we have received from friends, family, acquaintances and even strangers. I often worry about how we will be able to cover our medical expenses. When I said we have support from strangers I really meant it. People that know someone who knows us have come forward to help. To EVERYONE, From the bottom of my heart, Thank You.

Family and transplant update:

I'll start with an update on Jared. His MELD is a 23 now. His encephalopathy comes and goes and the Doctors have recommended that he not drive anymore for safety sake. He is still able to go to work so that is good, but now we spend nearly twice as much in gas with me driving him to and from work. His parents have been helping by bringing him home some days so that is super nice. Jared gets terrible, crippling muscle cramps everywhere in his body, to a point where is is difficult to grasp anything in his finders and even walk. His gallbladder is acting up again which is miserable and they can't do anything about it until transplant. It causes him a lot of pain and nausea so it sucks there is nothing they can do. The effects of this disease are physically and emotionally draining. It's hard for us see him so miserable. I wish I had some better news to update on him. Unfortunately we still have no idea how much longer he has to wait.

During one of Jared's hospital stays

After Jared's TIPS procedure

For those of you that don't know, our 5 year old daughter has a disease called XLH which causes bowing of the legs, slowed growth, and problems with the teeth. She takes medications several times a day and at some point she will have to have surgery on her right leg. We don't know when that will be. We are waiting to give the medications time to correct as much as they can. She visits the dentist often and gets spontaneous abscesses. When this happens, most often the tooth eventually has to be extracted. All I can say about her disease is, at least it is not life threatening. She will take medications for the rest of her life and hopefully with the meds and surgery her legs will straighten out.

Top left: sad girl after having tooth pulled
Bottom left: 1st day of kindergarten 2014
Right: Sami's legs 4 years old

And last but not least...
This past March I went for am MRI to have
something in my inner ear canal checked. While reviewing the MRI my doctor found a brain tumor about the size of a golf ball on the right side of my brain. It's called a meningeoma and it is non cancerous, phew! It wasn't causing any swelling or other problems yet so we decided it was best to have it removed so it didn't continue to grow and cause problems. So on June 24th 2014 I went in for brain surgery. The first week of recovery was a bit rough but I did well and was back to normal within a few weeks.

40 staples in my head after tumor removal, ouch!

Among all the things going on with our family nothing else could possibly go wrong, oh wait, lets throw one more thing in there. This may not seem like a very big deal, but it is to me, and with all the medical costs we have and continue to accrue, what's another 4 grand??! Shortly after we found out about my brain tumor I ended up in the ER with my jaw so swollen I didn't even look like myself. After doing three days or IV antibiotics I went to the dentist to find the culprit of my infection. All four of my bottom front teeth were infected. The infection had literally eaten away the roots of the teeth and part of the jawbone. I had to have the teeth removed and now have a bridge, that hasn't done much but give me trouble so far. Hopefully I will be able to get implants someday. And to top that off I have another tooth giving me the same problems and have an appointment next wee to have it checked. This is just not normal, there are no cavities on any of the teeth that are getting the abscesses. I am beginning to think I may have the same disease as our daughter just not causing the bowing in the legs.

With all that, and my unexplained anemia, I've kinda had enough. I am tired all the time and have no energy.

How can any one person deal with so much?? I actually am very good at dealing with stress, but I have to admit the last several months have about done me in. Watching my husbands health deteriorate and dealing with my own health I wonder how much more we can take, and when will it end?.. If it was just me that had the health issues and not Jared too I think it would be a lot easier for me to deal with. We literally don't go more than a week without an appointment to a doctor, dentist or hospital. It's getting really old.

Ok, I'm going to stop there. That pretty much sums up our last six months. It's time for me to end my pity party and go to bed :)

update

Sorry it has been a while since I updated. The days get monotonous when there isn't much change so I let time get away from me. Jareds MELD is holding at 21 lately. He is realy jaundice and the encephalopathy is getting worse. I fear the time will come soon when he is no longer able to drive himself to his job which is 45 min away. We are plugging along even though it get harder every day.

We have some things comming up that I sm going to post about, so stay tuned. Hopefully I'll get it posted tonight. I have to sit at my daughters baseball practice for an hour and a half so it'll give me something to do :)

Another Hospital stay

On January 14th We went for an appoint at the transplant clinic because Jared had been having pain and swelling. We met Dr. Charlton for the first time who is the new head of the liver team. It was a short visit and ended with us heading up to a hospital room for a 3 night stay. Jared ended up having another TIPS revision. Blood wasn't flowing very well which was causing him to swell up. They drained close to 30 liters of fluid off him in those three days. Crazy. He was feeling much better after the TIPS revision. His MELD is hovering at 20 so he still has a ways to go.
Thanks for all the prayers and support.

A glimpse into my head.

   As the months go on it gets harder and harder. I wish I could say I know how Jared feels but I don't. How could I? I am going through it differently than he is, as the caregiver. I do know I would be terrified and often feel like giving up. He is strong, much more so than me. I sit and watch him not be able to stay awake after he gets home from work, and see what his body is going through. The constant fatigue, swelling and pain, severe muscle cramping, the yellowing of his skin and eyes, encephalopathy, weight loss and muscle wasting... He doesn't have the energy or strength to do many of the things he enjoys doing. I wish there was something I could do to make his pain go away.
   I apologize for my ramblings but I think it helps to share feelings and not just facts. One reason I wanted to write this is because I think people just don't understand. Now I'm not looking for pity or for anyone to feel sorry for me or Jared, and actually, If I get those things I would probably shut you out, so don't give it.
   I have come to understand the very real outcomes that are possible. I am trying to accept what the future could hold for Jared, for me, and for the kids. This is difficult to write because I am not one to share or show my feelings, especially in person. So please don't come to me expecting a heart to heart, or for me to pour out my soul cause it won't happen. If you bring it up in person I will probably make light of it or change the subject. It's not personal its just how I am. Oh, and if you leave me a long sappy message in regards to this I will probably read it saying to myself, "blah, blah, blah" just so ya know.  :)
   I want people to realize the very real possibilities so they can maybe understand a little better of what we are going through. Waiting, wondering what the coming years are going to hold is hard. Three years ago I thought like I believe most people do. "A liver will come available that is a match relatively soon, Jared will get his transplant and everyone will live happily ever after." Ok not exactly, but pretty close. I guess what I just don't think people understand is that the worst possible outcome of liver failure is a very real possibility. I have met several people who have lost loved ones because their liver finally gave up and there was no donor available in time, and I'm not talking way back when, but just in the last few months. Fear, hope, desire, anxiety, are things I feel daily. If the gift of life does come we will be eternally grateful, Jared will have a second chance at life. But with it comes different fears, trials and hardships, lifelong ones. Ones that will be very hard for him. We hope and pray that his body will receive the new organ and accept it, and that his body will return to normal. He will have a lifetime of medications, a small price to pay for a new life.
  All the uncertainty makes day to day life emotionally draining.  I try to keep my mind busy by reading pointless material on the web, listening to music or shutting it off, creating distractions and doing/thinking about projects around my house. I am handling things the best I know how. I have stopped telling people we are doing good when they ask, cause things aren't good. We are ok and will go on no matter what happens. If you ask how I'm doing and I say ok then I mean just that. I don't like to get emotional, when I do, I try to think of something annoying to me, or stop whatever I'm doing and move onto something else...Huh I guess that could be why I have a hard time completing anything lol. Anyway, I'm done now so thanks for reading, and I hope you have a better understanding of what we are going through.

November 2013

Jared has been doing OK since his last hospital stay, relatively speaking of course. He just had his MELD checked earlier this week and we should know what it is soon. It's been nice that he hasn't had to be drained anymore but he is sure looking pretty skinny lately, and his skin and eyes are varying shades of yellow from day to day. His next two months are the busiest time at work and I'm sure it is going to be rough. Let's hope for a peaceful holiday season.

Still here

Today is Wednesday. Jared is still in the hospital. The view on this side isn't nearly as pretty :-( I feel like we have been demoted down here to the 8th floor lol. Jared's sister told me when we have a favorite location inside the hospital we have been here too much. I have to agree :-) I guess they were full up on the transplant floor so that's why we got stuck down here. I suppose the staff is forgiven.

Ok, so back to Jared. He has a bacterial infection, his white blood count was 3000. The doctor said they probably nicked his bowel again during one of the recent paracentesises. His fever keeps creeping back up and he still has abdominal pain. They have him on antibiotics and say he will probably get to go home tomorrow. 

Jared's MELD is at 22 now. Yea, let's hope it continues to go up. The faster it rises the sooner he gets transplanted! 

Lovely scenery here ;-)

And we're back at the hospital again.....

Jared went back to work today after having the TIPS fixed last Friday. Well I got a call from him at about 1:30 this afternoon saying he was headed to the ER. Good grief, they should just put us up in a hotel next door. Jared got really sick at work. He was really pale, had a high fever and severe abdominal pain and vomiting and shivering like crazy. His boss drove him to the ER. I waited for Sydney to get home from school and then I headed out there. They had given him some morphine for the pain and covered him up in warm blankets. They drew blood and got some fluid from his abdomen to check for infection. Because of the high fever they admitted him. No test results came back tonight so we will have to wait until tomorrow to see what's going on. I left him in the good hands on the 8th floor.....wait that's not right...what happened to us getting to stay on the 10th floor?? I liked it up there :( "sigh" Anyway, I came home to be with the kids and to get them off to school in the morning. I'll be headed back up tomorrow to spend the day with him.

Just kidding....

Coincidence?? So right after Jared cut back on his lasics he quickly began to fill back up with ascities again. At his last appointment the doctor said if the TIPS is working then he wouldn't need them anymore. "sigh"  So I called his coordinator and told her what happened.They sent him for an ultrasound where they found that the blood flow through the shunt was really slow, so last week Jared had to go back to Dr. Blatter at the heart lung center for what they called a TIPS revision. He was filling up with ascities again rather quickly.  They needed to go in to see what the problem was. They went in the same way as they did the first time and they found that the shunt had a kink in it, so they put another shunt inside the one that was already there to stabilize it. Besides waiting for hours past his scheduled time, the revision went pretty quick. It probably took just over an hour and they didn't have to put him under anesthesia to do it.  We sat in the recovery room for about 45 minutes and then they let him go home. He is tired and a little sore still but so far everything is going ok with it.
Wondering if he really will get to go off his lasics and if it was just a freak coincidence that it happened at the same time he cut back. :) Time will tell I guess.

No more lasics?

Jared had his routine appointment at the transplant center yesterday. His MELD dropped a little, down to 18 :( oh well, it's going to happen. The doctor said he could cut back on his lasics since the TIPS is working, and he also said he can quit taking the antibiotics he has been taking since last October when there was a complication after a paracentesis. Yea, he hates having to take so many medications. It will be awesome to scale it back.

MELD 20

Woohoooo Jared got a MELD score of 20 when he had his TIPS done. That is the highest it has been. They will now re-score him monthly instead of every three months. Lets hope this is the beginning of an upward climb.

Can you guess where we've been?

 I wonder how many times I'll get to post this view from up here on the 10th floor? :-)

 At least this time it was a planed visit.

With the increasing fluid retention (ascities) we decided to go ahead with the TIPS.The doctors said it needed to be done. Jared was having to be drained every few days and they didn't want to keep doing it that often. There are too many risks, one of which we experienced last October.

We decided to do the Tips procedure and met with the doctor on a Monday. We were given the option to have it done in that Thursday but with Jared's work schedule and family coming in town we decided to wait about a week and a half. The next day Jared was feeling really miserable again, so bad that he wanted to go ahead with it as soon as possible. So I contacted the doctor and we scheduled it for that Thursday.

The procedure was done in the Heart & Lung center at IMC. The doctor went in through the jugular vein and down to the portal vein in the liver. They placed a shunt from the portal vein to the hepatic vein to decrease the pressure in the portal vein. So most of the blood now bypasses the liver and goes straight to the heart. The procedure took almost 3 hours which is longer than normal. The doctor said that because Jared's organs are so swollen it was difficult to find the portal vein. Once they got to it, it went pretty fast, and they said everything went well. After Jared woke up they wheeled him up to the 10th floor where he would spend the night.

Jared was pretty out of it for the rest of the day and evening. I couldn't tell if it was because of the pain medications or the effects of the TIPS which causes increased encephalopathy. The pain meds kind of mad him loopy too. He ended up staying two nights because he ran a slight fever the second day and they wanted to watch him in case of any possible infection.

We went home where he could rest for the next week or so before going back to work. The encephalopathy got worse. He was merging conversations and not making a whole lot of sense when he would try to carry on a conversation. I began to be worried that he would not be able to drive again or go back to work. This lasted about a week. Then slowly the medications began to help and he could think clearly again. It was a huge relief. He began to feel better and wasn't filling up with fluid anymore. Yay!! The doctor said he may still have to be drained every few months or so but not near as often as before.


*UPDATE*
 The TIPS has really helped Jared be more comfortable. He has been feeling pretty good lately, relatively speaking :)

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.