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.

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 :)