Serving Time

Clark had been feeling well for quite awhile when he came down with a fever yesterday. I could tell just by looking at him when he came up for breakfast that he didn't feel well. He said he had a really bad headache, his joints ached, he had a slight fever, and felt nauseous at times. He didn't want to tell anyone because he dreaded being admitted again. He had hopes of going home to South Dakota for Easter and the timing of this would not fit in his schedule. When his labs came in he was told to go immediately to the hospital for an infusion. I dropped him off and didn't even make it all the way home when he called to say they were admitting him to the Huntsman and transporting him by ambulance. Clark said that he talked to the EMT's about the game Call of Duty on the ride up. Once there, he walked himself in along side the EMT's and was mistaken for one of them when a nurse asked who they were there to pick up.

Turns out that his CMV had flared up again so they gave him lots of antibodies and several infusions. By the next morning he was feeling fine again and spent the next couple days watching TV and wishing to leave. They had to run several other tests to make sure they were negative and did an ultrasound and X-Ray of his liver. All looked great.

He served his time and four days later he was discharged. Kellen and I went to St. George for Easter and were worried about leaving Clark alone. Many stepped in to help. Of course the Bishop didn't miss a beat. He and his wife brought over meals, called and texted to check in, and even had him over with their family for Easter Supper.

Blood Drive

Nicole with her two kids came down from Wyoming to donate.

The Blood Drive was a huge success. They said that people were lined up all morning long. I over heard one guy say, "This is the real deal. It's like in the movies when there's a disaster and they need blood from everyone." That's how many people were there. The Red Cross started turning people away because they were getting too back up and they ran out of supplies. Dave, along with many others, organized the drive and helped create the award named in Clark's honor that will be given to the ward with the most members to donate.

People Clark has never seen before greeted him like he was a celebrity, jumping up from their seats to shake his hand as soon as they heard his name. Clark was flattered yet overwhelmed as his humility got the best of him.

The award reads: "Clark Kimble was diagnosed with acute liver failure on July 30, 2009. Due to numerous surgeries and ongoing treatment, Clark has received over 300 units of blood or plasma. There are many "Clark Kimbles" in our world today that need this Gift of Life.

Jesus Christ has granted us this life sustaining substance and has spilled his own for the redemption of mankind. Can't we too give a little back to help those who need it the most?

Donate blood to the American Red Cross . . . Give the Gift of Life

This award is given by the Lehi Jordan Stake and the American Red Cross on behalf of Clark Kimble for the most units of blood donated by a single ward."
Click on image to enlarge.

Updates

So it's been awhile. Overall, Clark is doing great. A few exciting updates -

One of the biggest blessings in this whole experience aside from survival of course is that he has been accepted by Medicaid. Clark surpassed his $2 million lifetime maximum long, long ago. The bone marrow transplant is estimated at $500,000 and the total keeps climbing. Thankfully Medicaid is retroactive back to August 2009, and is long-term through November 2011.

Most of the preliminary testing has been done so we thought that once he was approved for Medicaid, that the BMT would soon follow. It's been over three weeks! The Huntsman says they are waiting for approval from Medicaid and hope to hear from them soon. In the meantime, he receives regular infusions of blood and platelets. Susan, Clark's home health nurse comes out every Monday and Thursday to draw labs but Clark can always tell when he needs an infusion without even knowing the numbers. His platelets have fallen down to as low as 3. He gets Petechiae all over, even on his tongue, and recently, a hematoma on his side that was quite painful. He feels so much better when he's tanked up.

Larson Towers has offered that he could come in to "work" if he feels up to it. They are behind on paper work, all of which Clark knows how to do from being crew chief. It's great for Clark because he can get out of the house, be social, productive, and stimulated.

As for how he passes his time - sleeping, playing Xbox, entertaining Willow, attending church and activities, work, sorting through bills and mail, on the phone sorting through bills, at the hospital receiving infusions, and sleeping.

We all have spring fever and are enjoying the few days of warm weather we've had. Especially Clark since he always seems to be cold. He did mention the other day that with the warm weather coming on, and spending more time outside, that means he needs to invest in some sunscreen!

The concert and the blood drive both went well and were a lot of fun. Thank you to all of you who supported us at these events. I'm waiting for pictures, then will post all about it!

Blood Drive

Lehi Jordan River Stake is hosting a blood drive this Saturday, March 13th, from 9-2 at the Stake Center (2300 W 300 S). This will be one of four blood drives to be held throughout this year, each being a contest between the wards for the most member's to donate. A plaque has been created in Clark's honor and will be given to each winning ward, and one to the single's ward for the last blood drive where Anita from Red Cross said the most blood was donated from anywhere she's ever worked. We have seen and continue to see the life saving blood Clark has needed throughout this whole time. Everyone is welcome to donate even if you are not a member of this stake.

Let's break that record!

See you there!

We're on The Zoo

The LiveR Die Charity Concert was noticed by one of Utah's top radio stations, 97.1, under their "Help if you can" section, and was announced on their very popular morning show, "The Morning Zoo."

Cottonmouth Clothing at Concert

Premium Skate Shirts from Utah's own
Cottonmouth Clothing Company

Originally $20
Will be sold at Muse Music at a
discounted price of $5
with all proceeds to benefit Clark.

Check out their designs at www.cottonmouthco.com.

LiveR Die Concert Giveaways!

A local charity, Power in 1,
will be giving away 50 free t-shirts to the first 50 people
at the LiveR Die Concert this Saturday!

Also, they are giving away autographed volleyballs and raffling off a basketball signed by the
BYU basketball team.

If you didn't have enough reasons to go before,
now you sure do!

LiveR Die Charity Concert

Thanks to the generous and thoughtful efforts of our cousin and his friends, a concert has been organized to benefit Clark. Thanks Dustin! Should be a lot of fun! Invite your friends, and tell them to invite their friends. Hope to see you all there.

Saturday, March 6, 2010

8:00pm - 11:00pm

Muse Music

151 North University Ave
Provo, UT VIEW MAP

PERFORMING:
-Nate Baldwin and the Sound
-Double or Nothing
-Ask for the Future
-J.Wride

Admission: $5
Donations welcome.
All proceeds to benefit Clark.

Enjoy a night out with family-friendly
music while supporting Clark.

Info also on Facebook Events - "Liver Die Charity Concert"

Chin Up

Wise words from my mom's favorite spider -

"Chin up!"

Clark still hasn't heard back from Medicaid for approval and much of his treatment plan is waiting on that. So he also doesn't know a time frame for when the BMT will take place.

In the meantime, he's trying to stay as healthy as possible and receives regular transfusions. Many have asked how he's holding up emotionally. I have to say, he NEVER complains! I complain more than he does. It's just the little things and the big things. Frustration and discouragement, long drives, hours in doctor's offices and hospitals, no answers to why or how or what to do now, money or lack there of, and bills which there is no lack of, not much of a social life, and so on and so on. Still, he never complains! I don't know how but he doesn't.

The Day to Day

Clark was discharged from the hospital a week ago Friday. While there, they removed his Pic line. He doesn't even know how long it was in. He just woke up one morning and it was there. It's been since right after the transplant though. They wanted to remove anything that would allow infection to get in easily. Now he has to be poked every time he gives or receives blood, or anything else. He bruises easily and they take a long time to heal so all these extra sticks make for many bruises. Eventually he will have a port put into his chest for the chemo and BMT. Home health visits have been cut back to twice a week, Monday and Thursday. He doesn't have any energy and sleeps most of the days. He also doesn't have any appetite at all. He weighed 125 a couple days ago but is now back to 132. He wakes most mornings with a pretty good head ache that lightens as the day goes on. He spends lots of time on the computer and Xbox. He said he has Skype on most of the time so if you want to give him a call you can either search for his name, or his Skype username is "tuffscarz".Willow also keeps him busy. She loves Hemi and I never know if Hemi is playing along with her or trying to run away. Willow likes to tell Clark stories. She picks up a piece of his mail (and there's a ton of it, mostly bills!) and starts out something like this, "Once upon a time, . . . hopisal . . . some more things he can't understand . . . You like that story Clark?" Then she'll grab the next piece of mail and start in on another story. Today she told him that he can come to storytime with her.

. . . And On and On . . .

Still no definate cause of Clark's symptoms. He was a little dehydrated so he recieved fluids to help with that. They said his liver and everything else are functioning just fine. There is some calcium build up on his liver which is probably causeing the pain. They are not concerned about it as it is common and just part of the transplant process.

Clark felt great all day yesterday and was expected to come home today until he woke up with a fever again this morning. He had a 103 fever but felt like he could not stay warm. They gave him Tylenol, the fever lifted, and he is felling fine again. Unfortunately, because he has these spurts of fever, they will keep him for observation until tomorrow.

They are also talking about taking out his pic line. Origionally they were going to "install" his central line in preparation for the BMT but now they don't want him to have any lines as they are easy access for infection. The pic was easy access for us too though. Now he will have to be stuck everytime they draw blood or administer medicine. This will be hard because that is something I CANNOT DO!

If you would like to visit, Clark is on the 2nd floor in the Intermediate Care ICU. No kids, no visitation from 7-8:30 AM or PM, and no later than 11 PM.

This is the sickness that never ends . . .

Yes it goes on and on my friends . . .
Clark started feelin' it not knowin' what it was . . .
Now he'll continue BEATING it forever just because . . . !

Cue MUTE button!

After a short visit home, Clark is back in the hospital. In and Out! Just like that. I was up getting ready for work when I received a text from him asking me to come downstairs. I knew something was up and rushed down to find him in his bed, face wincing in pain. He said he felt like his body was on fire, yet he was freezing cold, extreme joint pain especially in his ankles, headache, and pain in his liver area. He also felt faint and was pale and almost fainted when he tried to go to the bathroom. He felt fine when he went to bed the night before but symptoms started in around 3AM. I called the transplant coordinator who said he needed to come straight to the ER at the U. Kellen took him up while I went to work. Clark said his discomfort lifted some on the drive up. When they got there, Clark stood to get out of the car while Kellen got a wheelchair. Kellen turned around just in time to see the blank stare on Clark's face and catch him as he went down. The valet helped Kellen lift Clark into the wheelchair and he started to become aware again once inside.

In the ER, they gave him saline and drew blood for testing. The liver team was called in and throughout the day he had several more tests including a CT Scan and an ultrasound. Clark said that all other symptoms had gone away but his "liver area hurt super bad." There was talk of some kind of node on his liver but we are not sure what that means or if it even is. They also said something about infection so he was getting an IV antibiotic drip over the course of three hours because it's so potent it would be harmful if it went in too quickly. We are hoping to have more answers today as results come in.

Clark sent me a text letting me know where he was being admitted to. It said, "2nd floor. Do u know if I have been there?" I laughed and relied, "The SICU is on 2nd floor. Ya you've been there!" Mom responded with, "You lived there!" Clark said he is in the room where he saw bugs and mice. Wonder if they've taken care of that problem yet!

Nurse Kristin

Ha, that'll be the day. Everyone keeps saying I should go to nursing school with everything that I do here with Clark. I think they mean I SHOULD go to nursing school because I have no idea what I'm doing! I can't believe some of the things they allow me to do. I really don't do that much but with the training I've had - NONE - it sometimes gets a little scary for me and Clark.

Clark is on two different IV antibiotics right now. One is for the CMV and the other is for the organism in his urine. He receives one twice a day and the other three times a day so he is on IV 8 hours out of the day. One of them is pretty harsh and gives him pain in his shoulder as it goes in, his eyes sting and get blurry, and it has killed his appetite. Someone made a lot of money by inventing a way to administer IVs at home. It is premeasured in a little bulb that I hook up to his pick line and it goes in on it's own. I don't know how he does it but Clark has figured out how to do it himself if needed. He was coming home from infusion one day when it was time to hook up. He pulled off into a Taco Bell parking lot and started "shooting up." He said he got a lot of weird looks from passer-bys and was just waiting for the cops to show up.

I have always had a paranoia of getting air in the veins. I think it started when I would watch my dad give shots and asked him why he has to flick the syringe and squirt some out the top. He must have answered something like "if you get even one air bubble in your veins you will die!" That stuck with me and I think about it every time I get a shot or when I would donate plasma. I'm not afraid of needles but I'm afraid of air! Clark has a pick line in his arm to draw and administer from so he doesn't have to get poked every time. Even in the hospitals there are only certain people who can use Clark's pick line so when I found out that I was going to be using it at home I was a little intimidated. It's really easy but then there's the air. I was aspirating the heparin from his line one night and when I drew back on the syringe, nothing came. Clark looked down and said, "Oh, look at those air bubbles in my line." I froze! I didn't know what to do. I couldn't keep drawing because nothing was coming out, yet I couldn't push anything through because the air would go straight in and kill him. Clark laughed at me (Clark laughs when he's nervous) and I just sat there holding the syringe making sure not to push or pull. Clark said, "You have to push it through. There's nothing else you can do." He tried to be comforting by telling me that all the nurses say it takes a lot of air to kill someone. How much is a lot? I freaked and told him I couldn't do it. He said he would do it himself if I just hooked it up. Taking a deep breath and looking away, I pushed the saline back through and guess what, Clark is still alive today.

Next challenge - giving a shot. Clark receives a Neupogen shot which boosts his white blood cell count. He was getting it at the hospital but since they want all his levels way up, they sent three doses to be administered at home. I have never given a shot before except to a cat. Clark was pretty nervous and coached me on how to do it. I think I was more nervous than he was but tried not to let on to him. This is a painful shot even when a nurse gives it so I didn't want to add to that pain by doing something wrong. Clark said you can't go slow, you have to go fast but not to jab it in. We went back and forth for a few minutes before I finally jabbed it in when he wasn't expecting it. I surprised myself. He said it hurt, but only just as bad as usual. The next night went much better. I hope I don't have to get used to it though. The video isn't the best quality, it's dark and you can't see faces, but you can still hear us.

Those are my two horror stories so far. Not hoping to add to the list.

Turn off the music at the bottom of the page before clicking play!

Hometown Hero

When I woke Clark up this morning to start his IV he said, "I had a dream that I went back to Watertown and they had a parade and everything for me. I was famous! Everyone wanted to see my scar." I told him it's not too far off from the truth.

This is an article from Pizza Ranch's Newsletter. Click on the image to enlarge.

In and Out

No, not the burger. Although they are mighty tasty and we have enjoyed them once since they started popping up in Utah. Rather, in and out of the hospital. Clark was discharged from the U on Tuesday and readmitted to the Huntsman on Thursday. We should start saying that Clark is having visits home instead of visits to the hospital. Between American Fork, the U, and Huntsman, he really spends more time there than he does here.

He was admitted because his levels were at an all time low. Clark knew something was up by the way he was feeling. He was supposed to have an infusion on Monday but was in the hospital and they didn't do it for some reason. So when he went for his infusion on Thursday at American Fork he was really feeling it. He barely made it in. He got light headed and was seeing stars as he walked through the doors. The threshold they usually want his platelet count in is 10-20 and Clark's was at 3. His hematocrit was 10 and they want that at 24. While at the Huntsman, they wanted "tank him up" with blood and platelets to get his counts back at a healthy level. They said they will aggressively get his platelets up and bring the bleeding down. He was being infused around the clock the whole time he was there. They said that they will "keep him here as long as they feel it's unsafe to be outside and he's not needing daily transfusions." They originally estimated his stay to be 3 days but he was discharged the very next day.

Clark had blood in his urine once in the last few days and while there they also found an organism in his urine. It is contagious so staff had to gown up and they made sure he was using his own bathroom at home. He is being treated for that with an IV antibiotic three times a day.
We have heard what a nice facility the Huntsman Cancer Institute is and we were not disappointed. The rooms had more of a hotel feel than a hospital feel. They were big, had a pull out couch for two to sleep on, a desk area, closets, big bathroom, and even the colors were cozy and warm. You order your food off The Point Bistro menu and it's brought to you by "room service" whenever you want it. Clark said it was too bad that he didn't have a room like that to stay in when he was in the hospital for months on end. Even though they were nice, he was glad that he only had a one night stay.

C-dif

Clark is still in the hospital. There was talk of releasing him yesterday but he had a 104 fever so they decided to keep and monitor him longer. He was also experiencing pain in his side which they thought might be a reaction to the antibiotics and the CMV working its way out. Another stool sample showed an infection called C-dif (I think? I wasn't there for this conversation). For this he needs to take a pill three times a day for a week and shouldn't have anymore problems with it. As much as he hates it, looks like it was a good thing he was in the hospital to catch these things. Plans are for him to come home tomorrow.

Some have asked if it's nice to have our house back to ourselves for a bit. Honestly, no. We like having Clark here and actually miss that he's gone. I'm sure Hemi does too. For the whole first day she paced the house whining. Willow always asks where he is. "Oh, he's at the hopisal? He's getting blood?" I have pulled four loads of laundry from him room though. It's nice to know he's being taken care of, even if he does choose to eat Ramen or Pasta Roni over a homemade meal.

That being said . . . My confessions . . . We have eaten salmon and drank grapefruit juice while he's been gone! MMmmmm! One he hates, the other he loves but can't have. Both would make me feel guilty enjoying them in front of him.

"Home Sweet Home"

This was what Clark said as he walked into his hospital room last night. Ya, that's right. He was admitted to the U. As you may recall he was supposed to go the hospital on Thursday to remove the blockage in his bile duct. They called on Wednesday and said that they would wait until after the upcoming BMT. The drainage tube would just create an easy passageway for infection and bacteria. This along with his even lower immune system during the BMT, not a great combination. So he was thrilled not to have to stay in the hospital and went to the Jazz vs. Calvs game instead!

On Friday they called Clark, wanting him to come in for blood on Saturday at Huntsman. Clark asked if there was anyway he could get it that day at American Fork. Of course that was fine. Sometimes they just don't think of the inconvenience it is to drive up there. Just before getting hooked up for blood, his phone rang again. This time it was GI at the hospital. Results from his colonoscopy biopsy were in and he has a virus that needs immediate treatment. They wanted him to come in ASAP but it takes a couple hours to get blood, home to pack and eat, and an hour drive. We arrived at the hospital at 9:00PM. Admitting didn't have any orders and didn't know where to send us. Great! After much searching, a few phone calls, and an hours wait, Clark had a room.

He is on the 5th floor, just next door to where he was months ago. Yoko, one of our favorite nurses from before, was his nurse last night. She remembered him too. Clark said it felt weird to be in that room and able to move around. He recalled memories or his first shower and that "dang ol' enema." Clark weighed in at 140 lbs, which is the same weight he was discharged at two months ago.
So the diagnosis? Clark has CMV colitis. It is a virus, similar to Epstein Barr or Mono in that many "normal" people get it, have mild symptoms, get over it, and never even know they had it. On the other hand, it can wreak havoc in immunocompromised people. It can show up in many areas like the eyes, colon - as in Clark's case, and what is a major concern - the transplanted organ. It is also the type of virus that once you have it you always have it and it can flare up at anytime. He will receive a 14 day course of IV antibiotic medication but is only expected to be in the hospital for 2-3 days. We know how quickly all of this can change and hope for the best.

Bye, Bye Bentley

Anyone who knows Clark, knows that he LOVES his dogs. He got Hemi three years ago and Bentley shortly after. Both dogs are always by Clark's side, in his bed, on the road, and everywhere in between. It was a hard decision, but Clark decided to sell Bentley as it was best for both of them. Clark could no longer care for both dogs and give Bentley the time and attention he needed. He was on KSL for only a few days before his new family came to get him. They have already emailed us that they are very happy with Bentley and said he is a great fit for their family.

On The Road Again

At his last visit, Clark asked Dr. Hutson if he could start driving again. A smile came across his face when Hutson answered, "Well, I don't see why not." Clark said, "It's been over six months since I've driven. It'll be like I'm 16 again!" A big thanks to Eric and Kate and the Bishop for fixing up and taking such good care of his car.

Clark said he wasn't even going to try to date until he could drive again. Ladies watch out!

Don't tell Mom, but this picture is of Clark driving . . . on the interstate.

The Latest

Even though our updates are coming less often, Clark has had a lot going on lately. We have been at one of the three hospitals he frequents a couple times a week. There are three major conditions he is dealing with right now.

1. He was told last week that a bone marrow transplant is necessary and they are going to move forward with it as soon as he gets insurance. We have been in the application process for Medicaid since October and it is slow moving. We were just told yesterday that he was approved by the medical board, now need approval from the financial board. We need to fax them a lot of information and hopefully he can get approved. It will be such a blessing if he gets on Medicaid. I don't know what he will do without it. When he was discharged from the hospital he was at $1.3 million. Since then he has had MRIs, Ultrasounds, Biopsies, Home health care, prescriptions, and regular infusions. I bet he has already passed the $2 million mark. Anyway, back to the BMT, we don't have a time line because it's dependent on the insurance. They said they will probably use the adult rather than the minor for a donor, meaning Wyatt. They will look at other aspects of their health as well. Clark isn't scared for the BMT. He was somewhat relieved to have an answer and a plan of attack. He is dreading the hospital stay which will be 4-6 weeks if everything goes well.

2. A blockage was found in the liver in an MRI done just before Christmas. He is scheduled for a procedure to remove it on Thursday. They said there are a lot of risks involved in Clark's case. Some are excessive bleeding because of low platelets and infection to the liver. The blockage is in the bile duct, which has caused a bile leak. So they have to insert a drainage tube through his rib cage to drain the bile before they can clear the blockage. Clark was very worried about this procedure but received a comforting blessing last night that all will be well.

3. While at the hospital, they sent him for an urgent colonoscopy, which turned our 1 hour visit into 10. We haven't discussed this on the blog before because it is a little more personal, but Clark has had frank blood in his bowel movements. That's the best I can think to describe it. I can't say he has had blood in his stood because there is no stool with it. Since he has low platelets, there is a lot of bleeding! You get the picture. And just in case you don't . . . Often times it keeps him at home instead of going to church, family gatherings, or other activities. He can always tell when his platelets are low. They were surprised that he was walking and not in any pain. The colonoscopy showed that he has "a continuous area of bleeding ulcerated mucosa with nodularity and stigmata . . . " blah blah blah! Pretty much he has a tumor or ulcer in his colon. In Dr. Hutson's words, "I don't know what the hell this is. I have never seen it before in a liver transplant patient." He has a few ideas of what it could be but will not know what it is or how to treat it until they see the biopsies under a microscope. Worse case scenario, which we have become accustomed to consider, he will have that portion of his colon removed. More on this by Wednesday or Thursday.

Huh, is that all? Yes, for now that is all!