Curtis Johnson Foundation

Hospital Visit

2010-06-10T15:44:00.002-06:00

Well, that good clinic report didnt last long.
I kinda knew someting wasnt really right with Curtis.

The fatique and nausea and vomiting was getting worse, we mentioned that
while at clinic but they said it was probably a virus going around.

Over the weekend the 15th and 16th he got really sick. I told him it was
time to go back to the doctor, rather he wanted to or not.
He needed a blood draw anyway so Monday we went over and had the blood
drawn then went home. We weren't home 15 minutes when the hospital in beaver
called and wanted hime to come back to draw it again. It was the same results.
His potassium level was dangerously high, causing his kidneys to start shutting down.
They put him right in the hospital, he seemed to get feeling a little better with IV
fluids, but after he was sent home, we went back over for more blood work, it showed
the level was back up again.
So into the amublance he went and to Salt Lake U of U hospital.
That was friday evening.
We were three weeks there. It took a week to get his kidneys to be normal again. Then they could do the CT scan and MRI to show them the problem with the liver.
He had grown scar tissue at the connection site of the portal vein causing fluid to back up
into his liver and body cavitiy, putting pressure on the lungs.
they drained the fluid off four different times. They did 3 procedures, to get into the vein
of the liver. the last time they did angioplasty where a ballon was inserted and enlarged the opening making it possible for the fluid to pass through.
This made a big difference. Finally he was feeling a lot better.

We came home last night ,the 9th of June. So glad to finally be home.
Thanks for all the prayers on our behalf. I surley felt them.
Thanks to our kids for taking care of our home and animals and for
giving me a comfortable place to stay in Salt Lake.
We love you all,
Curtis and Lee Ann

Good Clinic Visit

2010-05-13T17:54:00.003-06:00

We visited the Liver Transplant Clinic on Wed. for a routine
checkup for Curtis.
Other than some asthma and fatigue, he is doing very well.

We saw other patients there who are awaiting a transplant,
who dont look so well. Makes us realize how sick he really got
before he was transplanted.
We talked on the way home about how much better Curtis
looks and feels now.
And how thankful we are for how fast he received a new liver
after being put on the list.
We talked to the Transplant Buddy while in clinic. He is a liver
transplant receipent, and his job as a buddy is to visit with
patients in the hospital pre-transplant and post transplant.
I asked him if it bothers him to see so many sick people all
the time.
His comment was, "I spend time with the patients who are just dropped off
for clinic, with no caregiver with them for support,I feel so bad for them that
I have to give them some support ."

I cant beleive that people can be so heartless to not be there
for there loved one. How sad is that.
I remembered a patient who was in a coma after transplant that
was on the same floor as Curtis. His wife had to leave him to go back to
her job in Idaho, so they would have insurance.
I mentioned that to him, and he told us that patient had died not long ago
of pnuemonia.

Reminds me of how blessed we are to have Curtis here with us
and have him doing well.
His life hasnt been easy, always riddled with illness and diease.
He has been a trooper, and endured well.
We never know what our trials may be, we just need to be able to
endure the trial we are given, and through faith in Jesus Christ
we can endure.

Wedding Anniversary

2010-04-16T17:04:00.003-06:00

Today is our 33rd Wedding Anniversary.

We took a trip down to Zions National Park. Stayed last night
at a Band B. It was beautiful there. More signs of spring than there
are here. There fruit trees are actually in bloom.
It was busy, lots of
tourists already, we sat next to some people at breakfast, from Paris.

We rode the park shuttle into the canyon and took pictures. Curtis got a
little uncomfortable with so many people around, especially on the bus.
But he dealt with it good. He tends to stay away from crowds of people, to
many germs going around.

We went to the Imax theatre there and saw AVITAR in 3D. I thought it was way cool.
Curtis said it was just alright.

Im so thankful Curtis is still here with me to celebrate our anniversary.
A year and a half ago I wasnt so sure he would be.

He is doing very well. His blood draws have been really good. This week he was
told to go down .5 on the prograff, the anti-rejection drug.
So he doesn't need so much, which is good. It tends to confuse him at times and
cause spikes in his blood sugar.
He still suffers from fatigue, but that will always be there. Transplant patients seem
to all have that problem.
So we just do what he can and not worry about anything more.
Just trying to enjoy life and be grateful for the time we have together.

What a difference year makes!

2009-11-16T21:20:00.002-07:00

Things are pretty much back to normal for us. I guess as much as normal
can be considering all we have been through.
When I read the previous postings and remember how bad it got for Curtis, I realize
our lives are really good now.

He is doing very well. The blood results from his tests are very normal.
His only problems have been with the diabetes. He has a lot of extreme lows
which cause siezures. One happened in a store in beaver about a month ago. It was scary and
we ended up going to the hospital by ambulance. I was with him and knew what
to do for it. So we were ok. They kept him a few hours in the hospital in beaver
until he was thinking normal and the blood sugar was in normal range.

The prograff can cause ups and downs in the blood sugar. So we have to remember
to eat and check his blood glucose often. He still has fatigue and sleeps a lot.
But that is to be expected.
As far as working , he's not. Other than dispatch for his truck and keep his wood
cutting crew on task.
I tend our new Grandaughter a couple days a week, and we both enjoy having her here to love.

It finally feels like things are going in the right direction for Curtis.
It was such a miracle. When I look at him now as compared to a year ago.
He looks so good and young! You would never know he has been through so much
in his life.
We are so grateful for the wonderful blessings we have enjoyed, and for all the people
who helped us along .Our familys have been great support.
Especially our children. They are wonderful . What would we do with out you?
I know I would not have gotten through it all without the love and encourgement
of our kids and extended family. (especially my sisters)
Thank you all
We are looking forward to a Happy Thanksgiving and a Merry Christmas
Happy Holidays to all of you
Love Curtis and Lee Ann

One year anniversary..

2009-11-10T18:35:00.001-07:00

There’s a rare and special quality
in the way some people live
However busy they may be -
they still have time to give.
Anything you ask or need,
they’ll do their very best -
No matter what the task is
or how simple the request.
Kindness just comes naturally -
to this rare and selfless few...
Special, giving people

–People just like you!

A year ago on November 10th, Curtis received his liver transplant. If it wasn't for the good people of Beaver County who donated to his transplant fund, Curtis wouldn't have been with us today. Words can't express our love and appreciation for the financial support, the prayers and the love we received during this difficult time and this past year.

We are so blessed and thankful for everyone of you.
Curtis & LeeAnn Johnson and Family

New Update....

2009-04-26T15:36:00.002-06:00

My dad is back in the hospital at the U of U. He has bacterial pneumonia in both of his lungs, which is making him pretty sick. He also has a sore throat but the pain is lower into his esophagus, they are supposed to do a scope to see what is causing the problems. As far as his liver goes, it's doing great, there hasn't been any issues with it so far. We hope that it stays that way. We don't know how long he will be in the hospital yet, as he went in over the weekend. Like is said we are still waiting for Dr. Hutson to do a scope down his throat and into the esophagus. When that happens I will post more information. He is on 6th north, Rm 601 at the University of Utah Hospital if anyone wants to contact him.

Home at last......

2009-02-17T13:13:00.003-07:00

I guess you could say that this blog is REALLY outdated. My mom asked me to update it weeks ago but I am soo busy lately I kept forgetting. So, I better get busy. My dad is doing so well, most of you probably already know that he is home and has been home for probably a month now. His last appointment was a few weeks ago and the doctor told him he didn't have to come back for another 5 weeks. The team is so happy on how well he has been doing. The keep lowering the doses on his anti rejections and steroids. Which is help his blood sugar to be the normal it's supposed to be.
I think he is really enjoying being at home, finally. He told me he never thought he would be able to go back home. He isn't supposed to drive because he's still on the pain patch, which if your around his for any amount of time you can kinda tell :) I'm happy he's in his place of comfort and I hope he continues to get well.

Home away from home....

2008-11-24T19:30:00.004-07:00

Dad was sent home on Tuesday Nov 18th to their new home away from home. They are staying at a motel suite downtown close to the hospital so he can go 3 times a week for his blood draws. Plus he has to see his doctor once a week. He is doing fairly well, his blood sugar has been quit elevated due to the medications he's on. Considering the extensive surgery he's doing very good. His stomach and back have been hurting him, but that's kind of expected. His color is returning and the yellow is going away slowly. They are supposed to stay up here for a month or so, then maybe after Thanksgiving they can go home on the weekends. The doctor's want him to stay close because his body still could reject the liver up to 14 days after the surgery, plus it's somewhat a comfort to be close to the specialists he needs. Thanks everyone for all your thoughtful prayers and kindness.

New liver....

2008-11-14T18:10:00.002-07:00

My dad received his short awaited liver on Monday the 10th. He was called on Saturday to be the back up to someone ahead of him. The first guy's transplant went very well so my dad had to wait for another call which came Sunday morning. The regional transplant team called to say he was first to be on the list and that the liver was a match for him. They had to test the tissue of the liver to see if it was a match for my dad. He was told to wait around SLC and they would call him within the next 10-15 hours. My mom and dad had just went to bed when they received THE CALL saying everything was a match and to get to the hospital. What a wave of emotion sent across the whole family. We got ready to go and called my bishop to give my dad a blessing. The bishop with his counselor came right away and gave my dad a very touching blessing then we were on our way to the hospital. He got all checked in at the U of U then was sent to a room on the SICU floor to await the next instructions. The nurses took a bunch of blood and did other tests to prepare for the surgery. He wasn't scheduled for surgery until 8am the next morning so my mom and I headed back to my house for a few hours of rest.
We got back up at 5am and headed back to the hospital to wish him luck for the surgery. It ended up being about a 10 hour surgery then a 2 hour wait before he went back to his room. We finally got to see him again around 8:30pm. It wasn't fun to see him sedated with tubes coming out from everywhere. But everything turned out very well and he's recovering better than expected. He set the new record of getting out of ICU within the next 24, 48 and 72 hours. Which is wonderful, he's doing exceptionally well and has a positive recovery ahead.
He will be released maybe within the next week to stay in SLC for the next month or two.
We will post new updates as they come. Thanks for all your support and love.

Phone call.....

2008-11-09T17:39:00.004-07:00

My dad got a call early Saturday morning saying he was the backup person for a liver that was being donated. The 1st person was being screened to see if the liver would match him and if not then it would go to my dad. They were checked in the hospital and ready to go. The first person was able to receive the liver. So my parents stayed the night in a motel and was ready to go home Sunday afternoon. Around 8am the regional transplant team called and said there was another matched liver for my dad but they had to test the tissue to see if it matched his. There would be another 10-15 hour wait. The liver is in Idaho so if it matched they would helicopter it to the U. So they are "patiently" waiting for another call. If it's a match he will be transplanted most likely tomorrow. Anymore news and we will keep this blog updated.

New update.....

2008-10-23T18:01:00.001-06:00

Hi Everyone

Just wanted to update you.

Curtis received a call on Sat. from the transplant coordinator telling him his labs from Oct. 15th showed a
significant increase in his MELD score. He was at a 17 and now is at 27. that is a three month period.
His blood clotting has worsened also. He bleeds really easy.
That can be a problem because he could hemorrhage very fast, so he has to be careful.

He is now on the U of U list at #2. and 7th in Utah. The one person ahead of him is in the hospital on life support.

If they open up that person and find cancer or some other reason not to transplant him,
then Curtis is on standby for the liver.
They told us that could happen more than once. So we just have to be prepared to go on a moments notice.
Because we live over 3 hours away, they couldn't give him a beeper. So we cant leave the area, to go farther
south or west or east of here. So we pretty much stay put. they have 6 hours to transplant a live liver.

Curtis is required to have a weekly blood draw now.
Then the coordinator updates us on Friday's.
Today it took them 45 minutes to draw blood from him. they just
cant get it out. then when they do it wont stop.

We are trying to get prepared to leave when they call us. We will have to relocate to S.L.C. for possibly three months
so they can monitor him post transplant for rejection.

It seems overwhelming to me. But I can certainly feel every-ones prayers and love for us.
I'm holding up pretty good for now, and our kids are great help and support.

Our Grandson Colby came up last night with his Mom and sisters to watch' Iron Man 'with Grandpa.
He has to sit right next to Curtis in his recliner, So Colby was on one side and Granddaughter, Sunny ,
on the other side. Curtis could hardly move.
But he seemed content and happy to have them there. Colby has always been a big comfort to Curtis.

I watch him get somewhat worse each day, and wonder how he can make it to transplant.
But I have faith that things will go well.
I know the Lord is with us and knows and feels our trial.
We will get through it.
I will let everyone know more when we do.
thanks for everything
Curtis and Lee Ann

An update

2008-10-16T18:00:00.001-06:00

Hi Everyone

We met with the transplant team yesterday. Curtis received his flu shot and second
hepatitis B shot. They did a blood draw to check his Meld score ,Model for End Stage
Liver Disease.The Meld is a system of prioritizing patients waiting for liver transplant.
It is a statistical formula that determines that the patient with the greatest need will have
the highest priority for the next available liver.The Meld score is used for adults and the
Peld score is used for pediatric patients. The Meld score is calculated by a formula that
uses 3 routine lab results.

1.. Total Bilirubin, measures how effectively the liver is excreting bile.

2. INR and prothrombin time, which measure the liver's ability to make the
blood clotting factors

3. Creatinine, measures kidney function.
Imparied kidney function is often associated with
severe liver disease.

Meld score ranges from 6 ( less ill) to 40 ( the most ill)
Patient with meld scores of 15 or greater are consider for active
liver transplant listing.

Curtis' last meld score was 17. We will know on friday what it is now.

The Meld will vary with each lab draw. It is mandatory for patients to have
lab work done at least every 3 months or sooner if the Meld score is greater than 18.

Now we wait.

Waiting times depend on the patients blood type, (Curtis is A positive), the severity of his illness,
body size and the number of donors available and is therefore difficult to predict.

The United States is divided into 11 different regions. In Utah, we are in region number 5 and we share our
organ allocation with Nevada, California, Arizona and New Mexico.
The organs are allocated by specific listing priority.

1. Status 1- these patients take first priority. These are patients who are identified as having acute fulminant liver
failure, who have been deemed as having less than 7 days to live.

2. Local (meaning those patients listed in the state of Utah with a Meld score of 15.

3. Should a match not be found then the organ is offered to the Regional patients who
are listed with the Meld scores from 40 most ill, to 15 who have been waiting for the longest
amount of time.

When Curtis is listed on Friday, he could be 7th on the Utah list.

There are currently over 18,000 patients who are actively waiting for liver transplantation.
Out of the 18,000 patients, approximately one third will transplanted, one third will transistion to waiting
the following year and one third, unfortunately, will die while waiting for liver transplantation.

We have faith that Curtis will be transplanted.
Please pray for him.
We are so grateful to all family, friends and business associates who have donated time, items, and monetary gifts
for Curtis' fundraising benefits.
It has all helped so much. Curtis is a great man, a great father and husband and friend,
brother and son.
We need him around for a lot longer.
Thanks so much for your support

Love Lee Ann

A fun weekend gone by...Thank You!!!

2008-10-13T21:32:00.002-06:00

I have posted a slide show of the band and dinner that was held for my dad. Thanks to everyone who attended and to all the people and businesses who donated. We love you all.
Curtis Johnson Family.....

Thank You!

2008-09-08T17:55:00.003-06:00

We as in the Curtis Johnson Family, would like to send out a sincere THANK YOU to family and friends who made this last weekends yard sale turn out so well. K'Brina, Tracy and Grandpa & Grandma you planned such a great event that had a wonderful turn out. Thank you for all your hard work and diligence this last weekend. We love you guys and all your efforts will pay off. Thank you the town of Salina for having an open heart and helping a person in need. We will meet our goal with this type of effort. Thanks again!!!! We love you!

4-Wheeler Raffle........

2008-09-04T21:06:00.000-06:00

Win this 2008 Polaris Sportsman 500 4-wheeler, 4x4.
Tickets are just $10.00 each and if you buy 10 tickets and get the next one free, total of 11.
Applies only when you purchase 10 tickets.
Proceeds going toward the Curtis Johnson liver transplant fund.
4-wheeler will be raffled at a later date which will be announced later.
Contact Lindsey or Lee Ann to purchase tickets.

Please pass the word on to family and friends to help sell more tickets.

The hunters......

2008-08-22T19:08:00.003-06:00

My dad was choosen to be the alternate for the big bull archery tag on the Beaver Mnt. It's a once in a lifetime tag. My dad was so excited! He had to buy a cross bow because he's not able to pull the regular bow back. Come to find out he doesn't have the strength to pull the cross bow either so one of the guys has to be with him. Along with the little nephews, I hope that goes ok.

Muddy Boots Benefit Concert

2008-08-20T21:10:00.004-06:00

Muddy Boots
Benefit Concert For Curtis Johnson
Oct 4th, 08
Come join us at the Minersville fairgrounds for a night of music, dancing, dinner and a auction.
All proceeds go directly to the Curtis Johnson Fund.
We as family, friends and community are trying to raise funds for Curtis to have a liver transplant.
Some of the many great items to be auctioned are;
Compound bow, Makita laser slide, Makita table saw and stand,
2 leather recliners, hand made quilts, cut and wrapped pork and many more great items. Come join us for the fun and to support a
Good cause.

Dinner at 5pm
Band 7-11pm
Auction 8pm

Muddy Boots Benefit

2008-08-20T21:08:00.002-06:00

Muddy Boots
Benefit Concert For Curtis Johnson
Oct 4th, 08
Come join us at the Minersville fairgrounds for a night of music, dancing, dinner and a silent auction.
All proceeds go directly to the Curtis Johnson Fund.
We as family, friends and community are trying to raise funds for Curtis to have a liver transplant.
Some of the many great items to be auctioned are;
Compound bow, Makita laser slide, Makita table saw and stand,
2 leather recliners, hand made quilts, cut and wrapped pork and many more great items. Come join us for the fun and to support a
Good cause.

The end of the county fair...

2008-08-17T14:46:00.004-06:00

Well things went good at the fair.
We figure we were donated $1,300 dollars for the 3 days. The derby brought in a lot.

It was long day for me. I was there all day. Ashlie and Brandon came with
the kids in the early afternoon. Dad slept most of the morning and came up about 3:00.
Jeremiah also came after work. He was on Tefts pit crew for the derby, so we didn't get to see him much. After the derby he came back over and helped us load up the stuff.

There was a activity at the fair yesterday called : "Fair Factor" like fear factor.
Brandon entered and was one of three men's finalist. He had to drink Tabasco sauce and vinegar with a chicken heart and liver and move raw eggs from one bowl to another with his mouth.
He did ok , but had to go puke. then he said it was burning all the rest of the day.

The finals were during the derby. they had to drink a goldfish and hold it in their
mouth while running to the other end, then spit it out and drink a cup of old yogurt.
He was up against two teenagers.

But he won!! the prize was $250.00 He then came over and handed it to Dad and said ,here this is for your fund. Dad had them announce that Brandon donated all of his winnings to the fund.
Really awesome, The crowd put up a loud cheer.

One derby driver was rear ended so hard they had to cut him out of his car and sent
him in the ambulance to beaver. Then another girl started in labor while selling stuff in their booth, but she went to the hospital in someones car.
Then there was a bad wreck up in the hills somewhere near the reservoir.
Crazy stuff.

They read Dads info flyer during the derby and again during the dance and concert.
I'm amazed ,but then I'm not at how generous people can be, they really care.

We are so grateful for the generosity of our community.
Its really awesome. Maybe that's why Dad felt so adamant about moving here
to live. He just kept telling me this is where we need to be. He always has had inspiration about those things. Things like this bring people together.
Our mayor, Jim Craw, who was run over by the train last year and had his
legs cut off, came over and talked to Dad and offered his help with anything.
He said I lived through a tragedy and I know how it feels, but people are
good and willing to help. He was crying.

We were donated a pig cut and wrapped by the Bradshaw livestock Co. in
Adamsville, Wayne and Tracy Bradshaw, Clancy's Aunt.

Ricky Erickson, a co-worker at circle four donated a quilt.
He makes quilts, it funny, hes a real big guy, and a quilt maker.

Anyway now that the word is out, people are stepping up and wanting to help.
I cant say it enough, It 's Awesome.

Quoted by Lee Ann

SAT 16th

2008-08-16T14:21:00.002-06:00

The family again are at the fair today to raise funds. Here's a quote from my mom this morning, "I'm headed to the fair, we did a little better with donations last night. They read Dads letter to the crowd at the rodeo and then passed the big jug around. The concert was by Charley Jenkins a finalist on Nashville Star last year. Nice Guy , really good looking too".

Sounds like they are doing pretty good and they are having fun at it at the same time. I also want to add that the annual Jackson reunion is being held on Aug 23rd in Provo this year. My mom and grandma Neanie have made 2 quilts to raffle, the proceeds will go to my dad's fund. We would like to encourage everyone to please come that day, not only to support the annual reunion, but to support my family as well. We would like to to express sincere gratitude to the persons that have already helped out and that continue to help. We are in a time of need and this support will also help bring our families closer. Please remember, "Families are Forever". We love and thank you all.

This weeks events

2008-08-15T17:02:00.002-06:00

On Thursday Aug the 14th, Minersville is having their annual fair. My mom was able to set up a booth at the fair with a banner and sell beverages to raise money for the foundation. The total count raised for Thursday was 50.00. They get off at a slow start, but it is just the beginning of the fair. The weekend has more to come tonight with the rodeo and tomorrow with the demolition derby. Ashlie, Brandon, Becky and their kids have been there helping with the booth. My dad was so tired and wiped out from yesterday's event he opted to stay at home this afternoon. My mom said that a few random people would walk up to them and give them a couple hundred dollars. So it's looking good so far. Stay tuned for updates on the raising of money, activities and dads medical status.

Fundraiser

2008-08-13T18:03:00.001-06:00

My dad Curtis Johnson was diagnosed ith a rare liver disease, Primary Sclerosing cholangitis in March of 2008. He is now in end stage liver failure and his only hope of living a normal life is to have a liver transplant.
Although he has medical insurance there are many expenses not covered as in travel expenses, medicines, the huge co-pays and temporary relocation. To help with these medical expenses a fundraising campaign has been set up through National Assistance Transplant Fund (NTAF). NTAF is a non-profit organization that has been helping people for over 25 years. Donations can be made at your nearest Wells Fargo Curtis J. Johnson Liver Transplant or Zions Banks in the name of Curtis J. Johnson Donation. Or if you prefer to make a donation to the NTAF foundation please email me for an address.
We are appealing to our community, family and friends for help. We have faith the funds can be raised. Your support is critical to the success of my dad's struggle. Your generosity is greatly appreciated. Please know your contributions count!

With sincere gratitude,
The Johnson family