Monday, November 2, 2009

Overwhelmed with Information

(Monday's post a day late. Yes Clark was discharged Tuesday. That one is still to come.)

I can hardly believe that tomorrow is the day. It actually didn't hit me until Clark called and asked if I could be at the hospital at 3:00 today to go through discharge instructions. When I walked into Clark's room he was already talking to a guy and filling out paper work to try to get on financial aid. He said that Clark's bill is at $1,300,000 and charges are still coming in. Plus, a bone marrow transplant costs $500,000, given there are no complications that is. So the scare is that he will exceed his $2 million lifetime max. Also, long-term, his 15 different meds will cost about $100 - $200 each month. We are hoping that he will qualify for some assistance so that money doesn't have to be a stress for him on top of everything else he is dealing with.

The transplant team stopped in to check up on him. Dr. Box said that he is scheduled to come back on Nov 10 for the marrow biopsy results and to meet with their team. He said that Clark's bone marrow has failed, probably as a result of the original condition that killed his liver. His bone marrow is not producing any of the three blood components - white or red blood cells, or platelets. He has been receiving transfusions and injections to keep these levels up and will continue to receive them as needed. No other organs appear to be under attack at this time but they will be watchful for that in the future. One of the ladies was especially excited to see Clark. She said, "It's so awesome to see how good he looks, last time I saw him was in intensive care." He's come a long way since then. Dr. Sussman has called Clark's condition HHV6 and said that it is a rare virus that attacked the liver and he has only seen one other patient with it in 12 years.

Clark is worried about some of the side effects. When he learned that Dr. Box had a liver transplant he knew that he was the perfect person to ask. Clark asked about sun exposure. Dr. Box explained that Clark's medications cause his cells to have a hay day in the sun, leading to skin cancer. He will need to wear a high SPF sunscreen or long sleeves and a hat whenever outside. He will also need to see a dermatologist 3-4 times a year for examinations at first. It will taper off but he should never go less than twice a year.

Then he asked Dr. Box if he also lost all his hair. Dr. Box looked right at Clark and answered, "Oh you are way sicker! You are about as sick as anybody we take care of that survives!" He explained that Clark's body was shutting down and they were trying to keep him nourished. So this along with the amount of infection, and the amount of meds, his body just had all it could do to stay alive and wasn't focused on his hair. Dr. Box assured him it would grow back and even said that one of the side effects that most people see as a negative is that it makes you grow hair. Great! Because of this med he will also have to pay close attention to his gum health. He was instructed to work the gums and get them well stimulated and cleaned twice daily with a soft bristled brush. He was told to be careful not to make them bleed and not even to floss while his immune system is so low. He should have a dental check every six months and optometrist once a year.

Clark will have a Home Health nurse coming out to help Monday, Wednesday, and Friday. They will draw labs and fax in results, as well as maintain his wound. It is critical that his labs are drawn and his meds are taken at the same time everyday. Labs will be drawn 30 minutes before he takes his meds so they will show his levels with the lowest amount of meds in his system. He will need to go back to the hospital for clinics every Wednesday. One of the things they will do there is monitor levels to detect rejection. The liver is an incredibly hearty organ and manages rejection well as long as they catch it and give steroids to correct it. If he was rejecting he would not feel any different until late stages so close and regular labs are really the only way to tell. He is taking 15 different meds, some of which will be tapered off. The hospital will give one months worth of supplies and meds at discharge, then it will come on mail order.

His incision continues to heal well. It is coming closer and closer together. As it does, Clark is getting sensation back in those areas. He said it hurts a little bit but mostly feels strange. He has noticed a huge change in his posture. He says he is hunchback but this is normal as the incision is stretching the skin from over his shoulders and back to pull the incision together. He was encouraged to stretch little by little and eventually get to where he can lay completely arched on an exercise ball.

Some of his other discharge instructions included no driving for about 3 months, not to lift over 5 pounds, to avoid crowds of people including church and to wear a mask when out or if visitors come over, and to gain weight. Clark check out of the hospital at 137 which is about 40 pounds less than his normal weight. For the rest of his life he needs to avoid sick birds and sick cats. He is never to change a litter box or even a baby's diaper. I told him he better let his wife know that before she says "I do." He is not to handle dirt, like gardening, at all this year but after that should always wear gloves. He needs to avoid buffets because the food is left out and open and many people come in contact with it.

We are all thankful that Clark has made it this far. Many of the doctors and nurses have told him that if he were older or in poor health previously he would never have made it. We are also nervous about what is to come with the bone marrow transplant. Dr. Box's closing council for Clark and everyone was that "too much reading on the Internet will have you dead and buried in a year. Just live your life." I think prayers are needed for Clark now just as much as ever.

18 comments:

Janeanne said...

Congratulations! You graduated to the next step, Clark. Welcome back!

I can only image how scary, awesome, and every other emotion, it was to spend your first night outside the hospital.

I love the doctor's advice of "Just live your life." That's all any of us can do - take one day at a time. Pray as if it all depends on Heavenly Father and work as if it all depends on you!

Have a great day, today!

Anonymous said...

Yeah!

Your Mother said...

Clark, our phone conversation last night made me feel (SO) strange. I clearly remember you calling me during the "Wing Fling" here in Watertown mid July and asking me what it meant when your eyes and skin are turning yellow, when your urine was brown and stool white. Just days after, I recalled getting the final text while I was at work telling me you were going into the hospital in case you needed a transplant. Next day, I was at your side. I remember the strong and normal voice in which you communicated with me back then. As time passed and you faced all the many challenges, your voice faded away as well as your strength. It was overwhelming for me at times. But for the first time, since the end of July and before you went in the hospital, you were you again. Other than the topic, it was like the hospital stay didn't happen. It was like old times. Your voice sounded so strong again. I was set back as I held the phone to my ear wondering, "did all this really happen between the phone calls then and now?" Well Clark, you have been a true and valiant warrior. You have fought and fought and need to keep fighting. But please continue this battle with the grace and humbleness you so have so far expressed. Endure Clark...to the end! We don't know your END nor do we know ours but lets all finish STRONG. I love you and I love your sister who has accepted huge responsibilities to care for you. She has opened her home, her care, and her love for you. Please give gratitude in all she does. You two are wonderful children; you continue to give me great and pleasing joy. May each day forward be a better day. Love Mom

Cheryl Huntington said...

Dearest Clark and Kristin and Rhonda:

Clark:
This is all as if you had fallen into a deep, dangerous and dark pit--stranded and fighting for your life.

Rhonda and Kristin:
You have faithfully surrounded Clark at the top of that pit and have constantly kept your strong lanterns of love burning so that Clark could look up and see you and feel your encouragement and support. He could see where your strong and waiting rescue rope was positioned, and he could reach up with both hands, trusting that your faith and love would be strong enough to pull him up and out of that pit, even when all his natural strength had failed.

To all three: Now, Clark, you have been rescued, and you stand in the light with Kristin and Rhonda. Though you are feeble from this experience, you are strengthened still by your mother’s and sister’s love, faith, encouragement, and support. In families who truly love and care, this will never change, although circumstances, opportunities, and responsibilities will change.

Blessed be rescue and relief and united family members. Blessed be mercy and grace and provision. Blessed be sacrifice and patience and diligence. Blessed be trust and hope and charity. Blessed be intelligence and wisdom and obedience. Blessed be prayer and fasting and selflessness. Blessed be inspired medical staff, pain-relief medicine, and an army of prayer warriors.

Blessed above all these, though, is the mighty Hand of God. He is The One to whom belongs all praise as His power and glory and mercy and supreme love be acknowledged. Thank you,Dear Lord, for Thy multiplicity of tender mercies and for inclining Thine ear to the pleadings of those who have sought Thee in Clark’s behalf.

So, it is with a spirit full of glee and a heart full of gratitude that I congratulate you, Clark, for your Superman courage as you experienced this almost super-human trial. My constant prayers are lifted up daily for you and for Kristin and her family and for Rhonda and the all of your family members. This transition will not be easy for any of you, so you can be assured that I’m sustaining my prayer power daily. I know that this is true of the other blog-readers who eagerly hope for continued good news as your medical saga continues.

My most humble congratulations and wishes for continued strength and healing!

I love each one of you with all my heart!

Cheryl
November 4, 2009

Ricky said...

Awesome to hear Clark that you are out and about!! Hope and wish all the best in your recovery and also to find peace during this time. It was wonderful to talk to know hear your voice and it was very comforting in talking with you! if you need anything please give me a call and I'll do what I can. Love you Clark just like a brother

Ricky L

apriltahoe said...

Hey Clark,

I'm so happy for you that you are out of the hospital. Keep getting better and stay strong. Sorry about the no driving for 3 months. I'm sure you miss that beautiful Charger that is in Kate's garage. I would be happy to give you a ride in it, LOL. Take care.

April S.

Anonymous said...

Yeah Clark!! You continue to fight the good fight and you keep winning one little battle after another - being out of the hospital is wonderful. I know you will have many more battles to come - but you have been victorious over so much already - you will continue to fight and continue to win. Keep fighting the good fight - you are in our prayers and hearts every day!
Jim and Marilyn Fronk, Kansas

Bart said...

Great day Clark, You have been a great fighter during this whole battle and have walked out on top. Keep doing what you need to and all will be well. I am so happy that the day has come that you are out and can live on the outside. Hope to see you soon. Love ya Bart

Janeanne said...

Good morning, Clark. It's a great day to be alive! Hope you have been able to enjoy some of life's simple pleasures.

Found some interesting information for you to consider. It's from a website that lists 100 reason to be happy you are a man (instead of a woman). Hope you find a little humor in it. Have a great day!

1. Bathroom lines are 80% shorter
2. New shoes don't cut and blister your feet
3. Your barber doesn't rob you blind
4. You don't have to lug a bag of useful stuff around everywhere you go.
5. You never have to change your last name.
6. You rarely have to clean the toliet.
7. Chocolate is just another snack
8. You can enjoy a quiet ride from the passenger seat
9. You can wear a white shirt to a water park
10. One mood...all the time!

Kate Larson said...

Janeanne...love the 10 reasons to be a man. SO TRUE!

Clark...Hope your 1st full dat out of the hospital was most of what you thought it would be.

Kristin...I'm a phone call away WHENEVER you need me. Most likely I will drop what i'm doing to help. Don't feel like you are alone in the daily to-do's.

Rhonda...You are as strong and as much as an inspiration to me as Clark is. Hang in there! We will ALL pull together to help him be a happy well taken care of guy. Love ya and miss ya...

Anonymous said...

Congratulations Clark!! Your strength and courage are admirable...keep up the good fight! Continued thoughts and prayers.
The Likness's

Anonymous said...

AWESOME NEWS THAT YOU ARE UP AND ABOUT AND OUT IN THE WORLD!!! We send our Love and Prayers to All of you. May our Heavenly Father continue to pour his blessings upon you and your family.

Love the Gullickson Clan

Janeanne said...

Hi Clark, just stopping by to say Good Morning.

Temps are going to be near 70 degrees in ND today. I see it was about 75 degrees in UT yesterday which seems pretty warm for November.

Maybe since you missed all those warm summer days, the nice temps have been extended just for you.
Even if you have to sit in the shade, 75 is pretty nice!

I hope you are doing well. We'll keep praying for your continued recovery. Have a great day.

Janeanne said...

Have a great weekend, Clark! Hope your football team wins.

Remember...
Everyday is a gift, thats why they call it the present!

Cassie Solum said...

Aww Clark! I am so very happy to hear that you finally got to go home and that you are doing well. Sorry i haven't commented in a while ive been trying to get over h1n1 and i tell you what, it isnt fun. You look great! Dont worry about the hair, if it doesnt grow back.. you can have mine :) I think about you often! And I still pray for you. I hope you get back into the swing of things soon. *hug*
Much love,
-Cassie

Janeanne said...

Since you probably aren't going to be able to attend church today, thought I'd send you a short message to ponder along with my testimony that Jesus Christ is the Redeemer of the world; that if we put our trust in Him, all will be well - regardless the circumstances or outcome. Be well, Clark.

"Challenges, difficulties, question, doubts—these are part of our mortality. But we are not alone. As disciples of the Lord Jesus Christ, we have enormous spiritual reservoirs of light and truth available to us. Fear and faith cannot coexist in our hearts at the same time. In our days of difficulty, we choose the road of faith. Jesus said, 'Be not afraid, only believe' (Mark 5:36)."

Neil L. Andersen, "You Know Enough, Ensign," Nov. 2008, 14

Anonymous said...

Hi Clark

I'm glad to see that you are out of the hospital. I bet gaining weight will be a whole lot easier eating Kristin's good home cooking rather than hospital food!

Live your life... what great advice! Your life is destined to be something great! Keep up all your hard work! You continue to be in my prayers daily.

Carol in Kansas

Janeanne said...

Hey Clark. I see your football team won. Hope you enjoyed the game.

The weathern here is simply amazing! In our business, these kinds of temperatures can save us hundreds of dollars every day in fuel expense and keeps sales up. So, not only do I enjoy it personally, but it makes less stress at work! I hope it continues for as long as possible!

Hope all is well with you. Have a great week.