Another Answered Prayer - August 27, 2012

Hello everyone,

     I am so excited to update all of you on the most wonderful experience that I recently had.  I met my DONOR FAMILY!!!!!  Ruby had 2 beautiful children, a son Peter and a daughter Eleni and it was my privilege that they requested to meet me.  My family, along with my mom traveled to Kansas City, where the introductions took place.  For one of the first times in my life, I was at a loss for words (for those of you that know me well, I know you are in complete disbelief right now after that statement)........but I really was.  I struggled so much to come up with the appropriate words I would use to thank a family who chose to save my life, while facing a family tragedy.  They put the loss of their mother aside, and chose to DONATE LIFE.  Eleni said that when she heard her mother's liver would go to a woman her age with 2 children who had cancer, she said the decision was made for her.  Guess what, just saying "thank you" was enough, it really was.  Once I met them, that was all I needed to say.  The fact that I am doing so well, and am leading a normal life I think somehow brought some peace to their hearts, and made their decision the right one.  I hugged Eleni the instant I met her, we just hugged and danced in a circle, and cried.  They were just like I imagined, BEAUTIFUL, both of them.  

     Thank you all for the endless support that has carried me along this journey.  Meeting Ruby's family has brought me so much peace and joy, I am truly blessed.  As for my recent tests the CT scans continue to look good.  I will have 2 more this year, then I will have them every 6 months for 1 year, I believe.  I have labs once a month as well, and other than an increased bilirubin last week, they have been perfect.  The transplant coordinator called me to see how I was feeling, and since I was riding my horse at the time she said I must be feeling fine.  They thought the increase could be due to a virus I had, and we will recheck it in 30 days.  I thanked her for calling and reminding me that I had a liver transplant.  My scar is the only evidence I have, I really do feel great.  

     Since my last  blog update we found out that my daughter Gracie, who is 13 has juvenile diabetes.  She has not had to start taking insulin shots yet, but it is only a matter of time.  She has to test her blood sugar 6 times a day ;(  She will meet the challenge head on, Gracie is a strong kid.

     God bless all of you, and just know that I am truly thankful.  I will never forget......

All my love,

Trish

Post-Liver Transplant Update - April 16, 2012

 

Spring Greetings,

I am in amazement at how fast times does pass by. Next month, on May 15th, will mark 2 years since I found the cancer in my liver. I wanted to send an update to all of you, and I am thankful to say there is not much to report. Life after a liver transplant is no different than my life before. If I did not have a scar, I would not know that I had a transplant. I had my last follow-up CT on March 8th, which was unchanged from the previous. The protocol for my follow-up scans is a CT scan every 3 months for the first 2 years post op, then every 6 months, for I am assuming 1 year. I currently have labs once a month, and life is back to normal, and that I can tell you is a schedule that I welcome.

I recently sent Eleni, my donor Ruby's daughter an email requesting a picture of Ruby. I was please to discover when I got up this morning she had sent 3!!!! She is very busy right now caring for 3 young children, and asked me if I ever get to Kansas City? I almost got in my car, in my pajamas and slippers and headed southeast. I let her know, that I will meet her whenever she is ready. What a glorious day that will be, I will finally get to thank Ruby's family in person for their generous gift. I cannot wait to post those pictures.

Anyway, my life is uneventful. I am busy with work, and the kids activities, and looking forward to summer. I hope this finds all of you in good health and happiness, because in the BIG picture, that is all that matters. Thanks again for all of the endless support, the road would of been very rocky without it.

All my best,

Trish

My Donor - Ruby

Ruby

A note from Kim Ehnes - January 2012

Trish . . . .

I have been thinking of you relentlessly and was so grateful to see you had a new posting on your blog.

I'm thoroughly intrigued by your progress / story and most inspired by your ability to handle it all.

What a great New Year it is . . . . please tell your mother & sister they are in my thoughts as well.

In love, friendship & prayer -

Kim Shubert Ehnes

Holiday Letter - From Trish, January 2012

Blessings to All,

I have sat here several times staring at this blinking cursor and blank page, wondering, where do I begin? 2011 was a whirlwind of a year, that blended into 2010 in my mind. We faced many challenges that were outweighed by many blessings. It has been quite surreal.

As most of you know I was diagnosed with a rare primary liver cancer in May 2010, and received the “gift of life” on November 10, 2010 when I had a liver transplant. We celebrated the beginning of 2011 in the hospital where I received treatment for rejection. There were many bumps in the road along the way, but with the support of many, and a wonderful medical team the path has gotten smoother. I was blessed in June to receive my first letter from my donor family. I was overcome with the emotion of their loss, and gratitude for my gift. It has been a struggle that I don’t have the words to describe. I was honored when asked to speak at 2 different donor functions, celebrating the families that choose to donate life when faced with tragedy. Their courage is truly amazing. My family cannot express how thankful we are for Ruby (my donor) and her family, thus another blessing.

Peyton who became a teenager in May when he turned 13, is still a pretty good kid. He entered Junior High, and continues to love sports, fishing and hunting. He has mastered the skill of annoying his sister, much to her dismay. He is helping coach the younger boys in basketball, and continues to raise some calves. He was bottle feeding 8 calves last spring twice a day. Peyton just loves to be outside setting traps, shooting targets, and playing hoops. He actually set up his deer blind on the pond and proceeded to ice fish. It was quite a sight. I expect Jeff Foxworthy to start filming a new episode soon, right in my back yard.

Gracie was 12 in July, and has really grown up this year. She loves all sports, and shoots hoops and plays volleyball off the roof for hours at a time. She continues to compete in horse 4H and junior rodeos. I am so thankful she enjoys riding, because I sure love her company when we hit the trail. We travelled to Halsey forest in October for a 2 day trail ride. Gracie was a trooper, as we rode for hours in the rain. She is a wonderful helper around the house, and babysits for several families. If we “scout” for deer or any wildlife, Peyton will ride as well, with binoculars in hand. Both kids have been very strong this past 18 months through a lot of uncertain times. I am very proud of them. They have lifted my spirits many days.

Larry has faced his own challenges this year when his boss announced his retirement, which meant he was selling the company. On July 8th, he was officially unemployed when he chose to decline the job offer from the purchasing company. The group rebounded and started working for Gavilon, creating a new branch called MicroSource. It has been a lot of work getting started, but what is the journey of life without its many challenges to build character. There were days we wondered just how much character we needed. Being the caretaker of a liver transplant recipient is not for the weak. He met the challenge head on without hesitation. I am very grateful. He continues to enjoy golf, and was able to travel to Michigan for the Nebraska game with family and friends.

As for me, I continue to work for Sound-Eklin installing ultrasound systems for Veterinarians. Sound has been an amazing company, providing me with unending support throughout many surgeries and hospital stays. I don’t have the words to express my gratitude, my cup truly runneth over. My job is my salvation, and truly a lifesaver. I found my own cancer while scanning myself during one of our equine labs, yet, another blessing.

Throughout this crazy holiday season, and the beginning of the New Year, remember to be thankful for all of the things we take for granted. So many have lost loved ones this year, and I know the holidays leave them with heavy hearts. Our prayers were answered when we won another battle for Tracy, my sister who was murdered 11 years ago. Another appeal was denied, and we are so thankful for that decision. We miss her warm spirit and kind heart, which we see in her grandchildren, Libby 6 and Treyce almost 4. My hope for 2012 is to meet my donor family. They have requested to have direct contact with me and I gladly accept. The journey of life continues, what a ride it has been so far.

The Grotes

Note from Pastor Sharon - November 17, 2011

Trish-

Just checked your latest blog.  So glad you are doing well.  God has surely walked with you this past year.  We are prayerfully holding up a young mother, Kendra.  She had a stem cell implant last week.  It has been touch and go for her the last year.  Stay well, and continue to walk with your God. 

Pastor Sharon

From Kelli - November 9 , 2011

Trish,
Wow! This day feels surreal. Can't believe it has been a year. Brings back so many feelings... excitement, disbelief, fear, worry, joy, anxiety, happiness! Until that night, it was just waiting and wondering, never really putting my finger on HOW I would actually feel when they called you. Then on my way to Omaha, I was surprised to have all those feelings and I didn't realize I could feel so conflicted. Am I happy? Yes, of course, she is getting a new liver! Am I sad? Of course, will she be okay during the transplant? Am I worried? Nah, not me, I never worry! HA HA!!!!

I have it written in my planner from last year, "Got the call, 5:17pm". I know you received the call before me, but I'm pretty sure I beat you there! Now, looking back over the past year and EVERYTHING you have been through, it feels great to say that those feelings are definitely excitement and happiness. You have been so strong and had the best attitude, even though I know there have been times when you felt broken! You have proven that you can handle anything life throws your way and I am so proud to be your friend.

Love you!
Kelli

A Year of Reflection - November 9, 2011

Good morning to all of you,


As I stare at the date on my computer, I cannot believe a year has come and gone since my transplant. One year ago today, around 5:00 pm I received the call from Jamie the transplant coordinator that Dr. Botha would like to offer me a liver. Today I celebrate life, and mourn for Ruby's family, my donor. I know their hearts are heavy this week, with the loss of a mother, and grandmother. I received a wonderful letter in the mail this morning from Donate Life, Ruby's family has requested to have direct contact with me. I am so thrilled to have the opportunity to communicate directly with them, and possibly have the opportunity to meet them one day. It could not of arrived at a better time. My first letter was on my birthday.

Thank you all once again for your unending support throughout this journey. My good outcome had a lot to do with many wonderful friends and family members, and I am so thankful for each of you. I am doing very well, all of my labs have been normal for months now. My last CT scan of my chest, abdomen, and pelvis will be next week, so I am praying for good results.

Although this year has given me a chance to live, a very wonderful friend of mine lost his battle in July following his stem cell transplant in October of last year. I think of him often, and am so thankful to have known him. It was my privilege to have him touch my life. My thoughts and prayers go out to Celeste and her family today and everyday, especially this holiday season.

One last quick update on the court appeal that is going on with Tracy's murderer. His appeal went to the supreme court last week and was heard by 7 supreme court judges, and we are waiting to hear on that ruling. I pray everyday that we can put this to rest for awhile, and give everyone a much needed break. I have high hopes that it will be denied, however I never dreamed it would go this far, if I am wrong however we will cross that bridge when we come to it.

I wish you all a wonderful holiday season, and I am thankful for all of you!!

Love,

Trisha

Transplant Reunion - A Word From Trish - August 18, 2011

Hello all,


Just a quick update for all of you. You know the saying "no news is

good news", that is true in my case. I have been feeling great and am

back in the swing of things. I am very blessed to be feeling

wonderful, with no real issues to even mention. At the end of July we

attended the transplant reunion, and it was a great experience. It is

amazing to see so many blessed people in one room, it is almost

surreal. Due to our generous donor families, they make that yearly

reunion possible, and I am grateful.



My CT in May had shown a new "area" in my liver, as well as multiple

lung lesions. They mentioned 15 lung lesions, which startled me

somewhat because I thought there were 5 or 6. Dr Sorrell phoned me

after the tumor board met to discuss my results. They did not feel

the new lesion was worrisome, and they chose to wait and do another CT

in August, so the wait was on. I had my follow-up CT last week, and

Dr. Sorrell called me right away with the results. The new area in my

liver was an dilated bile duct and they feel it will reabsorb, as for

the many small lung lesions they are stable. What this means is we

will do another CT in November, which believe it or not will be my 1

year anniversary.



I mentioned to Dr. Sorrell that I heard from my donor family. He said

that he knew I was surprised that my donor was 80 years old, however

her liver was very healthy, and I was "on borrowed time". I needed

the transplant to prevent the risk of the cancer spreading, and if

that happened, a transplant would not be possible. I am so grateful

for Ruby and her families choice to donate life in their hours of grief.



I have to say this update is pretty uneventful, just like I like

them. I hope all of you have enjoyed your summer, and have been

enjoying some cooler weather. I traveled to Texas last week for work,

and was thrilled to have the chance to stay with my wonderful friend

Joni Watkins and her family. It is so very hot and dry there, I hope

they get some moisture and relief from the heat soon. Take care

everyone, Fall will soon be upon us, good horseback riding weather.



God Bless You all,

Trish

A year has gone by...Happy Birthday Trish!!!!



Click on picture to enlarge image.



Donor Family Gift - June 3, 2011

Good Morning,

I am so anxious to correspond with all of you this morning. Yesterday I received a wonderful letter from my donor family, and as I sat and read the words with my children the tears of joy were overwhelming. With Memorial Day just behind us, I know the family has so much heaviness in their hearts. It is such a wonderful letter, I want to share it with all of you. I will also have lovely Whitney post it to the blog. As for my health, my CMV counts came back down, and I have been feeling great. I will now only have labs once a month, which is a good thing, because by the look of my calendar I don't have time to have them more often than that. My next follow-up CT will be in August. I hope you all enjoy the letter as much as I did, it was such a blessing to me, and I am so thrilled to have received it. Once you read this letter, you will know why it will be my honor to take very good care of this liver.


Dear Trisha,

Thank you for your kind letter. I received it shortly after the holidays. It was comforting to hear your amazing story and know that you are doing well.

My mother Ruby just celebrated her 80th birthday a few months prior to her brain aneurysm on November 8th. She moved to Iowa to live near us after my 3 year old son was born. My mother lived her life giving to others. If I had to describe her with one word it would be "devoted". She was the oldest of nine kids, and helped raise many of her younger siblings. She dated my father and waited 17 years, through World War ll to marry him. She left her job at a university to stay home with my brother and myself. She also cared for my ailing father for many years until he passed away when I was 21. My father was her first and only love. My mother enjoyed cooking, sewing, reading, playing bingo, and completing any kind of puzzle, especially crosswords. She was a dedicated Grandmother to her only grandchild with which she had a close relationship with. She spent countless hours with him doing any activity to put a smile on his face, which put a smile on hers.


When the doctors told me our mother's liver would be donated to a 40 year old mother of two children, my first words were "Oh, it's someone like me". From that moment, our decision felt right. Knowing my mom was helping you made our loss more bearable. I know my mom will live forever in my heart. I pray that her gift blesses you with a long healthy life and you too can be a devoted grandmother someday.
Our family shared a funny story when we found out, to our surprise, that her 80 year old liver was very healthy and could be donated. We joked that it was because she never drank and refused to take any medication!! She was very strong willed and when it came to taking medication.


My husband and I have been married for 5 years. We met later in life and I will be celebrating my 42nd birthday this year. We have only one 3 year old son, and at our age can only pray for more. I stay home with my son after working over 12 years in the market research industry.
I hope we can meet someday. I'd love to exchange pictures with your family and get an update on your progress.


Best Wishes,


Eleni


It would be a dream come true to meet Ruby's daughter Eleni, and her family.

I have to go ride horses with Gracie today, and her friend Camille. They are practicing for the Junior rodeo this weekend. Today is my birthday, and this letter is the best gift I could receive, I will treasure it forever. God bless you Ruby, and your beautiful generous family for the priceless gift of many birthdays to come. You will forever have a place in my heart, and of course my liver. I was getting to serious, and we must have some humor. Thank you all for your continued support, once again, my cup overflows with hope, I sent the fear packing long ago, and peace took its place.

I need to ask for many prayers for my friend Scott Wells who I have mentioned before. He had a stem cell transplant before I had mine. He has been in the hospital for over 5 weeks and has been really sick. Please keep him in your prayers for healing and strength. He is surrounded with love by an amazing woman, Celeste, and she needs our prayers to. Have a wonderful weekend.

Love to you all,

Trish

Note from Peg Holen - May 21, 2011

Trish,

Just read your last few postings. Kept checking in March and was concerned when there was nothing posted. When I inquired, locally, I was told you doing fine and 'no news was good news'...was sorry to hear of your April trials.

I must say I am impressed with your team of doctors and their persistence to locate the root cause of this, hopefully, last obstacle to restored health.

I'm sure both you and your husband's medical background have been beneficial in sorting through the information and processing it with intelligent questions in return. All things for a reason.
Am delighted to hear that you have turned a corner and brighter days are coming more frequently and easily.....may it ever be so.

Best wishes for continued healing and restored health,

Peg Holen

On the Mend - April 26, 2011

Good Morning,


What a beautiful morning it is. The sun is shining, and as I look out my window to the north the pastures are greening up. A sure sign that spring is here. The warm weather is just taking its sweet time getting here. I sent Gracie off to 4-H last night, and I think her horse was shivering. We have been blessed with some good rainfall, so if we get a few warm days it will really be green. A week ago as we headed off to Omaha, there was snow on the ground. Welcome to Nebraska.

I am finally feeling human again. No nausea, no headaches, and no fevers for several days now. Each day brings me new strength, and more energy. I had lost so much in the month of April. As I look forward, next month will mark 1 year that I found all of those tumors in my liver, and looking back I am so thankful for that dreadful day. It was one of those many blessings that I have experienced this past year. It is has been a ride that I will never forget. Thank you all once again for the continued support. You have made this journey bearable as you have carried me through many of my challenges with your e-mails, cards, and phone calls. I believe that I am going to put these challenges behind me, and never look back. That is where the hope comes in, it has brought me this far.

Bless you all,

Trish

Finally a Diagnosis - April 21, 2011

Good Afternoon,


Well it has been a long week, but well worth it. The transplant team admitted me last Friday really not knowing what was going on. I was so weak and sick, I did not even put up a fight. I had multiple tests including an abdominal ultrasound, 3 blood draws a day, and CT of my head. With my severe headaches and nausea, they became quite concerned that I had meningitis, which can happen at this point post-transplant, so they say. So on Sunday, I had my first and hopefully my last spinal tap. It came back negative. Dr. Shafer, one of the hepatologists on the liver team, and one of my favorites, walked in my room and said, Grote, you're killing me. They were baffled. I never seem to take the easy road. Then on Monday after numerous tests, they found that my quantitative CMV came back positive. This value for Cytomegalovirus should be ZERO, mine however was 450,000!!!!! I contracted this virus from my donor. About 80% of us carry it, but it usually stays dormant and causes no problems. But with my compromised immune system, it reared it's ugly head with a vengeance. They were going to send me home with a central line, and I was going to receive IV Ganciclovir, which is an very strong anti-viral for 3 weeks. However the liver team was concerned with the risk of infection from the central line, and wanted to try the oral medication Valcyte first. The bad part of taking these meds in this high dose is it affects my white count, with is already down to 3.0, and my neutrophils are only 1,000. Needless to say, I am so susceptible infections, that I will be staying home for a few weeks. If the Valcyte brings my numbers down too much, they will then switch me to the IV medication. With that large viral load, it will take some time to bring that number down. She also said that I can still feel poor for another 2 weeks, so that is something to look forward to. I am ready to meet this challenge head on and get back on the road to recovery. I hope I can convince my body of that.


This is bound to be one of my last bumps in the road, I am convinced of that. I am very weak, but it is so nice not to run a 103.5 fever, with a severe headache, so things are looking up. Thanks again for all of the love and concern. I am looking forward to sleeping in my own bed tonight, that is for sure. My mom has been awesome taking care of the kids, like always. I sure miss them when I am gone. I would like to thank the Kizer's and Uncle Al and Nolan for taking the kids here and there when they needed it. I hope to repay the favor some day. We couldn't get through this journey without so many caring people, I am so thankful to be surrounded by so many friends and family.

Bless you all,

Trish

Back to Omaha - April 14, 2011

Hello Again,


I wanted to drop a quick note and let you all know we are heading back to UNMC early in the morning. They offered to put me in the hospital today if I wanted to head down, but I chose to get the kids settled and head down tomorrow. I will have a liver ultrasound, more labs, an appointment with infectious disease and an appointment in the transplant center. I have had a little cough, nothing hardly noticeable, and now it has really gotten worse. So maybe that is it, the jury is still out. We really just want to try and get some answers so I can start to heal. Larry may just drop me at the door and ask me to call him when I am better. He has been very patient and kind, but I know it wears on everyone and I hate to be any type of burden. I will update you as I know something, and I am praying for answers and the wonderful healing. I have been so very fortunate through this whole journey, and I continue to be thankful for all of my blessings. This day too shall pass.

Love to you all,

Trish

The forever flu.... April 14, 2011

Hello Everyone,


I thought I would drop a quick note to you all and update you on what has been going on. Just when you think it is smooth sailing ahead, sometimes we hit some rough waters. That is where I am right now. Back in March I had the stomach flu and severe headaches for 2 days, which was awful, but I just thought it was a bad case of the stomach flu. Until it came back a couple of weeks later, and has now lasted for 10 days straight. I have had nausea, vomiting, severe headaches, abdominal pain and now the past 4 days I have had high fevers. They have been running tests, CT scans, ultrasounds, MRI, blood cultures, urine cultures and so on and so forth. My liver numbers have never looked better, which is great. But they are at a loss. I had some free fluid in my pelvis, and they were concerned that I may have appendicitis, but the CT scan did not show any evidence of that. I do continue to have a biliary fluid collection in my liver, and that is the next thing they are going to look at closer. The transplant team are going to have the interventional radiologist compare my recent CT with my previous one in February and see if there are any changes. If so they may consider draining it. They are unable to find a cause for all of my symptoms, and I am tired of reliving every day over and over.

They have made some adjustments to my Prograf, which is my anti-rejection med. They normally keep those levels at 5-6, and my level ran anywhere from 10-12. They were keeping my level higher because of my bad rejection I had in December. They thought this might be causing me to be sick. Larry told them it is like I am being poisoned. I asked him if he had anything to tell me. He said we spent too much time and money to get a liver transplant, that he wouldn't poison me now. So they decreased my Prograf to 2 mg a day, and added a new med to go with it. I no longer take prednisone either, so that is great.

This is the first time in over a week I have been able to do much typing, so maybe I am going to see the light at the end of the tunnel. Although I usually feel the best in the morning, and then all hell breaks loose by late morning.

I will keep you all posted. I was not going to send an email, but Gracie had posted on her facebook account that I was sick, so I had enough calls and emails I thought I would explain in one note. On a separate note, we went to Omaha last Sunday for a Donor Family Reception that I was asked to speak at. I had no idea how I was ever going to be able to stand up on that stage and get through it, I was so very weak. But the good Lord blessed me once again, and helped me through it. There were 550 donor family members there. It was a very emotional day, but I was so honored to have the opportunity to express my overwhelming gratitude. I am still hopeful that someday I will meet my donor family. I hope this finds all of you well. I look forward to one good day, it will be a start, I will take what I can get.

Bless you all,

Trish

CT Scan - Update: February 19, 2011

Hello All,


I am finally sending out a quick update following my CT scan. A couple of days following my CT I decided to pick up the ultrasound probe and look at my liver myself. I have to admit I was a little reserved in doing so, since the last time I did this I found my cancer. The first thing I see is a complex cystic structure, in the right lobe of my liver. I just thought it was a resolving hematoma or collection of blood from my liver biopsies. After several days had passed I called UNMC for the CT results. They saw the cystic structure as well, however it is was not a hematoma, it was connected to a bile duct in my liver. The internal medicine doctor did not know what to tell me, and it took a couple of days to get ahold of my surgeon, Dr. Botha, and he knew exactly where it was and was not concerned. Thank goodness. I was concerned there for awhile that I was looking at another procedure, and I was not looking forward to that.

Since then, they have decreased my anti-rejection medication to only 4 mg per day, and my prednisone is down to 10 mg per day. The decrease in medication is always great news.

I am feeling 100%, without any side affects at all. I am back in the swing of my job, and really enjoying the change in routine, other than labs and Dr. appointments.

We had some sad, sad news this past week. Larry's cousin Jamie was murdered by her boyfriend, who also took his own life. Her aunt and uncle are the kind people that we lived with once I got released from the hospital, Jim and Shirley Simmonds. This really hits home with me, and my heart goes out to them. The pain and heartache that comes with such a tragedy is so overwhelming.

We found out this week that Tim's (the man who took my sister's life) last appeal was denied, so that is behind us one more time. We know there will be more down the road, but it is over for now.

I continue to be blessed by all of you and your support, and I am so thankful.

All my love,

Trisha

No News is Good News, February 2, 2010

Hello everyone,


I am just sending warm wishes from sunny Florida to all of you. Even my friends in Texas are frozen. I have been on the road since Monday doing installs in Knoxville, TN and Sarasota, FL. It sure feels good to work again, and the 80 degree temperature sure doesn't hurt either. I saw Dr. Sorrell last week, and although he wants to see my liver functions return to normal, they are not going up, and that is good. They are close to normal. They did reduce my prednisone, which is a blessing. I am flying back into Omaha tonight, and will have labs in the morning at UNMC. In the next couple weeks I will have my 3 month follow-up CT scan of my chest, abdomen and pelvis. I will have them every 3 months for a year, to make sure the cancer does not return. In my mind that is not an option, and I try not to worry about it. I feel great. Without the scar and handful of pills I take daily, I would not know I had a liver transplant. For those of you that are wondering, I have not heard back from the donor family. I will continue to write, and maybe someday I will.

I would like to ask all of you to add Forrest Stone Allen to your prayers. I work with his father who is an equine vet in Virginia. I have had the pleasure of working with his mother Rae as well. She is the dolphin specialist I installed for at Dolphin Quest in Hawaii last February. Their son Forrest was in a snowboarding accident a few weeks back and suffered a brain injury, as well as 2 broken vertebrae in his back. They will be moving him to a rehab center in Atlanta tomorrow. I pray for his recovery everyday. He is blessed with a wonderful support system, and I know how important that is for a successful recovery. When we have hope, we can conquer the fear. You all give me hope, and I want to pass it on to Forrest.

Follow his blog at www.forreststoneallen.blogspot.com if you are interested. He has many challenges ahead, but from what I read about him he will rise to the occasion and face them head on.

Bless you all,

Trisha

Hua Sends His Love - January 16, 2011

Dolphin Quest / Quest Global Management

dolphinquest.com

Just Keep Swimming - January 15, 2011

Hello All,


Just a quick note to confirm my release from the hospital today. I will be going home on a higher dose of steroids, 40 mg a day. They hope to start weening me down again as early as this next week. Dr. Botha, my surgeon was on rounds today. I just love him. He is very pleased with everything he is seeing as far as my liver numbers go. He actually said having the one bout with rejection can be a good thing. Even though I was treated for it 2 different times, they consider it 1 episode. It gets worrisome when you reject 3 times, then the chances of liver damage are high, and being compatible with the new liver decreases. He did confirm that the serum sickness is rare with liver transplants, about 1 case a year. I guess I helped them meet that statistic early in the year. I asked the resident and surgeon about any restrictions that I have, and they said there aren't any. I am cleared to resume any activity I was doing prior to my transplant. That is good news to me. None of this was caused by not resting enough, or doing too much too soon. I am just experiencing some of the complications that come with a liver transplant, and then the side affects of treatment given for those complications. Like Dr. Sorrell said, I have to remember how well I did with the transplant, and that complications can occur. I realize this, I was just hoping there wouldn't be any. Just like a good friend (who was recently diagnosed with breast cancer) quoted from the movie "Finding Nemo", when Dori the fish said, "just keep swimming" and that is what we have to do. I continue to be so thankful for all of the blessings, and the gift of life I have received, that never changes no matter how bad my day is. You are all among my many blessings, and give me the strength to swim against the current.

God Bless You All,

Trish

Much Better Morning - January 15, 2011

Good Morning,

I woke up this morning and I can raise my arms without assistance from the other, and make a fist, YAHOO!!!!! Yesterday, I had to use my left arm to help raise my right just for a blood pressure. I saw much improvement last night, but I was a afraid after being in bed all night I would wake up with stiff and painful joints once again. It must be this wonderful pillow top, top of the line mattress that the hospital has. It cured me.....NOT. I guess I have to give credit to the wonderful steroids I am taking. To all of my friends out there with Rheumatoid Arthritis, and there are several, I am so sorry. I have felt your pain, and my heart goes out to you. I am fortunate mine should go away, I wish I could do something to take yours away. Now I know how it feels when Scott's jaw cramps up when he tries to chew. Although it usually doesn't affect his speech, the BS still seems to run out easily. I guess I am feeling better :)

I hope to be on my way home today. My kids both have basketball games tomorrow and I hate to miss them. They are still waiting on a couple of blood tests that they ran for some rare virus. Once that is back and is negative, there should be no reason for them to keep me. I will be out of isolation for sure.

Enjoy your weekend. Thank you for all of the prayers, they are wonderful. If you could add to your prayer list, one of my teachers from my high school, Sharen Wroblewski, who has been so very supportive through this journey of mine, is sending her son Cory, who is an Army pilot back to Iraq today. This will be his second trip. Cory's wife Hope, who is also an Army pilot, will be deployed to Iraq at the beginning of February. Their service is so important to me and our country, and I appreciate them very much. We just want them home safe. I will keep you all posted, thank you for all of the support. You inspire me.
Love,

Trish

What Doesn't Kill You Will Make You Stonger - Jan 14, 2011

Good Evening,


I have thought about that subject line several times in this past 24 hours, and I remind myself that this day too shall pass. On Wednesday I had noticed a slight sore throat and some stiffness in between my shoulder blades and neck later in the day. But I pushed that off on pitching hay to the horses and cattle earlier in the day. By the time I got home Wednesday evening after driving about 45 mins, I was unable to close my hands when I let go of the steering wheel. It was all so bizarre. I got out of the car and it seemed that all of my joints were painful.........what the hell !!!!! Those were my exact words. I phoned the transplant coordinator on call, and she had was not familiar with these symptoms, and wanted me to go to the ER. We had just gotten the kids to bed, and it was so cold, I chose to go to bed and hit the clinic first thing in the morning. After lots of blood work, a chest x-ray, strep, and influenza tests, everything was negative. I was also having a lot of nausea to top it off. Getting up and walking was a chore. The transplant team wanted me down in Omaha right away to be admitted, they thought for sure it was something called SERUM SICKNESS, but until other viruses were ruled out I would have to be in isolation. The serum sickness is a rare side affect of the Thymo treatments I had. The serum sickness usually comes on weeks after the treatment. If it is uncommon, you can bet I will get it. The treatment is once again some steroid treatment. Nothing like I had for the rejection, they are giving me 40 mg a day. I am feeling a lot better tonight. My hands are still bothering me some, my jaw seems to be much better. It was even hard to chew food, don't worry I could still talk.

The good news is, once I am better it should not reoccur, unless I need future Thymo treatments. There is more good news, my liver functions are looking great. My good attitude slipped a little yesterday, and I will be the first to admit it. I melted down, but I am trying to find the positives and focus on those. I should go home tomorrow, they are still waiting on a few more blood tests to come back first. Once everything else is ruled out, and the steroids seem to help, that is how they know it is serum sickness. One of these days I am just going to send out an e-mail to say hello, and that my life is so boring and uneventful with nothing to report. I hope all of you are doing well. We got a little break from the frigid cold weather, and that is always a relief. Thank you all for your support and prayers, it all means so much.

Love,

Trish

Going Home - January 6, 2011

Hello again,


I got some good news today at clinic. My liver function tests continue to improve, therefore I have been released to go home. I will need to have my labs drawn 3 times a week in Kearney, for at least 2 weeks to make sure everything stays where it needs to be. My prograf level (anti-rejection med) was a little high so they did decrease my dose. We will pray for good numbers, and I will see Dr. Sorrell on the 25th of the month. I am working tomorrow, then mom and Peyton will head down to pick me up. I am excited to see the kids, and I want to get home before it snows. Sounds like it is supposed to start on Saturday, and possible heavy and blowing snow on Sunday. Bring it on, as long as I am home. Thank you all for the prayers, and messages. Your support continues to amaze me. Have a wonderful weekend.
All My Best,

Trish

Living Life in Limbo - January 5, 2011

Good Morning,


I wanted to drop a quick message to all of you. My labs continue to improve, so yesterday they chose to pull my central line due to risk of infection. Hopefully my labs will continue to come down, if not, you guessed it, they will put in another central line and start another course of treatments. But I have hope that they will return to normal. I just had labs today, and tomorrow I will have labs once again and clinic in the afternoon. If everything looks good, I think I will be released to go home, and have labs 3 times a week in Kearney. I am praying for this, I miss the kids so much. I know they are in good hands with grandma, and that is a huge blessing. Larry had a sales meeting in Houston today, so I sent him along his way. There is no reason for both of us to sit here waiting. It will do him good to work a little, and have a break. Although he has not complained, I see him getting a little restless.

Our niece Libby and her husband Justin had us over for dinner on Monday night, and we had a wonderful meal and a good visit. Tiffany, Libby's sister was also there. They also went to dinner with us last night, along with my friend Pat, Jim and Shirley. I am so fortunate to be surrounded by so many caring people. I am doing some work today and trying to keep myself busy and sane. I feel so good, I cannot even tell I had a liver transplant 7 weeks ago, so it is hard for me to be patient some days. Jim and Shirley have a dog named Radar, and he and I have become good friends. You guessed it, I had to attach his picture. We have been walking in the afternoons and checking out the neighborhood. He is some dog I tell you, full of personality. I hope all of you are having a great start to a New Year, and a wonderful week.

Trish

To Trish from Michelle and Crew at Dolphin Quest - Jan 2011

Feel the strength and healing spirit as we pass it from our family to you and yours.


Love Dolphin Quest.




Michelle Campbell, MS

Director of Marine Animals

mcampbell@dolphinquest.com

Last Thymo Treatment - January 3, 2011

Good Morning,


I am on my last Thymoglobulin treatment, with good music onboard to help the time pass by. I continue to tolerate them for the most part. Yesterday I woke up with a rash so they gave me more IV Benadryl when I came in for labs. They were not concerned, however they extended my infusion time to from 4 to 6 hours today. I forgot to mention that they used a GE Logic E ultrasound unit to guide the needle for my last liver biopsy. This is the same ultrasound unit I install for the Equine Vets. I offered to find the spot for them, in hopes of getting a discount. I feel really good today, and hope to be released to go home tomorrow following my labs. If so they will remove my central line tomorrow as well. The Thymo is bringing my liver numbers down nicely. They are reaching normal limits. The real trick seems to be keeping them there on oral medication alone.

The kids returned home yesterday so they can head back to school tomorrow. It is so quiet without them. They probably don't feel like they had much of a vacation, spending most of it away from home in a hospital. They never seem to complain, and just continue to roll with the flow. I am very proud of them. We went to Lisa Bartenhagen's for dinner on saturday night. Lisa and I graduated from UNMC together, and she is the clinical director of the Radiation Therapy program here at UNMC. It was a nice visit. Lisa and her husband Mike have a beautiful home in Gretna, with 3 wonderful children. Gracie has spent some nights there since my transplant in November. Tonight we are going to our niece Libby's home in Papillion for dinner. We are being taken care of very well.

I wish you all a Happy New Year. I am hoping for a healthy New Year, without liver rejection. I continue to count my many blessings, and pray for a boring and uneventful 2011.

Trish

Energizer Bunny - December 31, 2010

Good Afternoon,

I am about 15 minutes from completing my second Thymo (ATG) treatment. Once again my body has tolerated it very well, and I have had no adverse reactions. My liver function numbers have improved once again. My AST went from 127 to 81, ALT 223 to 179, Bilirubin 3.3 to 1.9, WBC 17.5-7.5 which is a normal value. They seem very pleased with these improvements. It has been a long day for the kids in a small room, but they did survive, as did mom. Thank goodness for computers and a netflix account. Tomorrow we will come back to the UNMC treatment center for central line care and more labs. My next treatment will be saturday, and they will diffuse it in 4 hours instead of 6. We were fortunate to have Larry's cousin Gary bring us all a wonderful lunch, and stay for a great visit. We are staying with the Simmonds family in Pappilion while we are here, and the hospitality is first class. I wish you all a good day and a Happy New Year. I hope to pass on good news from here on out, I have the faith. Bring on 2011, farewell to 2010, it has been some journey.

Love,

Trish

Power of Prayer - December 29, 2010

Greetings to all,


The power of prayer is a wonderful thing. I had my first Thymoglobulin treatment last night which infused over a 12 hour span, and it went wonderfully. The worst part was the blood pressure cuff inflating every 15 mins for 12 hours, which makes sleeping a challenge. I had no side affects from the long list that they gave me before administering it, which was a huge blessing. I have to admit I was a little scared, and I don't think I scare easy. The Thymo meds can come from the thymus glands of rabbits or horses, even though my heart is partial to the horse, my bag hanging on my IV pole stated rabbit right on the bag. Hey if it works, I can love rabbits too. I even had carrots for lunch.

After my liver biopsy yesterday I had them cap my IV thinking that if I was readmitted they wouldn't have to start another IV. It was a good thought, but the treatment is quite potent and if they infuse it through the vein in my arm it can damage the vein, as well as my arm. So before my treatments could begin they had to insert a central line into my subclavian vein, located near my clavicle. It will remain there until my treatments are over. My next treatment will be tomorrow, then maybe saturday and monday. The good news is they are releasing me from the hospital and I will come in as an outpatient for labs and the Thymo treatment at the Lied Transplant Center. They will be infusing the treatment over a shorter time tomorrow, and that can make a difference on how I react to the meds. But I am confident that I will do fine. My liver functions looked much better today after only the one dose, so that is very encouraging. I am learning the meaning of patience, but I think I may be a slow learner. I am working on my installs coming up, and trying to be organized so when the time comes I can get back to work. Or make it easier on the one who will fill in for me. It is really tough to sit here and have them convince me I am sick, I feel really good.

Thank you all for those wonderful prayers and support that are such a huge blessing in my life. You all give me so much hope, which allows me to overcome that dreaded fear that creeps up every now and again. I am just trying to convince this liver that we can get along. During my biopsy yesterday, Dr. Shaffer let Larry and the kids stay in and watch. Peyton chose to stay back a ways when he saw how long the needle was, and give me a thumbs up. But you will not be surprised to learn, Gracie stood right behind the doctor holding the band-aid. They both lift me up everyday.

All My Love,

Trish

Rabbits...helping to cure Trish - December 28, 2010

Well, I am sure some of you know by now that Trish is back in the hospital. Her body continues to reject the liver. We were here a week ago and they administered 3 aggressive steroid treatments. Unfortunately it wasn't successful. Tonight she starts on a different immunosuppressant called thymoglobulin (a product from the gland of a rabbit). This is very aggressive and will really knock down her immunity system. This can come with some negative side effects, so they are going to administer the first treatment over 12 hrs. The next 3 treatments will be given over the next 4 to 8 days depending how her body can handle it. Hopefully this allows the oral anti rejection meds to take hold and keep rejection in check. This isn't unusual, its just the next logical step to stop rejection.

Keep her in your prayers.

Major Speed Bump - December 27, 2010

Me again,


Well I was very fortunate to be home for Christmas, and I am going to hang onto that blessing............as I head out for Omaha tomorrow morning at 5:30 am for another liver biopsy. My liver functions are higher than they were when I was in the hospital, and my bilirubin is creeping up again as well. Not the news I wanted by any means, but I will keep my chin up and get back down to the Med Center for what I need to have done. This process is frustrating, but I realize it is all a part of the roller coaster ride. If the biopsy once again shows moderate rejection, I will be readmitted to the hospital for more steroid treatments. If it does not show rejection, I will have to stay in Omaha to have my labs drawn for several days, or a week, or who knows. The labs from Kearney, especially my Prograf (anti-rejection med) levels are taking too long to get back, and the surgeon is quite concerned. The holiday may have played a part in this as well. I knew I didn't want to call the transplant coordinator today, but with some encouragement I did, I just wish the news would of been better.

I am so very thankful for a beautiful Christmas holiday with my family, that was priceless. The food was wonderful, and I got to see one of my oldest friends Jill who now lives in Texas. I really feel good, and it is hard to believe my numbers are so out of whack. I was tired yesterday, but I had wonderful care from everyone here. Thank you all for all of the beautiful Christmas cards, e-mails, and phone calls. The support is endless, and it lifts me up to face the next challenge.

All my love,

Trish

Home for the Holiday - December 24, 2010

Merry Christmas,

We got some unexpected news today, I got to leave the hospital and go home for Christmas. The way my doctors were talking yesterday the chances of me getting out today were quite grim. I was admitted Wednesday afternoon following my liver biopsy with moderate rejection, which I thought was a small bump in the road. Dr. Sorrell said, it was a "moderate" bump in the road. He reminded me how well I have done, and not to get down over the rejection, we will get my medicine on the right track and be back on the right road to controlled liver numbers. He said due to the stronger meds they use today, they no longer lose patients to rejection, which is promising. I had my 3 days of IV steroid treatment, 1,000 mg per day, and they could not give me any more. My numbers had improved more than they thought they would this morning so I was released. I will go to Good Samaritan Hospital in Kearney tomorrow and Sunday for labs, then every day next week at the clinic to monitor my labs really close. If for some reason they increase again, I will have to have another liver biopsy, and go back to Omaha next Thursday. So we will pray for good numbers. For now I am going to enjoy being home with my family for Christmas. I was praying that I would not have to call home and tell my kids I would not be home for Christmas, another prayer was answered. Once again my care was wonderful, and I continue to feel great. I had some nausea earlier in the week but that has passed now.

They gave me no restrictions, but I will rest for this week. With all of the steroids that drives my immune system down, so I will be careful. Thank you for all of the continued support. Some of you, I won't mention any names (Kelli) cannot seem to follow directions very well. When she learned of my biopsy she told me she didn't have to work and would try to make it. I told her she had done so much, and I would have mom, Gracie, Tucker and Daniell there, so I really wanted her to stay home. As I was preparing to have my biopsy the nurse comes back and tells me I have a visitor, I thought it was Tucker, but no it was Kelli. I have said it before, you can't beat her off with a stick, and her support as been amazing. I love you Kelli, and thank you again. You are such a true friend through and through, but I still told you to stay home. :)

May you all have a glorious Christmas,

All my love to you,

Trish

Bump in the Road - December 23, 2010

Hello all,


I am writing a quick note from my hospital bed. Yes, you heard me right I am back in the hospital. They have been concerned about my liver function labs increasing, and even after a change of my meds they continued to climb, so the team requested that I have a liver biopsy on Wednesday morning. That worked out well because I was already flying into Omaha late on Tuesday night after working in Florida for the day. In my mind I would have my biopsy, hang out to make sure there was no bleeding and be on my way. Unfortunately I got a call late yesterday afternoon that my biopsy showed moderate rejection, and they needed to admit me for 3 days of high dose, IV steroid treatment, 1,000 mg per dose.

If all goes well I will be released on Christmas Eve, and by the look on Gracie's face I hope that happens.I convinced her to go home with mom and play with her cousins, and not spend 3 days in a hospital room.

I am confident in my care, and will pray the treatments will turn things around.

I wish you all a very Merry Christmas and a Happy New Year. I am so excited to give this holiday season, I have been given so much, and I am so thankful.Hopefully I will also get some of the cookies baked that I have mixed up in my refrigerator.

God Bless You All,

Trish

Note from Rick Smith: December 17, 2010

Trish,
Sending an email to let you know am thinking and have thought of you often.  So glad to hear you are doing so very well.  Tears coming now, but tears of happiness.  You take care and we are sending you wishes of all sorts. 
Merry Christmas, love you - Beth and Rick Smith and girls.

Quick Update - December 16, 2010

Hello All,


I just wanted to send you all an update. I got a call from the transplant coordinator earlier this week to see if I had a cold because my liver function tests had increased. I am feeling fine. Then I got another call yesterday, and my Prograf levels in my blood, which is my anti-rejection med is almost non-existent. It has been around 8, which is right where they want it. I went off my anti-fungal med last week, and they said that can make the Prograf levels drop. Therefore they doubled my dose as of yesterday. They had also decreased my steroid intake to 10mg per day on Tuesday, and for now that has not changed. I am hoping this med change will bring my Liver function tests back down. Of course by increasing the Prograf that can harm my kidneys. My initial dose was so low, hopefully the increase will not affect them.
I wrote my first letter to my donor family yesterday. For all of you that know me well, you are aware that finding words to say has never been an issue for me, but yesterday I sat at my computer and struggled. It was so important to me to express my gratitude in a way that they could feel it when they read my letter. After shedding many tears, and starting over several times, I hope I did just that.

My family also returned to court last week in hopes of putting this new appeal behind us, which we thought we had. However there was a document that the judge overlooked when making his decision that there would not be a new trial, he must now take that under advisement and get back to us once again. In the big picture we all realize this will be a life long fight to keep him in jail, but we would just like to put it behind us for awhile. The main thing is, he is where he needs to be, so we will count our blessings and roll with the punches. My nephew, Tracy's son is returning tomorrow from his training for the National guard in South Carolina. I know it was a hard decision for him to leave his family and join the guards, and we are all very proud of him. Tracy would have been as well. He will return in 2 weeks, then graduate the end of January. I will get some pictures over Christmas to post on the blog.

We have so much to be thankful for this Christmas season.

All My Love,

Trish

Follow up CT scan - December 9, 2010

Hello My Dear Friends,


Yesterday we travelled back to Omaha for a follow-up CT scan of my
chest. We had an appointment with the transplant infectious disease
doctors to follow. My fungal lung lesions were unchanged, so they are
going to stop my fungal medication and leave me alone, NO biopsy.
What a blessing. I was all ready to fight, and I didn't even have
to. I also had a transplant clinic appointment which went great.
They are just amazed at how well I am doing. I met a new internal
medicine doctor yesterday and he just looked at me and shook his
head. My liver numbers are fantastic, along with the rest of my
labs. It was funny, he asked me if I wanted to go home, and I told
him I had already been home for two weeks. I was released to work if
I want, however I am still restricted to lifting 10 lbs due to my
incision for another 2 weeks, so traveling with a suitcase by myself
could be a challenge. I will behave and do what they say, I do not
want a hernia now. I won't return to UNMC for another 6 weeks, and
that will be a follow-up with Dr. Sorrell. I have so much to be
thankful for.

While I was in the hospital it was the 25th anniversary of the first
liver transplant. Dr. Sorrell had stopped to see me and met Gracie
while he was there. He asked if him and his wife Shirley could take
her to the ceremony they were having to celebrate the 25 years of
liver transplants, and 40 years of kidney transplants. I have
attached a picture of Dr. Sorrell and Gracie from that day. She was
so proud to accompany them. I was sad Peyton wasn't up there to go
along as well. She had a great time meeting one of the first
transplant patients, as well as the first transplant surgeon. I also
found out what number of transplant I was at UNMC, I was #83 in 2010,
and #2705 since the program began in 1985. They have come a long way
since I was a student at UNMC from 1990-1993.

Once again thank you all for the continued support of my journey. I
have been overwhelmed by all of the cards, gifts, e-mails and phone
calls. The generosity and kindness continues to overwhelm my hear.
With the help of all of you, I am prepared to write my first letter to
the donor family. I pray for a response, but I also understand if I
do not receive one. Enjoy the holiday season and blessings that it
brings.

Love,
Trish

Hello Again...December 3, 2010

Me again,


I came across this picture taken of me post-op, hating the ventilator
and the hand restraints. I cannot believe how far I have come in 3
short weeks, and this picture reminds me of that. That was one of the
worst experiences I have ever had, however with all of the good
fortune I have had since, it seems like a distant memory. I compare
it to childbirth. It was really tough going through it at the time,
but once you see what miracle comes out of the pain your memory allows
you to forget how horrible it was. I am so thankful for that. I just
wanted to share this with you all. There is no holding back now,
after all you have seen my scar. For all of you that thought that may
have been too much information, there was that group of you that were
thinking to yourself, I wonder what her scar looks like? You know who
you are. Have a great weekend, and don't forget to count your
blessings, I count all of you as mine.

Trish

Post-Op Update: December 3, 2010

Hello All,


I am 3 weeks post-op, and have been home over a week. Other than being tired come evening, I feel really good. I have no pain, and haven't had to take any of my pain meds. That is huge to me, because my pill intake is high enough everyday. I went back to UNMC yesterday for clinic and all of my labs look fantastic, the Dr. was so pleased. They may even decrease my steroid pills again next week. They also changed my lab schedule to just once a week. I will return next week for a CT scan of my lungs to see if the anti-fungal meds that I have been taking have decreased the size of the lung lesions. If not the Dr. I saw yesterday said another lung biopsy would be discussed. They can discuss it, but I am not up for that. So that is still up in the air. I will pray for a clear CT scan. Everything is great on my end, and I hope this finds all of you doing well and enjoying the holiday season. I will tell you all , the christmas lights are much brighter to me this year, and I have such a wonderful sense of peace in my heart. My gift came on November 10, 2010 and I am so blessed.
Happy Holidays,

Trish

Going Home: November 24, 2010

Happy Thanksgiving!!!!!


I am so overwhelmed writing this e-mail. The doctor released me to go home, and come back next Thursday for clinic. I cannot believe it. We will go have blood drawn at my clinic back home on Saturday and Wednesday, then travel back here on Thursday. The doctor said all of my labs are excellent, and I will already decrease one of my meds tomorrow. They also removed all of my staples today, that feels better for sure. How wonderful it will be to be home for the holiday, and sleep in my own bed. Although I am giving up prime rib here :(. To tell you the truth it still does not seem real. The tears of joy just keep coming. We are so thankful for the Simmonds family for so graciously taking us into their home, and treating us like royalty. They have sure earned a special place in my heart, and hope to have a visit from them in my home very soon.

So I called my mom, and told her she would have 4 more mouths to feed tomorrow, so I hope there is enough. I miss them all so much. This has been an amazing journey with countless blessings along the way. Enjoy your holiday, and stay safe and warm.

All My Love,

Trish

Scar: November 23, 2010

Hello All,


Another day, and getting stronger and stronger. The pendulum has sure swung on my weight. I gained 40 pounds in the hospital, and am now down 11 pounds from my preop weight. When they told me during the healing process I could lay in bed and my body would still burn 2,000 calories a day healing, they were not lying. I am really working on my intake of calories, and my appetite gets better each day, so bring on the Turkey and mashed potatoes. I thought I would share a picture of my incision, so I apologize if this is too much detail for some of you. It was much smaller than I thought it would be, with 21 staples holding it all together. I am so happy to have it, with a new healthy liver I thought I would show it off. Of course Peyton told me that since I was 40 now, and have a scar it was probably time to hang up the bikini anyway. Those kids, they have such a way with words. But at least they are honest, you gotta love them for that. I really don't know much more. I have been working a little and it feels good. I want all of you to have a wonderful Thanksgiving. I can't wait to hug my kids, I sure miss them. I am thankful for so many blessings in my life, and this includes all of you, my heart overflows with hope.

God Bless You All,

Trish
 

Up and Running: November 20, 2010

Hello All,


I am released. They dismissed me on Thursday afternoon. Dad was my care giver that day and did wonderful getting me all packed up and out of there. He went and got my "bag" of meds, got us checked out of the Nebraska House, which was the on campus outpatient hotel they had been staying at, and we headed to the Marriott for a nice rest. My sister Tonya was at school board meetings at that hotel, so that worked out well. Dad took me back to the hospital yesterday for my first physical therapy appointment, which went well. Larry got back into town around noon and we got moved into his cousin's until I am released to head home. Everyday I am stronger and stronger. I really feel darn good, it is amazing. Our friend Diane Kelly was coming to Omaha this weekend so she dropped the kids off today, and they will leave tomorrow afternoon. I really miss them, so I was overjoyed that worked out. We have some visitors coming by today as well, and will hang out watching the Husker game. Our accommodations are wonderful, and I am being very well taken care of. My fluid is finally decreasing, so I am looking less and less like an Ogre from Shrek. Thanks again for all of the support, it has been great. We will start our routine Monday of lab draws, PT, and clinic visits, in hopes to get me home soon.

Love,

Trish

My cup runneth over......again, and again November 18, 2010

Hello All,


I am sitting here in my chair this morning so blessed, that it beyond overwhelming. My experience has been just that, and I am so thankful for all of the support, wonderful patient care, and hope that all of you send me. It is truly a Thanksgiving holiday gift that I will never forget. I often think about the donor family and their heartache this holiday season, in hopes that I can create the words in a letter to express my true gratitude, and admiration for the gift of life. I feel a little tired today, but I am stronger as each day passes. The doctors said my body is responding so well to the new liver, and they could not be happier with the lab tests. I will get released either this afternoon, or tomorrow morning. My dad is here with me today, and I have really enjoyed the visit and help he has given me. Larry headed home last night to get some things done today, and will return tomorrow.

Larry has been an absolute pillar of strength and support through all of this, and I am so very thankful. He has been truly amazing, and I will forever be thankful. Birdeen, you should be so proud of the boy you raised. Once again thank you all for the cards, flowers, calls and e-mails. I am surrounded by so much strength from all of you, it lifts me up.

Love,

Trish

Trish's Update Wednesday PM: November 17, 2010

Today has been just a great day. Hemoglobin levels have remained stable. She is eating solid food. She walked 18 stair steps today. She has a appetite and is eating well, drinking is no problem, right now she is kind of like the Meat Loaf Song, two out of three ain't bad. She just needs to get the 3rd job accomplished, and they will release her. Trish is getting stronger everyday right before my eyes. I want to thank all of you for your support, your thoughts and prayers, all of the flowers and cards. Her room is the envy of the hospital, it smells like a flower shop. Thank you so much for those of you taking care of our kids, we could not have gotten thru all of this without you. I am heading home tonight for a couple of days to sew up loose ends. I hope to come back on Friday am and take her to my cousins house where we will reside for a few weeks.


Lar

Trish's Update as of Tuesday PM: November 16, 2010

Today has gone much better, we keep seeing more and more improvement. Her hemoglobin has remained steadily at 9.8, without any help. She has been cleared to eat anything she wants, which has made her day. She was starting to get a little hungry, don't know why, she at a meal a week ago. Her vital signs are great, liver is performing well, and her spirits have been lifted. I don't want to say we are out of the woods, but I think we are close. Doctor says when she can eat, drink and _ _ _ _ , she can be released from the hospital.

Lar

Trish's Update - Monday Evening: November 15, 2010

Well our day has gotten better. Trish started the day with hemoglobin count at 10.4 after receiving 2 units of blood thru the night. At noon she improved to 11.1 and the lab at 6pm was 10.4. This is a big improvement over the last couple of days. Hopefully we are done needing blood. The doctor today said we will continue doing what we are doing, surgery does not seem necessary. Trish felt great today, she took a shower, brushed her teeth. She started a clear fluid diet today, which has made her feel much better. She has gained 30 lbs due to water retention, she's swollen like a tick on a dog in July. Doctor says it will come off real quick. Thats all for now.


Lar

Note: From Brenden - November 15, 2010

Dear Trish,


Hello this is Brenden. I just wanted to let you know that I'm happy that you're feeling better. I bet that you were pretty excited when you got the call from the hospital. I might get to see you on Tuesday when I come to get my Crohn's disease treatment. Tell Gracie I said hi please. Maeli says hi too. I hope you keep doing well in the hospital.

Your friend,

Brenden

P.S. I hope you get to feeling well so you can make me some more good lunch/dinner! ha, ha :)

Sunday Afternoon - November 14, 2010

We have moved from icu now to a regular room today. Her hemoglobin worked its way from 8.7 to 9.3 on its own in a half of day, requiring no additional blood. She was feeling pretty good today, she had quite a few visitors and was able to visit with each and every one of them. They pulled her ng tube as well as her catheter. However her hemoglobin has dropped to 7.3 this evening. This is puzzling. She is going to receive more blood this evening and try to get it back up to 10. Unfortunately we keep having these setbacks along the way.


Lar

Sunday Morning Update: November 14, 2010

Well we made it through the night without a hitch. They drew blood at midnight and the result was a 9.3 hemoglobin, and drew it again at 5am and that result was 8.7 hemoglobin. So I guess they continue to monitor, and they have blood on standby in case she drops to 8. I am not sure what this all means, one thing is for sure is that she did not bleed as much last night as the night before. She feels a lot better this morning, she talked with her mom and sister on the phone. I wish, I knew more, and I will give you more info once we speak with a doctor. Keep up the prayers.


Lar

Update: November 13, 2010

Trish's hemoglobin is up to 10 which is a normal level. They will continue to monitor those levels all night. If we can have that number come morning it would then appear that the bleeding has stopped. Her blood pressure has remained stable all day. She has been in and out of sleep all day. This seems to have really worn her out today. I won't know much more until morning, I will update when we hear from the lab in the morning.


Lar

Update on Trish - November 13, 2010

Last night gave us a small setback. Trish woke up this morning to go to the restroom and felt nauseated. Her NG tube was showing signs of dark red blood. Her hemoglobin count was down to 6.8 and her blood pressure was down. This was indicating she is bleeding somewhere. They took her back to icu and scoped her. The scoped indicated that the blood was not coming from her liver, or where the roux was connected to the liver. It was not coming from her stomach, they looked around as far as the scope could reach, they could not see where the blood came from. The scope also indicated there was no fresh blood being released. What they learned is the bleeding has stopped, and has to be coming from where the roux was connected to the intestine, or where they removed the pancreatic tissue from the lower intestine. They gave her four units of blood, she is stable and they are going to monitor her hemoglobin and blood pressure. Her liver functions are fine. We expect to remain in icu for the remainder of the weekend. Right now she is doing fine.

Note: ' Your New Friend' - Amy Bjork - November 12, 2010

Hi Trish,


Bless your heart! (And your new liver, too!)

You don't know me - my sister Andrea works with your friend Kelli and that is how I heard about you. I was having a less-than-perfect day and called my sister in hopes of receiving a good giggle, or some other sort of pick-me-up (she's very good at that). She said, "Well, I've got a really positive story for you if you want to hear it...". I replied, "PLEASE!" and she began telling me your beautiful story. I have spent the better part of the afternoon reading your blog (through teary eyes) and just wanted to thank you for sharing your journey with us. Your positive and winning attitude, give us all hope and is such an amazing inspiration. Our world is very lucky to have people like you in it!

I'm so glad to see that you are doing well Trish and wish you a swift, painless and complete recovery! I just wanted to let you know that you have a new friend sending you love, prayers and happy thoughts from Seattle, WA.  :)
Much love,

Amy Bjork

Good Health... November 12, 2010

Good morning, afternoon, or evening everybody.

Just a quick update to brighten your days! By the way this is Gracie. Right now we have Jan Ferguson, Tonya Smith, Larry Grote, Scott Giebler, Tom Ferguson, and of course (best os all) me, Gracie J. Grote. Oh! And my mom, Trish. Anyway, she is doing great. She still has N/G (Nasil Gogastrice tube) in, but they might get it out tomorrow or the next day. They are accepting visitors so you can come and visit anytime. And the mailing address, I think you already got yesterday, but if not, just e-mail me back and I'll give it to you. And any questions, I'll try my best to answer them. And you can call any time and talk to me, my dad, or even my mom. Feel free. I hope you are all doing well! For more updates, visit my facebook page at www.facebook.com and when you sign in type Gracie Grote in the search box and you should find me. I hope to see you soon! Have a absolutely splendid day!
-Gracie

Note: From Sheila Stern - November 11, 2010

Awesome!!! I wish you a quick recovery and that this Thanksgiving Day will be an extra special day for you and your family.
Best wishes and prayers sent your way!

Sheila

Note: From an old friend...Tiffany Stauffer Osborn - November 11, 2010

Hi, I am a friend of Trish's, I have not seen her since after hs. I have never known what had become of her, but kept her friendship and laughter inside me for years. Through facebook I have connected with other friends of ours, and found out from Lori Eby Blotskie of her condition. I am so excited that she is still riding, she always loved to ride, and the last time I was on a horse it was with her on a horse named J.R.

It is strange to be excited to hear news of a long lost friend and somber that the news is full of tribulation. To see Trish's family, husband, her kids for the first time...its a blessing. And to see her surrounded by such hope and support is beautiful and fills me with faith.

So Trish, check it out....You are going to be just fine, cause its gonna take some time for us to get caught up. You are in my prayers, Trust in Lord and lean not on your own understanding....

My Best,
Tiffany Stauffer Osborn

Note: From Sharri Miner - November 11,2010

Trish,


Wow—words can’t explain the joy I am feeling for You, Larry, and the kids right now! It’s another miracle-one you deserve! I can’t wait to see you!

Prayers and hugs,

Sharri

The Gift of Life is Amazing!! - November 11, 2010

Early morning greetings,


It is 6:35 am and I am sitting up watching and visiting, what a glorious day. The most uncomfortable part of the procedure so far was waking up with the breathing tube and being very alert for another 5 1/2 hours, it was terribly uncomfortable. I finally went of the ventilator at 2;30 pm, giving much relief. My first time sitting up in the chair occurred 14 hrs after surgery, its just amazing. My care has been top notch, I have had very little pain, only 3mg of pain meds. It has been wonderful having family and freinds around to help support me, Gracie is a great little jr. nurse. Peyton is excited to come see his mother, I miss him so much.

My heart sinks everytime I think of the victim and their family that suffered a loss to give me the gift of life.

I want my family to know I wont be home to host xmas, seems like a weak excuse but I am gonna have to pass on hosting this year. The plan today is to start walking and by the middle of the day get released from intensive care. I just want to thank all of you for your emails, texts, concerining my surgery, but most of all, all of your thoughts and prayers. A special thanks to Kayla for covering my jewelry shows, and the Kizer family for taking in Peyton and a dog. I have more hope than fear now.

Love to you all,

Trish

Sitting up in chair 14 hours post-op... I feel great!!

From Gracie - November 10, 2010

Hello all,

This is Gracie Grote (the daughter of Trish Grote) and I thought you would just like to hear the story...

Well, first of all, my mom was headed to a jewlery party in Elm Creek. She had just left the garage when she drove back up and came in the house with this astonished and surprised look on her face. And I knew. I said 'UNMC??!!!!' and she nodded franticly. So I jumped on the 4-wheeler and floored it down to the cornfield to get Peyton (my brother) because he was setting up a trail camera. I was hauling butt yelling 'Peyton! Peyton! PEYTON! Mom just got called in! Let's go!!!!!!!!'. he said 'WHAT?! Oh my gosh! Move over and let me drive!' and when we got to the house mom said to pack a bag AND QUICK! But Peyton didn't want to come quite yet because he didn't want to see my mom in that condition and he said he had to take care of the animals and stuff so he is staying with some neighbors. Me, Mom, Grandma Jan, and Aunt Tonya got in the car, dropped off jewlery of at a woman's house, and we high tailed it to Omaha arriving at 8:45pm while Kelli (my moms UNMC friend) arrived at 8:00pm already giving us crap about being forty-five minutes after her. (wink wink) I guess she is just fast. So we got all of the tesing and stuff over with and went to a room where there was more testing and waiting for a positive sight of the liver. And when that happened, it was 11:15pm to 11:30pm when they got done doing the biopsy to the liver, they came in and said quote: "It's a go." So of course we had to say our good-byes and let her go, which was SOOOOOOOOOOO HARD, as you might know. So we got progress phone calls every hour, hour and a half and they were always good reports. And then the australian docter came and said she did great, and found some strange things in the liver but got it out. So as of right now mom is in the ICU (Intensive Care Unit) and we are waiting to see her. Thenk you for all of your wonderful thoughts and prayers. We will keep praying, and hope everything else goes well.

As of 15 hours ago the journey begins.

Gracie

6:00 am - November 10, 2010

This just in! After a phone call confirming she was on the table at 1:30am, and some progress phone calls, Trish's surgeon just met with us at 6 am to tell us the surgery went well. We should be able to see her in about an hour. Her surgeon said that they looked around while they were in and did biopsy a couple of lymph nodes and they were normal. He did say that they found some ectopic (not in the normal place) pancreas tissue on her bowel so he took that out. He said that this was rare, imagine that! Trish continues to keep everyone on their toes!

She has been incredibly strong through this thus far and we expect no less.

Kelli and Gracie

Ready and Waiting... November 9, 2010

It's GO Time!!!! - November 9, 2010

At 4:47 pm, Tuesday, Nov 9th, Trish received "the call". After some frantic packing, Jan, Tonya, Gracie and Trish arrived at UNMC at 8:45 pm. Kelli drove in from Sioux City (without a speeding ticket) and arrived at 8pm. Larry arrived at 9:30pm from McPherson, Kansas. Trish was admitted to her room and the testing began. All the nurses and staff are still trying to figure out how she ended up here! After a couple of excruciating attempts at an arterial line, she is relatively comfortable. The protocol states that once the liver is "in the house", it still has to be biopsied to make sure it is the perfect match. Basically UNMC wants to verify what shape the liver is in since it is coming from another hospital. We don't know if it is coming via chopper or fixed wing, but we now have verification at 12:10 am that the liver is here!

12:15 pm, it is OFFICIAL! With hugs and kisses we sent her off. She is in the best of hands and that gives us great comfort. Keep her in your prayers and we will update you as we know more.

'The Call'....finally came... November 9, 2010

Trish got the call this afternoon that there is a donor liver that is a match for her. She is on her way there now.  There are still some final factors before everything is a 'for sure' go. More details as soon as we have them.

Let's all send our prayers Trish's way.

Whitney

Gracie and I riding on Calamus Lake..

We do have beaches in Nebraska.

Quick Update - November 5, 2010

Hey All,


I just wanted to drop a quick note to fill you in on all of the tests they ran last week. All of the labs, other than my sed rate and C-reactive protein, were once again normal. None of the additional testing for the fungus came up positive. The increased sed rate and C-reactive protein just show that there is inflammation some where in my body, my liver maybe? The infectious disease doctors were wanting to do a bronchoscopy to get another sample of my lung, however Dr. Sorrell and the liver surgeon disagree, and they will leave me alone.

I had hoped to not mention this for years to come, but we will have to go back to court for Tracy on the 29th of November. Her murderer would like a hearing so the judge can explain to him why the appeal was denied, and of course that was granted. He will be on speaker phone, asking his questions, and the judge will explain to him that when you take a young woman and beat her to death, you don't deserve a new trial. Those may be my words, so if they let me speak look out. Either way I will be there to support everyone involved.

Gracie, Peyton and I moved cattle last saturday for some friends, (Peyton was on a 4-wheeler, Larry was in a pick-up) then we went up to Calamus lake with some good friends and rode our horses on the beach. When I get the pictures back I will post them. It was a glorious day, for 2 reasons, we got to ride, and we beat Missouri in football. I cherish those days when Gracie and I get to ride together, it is wonderful. I guess I will have to take up hunting to hang out with Peyton, horses aren't his thing. Thank you all for your continued support, prayers, cards and gifts . All of you help me to be a stronger person. You lift my spirits up so high.

I am so blessed,

Trish

Quick Update - November 5, 2010

Hey All,


I just wanted to drop a quick note to fill you in on all of the tests they ran last week. All of the labs, other than my sed rate and C-reactive protein, were once again normal. None of the additional testing for the fungus came up positive. The increased sed rate and C-reactive protein just show that there is inflammation some where in my body, my liver maybe? The infectious disease doctors were wanting to do a bronchoscopy to get another sample of my lung, however Dr. Sorrell and the liver surgeon disagree, and they will leave me alone.

I had hoped to not mention this for years to come, but we will have to go back to court for Tracy on the 29th of  November. Her murderer would like a hearing so the judge can explain to him why the appeal was denied, and of course that was granted. He will be on speaker phone, asking his questions, and the judge will explain to him that when you take a young woman and beat her to death, you don't deserve a new trial. Those may be my words, so if they let me speak look out. Either way I will be there to support everyone involved.

Gracie, Peyton and I moved cattle last saturday for some friends, (Peyton was on a 4-wheeler, Larry was in a pick-up) then we went up to Calamus lake with some good friends and rode our horses on the beach. When I get the pictures back I will post them. It was a glorious day, for 2 reasons, we got to ride, and we beat Missouri in football. I cherish those days when Gracie and I get to ride together, it is wonderful. I guess I will have to take up hunting to hang out with Peyton, horses aren't his thing. Thank you all for your continued support, prayers, cards and gifts . All of you help me to be a stronger person. You lift my spirits up so high.
I am so blessed,

Trish

Me and Mom...

Me and Dad...

I have always loved this picture of my kids and Larry..

They were so excited when they caught that huge catfish out of our pond.  It is probably at least 3 years old, but it always makes me smile when I see it.  The little boy is Garrett, a friend from Overton who came out to fish.

My Nephews - Dylan and Nolan...GO HUSKERS!!

Kelli and Gracie at my Benefit... (Mom in the background)

Appointment With Dr. Sorrell - October 27, 2010

Hello All,


Larry and I travelled to UNMC in Omaha yesterday for a follow-up visit with Dr. Sorrell. My dear friend Kelli met us there, as she often does. I can't beat her off with a stick, and you know what I don't want to. She is a beautiful friend that continues to support me endlessly, and she gives me so much hope, I love her very much. It is not every day you hear people say " I enjoy going to see my doctor ", but it is always my pleasure to see Dr. Sorrell. I always leave feeling more positive about things than when I walked in. Once again all of the labs were normal, but they are wanting to investigate the fungus that I had in my lungs when they removed that nodule in June. His new fellow became concerned that when I receive my transplant, and they put me on the medication that will suppress my immune system, so I do not reject the liver, this fungus in my lungs could get worse and cause me to become ill. Right now I am "healthy" and my body can fight it, but once I become immunosuppressed that may not be the case. I know I have cancer, but I keep saying that I am healthy because that is how I feel. So..............Dr. Sorrell agreed with the fellow that I could see the infectious disease doctors, if they would be able to see me yesterday, since we live so far away. So after a STAT CT of my chest with contrast, and a quick lunch, we were back in internal medicine visiting with them. Once again the fungus that was found in my lung, is some bizarre type or it could possibly be TB. Leave it to me to never have anything that is normal. Through some additional blood work and urine testing they are hoping to pin point it and get me on the proper antifungal medication. Of course the "best" way to diagnose the type of fungus would be a biopsy. :( My lesions are so small however it would be very tough to hit one, as I already know from previous experience when they missed a lesion twice the size in June. So I am not volunteering for that procedure. The CT of my chest did show some growth of these small lesions, so they are convinced it is still active, although they see some signs of necrosis (death of tissue). I know all of this information is somewhat confusing, but what it comes down to, if I was not going to have a transplant my body would fight it on it's own, and I wish that were the case. These infectious medical doctors work with transplant patients only and they are very cautious. I hope to hear some news today, however, some of the blood tests take several days. They did say with the proper medication these lesions would disappear within a month.

On a positive note, Dr. Sorrell does not know why I haven't been transplanted yet, because they are transplanting MELD scores of 22-24 now, so it is just a matter of finding a match of blood type, and body size. My score of 25 puts me right where I want to be. He said to expect the call any day. He said he has to get me transplanted soon so his son, my good friend, Tom Sorrell will stop bugging him about it. I just love their sense of humor, and I appreciate them both very much. I am blessed.

Please continue to pray for my friends Scott and Celeste Wells. Scott is a patient at UNMC receiving his chemo, so he can get his stem cell transplant. He is ready to get on the road to recovery as well, I know exactly how he feels.

That is all I have for now. I really hope the next time I send out a message it is to say they have a liver, that is my exact match, and they really need my body to put it in. Once again, what an amazing gift that will be. Thank you all for your continued support, I appreciate it so much. God has a plan for me, so I will continue to believe and follow with lots of hope.

All my love,

Trish