Lori Stephens

Marmet, WV

Mid-Atlantic Transplant Fund

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Lori’s Story—There is hope—that hope is you

I am in a long battle with liver disease, it started as fatty liver and as the years went by I went into NASH Non-alcoholic Steatohepatits, now I have cirrhosis. During this time my liver function would decrease and then come back to normal and I would feel well again. As of late, I have been having bouts with my ammonia level and it has gone dangerously high. That causes me to lose memory, my mood changes and I would be unlike myself. I would have to be hospitalized for several days until the levels came back to normal stage.

When being diagnosed with cirrhosis people automatically think of a drink or a drug user. I am neither nor have I ever been. I have been a daughter to an amazing set of parents, Bill and Gay Wright, a sister to Billy, a wife to Matt, a mom to Meagan, an aunt to Alex and Samantha and now a grandmother to Bryan. My family nor I deserve what we have been dealt. I have always lived my life the way I wanted, now I can’t. This diagnosis has truly sucked the life out of me. But I still push myself to be a wife, mom, momaw, friend and hard worker. I won’t let this disease get me down.

I am now working with the University of Virginia in getting me a new liver. This is no easy feat. I have type O blood, this is unique in that we can give all other blood types our blood, but we can only receive O. To put it in perspective there is a national shortage of type O blood donations. Can you imagine what the shortage looks like for type O liver donor? A liver is the fix to my problem. There is no medicine in the world that would make me better.

While I have medical insurance through my work and my husband’s, we will still have many expenses because of the transplant. My surgery alone is about $14,000.00. I will have living expenses while staying in Virginia to go to doctor appointments and blood work, expenses for anti-rejection medicine, caregiver expenses and living expenses while me and my husband are off work for the healing process.

Donations to Help Hope Live can help ease the financial burden of a transplant and allow me to focus on a healthy recovery and a long life ahead with my family.

Family and friends of Lori Stephens are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.

Lori has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!

January 31, 2019

Since last post I have had 2 hospital stays due to ammonia level. For a total of 20 days. I ha e had 4 belly taps to remove fluid from my stomach. I have had to quit my job since I have multiple appointments and doctor said no work. Fund raising has been put on hold til I feel better. But you can give direct.

December 10, 2018

On October 19 I was admitted to hospital with a very high ammonia level and extreme ascites which is fluid in my abdomin. I was in CAMC Memorial for 4 days, they relieved the fluid and started medicine to clear ammonia from my body. I was released on Thursday. On Friday, Matt went to work left me asleep he came home early to check on me and found me non responsive. I didn’t know where I was, what year it was or anything. I refused to go back to hospital, he called 911 had ambulance come for me and take me back to ER. I set in ER for 3-4 hours spaced out of my head. Matt called my transplant Coordinator in Virginia told her they were doing nothing to help me. She hung up with him called the ER they then got me a bed and admitted to hospital. UvA started making arrangements to get me to Virginia to get the help I needed. I was in the hospital there for 4 days. My team is awesome. They got my ammonia under control. Got insulin on board to get sugar under control. Oupon my release from UVA my MELD score was 20 which meant I could get an offer for a liver. My A1C was 9.2. That made me inactive due to my blood sugar being so high. On November 26 my A1C was 7.4 and MELD score 11. This is a great improvement. I am however, still on the transplant list but won’t get an offer due to my numbers being so good. I need a live donor. My plea is to go get tested. You may not be my match but you may be someone’s. Give the gift of life.

October 9, 2018

Went back to UVA on October4. Saw the social worker to finalize our caretaker plan and we also say the hematologist. She clears the heparin allergy. I am not allergic. That is a good thing. They will meet about all potential candidates for transplants. I hope to hear something Thursday, October 11 if I am listed or not.

October 9, 2018

Over the weekend we closed the 50?50 Raffle. The pot was 1920.00. 3 names was drawn. All 3 names told me to keep their portion. That's a good person that wants you to have it back. You don't see that many people in the world. Also we held a corn hole tournament. There was 5 teams, we still had a good time. And some really good hot dogs thanks to Joe Rage. Next up is Paparazzi. Make sure you watch and buy buy buy!

October 5, 2018

My husband, Brother and I went to UVA to see my social worker and my Hematologist. Care taker plan in place and I am not allergic to heparin as thought. So now I go to the round table take on Wednesday, October 10. This I will find out if I am listed.

October 3, 2018

Tomorrow, October 4, 2018 My husband, brother and I will be making a trip to the University of Virginia to see a hematologist. This will help us to determine if I am truly allergic to heparin or not. After tomorrow I pray that I am listed and we can get my potential live donor tested and get transplant completed soon.

I have been asked to speak on October 11 at our Kanawha Valley American Baptist Women Rally about my story and some about my journey through this.

On Sunday, October 7 we are having a corn hole tournament with a hot dog sale fundraiser. So far we are doing fairly well raising money. If anyone needs help feel free to contact me on my facebook page Lori's Story--There is hope and the hope is you. I will be glad to help or give you ideas.

September 24, 2018

Well the last couple of weeks have not been good. Super Stressful. Iron level extremely low and we are watching white blood count on Thursday September 20 it was 1.7. Nothing we can but watch and pray things turn around on their own. As of right now, I do still have an appointment for October 4 to see my social worker and hematologist at UVA. Saw my Hematologist here in WV and she confirmed that I am NOT allergic to heparin. Keep positive thoughts and prayers for me and my family as we go through this journey.

September 16, 2018

Saturday September 15 was Benefit Gospel Sing and Hot Dog sale. Awesome turn out. And nothing beats a church hot dog. I love having a church that’s not only lifts me up in prayer but works hard in everything they do. The ladies are second to none.

September 4, 2018

Had our first big fund raising event. We don't great. Made $650.00. We are off to an awesome start. I talked to our Senator yesterday at the Labor Day celebration and he offered his help. Cant wait until the next benefit September.

August 29, 2018

It's been a month since this world wind trip started. Fundraising has totally consumed my life. Trying to work and stay well is so hard. However, I am staying focused and doing what I can to keep things going. I do have an appointment on October 4 to see the social worker to go over medicine and then see a hematologist to get something checked by them then I should be listed. There are other parts of my life that is working out as they need to that is totally unseen by people not in my circle and know things needed to change. So God is making things happen. So keep me in your prayers not just me my family. This is hard on them too. They see me at my best and worst and this transplant will be my all time worst. I've still got a road to travel but with faith, I know God's got this. Thanks for your time or donation. It is appreciated

August 21, 2018

Fundraising dates are coming up fast. I have a Lori's Story Benefit Bake Sale September 3--this includes items such as t-shirts, decals and wristbands to be sold that day. On September 15 a Lori's Story Benefit Gospel Sing.