Lawrence resident's condition worsens after stem cell transplant for 'hardening' disease

Editor's Note: This is a followup story. We first reported about Kim and her battle in November 2010.

Longtime Lawrence resident Kim Banning-Bohmann, 51, is in the fight of her life.

She has a rare and progressive disease called scleroderma that has caused her body to harden from her toes to her jaw. She said it hurts to walk, sit, sleep and eat.

“It’s worsening. I’m much sicker,” Kim said, during an hourlong interview this week at her home.

• • •

Kim’s fight began two years ago when the first symptoms of the disease — a pain and tingling in her hands — began to surface.

After trips to numerous doctors and hospitals, she received the devastating diagnosis in spring 2009. There’s no known cause or cure, but there is hope.

Northwestern Memorial Hospital in Chicago has been performing stem cell transplants on individuals with scleroderma through a clinical trial that began in 2006 and the results have been promising.

Dr. Richard Burt, chief of immunotherapy for autoimmune diseases, said during an interview with the Lawrence Journal-World last year that the transplant has been successful in reversing symptoms in the skin, so normal elasticity and muscle function return. It also can improve internal organ functions.

So far, Kim is the only person who hasn’t seen the promising results.

“I don’t think I’m going to be that one person that it doesn’t work for. I don’t think I am,” she said. “I just think I’ve had these other issues that no one else had.”

•••

On Feb. 28, Kim had a stem cell transplant in Chicago after a month of preparation that including grueling chemotherapy treatments.

Kim said the chemo and transplant were a piece of cake compared to the infection she battled after the transplant. The infection caused her blood pressure to drop and her kidneys to quit working. As a result, she gained 38 pounds of fluid in four days and some of it went to her lungs. She said the fluid went to such weird places that she could barely look at herself in the mirror.

“I looked like a horror picture,” she said. “That is the worst thing that I’ve ever gone through in my life is that infection. It was a feat to even walk to the bathroom.”

While in the hospital, she also vomited “a bowlful of blood” in one day. Doctors discovered she had lesions on her stomach called gastric antral vascular ectasia, or GAVE.

After a month in the Chicago hospital, she returned home in mid-March.

“It was just so good to be home,” she said. “I just needed to be home.”

Since then, she’s been dealing with the stomach lesions. She’s had her blood drawn every week to two weeks. She’s had blood transfusions and procedures where they cauterize her stomach. Because her veins have hardened, they’ve had to put a port in her chest.

Last week, she finally received some good news. Her doctor at Kansas University Hospital saw no signs of bleeding and her hemoglobin has reached its highest level since the transplant.

“I’m kind of hoping I’ve gone through everything I need to … knock on wood,” she said.

•••

Now, she’s praying to see improvement in the scleroderma.

She said a gentleman from Hawaii had a stem cell transplant on the same day that she did. They became fast friends and keep in touch by email. He recently wrote that he’s training for a marathon in June and is raising money to fight the disease.

Meanwhile, for her, the disease has worsened.

It takes about an hour for her to get dressed each day because of the immobility in her hands and the ulcers on her fingers.

“It’s not comfortable to sit for too long because my legs get locked up,” she said.

Kim tries to lead as normal of a life as possible. She still attends her children’s activities, drives, works from home, buys groceries and hangs out with her girlfriends.

“I’m still doing the same things; it just takes longer and it hurts a lot more,” she said.

She was in Chicago about two weeks ago for a follow-up appointment, and the doctor told her that he thinks her new stem cells have been fighting the stomach ulcers instead of the scleroderma. He still believes the transplant is going to work. He hasn’t given up hope and neither has she.

“This whole thing has given me an insight into what’s important in life and what’s not. I think this happened for a reason. I think I needed a wake-up call about what’s really important in life and what’s not,” she said and paused fighting back tears. “Family, your health — everything else is just gravy.”

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann was looking for a coat that she might be able to button with her hands which have hardened and have sores. The 51-year-old resident was diagnosed in spring 2010 with scleroderma, a life-threatening disease that causes hardening of the skin. She received a stem cell transplant in February in hopes of reversing the symptoms. It has yet to work, but she hasn't given up hope..

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann was looking for a coat that she might be able to button with her hands which have hardened and have sores. The 51-year-old resident was diagnosed in spring 2010 with scleroderma, a life-threatening disease that causes hardening of the skin. She received a stem cell transplant in February in hopes of reversing the symptoms. It has yet to work, but she hasn't given up hope.. by Richard Gwin


PREVIOUS STORIES

Here are stories that have been published about Kim:

Longtime Lawrence resident coping with life-threatening 'hardening' disease.

Lawrence resident overwhelmed by community support as she fights 'hardening disease.'

Locks of love: Younger sister donates hair for wig.

Lawrence resident to undergo stem cell transplant for 'hardening disease.'

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs.

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs. by Richard Gwin

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

Tagged: scleroderma, stem cell transplant

Comments

pagan_idolator 3 years, 1 month ago

What a beautiful woman. I hope things work out for her.

Lawrence Morgan 3 years, 1 month ago

I also hope things work out for the best for you.

I'm not a Buddhist, but I would recommend the small book "Walking Meditation" by Thich Nhat Hanh. It might be of real help to you.

What books would other readers recommend?

patgilbey1 3 years, 1 month ago

GO KIM, GO KIM, GO KIM!!!!! Waky Valley folks are sending all the good energy your way!!!!

Biscayne 3 years, 1 month ago

Kim, you and your family are in our thoughts and prayers. Leland

thepianoman 3 years, 1 month ago

Kim, you are a remarkable woman and your story is inspiring. You are right - family and health are everything - the rest is gravy.

Keep fighting and living your life to its fullest. Enjoy your family and life in Lawrence!

christy kennedy 3 years, 1 month ago

Dear Kim, I imagine you and your doctors have left no stone unturned, so I hope you know about the autoimmune diseases caused by gluten sensitivity. There's a lot out there and here's just one thing:

http://www.sclero.org/medical/treatments/alternative/diet/food-guide.html#gluten Gluten Scleroderma and Celiac Disease and Gluten Intolerance Gluten sensitivity and Celiac disease are a known cause of scleroderma and dozens of other autoimmune diseases. Even if tests for gluten sensitivity and Celiac disease are negative or inconclusive, trial of a gluten-free and casein-free (GFCF) should be considered.

The "even if tests . . . are negative or inconclusive" is key. For some, the only real test is trying a strict gluten- and casein-free diet and if you notice improvement there's your result. Note: many typical symptoms will go away quickly, atypical (the list is long) symptoms can take much longer. Best wishes to you.

banningbohmann 3 years, 1 month ago

Christy, Believe it or not, not ONE doctor has ever suggested a word about gluten sensitivity. I went to the link above, last night, and discovered I have every single symptom.

Last week I scheduled an appt. with a nutritionist at LMH, and coincidentally, that appt. was today...Because of your desire to help I was able to talk to her about this, and I started a gluten-free diet today... I even feel better tonight as I am typing this. I don't know if it's all in my head, or if there's some medical basis and the gluten-free diet is already starting to make a difference, but either way, thank you, thank you, thank you! On top of that, my daughter is a Type 1 Diabetic and has been suffering with stomach issues on top of everything else. It breaks my heart to have her go through so many things at such a young age. I told her tonight about the link of gluten sensitivity to many autoimmune diseases, so SHE is going to give it a try too...I can't thank you enough for helping me, a stranger, and my daughter,,,THANK YOU!! Kim Banning-Bohmann

jnixon 3 years, 1 month ago

Kim, I too, know of someone who has this dreaded disease. She used to be a resident of Lawrence, but now resides in Idaho. I know every time I mention what she has been diagnosed with most people don't have a clue what it is. I will share this story with her. Thanks for sharing with us!

Karrey Britt 3 years, 1 month ago

Kim — I absolutely adore your positive spirit and sense of humor despite everything that you've been through the past two years. I want to thank you for opening your door and letting us in. You are an incredibly brave woman for sharing your story, and there's no doubt that you've touched many, many lives. I look forward to writing about your recovery!

banningbohmann 3 years, 1 month ago

Karrey, Thank YOU, Dolph Simons, and The Journal-World for coming to me and convincing me to let you in! I pray that there are others with Scleroderma who will read my stories and go to Northwestern Hospital in Chicago before it's too late!
And, I am SO grateful to the JW readers, my friends and family, and Lawrence residents who have called, emailed, shown up at my door, donated money and time, brought me meals, etc...Even if I don't get any more relief from the disease, I know I live in the town with THE most caring and genuine residents.... that means the world to me...

Clevercowgirl 3 years, 1 month ago

Yes, Carrie, Kim rocks. Throughout this unbelievable ordeal, she has remained a beacon of grace, strength, and courage. Those of us that know and love her, are certain that she will find a way out of this. Keep the prayers coming.

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