Siblings share journey in search for new kidney

SUBMITTED PHOTO Julie Jackson of Spring Valley and Craig Northouse, who grew up in Lanesboro, share a strong sister-brother bond and they soon hope to share a kidney.
Gretchen Mensink Lovejoy

Our first words are “Mom” and “no,” and the second thing we learn is how to share.

Learning how to share has stuck with Julie Jackson of Spring Valley all these years. The most recent beneficiary is her older brother, Craig Northouse, originally of Lanesboro and now of Elkhart, Iowa, just outside of Des Moines, who was diagnosed with multiple myeloma, a blood cancer that he said has been the bane of his existence since Oct. 17, 2017.

“The day after he was diagnosed, his wife, Sharon, called me and said his kidneys weren’t working and that he had to undergo dialysis. I was in the middle of a dog training class and immediately told them, ‘You can have one of my kidneys. I never gave it a second thought,” recounted Jackson. “It was just the obvious choice to want to make – he’s my brother and I love him and would do anything for either of my brothers.”

Diagnosis a surprise

Multiple myeloma is a cancer that causes one’s body to produce too much blood plasma – “think of Lucy’s chocolate factory assembly line on ‘I Love Lucy’ – and it causes kidney failure in many cases,” Northouse said. “In my case, both my kidneys failed, and I was placed on dialysis four times a week. I hate dialysis. I really, really hate dialysis.”

Being diagnosed with multiple myeloma came as quite an unwelcome surprise to Northouse, middle child of the late Darryl and Lois Northouse who lived in Spring Valley for 33 years after raising their children in Lanesboro.

“It was very scary. I have never been sick, other than your normal stuff – flu, colds, etc.,” he said. “I started to get very tired and thought I pulled a muscle in my side. Later, I found out it was three broken ribs. Multiple myeloma shuts down production of red blood cells and causes low-energy anemia and weakening brittleness of bones.

“I was sent to the hospital by my doctor, we thought for a blood transfer. About three hours later, I am in a hospital bed and roll over and snap my right femur and arm bone in two different breaks. The next morning, they take me up for my first four-hour dialysis session and tell me I have some blood cancer that has caused my kidneys to shut down. I then got pneumonia and the coughing caused four more ribs to fracture. This all happened in Des Moines and was a very dark two weeks. Everything was going downhill.”

The 68-year-old and his wife retired at 64 and spent two years making extended trips in their camper. Then cancer and dialysis stopped the travel adventures and everything else for two years.

“Dialysis four times a week became our part-time job to stay alive,” he said. “My first session was very depressing – about 40 people all sitting in big chairs in a row and hooked to machines. I remember the constant humming and bells of the machines and thinking that this is now my life.”

New hope at Mayo

His sister got him admitted to Mayo Clinic where his hematologist identified his disease as multiple myeloma with a full explanation of the cancer, treatment and expectations.

“My attitude went from dark and gloomy to hopeful and optimistic,” he said.

Jackson didn’t stop at getting her brother into a world-famous hospital. She kept her offer to donate a kidney so she could give her brother what he needed to live longer and enjoy a full life carrying out the projects he likes to do to keep busy on his acreage, such as overhauling an old windmill on his property.

Northouse said no to the offer at first. “I just could not come to grips with someone offering me that kind of gift. I also was not a candidate for a kidney transplant unless they got my cancer under control. It is a cancer with no cure at this time, but in many cases, it can be controlled with drugs. The fight against cancer was on,” he said.

Jackson also shared in the fight.

“As you travel the journey with someone that has cancer, you immediately think of all your friends, family and co-workers who traveled this same path, and I immediately thought, ‘I should have done more to help them when they were going through this.’ It gives you a totally different outlook and more empathy. You just never know what someone is going through until you experience it yourself,” she said.

Chemotherapy takes toll

“Chemo is just what you have always heard. It is a poison that wrecks your body. Nausea, diarrhea, dry heaves. I dropped 70 pounds in a few months. All I could eat were grapes and Cutie oranges. The worst chemo was for my stem cell transplant 17 months ago. They remove stem cells from you, clean them and freeze them. Then they give you a five-hour massive drip infusion of chemo that destroys your entire immune system. That was a tough time. You start a whole new immune system, and yes, I got to get all my baby immunization shots all over again – 18 shots,” he said. “And the worst exam I have – I was just at Mayo a couple weeks ago and had to have a bone marrow biopsy. They stick a large hollow needle into your hip bone and remove the marrow inside the bone. I was joking with the two nurses before, then 15 minutes of extreme pain, and then some more joking around.”

He added that there’s pain in paying to stay alive, but that the expense is worth it. He added that everything has gone right since he came to Mayo, which is “just the best” with “one of the best multiple myeloma specialists in the country. I try to head into every appointment with a smile and kid around with the nurses and doctors.”

Jackson, 62, described seeing her older brother in such poor health following his diagnosis as “heartbreaking.” When someone is always upbeat and happy, she noted it’s hard to put into words what it’s like to watch that person deal with pain, sickness and fear.

“The day he arrived at Mayo, my oldest brother, Dennis, and I were waiting for them. They drove in a snowstorm and arrived 12 minutes before their appointment. They were scared and overwhelmed, but the second we hugged and got him in a wheelchair to rush to hematology, in my heart, I knew everything was going to be OK,” she said. “He was at the best clinic, scheduled to see a top hematologist who specializes in multiple myeloma, and he was going to get through this. It was a long road that led to some dark places with lots of tears, but the next day, my optimistic brother had a positive attitude and just moved forward to get through the day. His stubbornness – I wondered, ‘Who thought there was ever a person more stubborn than our dad?’ – and sense of humor got him through every day. I think we were the only three people that sat and laughed in the lobby and doctor’s office at every single appointment.”

Kidney donation offer

Jackson continued to press for kidney donation if Northouse were to be declared in full remission, but as he weathered dialysis, he had great concerns about taking something that important from his sibling.

When he was finally declared with cancer in full remission after a long struggle, the dialysis four times a week continued, but he met a kidney specialist at Mayo Clinic who changed his thinking. He told him that a kidney from a deceased donor will generally survive about eight to 10 years after a transplant, but a kidney from a live donor will generally survive 20-plus years after transplant.

“The doctor’s wife had donated to her sister, and the doctor had no qualms about her doing it,” Northouse said. “I was starting to change my mind, and my sister was still persistently offering to donate, so I finally accepted her offer.”

Jackson had previously offered a kidney to their father when he had one removed after suffering from kidney stones and poor renal health – all three of his children had given him the option of accepting one of their kidneys – but he refused, and she feels that it’s because he “had an inkling I was to save my kidney for Craig.”

However, there is a lot more involved than just making, and accepting, a decision. There were blood and urine tests, and a phone interview, to determine if the two were a compatible match before moving forward. Once that was determined, there was intense medical testing, which included more blood tests, urine testing, chest x-ray, electrocardiogram, 17-hour ambulatory blood pressure test, stress echocardiogram, CT angiogram and multiple appointments with social workers, transplant nurses and coordinators, transplant psychiatry, nephrologist and surgeons.

“When she told me she passed all the tests and we matched perfectly, it was surreal,” Northouse said. “It marked the end of a dark time for my wife and me.”

Bumpy road slows process

But things were going to get very bumpy and trying for Jackson. When she was about to start the process, her husband became very ill, leading to hospitalization and hospice care. After his death, she was reassessed by the transplant social workers and psychiatry.

“They informed me after a loss of this nature, they usually have the donor wait for one year,” Jackson said. “We were again devastated, and it felt like another loss. They agreed to re-assess me after a three-month waiting period.”

She was then given the thumbs-up to move forward. She was given appointment dates about five weeks out and told she could call for cancellations, which she did daily.

“I got appointments a month early but kept this information secret from my brother and his entire family. After seeing a local couple go through this process and the donor not passing one final test, I could not imagine lifting my brother’s spirits and giving him hope to get off dialysis, only to disappoint them with the news I failed a test,” Jackson said. “My brother struggled to accept a living donor organ and had planned to wait for a cadaver kidney but was told his best option for survival was a living donor. So, I was the only person being tested and was totally stressed out on passing every single test, and there were so many! I didn’t want to let him down.

“So after I got the call that I passed and we had the green light to move forward, I cried for an hour. Then I told another little white lie – said he had to sign some medical release of information authorization forms so the donor and recipient team could exchange information. We met halfway, and that’s when I surprised him with a 3-D picture of my kidneys. Below, I typed ‘Right kidney belongs to Julie Jackson. Left kidney belongs to Craig Northouse. Kidney is slightly used but comes with a lifetime warranty. If you still want it, sign below.’ He chuckled at the ‘slightly used’ comment and then signed it. Since he was tired and sick, I had to explain that it was a picture of my kidneys, that the left kidney was his. He asked if I already started testing, and I told him I was done, everything was good, and he just had to call to get a surgical date.” 

Northouse finds it difficult to tell his little sister what her generosity means to him. “I just don’t have a good way to express my feelings on her being a donor,” he said. “How do you thank someone for a life-changing moment? I think she knows exactly how I feel when she looks into my teary eyes. Nothing needs to be said.”

He pondered, “How is anyone so lucky to have a sister like this? My parents would be beaming with pride if they could see her actions today. My mom would be worried big time with both of us in surgery at the same time, but afterwards, they would both be beaming with pride of their daughter. I don’t know how to ever thank her, but I suspect I will be mowing her yard forever. What a great sister. What a great sister.”

Jackson had other ideas than mowing as she anticipates having her brother build a porch on their parents’ house that she and her husband bought 12 years ago.

Still waiting

Transplant surgery was originally scheduled for Thursday, Oct. 17, but last-minute tests that help to verify the recipient’s health were scheduled and found worrisome results that have delayed Northouse’s and Jackson’s shared surgeries. Jackson, who was most certainly looking forward to seeing him live a normal life without the distress of dialysis, is awaiting further hope for the donation to go forward.

“I look forward to seeing Craig doing well. If he can have the transplant, there are no words. It’ll be a dream come true. I just want he and his wife to live a normal life again…I hope he and his wife can travel again and just enjoy their retirement and kids and grandkids. For now, lots of prayers,” she said.

Family bonds tighten

Before the pre-surgical testing found what might be the return of his multiple myeloma, Northouse stated, “Julie finds fun and enjoyment in everything and finds it easy to laugh. She’s one of those people that is just fun to be around. We have always been close, and this just makes the bond more special. I just hope I don’t inherit her loud cackle laugh after getting her kidney. At least, that is what I tell her. And nobody that knows my sister is surprised by any of this (donation). My sister is just ‘giver’ – she and her friend, Mary, have made pillowcases and quilts to give to nursing home patients for many years.”

Jackson has equal admiration for her big brothers.

“We grew up in an amazing family,” she said. “Our parents were the best. Taught us to be kind and always help others. We never fought. Ever. Is that weird? We lived a simple life, grew up in small towns and were just always happy. Craig is funnier than heck. We always laugh when together — we are only three hours away from each other and see each other all the time now with all his Mayo appointments.

“He’s positive, optimistic, and has the best outlook on life. I love to watch the relationship he has with his wife – they are perfect together. He’s just a fun guy to hang around with. He is stubborn like our dad and has a kind heart like our mom. He would do anything for me, so the feeling is obviously mutual. I feel so blessed, grateful and thankful that I might be able to do this for him after all the things he’s done for me.”

Even as they await the next step, Northouse and Jackson are glad to be in this together, doing what they learned from their earliest ages.

“Kindness is always returned,” Jackson said. “My brother is a pretty special guy, and I know he would do this for me if needed. Receiving grace is always harder than helping others. I’m glad our parents raised us how they did. They would be proud of all of us.”

Northouse added, “What a great sister and person.”