Bunn’s Prairie

My name is Andy. Before I jump into who I am and some background information relating to myself and Kaley, I would like to thank Taylor Kent (aka The Snarky Avenger) for his prayers, support, and for putting this site together for us.

The purpose of this blog is to disseminate accurate and relatively up-to-date information about the current state of Kaley’s health. In four+ years that I have known her, I have seen her health change hour by hour, making it nearly impossible for anyone not in the same room with her to keep up on how she is doing. My apologies for everyone who has called or gone down to visit her at the University of Minnesota, Fairview hospital, only to discover she had been discharged. Hopefully with this site, friends and family can read, first-hand, how Kaley is doing.

In 2003-2004, I was working as a software engineer for a local technology company. I had been there for over four years. Despite my youth (I was 25), I had earned enough seniority and respect that I was beginning to be given opportunities to move into the management ranks. Our new CTO (Chief Technology Officer) had recently pulled me aside and explained to me that I was in a unique position and if I played my cards right the sky would be the limit for me. I was being challenged at work. I had owned my first home for a couple of years and was finally no longer house-poor. I was also in the best physical shape of my life.

I was miserable. I was working ridiculous hours. The executive team had pissed on its employees too often during the economic downturn to retain any talent once the market fully rebounded. I realized that I was riding a train that I had no control over and had witnessed several obviously short-sited decisions that were time bombs waiting to go off. Outside of work, I was often too tired to partake in many activities that I would have normally enjoyed doing.

That winter, fate put me in contact with a young woman whose energy, charisma, and genuine love of life reminded me that success is not measured in titles, income, and personal accolades, but rather in how you live your life and the relationships you share with others.

Unfortunately, Kaley’s life was not all duckies and bunnies. She had been diagnosed with Type I diabetes 18 years earlier. Life with diabetes in 1986 was very different than was in 2004.  Many diabetics were still using bovine insulin (yes, insulin from a cow). It was standard practice to only check you blood sugars a few times a day and cross your fingers. You made your best guess and that was all you could do.

Being different in any way at age 10 is difficult. In Kaley’s case, being different meant having to give yourself shots with scary needles several times a day (even at school!). Being different meant having to learn in Health class that diabetes is a preventable disease and anyone who has diabetes had not properly taken care of their bodies. These teachers were, of course, referring to Type II diabetes, and failed to even acknowledge the existence of Type I.

Between crude early technology and social stigma (perceived or real), Kaley had a difficult time maintaining control of her blood sugar. By the time Kaley entered my life, she had developed several complications from diabetes, including retinopathy (eye disease), nephropathy (kidney disease), and gastroparesis (paralysis of the stomach). In spite of occasional (monthly) hospitalizations for her gastroparesis, she had put herself through college and held several steady jobs.

Despite having several chronic health conditions, nothing could keep Kaley’s spirits down. I remember once when she came over to visit me and my parents, my mother asked her how she had been feeling and how she was coping with her health. Kaley responded by saying, “I can’t change the past and have no idea what tomorrow will bring, but today I feel good and I’m enjoying a Tootsie Pop®,” while she flashed one of her ear-to-ear grins.

Unfortunately, by April of 2004, the hospitalizations had become more frequent. Kaley was referred to the University of Minnesota, to be put on the pancreas transplant list. Amazingly, after her evaluations were complete, she only had to wait three days before we got the phone call that there was an organ ready for her. She had the transplant on June 19, 2004.

Equally unfortunate, were the short-sighted decisions of the transplant team at the U of M. Through research, we became aware that “plumbing” her new pancreas to her bladder could directly cause increased urinary tract infections (UTI). By this point in time, we had extensive experience with Kaley’s response to UTIs. Whenever she has a UTI, her gastroparesis flares up and she ends up in the hospital with uncontrollable nausea and vomiting. We warned her surgery team of this, but they hooked her pancreas up to her bladder anyway. It would be “easier” for them in terms of identifying potential organ rejection. As a result, she spent the next 6 months in the hospital with continuous UTIs. In December of 2004, the transplant team went back in and “converted” her to a bowel hook-up. Since the bowel conversion, she has had blood drawn twice a week through her port-a-cath IV access, and rejection and pancreas function can be measured with the same ease and accuracy. Long story short, the damage to her kidneys had been done.

In June of 2005, Kaley was diagnosed with end-stage renal failure. Prior to the pancreas transplant, she was told her kidneys would last several (five to ten) more years, but 6 months of UTIs had taken its toll. This news began a new stage in Kaley’s medical life.  In addition to going to dialysis three times a week for three-and-a-half hours, her dialysis port (the tubes put in her to make dialysis possible) caused two major blood clots that required Kaley to be hospitalized for most of November 2005 through mid-January 2006.

Luckily, the life-threatening “kidney failure phase” for Kaley was fairly short-lived. A friend of mine from high school, Dave, decided to volunteer and donate one of his kidneys to Kaley. For that, we are both eternally grateful. The transplant was a complete success, and took place on February 23, 2006. Dave is doing well, and Kaley’s renal function has returned to normal. Her creatinine level is checked once a week, and is even lower than Dave’s!

The two transplants have cured her of the “cause” of most of her health problems, but have left us with several severe complications to conquer. The main problems remaining for Kaley are:

• Coma: I never thought I would ever have to write about this, but here I am. On August 22nd 2007 Kaley went in for an abdominal hysterectomy. The procedure was a huge success. 3 days later on August 25th, I received a phone call at 5:30 AM informing me that Kaley had coded. This had happened many times in the past, so I was not overly worried at the time. When I got there (less than 10 minutes later) the code blue team was still in Kaley’s room. After they were done and they transferred her to the ICU and she still hadn’t woken up yet, was when I started to get worried. When the gynecology team came by and expressed their sympathies, I had to re-evaluate what I was seeing. Kaley hadn’t woken up like the other times. She stayed in this comatose state for about 5 days. On the 5th day she started to wake up. She has been waking up slowly since then. See appears to have the ability to talk, hear, movement in all limbs, and the ability to understand complex relationships. Each of these abilities come and go depending on the day. Please see the latest post for the latest info as this is obviously Kaley’s biggest issue at this time.

• Gastroparesis: This is the cause of Kaley’s frequent hospitalizations. Post- pancreas transplant patients have been know to sometimes re-grow nerves, including those that would help cure her of this condition. This process is slow and generally takes several years for people to notice a difference. We made a trip to the Mayo Clinic in Rochester Minnesota in late 2005, and have now seen a measured improvement to her gastric emptying. This is encouraging, and now that Kaley has a new kidney, we believe she will continue to re-grow these nerves.

• Vision loss: Despite multiple surgeries on both of her eyes, she is mostly blind in her left eye. Her retina detached twice, and she was told there weren’t enough viable vessels to use for a third reattachment. Until new technology is found to help improve blood flow to damaged blood vessels, this condition will remain unchanged. New breakthroughs in stem-cell research have shown promising advancements in growing retinal blood vessels (the smallest in the human body). We can only hope that someday this technology may restore some of Kaley’s sight.

• Orthostatic hypotension: Do to the fluctuations in blood pressure that this condition causes, Kaley has to be extremely cautious when “out-and-about” and even at home. Her blood pressure can be well within the normal range lying or sitting down, but when she stands, it can immediately drop to a dangerous level. She becomes dizzy, disoriented, and “whites out”, where she can’t see anything in front of her. Kaley frequently trips and has also fallen, on occasion. It can be very scary for her and those that are with her. Recently, her Primary Care doctor has prescribed Midodrine, which quickly elevates blood pressure. This has been proving useful and fairly effective. Unfortunately, its effects diminish quite quickly.

• Hearing loss: We first began to notice that Kaley’s hearing was diminishing in October. By the holidays, it was becoming very noticeable to us both, and by late winter, she was evaluated at the Audiology clinic at the U of M. The results, and recent retesting, have shown a rather complex range of hearing loss. At both low and high end frequencies, the loss is considered “severe” or “profound”. Other mid-range frequencies such as conversation levels are more moderate, but background noises, ringing in her ears, and volume fluctuations have effected her ability to enjoy basic conversation, listen to music, sing in choir, watch movies, and hear on the telephone. We are entering the world of hearing aids, shortly, with both a little trepidation and a lot of excitement.

 

Thank you for all of your thoughts and prayers. We need any help we can get.

God bless.