How it Will Happen

When I awake in the morning, the first thing I do is glance at my cell phone. So far, I have not missed any calls in the middle of the night, which would be a difficult thing to do because the settings are switched to "old timer ringer" at the maximum volume.

As I hop in the shower and turn on the water, I imagine how it will happen.

Several months ago, my brother, Christiana and I went to a morning class at the IMC which covered what to expect when you're on the waiting list for a transplant. It was explained that each recipient is given priority depending on their general health and how long they have been waiting on the list. A woman in charge of the program explained how the recipients are chosen without bias, based on computer programs and the type of organs they are waiting for. The liver, for example, gets top priority. A perfect match can also move you up on the list.

She explained the call will typically come in the middle of the night between 1:00 and 3:00am. She said sometimes they will call if you are the 2nd person in line, because they might not be able to reach the first person on the list, or that person may be sick or have an infection which would stop the transplant from taking place. So they will keep you posted as a "backup."

The surgery generally takes place in the early morning, so from the time the call comes in until the time of surgery is only a few hours. A kidney-pancreas transplant takes roughly 8 hours to perform. It was explained that the surgeons working on the transplant will be surrounded by large screen monitors so no matter where they look they can see what they are working on.

After surgery, the hospital staff will closely monitor my body to make sure there are no complications. It was advised that the new organs may or may not start working immediately. In some cases it can take several hours for the body to recover from anesthesia, so they monitor everything around the clock.

We were told, "Don't be surprised if nurses come into your room shortly after you wake up and get you out of bed. Yes! On the day of your surgery we will have you get up and walk around your room. Research has shown that the sooner we can get you on your feet, the sooner you will recover and start working with your new organs."

Then she added, "Don't be surprised if we ask you to pass gas before we leave. We want to make sure your digestive system is working properly too."

Rob and I laughed out loud. Anyone who has brothers knows all about the importance of a fart, however I don't think anyone has ever requested one on demand. This will be interesting...

I guess I'll be in the hospital between 5 and 10 days. I'm not looking forward to it because I know I'll feel cooped up after the first hour. According to Scott Bowles's blog, it will take longer than a month for me to feel like myself again. And as far as not being diabetic... I think it will take a LONG TIME for me to get used to that. But I will. So much of it is habit right now. It's difficult to imagine life without diabetes.

Christiana and I were laying in bed the other night when she said the following:

Chris: "Do you know how amazing it is that we are doing this?"

Jake: "What do you mean?"

Chris: "So many people would be upset, or choose not to deal with any of this stuff. Dialysis, transplants... Even my mom said that we really are dealing with A LOT."

Jake: "Well, it's what we have to do for me to stay alive. If we don't deal with it, I die."

Instead of focusing on the big picture, sometimes it's easier for me to take one day at a time. Today, I woke up and went to dialysis so right now I feel a little drained. But I will play tennis tonight with Bart and my brothers and have a wicked good time. Tomorrow, no dialysis! I have an entire day of normalcy. And then the morning after that I'll go to dialysis again. It repeats.

Until the next morning when my cell phone rings at 2:30am and they tell me it's time. Right now, it's a waiting game.

Drawing a Picture

At dialysis, I admire how the techs and nurses take care of the patients with genuine concern and sympathy. Just like anywhere in the world, some of the patients are grumpy, some complain, but most return the kindness with smiles and laughter. Because we are all there at the same time each day of the week, it isn't long before everybody feels like a family away from home.

Jake: "You have to really care about people to work here, don't you?"

Diana: "I guess so."

Jake: "I think you do. I've seen the way some of the people treat you, yet you always approach them with kindness. Not everybody could do that. I know it would be hard for me."

Diana: "Yeah, I guess I learned a lot when I worked in the nursing home before I came here. One old dude bit me on the elbow. That freakin' hurt! And another guy liked to kick me."

Jake: "Really?"

Diana: "Yeah, he'd kick me and say, 'You like that?' Then he'd grit his teeth and sneer and kick me again. That old man would laugh too!"

Jake: "Ha ha ha! At least nobody here bites you."

Diana: "True. Ha ha!"

I don't remember where I heard this, but it was explained that children with cancer were asked to draw a picture of their disease using crayons. The result was two types of drawings. One illustrates a big monster, taking up most of the page next to a small frowny-face kid. The other is a small dot or a scribble surrounded by a team of big strong doctors. The children who see their cancer as small and harmless are the ones who have a better chance of survival. They benefit from treatment significantly more than the kids who think their cancer is too big.

Doctors want patients to know there is a strong team of specialists behind them to help take care of the cancer and make it go away. That is how I feel about kidney failure. I know I am surrounded by a team of amazing specialists and friends who encourage my health and well-being.

If I were asked to draw a picture of my kidney failure and diabetes, I would draw myself smiling with a big red smiley face on my tummy. By my side, Christiana would be smiling along with my brothers, my dog Moses, everyone at the dialysis center, the team at the IMC transplant center, Dr. Cline, my co-workers, and all of my friends. Everyone would appear eager for a successful transplant and we'd all be ready to party!

It's strange to think how living with a disease can affect the way you view the world. For me, it's been a positive experience because it's given people several opportunities to show how much they care. And they really do. I don't know if I would understand how deeply people cared if I wasn't diabetic. It also brings intuitive strength and perspective.

It's strange to think about living without diabetes, but I'm really looking forward to it.

The Difference

"Life is either a daring adventure or nothing."

- Helen Keller

• I painted several different rooms in our home.
• I play tennis once a week with my good friend Bart.
• I throw Margarita parties and we play Texas Hold 'Em Poker.
• I BBQ, mow the lawn, rock out on PlayStation 3 Rock Band.
• I run a small business from my home in addition to working a full time job in corporate America.
• Chris and I traveled to Oregon in May. I spent an afternoon at a dialysis clinic that was pre-arranged by the lovely Rosemarie in Salt Lake City, Utah.
• I drive a manual transmission car.
• I walk on a treadmill.
• I socialize.
• I watch movies, I read books, I write blogs.
• I make mix CD's.
• I create song remixes.
• I spend time with friends and loved ones.

In other words, I do everything I was doing before my kidneys failed. Dialysis doesn't hold me back, it only makes me stronger.

Low Blood Sugar

Being diabetic is something I've always known. In other words, I never had to become familiar with the disease because I've always had it.

What is type 1 diabetes? Simply put, it is when the pancreas no longer retains insulin-producing cells. When a person without diabetes eats sugar (in any form- carbohydrates, fructose, etc.) the pancreas regulates the amount of insulin to produce. Insulin converts sugar in the blood stream into energy for use in the rest of the body. Without insulin, excess sugar remains in the blood causing damage to the heart, the eyes, the brain, and the kidneys. The damage doesn't happen all at once but rather over a period of many years. For instance, a person with type 1 diabetes is bound to see some side effects from the disease at one point or another. Even under the strictest care, diabetes takes it's toll.

Of course, we all need some sugar in our blood for the brain to work properly. So how does a person with diabetes get the right amount of insulin? When you're diabetic, YOU are responsible for manually injecting insulin into your body. The pancreas isn't doing it, so you have to. You are also responsible for checking your blood sugar before and after you eat to make sure you are giving the correct amounts of insulin. It seems like a daunting task, but it's only a few extra minutes out of an entire day.

As you can imagine, dealing out insulin is tricky. It's a balancing act. Every time you eat, you have to figure out how many carbs you eat. Based on that number, you need to calculate the amount of insulin to inject through a syringe. Or if you have an insulin pump, you simply program the amount of carbs into the pump and the required insulin will be calculated for you. You also have to manually check your blood sugar a few hours after you've eaten to ensure you've given yourself the correct amount of insulin. If you didn't, your blood sugar will either be too high or too low. If it's too high, you may feel groggy and tired so you'll need to give yourself more insulin, If your blood sugar is too low you may feel confused, shaky or unable to concentrate. Before you're blood sugar gets too low, you'll need to consume quick-acting sugar like natural orange juice or fructose to bring your blood sugar level up to normal.

I've had my fair share of "low blood sugar" moments. Some of them have even resulted in what is known as a "diabetic seizure," though it is not a real seizure like someone with epilepsy would experience. For a diabetic, when there is not enough sugar in the blood, the brain cannot properly function. The brain needs sugar, but when there is not enough, the brain's main responsibilities cannot be met. System start shutting down- the first being the nervous system. This can result in one or a few of a myriad of symptoms, including but not limited to the following:

• body twitches
• loss of vision
• confusion
• sweats
• rapid heart beat
• dizziness
• loss of self-awareness
• loss of understanding of immediate surroundings

This is when being diabetic is scary. This is when a pancreas transplant sounds like the best thing in the world so you don't have to experience another low blood sugar moment.

I'd like to share with you the most alarming low-blood sugar moment I've experienced. This is not a normal occurrence nor is it an experience I imagine happening again, but it is one reason to be hopeful for a successful pancreas transplant in the near future.

The following is an entry from another of my blogs called "Story of M." Source: http://tunnelscene.blogspot.com/

April 9, 2010 I should be dead. I don't know how I'm still alive, but I am VERY THANKFUL to be here. YOU CANNOT KILL ME!! I CANNOT DIE!! That was my Facebook status update last night after I got home from work. Yesterday on my way home in rush hour traffic, my blood sugar plummeted and I lost track of reality. For 15 miles of heavy congestion, I was oblivious to my surroundings. I sped in between lanes of cars and road construction, I ran a red light, and somehow pulled a wild U-Turn. Finally, I slowed my car down and smashed into some wild giant bushes growing from the median of a busy street. And I don't remember any of it. Luckily, I didn't hit anyone, and nobody hit me. The only damage are a few scuff marks on my drivers side door from where I ran into the bushes. After the paramedics revived me, the police asked me what I remembered. J: "The last thing I remember was being in Fort Union... I was on my way home, which means I was traveling south, but I have no idea how my car is facing north." Lady cop: "I man in a pick up truck followed you from Fort Union. He thought you were drunk. He was behind you as you drove all the way from Fort Union to Draper, where you turned around and continued back in the opposite direction. Eventually, you brushed against the bushes right there and stopped the car. Do you remember that?" J: "No. Did I hit anybody?" Lady cop: "Luckily, no. Another woman pulled up after we got here and said she witnessed you speeding through lanes of traffic, making your own lane. She saw you drive through a red light at 9400 South and 1300 east." J: "Oh my God!" (Looking down at my body.) "In rush hour traffic?? How am I alive?" Lady cop: "I dunno. It could have been a lot worse." I examined my car. Amazingly, it looked perfect. Another officer pointed out the scuff marks on my door. I couldn't see them until I leaned down and strained my eyes. Lady cop: "I'm giving you a ticket for INCAPABLE OPERATOR." J: "Oh no... Is that like a DUI?" Lady cop: "No. It basically means you were incapable of operating your vehicle due to being asleep or ill. I could write you up for speeding, reckless driving, and running a red light, but... We'll just leave it at that." J: "Yeah, OK... I can't believe I'm not injured." Lady cop: "You are very lucky." J: "I feel like I should be on that show, I SHOULDN'T BE ALIVE! Hey, is the man int he pick-up truck still here?" Lady cop: "He gave us a statement and left." J: "Oh... I wish I could have thanked him. Most people would have flipped me the bird and drove off. It was really nice of him to follow me to make sure I didn't hit anyone. He probably saved me from being rear-ended when I finally stopped the car." Lady cop: "Don't worry, we thanked him for you." J: "I put a lot of people in danger. Can you believe I'm still alive? I should be dead! I'm really glad I didn't hurt anyone. I'm really glad I'm still here." My cube mate at work told me I was being watched by angels. I don't know about angels, but thanks to a few good people and some great police work, I am here. I've always thought of life as kind of a 'BONUS,' you know? But now it feels EVEN MORE like a BONUS! It's time to party!"

It's time for a kidney-pancreas transplant!
 

Perfect Match

People: “Can you get a kidney from one of your family members?”

Jake: “Yes, my brother is a perfect match, however I want a kidney AND a pancreas so I need to wait until I can get them from the same donor. (You need your pancreas to live.)”

People: “What does a pancreas do?”

Jake: “It produces insulin. With a new working pancreas, I will no longer be diabetic, which will extend the life of my new kidney.”

I can’t really understand what not being diabetic means. For as long as I can remember, I’ve lived in a world of insulin shots, blood sugar tests, insulin pumps and sugar-free soda. It will be nice to let go of it all, but it’s difficult to perceive how it will feel.

Pretty good, I bet.



After I completed most of my pre-transplant work up, I sent out two text messages. The first went to a good friend of mine named Kenny, the second went to my half-brother James.

Txt messages: “I just found out my blood type is ‘O.’ We’re not a match, but thank you for the offer of your kidney.”

I knew Kenny and James had different blood types, and while they were both serious about giving up an organ, our blood types are incompatible.

Then I called my brother Rob.

Jake: “Dude, I just found out my blood type!”

Rob: “What is it?”

Jake: “’O.’ Do you know what yours is?”

Rob: “Nope.”

Jake: “Well, bro… if you are serious about giving me a kidney, I have some information for you.”

Rob: “You gotta let me do this, Jake. Let me give you a kidney.”

I didn’t expect him to be so excited. I imagine most people wouldn’t be so thrilled to have a living organ removed, but perhaps I’m wrong. Or maybe Rob believed the joke would last a lifetime: “You know you want my organ permanently inside of you!” Classy.

I’ll admit, when I told him to go into the transplant center at the IMC to get some tests done, I wasn’t aware of the magnitude of what I was asking. I was thinking of the jokes and how funny it would be if he really gave me his kidney.

And then, a few days later, that all changed.

Rob: “I just got the results, Jakey. I am a PERFECT MATCH!!”

Jake: “No way!”

Rob: “Yeah, dude. A PERFECT MATCH. When do you want to do this?”

Jake: “I don’t know. Let me talk to Stephanie and see what the next step is.”

Rob: “OK, bro. I am excited to do this!”

I’ll never forget hanging up my cell phone. I was alone in the house. I just sort of stopped for a minute and felt like I was going to crumble. All at once, the significance of what Rob was offering hit me like a ton of bricks. I felt grateful, unworthy, loved, and sadness all at the same time. I was overjoyed that Rob and I share matching blood types, but I didn’t want him to go through the surgery and live the rest of his life with only one kidney.

I called Stephanie and talked with her about what to do next. During the conversation, I asked if Rob and I should do our surgery first and then wait a few months before I get a pancreas from a cadaver… That’s when she explained how it’s done.

Typically, unless I have major health concerns, the goal is to get a matching kidney and pancreas from the same person. That way, I am only fighting off one set of antibodies instead of two. Once I got my head around the idea, I made the decision to wait for both organs from the same cadaver.

How was I going to explain this to Rob?

I wanted to tell him in person so I called his cell and asked if he could go to lunch with me the next day. He knew something was up and he hounded me to tell him right then and there so I did. It was the worst thing I ever had to tell anyone.

Picture it- your sibling is genuinely excited to give you one of his organs. This isn’t some store-bought present wrapped in a decorated box on Christmas. This is the selfless gift of life. Imagine how that would feel. Now imagine turning the gift down.

I explained to my brother the reasons why I couldn’t take his kidney, and although I know he understood, I also know he was disappointed.

Jake: “You’re not off the hook yet. You are still my backup plan. And seventeen years down the road, I might ask you for your kidney again. Then you can have your joke back.”

Rob: “Whatever you need, Jake. Just tell me how I can be there for you and I’ll do it.”

Jake: “Thanks, Rob.”



One important aspect of kidney failure is the ability to experience people genuinely caring for each other. Both of my brothers would give me their kidney without a second thought. Kenny, who isn’t even related to me, would gladly do the same. Christiana wanted me to have hers, and even my ex-wife Erin was ready to donate. I’m not sure how I got to know some of the greatest human beings on the face of the earth, but I sure am glad I do.

Thank you, guys! I love you.

To register yourself as an organ donor in the United States, click here.