Wednesday, July 28, 2010

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.

Monday, July 26, 2010

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.

Friday, July 23, 2010

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.

Thursday, July 22, 2010

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:

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!

Monday, July 19, 2010

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.

Thursday, July 15, 2010


I was born optimistic. I don't know why or how, but I've always been a person who believes in the power of positivity, no matter what the circumstance.

That being said, I'd like to tell you about a time when I wasn't feeling so positive, and how my attitude was changed for the better. This takes place a couple of weeks into dialysis when I experienced massive leg cramps during treatment, and again later at night.

The first time I felt a twinge in my right foot during dialysis treatment, Leslie's voice echoed in my mind. "You might think you can ride it out because the twinge will go away, but it won't. Let us know so we can stop the machine..." Even though I knew I should alert somebody, my natural instinct had other plans. I wanted to see if I could ride it out. I couldn't.

In an ideal world, fluid would be stored equally throughout the body. Because it's not, the feet and legs sometimes have less fluid in them, so if the dialysis machine pulls liquid too quickly, or tries to pull too much, it can result in a leg cramp.

It starts with a funny twinge that goes from one side of my foot to the other. (This is where I hear Leslie's warning but decided to ride it out.) Within seconds, the twinge is replaced by a massive leg cramp in the entire calf muscle. I squirm in my seat and grab onto the arm rest with white fingers. I try to call out, but my voice is stuck somewhere in my throat. My eyes look from left to right hoping someone will see me and come to my assistance. After several excruciating seconds, I managed to yell something and Diana flies to my side. She looks at my face and knows what's up.

Diana: "Are you cramping?"

Jake: "Yes! Ow, ow ow..."

Diana: "OK, I'll stop the machine."

Leslie joins us. The two of them squeeze a bag of saline solution that is attached to one of the tubes in my arm. This action forces a rush of fluid through my body, giving me some much-needed hydration.

Leslie: "Are you feeling better?"

Jake: "No. I'm still cramping."

Leslie: "OK. We'll get this fluid to you. Are you feeling nauseous?"

Jake: "A little."

Another tech runs over with a medical bib and a small pink plastic tray that I hold under my mouth.

Leslie: "You look pale. If you throw up, try to get it in the container."

Jake: "I don't think I'll throw up. I haven't eaten anything."

Diana opens a breathing tube from a package and hooks it to my nose. She attaches the other end to a portable oxygen machine and turns it on.

Diana: "Breathe deep."

Jake: "OK..."

After awhile, the cramp goes away. I feel wiped out. I'm not going to puke, but my stomach is all twisted up. I inhale the oxygen and close my eyes in an attempt to relax.

Leslie: "Did you feel the twinge in your feet?"

Jake: "Yes."

Leslie: "Remember, you have to tell us when you feel it. It WILL turn into a cramp."

I laugh. She told me all right. But I am human, and for some reason humans like to experience some bad stuff just to know what it's like. It doesn't make any sense, but I suppose we do it for the experience.

After the session ended, I felt completely drained and exhausted. Even though I was only sitting in a chair for 3 1/2 hours, it felt like I had run a marathon. I wanted to go home and sleep, but I couldn't. I had a full shift of work ahead of me.

The drive to work was OK, but once I sat down at my desk and turned on the computer, I got a wicked case of shivers. I felt cold and tired. I sat there at my desk with my head down and waited for it to pass. It didn't, so I got up and walked around for a bit. I drank some filtered water and ate some breakfast. I felt better, but still very drained. Later in the day, I cried. One of my co-workers told me I would be OK, but I didn't believe her. I cried in my car all the way home.

Later that night, during the British Columbia Olympic opening ceremony, my leg cramped again. There wasn't a twinge like when I was on the machine, it was just a regular cramp in the same spot. Christiana, my girlfriend, asked if they were pulling too much fluid from me during treatments. Maybe I was dehydrated. I didn't know. I just knew I was tired and weak. I felt beat up. I loathed getting up so early, three times a week, and I dreaded feeling so exhausted after each session. I wished I didn't have to work. I wondered if I should take a leave of absence until I got used to all of this...

Suddenly, I wasn't very optimistic. I started to feel resentment, anger. I was overwhelmed. I felt defeated.

I didn't try losing weight the first two months of dialysis. Instead, it was a time dedicated to getting used to everything. I didn't feel like exercising, I just wanted to sleep.

The cramps came and went, sometimes worse than others. I told Leslie about it and she made adjustments on the machine. After awhile, we tried transforming the recliner into a chair in the "sitting up" position during the last 30 minutes of treatment. That helped. They also changed the settings so the machine would not pull any fluid during the last 30 minutes. This helped greatly. But it wasn't until I decided to stop taking as many diuretic pills that I really noticed a difference.

You see, diuretics grab excess fluid and salt from the body and forces them into the bladder. (At least, that is my understanding of what they do.) The dialysis machine also takes excess fluid from the body. So I was doubling my efforts with dramatic results. As soon as I cut down from 5 pills twice a day to 2 pills once a day, on my non-treatment days, the cramps stopped completely.

But before they stopped, I scheduled an angiogram at the IMC hospital. The angiogram was the last bit of "work-up" I needed to complete for my pre-transplant screening. I did most of the work-up months prior, but I had to schedule the angiogram after I started dialysis because the dye they use during the procedure damages the kidneys.

I was scared. I knew my organs were failing, but scheduling an appointment that might kill them off completely terrified me. I talked to Dr. Cline about it and he informed me they would use as little dye as possible. He said it was up to me if I wanted to go through with it, but he assured me it would be OK. So I made the appointment.

For those of you not familiar with an angiogram, here's a summary: They stick a needle into your groin, then they slide a tube through the needle all the way up through a main artery up to your heart. There is a tiny video camera on the end of the tube so they can see how your arteries look on a monitor. Your arteries better be healthy because if they aren't, you could have a heart attack during the transplant. Luckily for me, I am extremely healthy for a person with diabetes and kidney failure. What can I say, I have good genes.

I thought this would be an "in-and-out" sort of thing. It's not. You need to schedule a full 8 hours for the whole experience. I wasn't told this beforehand, so when Christiana and I arrived at the IMC, I was shocked at the discovery. Chris had a feeling it would be all day, because someone she works with had one done recently and told her about it. I wasn't ready for this, and with all of the cramping in my legs, the early morning wake up's, the exhausted feeling after dialysis, being diabetic for 32 years, pricking my finger five times a day, the low blood sugar moments, the high blood sugar moments, my failing kidneys, dialysis- EVERYTHING just seemed to pile up on my shoulders as I lay there in the hospital room before the procedure.

I went inside my own head and stewed in a swarm of negativity. Christiana could see the distress in my face and she tried to console me, but I wouldn't have it. I was angry. Enough was enough. I didn't want to do any of it anymore. I wanted to give up. It wasn't worth it.

The procedure went OK. The team of specialists who performed it were awesome. They were laughing and cracking jokes with me the whole time. I remember thinking that if I lost my current job, I should come and work here because these guys know how to have a good time at work! Of course, the pain killers helped a lot and I even flirted with one of the female docs. She had beautiful half-Asian eyes...

Afterward, I was wheeled back into the hospital room where Chris was waiting for me. I could tell she had been crying. She knew I was in distress and probably felt helpless to do anything about it. In a lot of ways, I think some of the things I've gone through have been harder on her because even though she's a part of it, she's on the outside. The mind can make things seem much bigger than they are when you're not the one dealing with it on the inside.

I should take some time to say that Christiana has been awesome through all of this. She is there for me when I need her, without the tiniest complaint. She is a source of natural optimism. I don't think I could do much of this without her. And that's the truth. Everyone should be lucky enough to have a Chris Jarvis in their lives. She works miracles.

That night, we got home and I plopped myself on the couch while Chris prepared a healthy low-sodium dinner. I was still feeling crummy, but I at least the angiogram was over. I was told my arteries looked good, and I was given the OK to have a kidney-pancreas transplant. I just needed to lose some weight.

Sitting there on the couch, I flipped through several TV stations. I stopped on a program about a girl born without a face. Juliana Wetmore. It was tragic. Here was a four-year old, intelligent, charismatic, strong little girl born without any skeletal structure in her face. You can see pics and videos here:

I sat there and witnessed Juliana's parents and siblings talk about her with genuine love and admiration. I saw her cry in the hospital because she had to undergo her 25th surgery before the age of 5. She breathes through a tube in her throat, she eats liquid foods through another tube. But if you watch her for a few minutes, you can see the brilliant, positive, strong soul that Juliana embraces. She is a fighter. She smiles with her body, and she gives off complete brilliance... and here I am feeling sorry for myself because I have to sit in a chair three times a week.

I asked myself how I would feel if I had the opportunity to meet Juliana Wetmore in person. Without a doubt, I knew I would feel inspiration. I would share her determination to be the best person I could be, and I would love each day I was here, ALIVE!, surrounded by good friends and family. Each day is bonus, and each one of us has a choice to spend that day in grief, or in happiness.

After seeing Juliana's outlook on life, I choose happiness! I choose optimism!

So I wiped the tears from my eyes, hugged Christiana and told her I loved her.

It was as simple as that. The positivity was back and it was here to kick ass!!  So bring on that beautiful transplant. Let's do it with a smile!

Tuesday, July 13, 2010


They say it's different for everybody- the symptoms of End Stage Renal Failure (ESRF). I remember laying in bed at night wondering what would happen. I remember thinking I might feel my kidneys 'POP!' inside of me. Dr. Cline assured me that my kidneys wouldn't 'pop.'

Dr. Cline: "It's a gradual process. You might start feeling logy, or have a lack of energy even after you've slept. You might feel nauseous, you might lose your appetite or you might start throwing up after you eat. You might experience fluid in your lungs so if you have difficulty breathing, go to the emergency room right away!"

I like Dr. Cline. He seems to know everything about kidneys, and he knows a great deal about a lot of other things too. He treats me like a human being first, and one of his kidney patients second.

When Dr. Cline asked me if I ever had trouble breathing, my response was typically the same- "My breathing is OK except for my allergies. Man, they are getting bad. This stupid cough..."

My blood work indicated I should have been on dialysis a year sooner than I was, but I showed very little symptoms, so the doc kept me on diuretic pills to keep the swelling in my feet and ankles down. They got really swollen because I was eating too much sodium and my kidneys weren't filtering it out so the salt would settle in my lower extremities. It scared the crap out of me. One night I could barely fit my foot into a sneaker. Dr. Cline adjusted my pill intake and told me to call him if I experienced anymore "changes." I was also on a sodium restricted diet which wasn't that thrilling to begin with, but after a week of no salt, food began to taste good again.

The fistula in my arm was developing nicely. The operation was performed on my left inside elbow (the part where your arm bends) and the vein was puffing up. You could see the blood pulse with your eyes and if you put your hand over it, the vein throbbed in a powerful rhythm under your fingers. Pretty cool! I had the operation in October 2009 and the target date for the vein to be fully "built up" and ready for use was February 2010. Just in time...

For the last week of January, my brothers Rob and James took me on a road trip to Las Vegas, where we spent 3 days and 2 nights of absolute hilarity and Vegas-style adventure. I can't describe a lot of what we did because you know the saying... 'What happens in Vegas...'

Still, I probably should have started dialysis BEFORE we went because I suddenly experienced almost all of the aforementioned symptoms before we left. I lost my appetite, my face was pale, I had no energy, my feet and legs were swollen, and I felt nauseous. Plus, I noticed I was hardly using the restroom. In Vegas, I couldn't walk more than a few feet without feeling worn out. My breathing was interrupted constantly by a deep cough. There was one morning when we walked a few miles in the hot sun that I knew without a doubt that I needed to start dialysis as soon as I got back.

The time for dialysis was here! So now what?

We got back from Vegas and I called Dr. Cline's office first thing the next morning. The receptionist said Dr. Cline was out all week but she would page him for me. I went in and did more blood work. From the results, and from my new symptoms, we decided it was time to get me on the machine.

They set me up at a center close to my home called South Mountain Dialysis. A nurse from the clinic named Leslie called to inform me they had one time slot available- Monday, Wednesday, and Friday at 6:00AM. She also explained that I would probably be there between 3 to 4 hours each day.

For my first visit, I would only be on a dialysis machine for 2 hours. The next day, I would be on it for 3. Kind of like baby steps until I was able to handle the full 3 1/2 hours.

Jake: "Will I be able to go to work after a treatment?"

Leslie: "Most of our patients don't work. They are retired so a lot of folks just go home and sleep because they tend to feel drained afterward, like when you give blood. There is a nurse here who calls it "The Washing Machine Effect." But it all depends on how YOU feel. Everybody is different."

I scheduled my first day of treatment off of work and went to the center. The building is located down the road from a newly developed business district, across the street from a Lifetime Fitness Center. There is a large open area to the north of the building and a big mountain of dirt to the south. I heard from one of the tech's that they have been building the mountain of dirt for over a year and there is no completion in sight. Who knows what it will become?

Before I continue, it should be known that I feel at home in hospitals, Dr.'s offices and the like. Being diabetic since the age of 3, I've spent my fair share in the care of medical professionals so I admire the dedication and genuine care more of them provide. I like doctors and they seem to like me. Win-win!

On the morning of February 9, 2010 - I walk through the sliding glass doors of South Mountain Dialysis for the very first time. A lovely receptionist named Rosemarie sits at a sliding window, busy with paperwork. She looks up.

Rosemarie: "Hi! How are you?"

Jake: "I'm good. How are you?"

Rosemarie: "Well, I'm doing OK. How can I help you?"

Jake: "My name is Christopher Jake Cordova and I'm hear for some dialysis."

Rosemarie: "Oh, OK! Let me get a nurse for you. Come on through the door there and we'll get you going."

I open the door and smell a combination of hand sanitizer and cortisone cream. If I take a few steps to the right, there is a metal weigh station equipped with a rubber grip bar, a digital readout in kilograms, and a small receipt printer.

This is where Leslie meets me.

Leslie: "So, you're Jake! It's a pleasure to meet you in person. Let's start by getting your weight and then we'll get you settled in."

Jake: "Sure."

I weigh myself and print out a receipt.

Leslie: "You'll want to weigh yourself when you first get here and then before you leave. That's how we know how much liquid to pull."

Jake: "Every time?"

Leslie: "Every time."

To the right of the weight machine is the main room of the center. It is a perfect square with large open windows and clean white walls. There are brown leather recliner chairs alongside 3 of the walls. Next to each chair is a machine about 5 feet tall and 2 feet wide. There are plastic tubes coming out of the machine and the front is an array of 2 spinning wheels, buttons, a stationary swirling tube and blinking lights. This is the dialyzer.

Leslie has me stand in front of a chair while she slips a white cuff over my right arm. She wraps a blood pressure sleeve over the cuff and takes my blood pressure electronically. The result flashes on the dialyzer machine. Next, she uses a stethoscope to listen to my chest, my back, and my fistula. Finally, she examines my feet for swelling. (They are pretty swollen.)

Leslie: "Oh, I should have told you to bring a blanket. You can get pretty cold when you're on dialysis because the machine lowers your blood pressure. Do you want to just use your coat today and bring a blanket in next time?"

Jake: "Nah, I'm always warm so I think I'll be OK."

A technician named Diana sticks a thermometer in my ear. Diana is a spunky woman, always laughing, always encouraging. I learn very quickly that one of the patients has a nick name for her. "Sassafrass!"

The technician's responsibilities, as I understand it, is to prep the dialysis station before I arrive. She sets up the area with the required supplies- tubes, needles, band aids, alcohol swabs, gauze, etc. She is also in charge of sticking me with needles.

Diana is wearing a white lab coat, a clear plastic face shield, and rubber gloves. (The outfit of "Sassafrass!")

I sit down in the chair and Diana checks out my fistula.

Diana: "Whoa! You have a great fistula. Whoever did this knew what they were doing. Look at that!"

Leslie: "Oh that will be so easy to access. You won't have any problems. Who did it?"

Jake: "Dr. Wirthlin-"

Leslie: "Oh yes! He always does a good job. You are lucky."

Jake: "Thanks."

Diana wipes my arm down with a cleanser.

Diana: "OK, we're gonna start you out with smaller needles and work you up to the big ones."

Jake: "Does the size of the needle make a difference?"

Diana: "We can pull more fluid faster with the bigger needle but we'll start you out small for a few weeks, don't worry."

Jake: "I'm not worried about needles. I've been a human pin cushion for 32 years. HIT ME!"

All 3 of us laugh and then Diana places a needle into my fistula vein just above where my arm bends. Blood enters the tube and stops about an inch from where Diana poked me. I watch the blood pulse in time with my heartbeat. It goes out, like it's going to fill the tube but then goes back down in time with each beat.

Jake: "Wow! That is kinda cool."

Diana: "Yeah, it's neat to watch, huh?"

Jake: "Yeah!"

She tapes the needle in place against my arm with a piece of white skin tape by placing it over the puncture site, then she folds a second piece of tape and maneuvers it under the needle to keep it in place.

Diana: "How does that feel?"

Jake: "Not bad, not bad."

Diana: "Ready for the 2nd one?"

Jake: "Let's do it!"

Diana: "OK. 1-2-3..."

The second needle goes in about 2 inches above the first. The same blood pulse rhythm happens and I gaze in fascination. After taping the second needle up in the same manner as the first, Diana flicks something on the end of the tubes and they fill with my blood.

Diana: "Still OK?"

Jake: "Yes."

Diana: "OK."

She connects my tubes with the ones coming out of the machine, then she pushes a combination of buttons and I watch as my blood travels out of the bottom tube into the machine. Simultaneously, saline solution travels from a bag hooked up to the machine through the upper tube and into my arm via the higher needle. After awhile, when the machine has done it's thing, the saline solution is replaced by my blood, now clean from being treated through the dialyzer. It is a technological marvel!

Jake: "I guess you can't be afraid of blood if you want to work here."

Diana: "You get used to it. Do you want a pillow for your arm?"

Jake: "Sure."

She hucks a pillow under my arm and tells me to try and keep the arm as still as possible during the process. A-OK! Then she leans my head back and the recliner transforms into a one-person chair bed. My feet fly up slowly and I am practically laying on my back.

Diana: "Comfortable?"

Jake: "Yeah."

Diana: "All right."

She hands me a TV remote. I look up and notice there is a TV set suspended in the air above each chair. In the center of the room below the TVs is a rectangular desk area with multiple openings where the nurses and techs punch data into the computers and listen for alarms from the machines, or requests from the patients. I should mention that most of the patients there are old. Some of them are fast asleep with sunglasses over their eyes and big warm blankets or sleeping bags draped around their bodies. Some complain about everything, some chat, some read books, some watch TV. I typically play online Texas Hold-Em poker on my laptop and sleep. Or I flirt with the techs. Or I crack jokes with Diana.

Diana: "Here is a list of the different channels. We don't get all of them, but we get most."

Jake: "Cool!"

Diana: "Yeah, it's pretty cool. Do you need anything else?"

Jake: "I think I'm good."

Diana: "OK. Holler at me if you have any trouble./"

Jake: "All right."

Diana goes to the station in the center of the room. Suddenly, Leslie rolls a little chair on wheels nest to me and sits down. She holds a clipboard and a pen. We go over a list of my current medications and vitamins. She makes sure she has an updated list of my doctors, my emergency contacts, and my phone numbers. Before she leaves, she briefs me on leg cramps...

Leslie: "You have to let us know if you start cramping. Usually, people will feel a twinge in their feet or in their toes. You might think it will go away, but it won't. It will turn into a cramp and we don't want that, so if you feel the twinge, holler at us and we can shut the machine off for awhile. OK?"

Jake: "No problem."

Leslie: "Are you sure you don't want your coat?"

Jake: "Nah, I'm alright."

Leslie: "OK..."

She also goes to the center station and I am left alone in the chair. I decide to flip through the channels. After awhile, I stumble on a program called HOT NUDE BABES 3 [UNCENSORED.] I click on the channel but only get a blue screen.

Jake: "Awe man!"

Diana: "What?"

Jake: "Why don't we get this channel with HOT NUDE BABES 3 [UNCENSORED?]"

Diana: "Ha ha ha! Can you imagine how these old guys would react if they look over and see you watching HOT NUDE BABES On TV? You'd give 'em heart attacks! They'd be all sleeping and then look over and- WHA?!? Ha ha ha."

Jake: "Ha ha! Awesome."

Some time passes and I feel like I should be doing something other than just sitting there. I look around at everybody and try to imagine what they've been through. Is everybody in here diabetic? Is there anybody else my age? I spot one guy who looks like he might be in his 30's, but he too far away to strike up a conversation.

Suddenly, without warning, my body temperature drops. It's a cold unlike anything I've ever felt because it's coming from the inside of my body, not the outside. I shiver, and when I see Leslie walk by, I ask her if she'll put my coat over me. She does.

After two hours, I am finished. No cramps on the first day, but they will come. Diana takes each needle from my arm and I hold a wadded up cotton pad over the puncture site. After several minutes, she asks me if the bleeding has stopped. I peek under the pad and see the tiny needle mark with no leakage.

Jake: "I think so."

Diana: "OK."

She puts a bunch of tape over the pads and advises me to keep it on my arm until I go to bed. But then she adds that some people take it off after a few hours. It all depends on the person.

Leslie walks me to the weigh station and reminds me to weigh myself before I leave. I don't remember how much I weighed that first day or how much weight I lost, but I do remember taking off my clothes that night and staring down at my feet. I hadn't noticed all day, but there below me on the ground were my feet, my ankles, and my legs in their natural un-swollen size. The dialysis machine had pulled all of the extra sodium from my body. Unbelievable!

When I walked out of the clinic that first day, I got into my car, clutched the steering wheel and held back a fierce cry. It was a cry of relief because my first experience with dialysis wasn't as bad as I thought it would be. Shoot, it was nothing I couldn't handle. The people here were cool and yeah, it kind of sucks to wake up early 3 days a week, go to dialysis and then go to work, but hey... it beats the alternative- death.

I felt drained, but energized at the same time. It's a weird feeling. Kind of like you want to sleep, but you are also restless and eager to go out and do something!

After my second treatment, I lost my cough. For the past two years I thought I was suffering from terrible allergies, and I was, but the deep cough that I experienced on a daily basis was actually a symptom of fluid in my lungs due to kidney failure. Now, because of dialysis I can breath freely. The color is back in my face, I have more energy, and I don't feel nauseous anymore.

I feel healthier than I have in years. Bring on the transplant!

Friday, July 9, 2010


I received a call two days ago from Stephanie at the IMC Transplant Center. She offered some really great news.

Stephanie: “I talked to the doctors and we have decided to go ahead activate you on the transplant list.”

This is incredible! I have been shedding pounds trying to reach the ideal goal weight for a kidney-pancreas transplant. I talked with Stephanie last Friday and told her I was only 4lbs from my goal.

I have been losing between 2-3 pounds a week for the past several months. One of the symptoms of end stage kidney failure is a loss of appetite so it’s easy to lose weight when you aren’t hungry.

This is it. I am now “active” on the list. The average wait time is about 2 years, but realistically it could happen anytime. I just need to wait for a “perfect match” donor before I get the phone call of a lifetime.

I remember several months ago when Dr. Cline told me I would need to start dialysis. It was a horrible feeling, and if I’m being honest, I was really scared. I had no idea what being on dialysis entailed. He also said it was probably time for me to schedule an appointment with the transplant center. I had these ideas in my head that after dialysis (or a transplant), I would be stuck in bed not able to do anything active for the rest of my life.

I’m glad I was wrong.

Before we left his office, Dr. Cline invited us to a kidney education center in the same building. There, we were introduced to a Nurse Practitioner named Maureen. She talked to us about the different types of dialysis (do-it-yourself at home, or go to a clinic 3 times a week) as well as the different types of surgery to prepare for dialysis (fistula, skin graft, catheter.)

I’ll never forget watching a video about people who were on dialysis. They talked about having the same fears I had, and they explained what it was like to be on dialysis. They also emphasized how they were free to do almost everything they had done in the past- exercise, travel, work, etc. Dialysis is nothing more than a slight inconvenience 3 times a week in exchange for sustaining your life.

We also opted for a fistula, which I mentioned on the previous blog entry. The appointment with a surgeon was scheduled and everything was in place for the future.

When I realized my life would still be my own, I wiped the tears from my eyes and felt ready to take on the next step in the process- Dialysis.

Thursday, July 8, 2010


My full name is Christopher Jake Cordova. I am 35 years old, born in Las Vegas Nevada, raised in Sandy, Utah, where I currently live with my girlfriend, Christiana Jarvis. We don’t have children but we have a dog named Moses who turns 10 next month. He is a Border Terrier/Mini Schnauzer mix with a wicked under-bite.

I was diagnosed with diabetes at age 3. My younger brother, Rob, was diagnosed with Asthma a couple of years later.

Rob and I were raised by our mother, Christine. She is a tough woman. I remember her working three different jobs to support us when we were young. She is the type of person who if anyone told her she couldn’t do something, she’d go and do it just to show that she could.

She bought a house all by herself, along with a few cars. She also managed to raise us with no help or support from our father. When Rob and I moved out of the house in our early twenties, Mom quit all of her jobs, took all of her cash to Wendover and lost everything at the blackjack tables. Like our grandmother, she has a problem with gambling.

Raising a kid is hard enough, but raising two kids with serious illnesses when you’re a single parent is something else. My mom taught me everything I know about facing obstacles. I grew up watching her set big goals only to reach them after a lot of hard work and effort. No matter how difficult the struggle, she didn’t let anything get in her way. Nothing slowed her down. If she wanted something, she got it. And that was that. There was no complaining, no whining, no giving up.

She was the same way about diabetes. She learned as much as she could about the disease and then she equipped me with the knowledge and willpower to fight it. I never felt sorry for myself, and I never worried about my health, because I knew all I had to do was make it a goal to be healthy and I would achieve it.

It’s as simple as that.

Last year, I was having lunch with Rob when the following conversation occurred:

Rob: “How did your surgery go?”

I recently had a procedure done on my left elbow called a “Fistula.” This is where they take a vein in my arm and connect it to a nearby artery. Doing this causes the vein to pump more blood into the vein so it grows to be the size of an artery. This is the vein they use for dialysis. (More about the lead up to this later.)

Jake: “It went really good. I was treated like a guest at the IMC hospital. About a hundred people came up to me when I was laying there on the stretcher, waiting to go in and asked me how I was doing and if I had any questions. It was great! I even woke up during the procedure and sat up.”

Rob: “Really? Did you feel anything.”

Jake: “No, I just sat up and looked around. The surgeon said ‘Hello!’ to me and then told somebody to give me more sedative. Then I was out.”

Rob: “And you feel OK?”

Jake: “I feel great! But, did I tell you about my second experience with an enlarged prostate?”

Rob: “Second? I didn’t hear about the first.”

Jake: “Oh, well a few months ago I really had to pee before going to bed but nothing came out. It hurt and I stood there by the toilet forever, but… nothing came out. So I went to sleep. When I woke up, it felt like my kidneys were going to burst. I thought, OH MY GOD! THIS IS IT... MY KIDNEYS HAVE FAILED COMPLETELY AND IT HURTS! So I called Dr. Cline, but he wasn’t in the office yet so I drove myself to the emergency room.”

Rob: “Where was Chris?”

Jake: “She had already gone to work. Anyway, I get to the emergency room and I tell them that my kidneys are killing me and I can’t pee. They do some tests and shoot me up with painkillers. I tell them my kidneys are failing so I don’t know if this is what it feels like, but ouch! After awhile, they figure out that my prostate is enlarged and it is preventing urine from flowing out. They said I had too much fluid in my bladder so it started backing up into my kidneys which is why I’m in pain.”

Rob: “Really?”

Jake: “Yeah, dude. I’m laying there on the bed and the doc comes into the room and tells me he has to ‘check my prostate.’ He looks terrified. I am drugged up on painkillers, so everything is happy and fun. I tell him, ‘OK’ and he asks me if I understand how it works. ‘You’re going to stick your finger up my butt?’ ‘Yeah,’ he says while putting on the rubber gloves. He looks really nervous. ‘Can you roll on your side?’”

Rob: “Ha ha ha!”

Jake: “I don’t think he’d ever done that before, so he was all careful and serious. But when I saw a full-time urologist the next week- POW! He didn’t care. He just bent me over on the table and shoved his finger right in there like it was nothing. I squirmed and felt like I was going to pee all over his office. I said, ‘Sorry but I feel like I’m really going to pee.’ He said, ‘That’s’ because I’m applying pressure on your prostate.’ No kidding!

Rob: “Ha ha ha.”

Jake: “So it turns out it wasn’t anything to do with kidney failure. It was just an enlarged prostate. The urologist ran some tests and said it was normal for my age group. I shouldn’t worry, it just happens. He gave me some meds and by the time I reached the follow-up appointment, everything was back to normal. He did say that because my prostate had already become enlarged once, there was a good chance of it happening again.”

Rob: “Noooo-”

Jake: “Yes! It happened again after the surgery.”

Rob: “Did you go back to the urologist for some more finger action?”

Jake: “Ha ha. No. What happened was this- after surgery they gave me some Lortab for the pain and they warned me to drink plenty of fluid because the pills will cause constipation. I was all, ‘yeah, I’ve had these before. Whatever…’ so I became constipated. According to the urologist, constipation can trigger a prostate flare up.”

Rob: “Oh no.”

Jake: “Right! So I’m at work one day and I start feeling the same pain in my kidneys so I leave early to go to the emergency room. When I get to the window, I tell the girl that I was in there a few months ago for the same thing. I can’t stand still while I’m talking to her because my kidneys hurt so bad. She asks me where the pain is. I tell her, ‘My kidneys.’ She says, ‘I’ll just put down here that you are experiencing pain in your lower back.’ ‘It’s not my back, it’s my kidneys.’ ‘What do you mean your kidneys?’ ‘Yes, my kidneys! The pain is from fluid backing up into my kidneys from my bladder. It hurts!’ ‘I’ll just put lower back. There isn’t a field for kidneys.’ ‘Fine!’

Rob: “Did the same guy stick his finger up your butt again?”

Jake: “No, it was a different doctor and nobody did anything. They gave me some antibiotics for the inflammation and told me not to be constipated.”

Rob: “Ha ha ha. You should write that down! That is funny stuff.”

Jake: “You think so?”

Rob: “Yeah.”

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