New Organs

This morning as a woman drew my blood, the following conversation occurred:

Phlebotomist: "Are you diabetic?"

Jake: "Yes."

Phlebotomist: "Well, you'll be happy to know I ran 5 miles this June for Diabetes Awareness."

Jake: "Oh really? That's cool." (Short pause) "Wait a minute... I'm not diabetic. I'm in here because I had a kidney-pancreas transplant."

Phlebotomist: "Really? Because of the new pancreas?"

Jake: "Yeah. I'm going to have to get used to not saying I'm diabetic anymore. It's weird after 32 years of telling people I am."

Phlebotomist: "Well, congratulations! It sounds like you're just starting a new life."

Jake: "Thank you. I feel like I am."

It's true. During surgery, they removed my gall bladder and my appendix, so I lost two organs. Then they added a new kidney to the left side of my lower stomach area, and a new pancreas to the right side of my lower stomach. Technically, I have 3 kidneys and 2 pancreas now.

That's just how I roll.

And hey, they are letting me eat solid foods. WOOHOO!!

Let's see if they really let me go home today or if they make me stay here through Sunday...

What to expect when I go home

Earlier this morning, a few hours after dawn, I sat by the window in my hospital room and gazed at the beauty of my view. Across the street is Murray Park, close to where Chris and I used to live. Beyond that are the vast Wasatch Mountains which look like something from Lord of the Rings. I had to take a photo. And here it is.

"This is like Christmas!" I exclaim after the nurse pulls the tube out of my nose. "Oh my God! I can breathe. I cannot express the relief. Oh! This is the best thing that's happened to me since I've been in here! ...besides the transplant, of course."

Now that the tube is out of my nose, they will start feeding me clear liquids. This includes water and a small cup of orange jello. I'm not one to eat a lot of jello, but because this is the first "food" I've ingested in over the past week and a half, each tiny spoonful tastes like heaven. It takes me awhile to eat because I am instructed to attempt two small bites every half hour. They want me to take it slow in case I am not able to keep it down. But I am. In fact, it goes straight through me.

"Once you start eating, recovery will go very fast." One of the transplant surgeons tells me. "I'm guessing you'll be out of here by Friday or Saturday. How does that sound?"

It sounds great!

The next day, they move me up to solid liquids, which includes hot potato chowder soup, pudding, Boost energy drink, apple juice, and milk. I eat everything except for the boost energy drink and the milk. The carbs for the meal are listed on a meal ticket on the tray. I add them up in my head and I realize I've eaten close to 65 cards for lunch without any insulin. Two hours later, they check my blood sugar and it's normal.

From the age of three, I've had to count the carbohydrates in everything I eat and determine the amount of insulin to give myself. Three hours after I ate, I would check my blood sugar to see if I gave myself the correct amount. If I did, my blood sugar levels would be normal. If I didn't give myself enough insulin, my sugars would be too high and I'd have to give myself a little more insulin to bring them down. If I gave myself too much insulin, my blood sugar would be low and I'd have to drink orange juice or some kind of quick acting sugar to bring my levels up. This is when being diabetic is scary because if my blood sugars drop too low, I could become confused, lose consciousness, experience a diabetic seizure, etc. Every time I ate, I went through this balancing game with insulin. But not anymore. Not anymore. Now I simply eat. And that's it.

A transplant pharmacist talked to Chris and I about all of the new medication I will be on for the rest of my life. Some of the meds suppress my immune system so I might be prone to illness moreso than I am now. However, I am on a whole mess of pills to stop me from getting certain viruses, bacterial and fungal infections. In other words, I am trading off insulin for pills. Worth it? BIG YES!

My transplant coordinator also talked to us about what to expect after I leave the hospital. Basically, I will be on home rest for the next 6 weeks. I will come back to the hospital 3 times a week for the first few weeks to do bloodwork. The transplant team will review my blood levels and make changes to my medication as needed. It was emphasized that I should not attempt to self-medicate myself by adding or subtracting ANYTHING to my pill intake without checking with the transplant team first. For the first two months, I am to stay away from children and not play in the dirt. No closed spaces like movie theaters or public buses. If friends come to see me, they must be healthy. If they are sick, I have to turn them away. Also, anyone who comes to the house should use hand sanitizer as soon as they walk through the door. These are all precautions to prevent me from becoming sick due to my suppressed immune system. Fair enough. Most of the people I know already understand this and have no problem with it.

Speaking of friends, I am feeling so much better that I had a sudden urge to see people, so I invited a few people to come see me in the hospital before I go home. Tonight, our good friends Brian and Sarah stopped by. We talked and joked it up just like we were at home. It was awesome to see them again.

Less Tubes

They took out my catheter yesterday! They are still measuring the amount of urine I create, but that's one less tube. And, early today, they took out the drainage tube from my stomach. They also let me take a shower this morning.

It's funny how all of the small things we take for granted take on a bigger meaning when they are removed from our daily routine. I love taking hot showers. I've always loved sitting in a warm bath and reading a book. Not being able to do that for the past week has been very strange so I swear I could have stood in the shower all day today. It felt so good!

When Christiana visited me during her lunch break from work, she took me on a walk down to the first floor. We were headed toward the newborn baby section, just for kicks when we noticed a glass door to the outside of the hospital. It wasn't a main door, just some sort of side door that wasn't very populated. So we went outside. The sun on my skin felt incredible. The smell of the outside, the traffic noise in the distance, the blue sky, standing in the shade of the building. All of these sensations erupted in my brain as though I was beginning to forget what they were like. It was awesome. I can't wait to go back home and be with Chris and hang out with our dog, Moses. I miss his sweet little face and the way he communicates with me. I really miss him.

Jake: "Do you think it's weird that I don't want to see people while I'm here? I never thought I would be like this."

Chris: "I think it makes sense because when you are around people you like to make sure they know you are there to see them. When you're not feeling good, you know you can't be the social entertainer you want to be, so I think it's OK."

Jake: "Yeah, that makes sense... I hope they understand."

Chris: "They do."

Aren't girlfriend's great?

We had a brief scare when the doors wouldn't open from the outside, but luckily a woman was passing by and opened the door for us.

They say I might be out of the hospital this Friday or Saturday. Tomorrow morning, they will take the tube out from my nose and try to start me on liquid foods. As long as I can stay hydrated and keep down nutrients, the healing process will go very fast.

Things are going well.

1st week recovering in the hospital

My first week in the hospital has been a roller coaster of ups and downs. People want to know how I am doing, and for the most part I am doing well, but there are days when I am in a lot of pain.

Aside from what I already wrote about waking up the first day after surgery, it should be noted that everything was not a cup of tea. For example, they did not have me hooked up to any medicine in the I.C.U. so when I first opened my eyes after surgery, I could feel every ounce of physical pain in my stomach. I felt like I was going to die! I remember yelling at the nurse in the I.C.U., asking her why I was not hooked up to any pain meds. I tried to apologize to her later, but she didn't respond very well. Instead of explaining the situation to me, she decided to attack me for not being married to Chris.

It's true, Chris and I are not married, but I tell everyone at the hospital, "Even though we aren't married, it's like we are." Christiana is much more than my girlfriend. We live together, we take care of each other, and we would do anything to make each other happy. I don't know where my life would be without her, and I suppose a lot of people think we should be married, but let me ask you a question: How many successfully married couples do you know? Chris and I know very few combined, so we do what works for us. We have been together for over 5 years and we work, Why fix what isn''t broken?

The I.C.U. nurse didn't see it that way. She felt we were an abomination to God, and she wasn't shy about letting us know about it. Welcome to Utah! Ha ha.

I was kept in the I.C.U. for 24 hours, which is standard after a pancreas transplant. They had to closely monitor my activity and make sure I was healing appropriately. I was, so I was released to the 10th floor of the patient tower the following day. Before I left, I was given a bed bath by three attractive young nurses. It was almost like a 5-star hotel. Wow!

I have a tube stuck down my nose and into my stomach which prevents me from eating or drinking. Fluid is constantly sucked out of the tube and into a waste bin somewhere behind the hospital wall. It is neat to watch, as well as disgusting. Every time I swallow, I can feel the burn from the tube hit the back of my throat. This tube is considered the most annoying part of post-op surgery by a lot of people and I can see why. Perhaps today I will get it removed. We'll see. I have not been hungry or thirsty because they are intravenously pumping me with nutrition, but eventually I will have to start eating broths and jello.

I have another tube coming straight out of my stomach. This one is connected to a plastic ball that soaks up excess fluid built up around my new organs. It's not so gross. In fact, the fluid looks very similar to Koolaid, but I haven't tasted it.

The scar, or at least as much as I can see, runs straight down my belly. It is a neat red line with staples here and there. I don't touch it very often, mainly because there is a medical girdle wrapped tightly around my gut to keep everything in place. They first used a small girdle on me, which had to be changed to a large. The small girdle hurt and I complained about it until they took it off. The orderly didn't understand why they tried to use such a small size on me. I am a grown man.

Next, I have a catheter sticking out of my penis. This allows for constant urination into a bladder bag that hangs at the end of my bed. It's great because I can pee whenever I want and I don't need to get up or flush the toilet or anything. However, yesterday the bladder bag got some air trapped in the tubing and I couldn't pee. That really hurt. On top of it, I stopped passing gas a few days after I started. They say passing gas is a good sign of recovery, and something that comes at different times for different people. Well, I started passing gas on day 2, which impressed everybody, but then I stopped on day 4, which worried a lot of people. It also hurt very bad because I could feel big gas bubbles in my stomach but they wouldn't come out. Also, I couldn't pee. Yesterday was very bad. I was in so much pain from not being able to pee or pass gas, that I sent several visitors home, including Christiana. I did not want to be around anybody because I felt horrible. A few different people have told me that those of us who heal really well tend to have a "hump day" at some point where everything just goes wrong. Yesterday was my hump day and I hope to never repeat it again. Maybe the pain medication was causing me to stop passing gas. I've slowed down on hitting the pain med button and it seems to be doing the trick. An orderly changed mt bladder bag last night so I can pee again. WOW!!  Things aren't so bad anymore. I may still be in some pain, but my blood sugar numbers and kidney numbers are amazing. I am making a successful recovery so the trick now is to take it one day at a time and keep up the slow, gradual recovery. Yes?

Oh, I almost forgot to mention the I.V. needle sticking into the right side of my neck. I don't feel this one at all, nor do I ever see it, but they use it to draw blood at night for testing and sometimes they flush it with saline solution. That leaves sort of a nasty taste in my mouth. Yuck! Eventually, when I can get all of these tubes removed, I can take a shower. Ahhhh, I am not one to go more than a day without fully cleaning myself, however it has been tricky while in the hospital. The orderlies and nurses have been fantastic about washing me off, or letting me wipe ice cubes on my head or over my feet. They wash my hair while I lay in bed with some foamy bottled soap that they also use over my body. It's not the best but I guess it does the trick.

I can't wait to go home. I can't wait for all of this to be over and to start feeling like a billion dollars. I already feel great not being diabetic anymore, but I want to feel it without the drain of surgery. One of my nurses keeps telling me, "It's better than dialysis, isn't it, Jake?" Yes it is! And this too shall pass.

SUCCESSFULL K/P TRANSPLANT 2010

When I awoke on the morning after surgery, I could tell as soon as I opened my eyes that I was no longer diabetic. For one thing, the heaviness that normally surrounds my lower eyelids was gone. Also, in the past if you were to ask me how high or low my blood sugar was, I could think about it for a few seconds and tell you. That was also gone.

For the first time in my life, as soon as my eyelids were open, I felt immediately awake. Also, I felt like I had to pee, which means I had kidney function again. AMAZING!

My brother Rob was in the room, with Christiana, Erin and my mom, along with several nurses.

Rob: "Jake, you aren't diabetic!"

Jake: "Dude, I don't feel diabetic!"

It was cause for celebration.

There was a catheter coming from underneath my hospital gown. One of the nurses told me I had already drained 7 pints of fluid since the operation ended, which is quite amazing!

After 32 years of being diabetic, it is astonishing to feel it completely gone so quickly. I know I have a lot of work ahead of me to make a full recovery, but I am headed in the right direction. I've walked around the hospital floor a few times, I've sat up in a chair for several hours (I know it doesn't seem like a big deal, but try doing it after a major surgery.) I've talked to friends and family members in person and over the phone, and I've received an unprecedented amount of love and well-wishes from friends all over the world on Facebook. I've even been told that I look much better than the doctors said I would. I'm not too puffy. I can't wait to take a shower, but overall I feel great!

Organ donation is such an amazing gift. Saying thank you is not enough and I don't know if I will ever find the right words to express my gratitude to the donor and his family, but I hope they know how much their actions have changed so many lives for the better. THANK YOU!

And thank you to everyone who has kept me in your thoughts. Your kindness and support is astounding. You guys rock the world!