Cloudy Interactions

I’ve gained ten pounds since coming home from the hospital. My nutritionist might be happy, but I’m not. Chris tells me not to worry about it until January when I can stop ‘snacking’ in between meals (as instructed) and get back on my exercise and calorie-limitation diet. Now I need to lose 30-35 pounds to reach my personal goal! I can’t wait to get back on track in 2011.

* * * *

Last Wednesday I went to the IMC a day before my nephrostogram (“tube removal”) was scheduled because I was leaking from the insertion site in my stomach again. The leakage wasn’t as bad as before, but it was still unpleasant.

I was told the angiogram team was too busy to squeeze me in, however I was given a bunch of tape, gauze, and pads to keep me as dry as possibly until my appointment the next day.

Fair enough.

I went home and changed into sweat pants and an old T-Shirt. If I was going to leak all night, at least I could do it in comfort.

Upon examining the stay-fix bandage covering the insertion site, I noticed it was soaked and needed to be changed. After removing the damp bandage, I noticed the nephrostomy tube was sticking out a lot longer than it should have been. I tried to push it back inside of me, and to my surprise it went in easily and without pain or discomfort. Amazingly, this solved the leakage problem! Nice!

The next day, I went to the hospital and had the tube removed. During the process, the doc noticed some “cloudiness” in the fluid. She said this could be a sign of infection. So I lay there on the small procedural bed while she called Dr. Stinson from the transplant team in the adjacent building.

By now, this sort of thing is so normal, I don’t even flinch. My immune system is suppressed and always will be, so any little thing needs extra caution and concern before just treating it in a normal way. No big deal.

They decided to give me a week long dose of antibiotics. I showed no symptoms of anything serious- I wasn’t sweating, experiencing fever or chills, nor was I in any pain, so they let me go home. Once again I left the IMC hospital with nothing attached to me. BIG YES!!

On a side note, my body is absorbing the anti-rejection meds very quickly, so the dose has dropped to less than half the amount it was on the day of my initial release. After the 1st of December, I will stop taking 3 other pills completely, and my anti-rejection meds will drop again so it is very possible that I will take less than 10 pills a day! We’ll see...


* * * *

I was given the link to my donor’s obituary from a friend online. I also searched for his name on Facebook and found a memorial page as well as his personal profile. On the memorial page, someone posted a video set to music using photographs from his life. It was difficult to watch, but very touching. I feel a mix of immense sadness and gratefulness all at the same time. It’s hard to separate the emotions because they are so interlocked in my head and in my heart. I am saddened that this person was taken at such a young age, yet I am grateful that he made a choice to help so many people. I will always remember him.

* * * *

I met a woman online who had a k/p transplant in February of this year! I am excited to hear from her because our surgeries happened so close together. She lives in Texas with her family and has started a blog of her own. She is a very positive person and has nothing but good things to say about her transplant team.

She’s posted pics on Facebook, including an album called “Before and After Transplant.” I looked through them and noticed how much more vibrant and healthy the “after” pics were compared to the “before” pics.

Now I understand what people mean when they say I look so much better...

* * * *

For those who might not know, I used to do a podcast with my ex-wife Erin, called “Just not Right.” It ran for three years over the internet and can still be downloaded via iTunes or straight from the website: http://notrightpodcast.blogspot.com/2007_11_01_archive.html

It was a lot of fun! Because of its success, the local paper ran a story on us, and we were even invited to appear on a local radio station here in Salt Lake City a few times.

Last week, my good friend Bart told me he was appearing on a local internet radio show. I tuned in to discover that the DJ was an old friend of ours who we hadn’t seen in almost 20 years! Her name is Terra and she is the host of a show called VOX HUMANUS that airs every Thursday night on http://utahfm.org/ from 6-9pm MST.

Last week, Bart and I were guests on Terra's show and we had a blast! It was suggested that we appear on VOX HUMANUS more often, so if you are interested, check it out sometime. It’s free, unregulated streaming community internet radio! And if all goes well, Bart and I might end up hosting our own show. We’ll see what happens.


Stay tuned…

Contact from the Donor Family

Saturday, completely out of the blue, I received a letter from the donor family.

Chris and I had just come home from seeing “Nowhere Boy” (the story of John Lennon as a teenager), at the Broadway Cinemas in downtown Salt Lake City. It was an awesome film, but very emotional. We both cried while watching it, and were ready to unwind and eat some dinner at home.

When we pulled into the garage, Chris took some grocery bags into the house. I walked to the mailbox and grabbed the pile of letters and advertisements inside. As I flipped through the mail, I noticed a large white envelope from IMC hospital. I thought I knew what it was...

You see, the last time I saw Dr. Cline, I forgot to bring my health insurance card with me. He said they would bill my health insurance anyway, but if it didn’t go through they told me to let them know so they could fix it.

I thought that’s what the envelope contained.

I walked to the recycle bin on the side of our house and dumped the junk mail inside. Then, I walked back towards the garage and tore open the white packet.

The first thing I saw was a pastel greeting card envelope. “What..?” I thought to myself and stopped walking. The flap was not sealed. I slid out a greeting card inside which turned out to be a really nice “Get Well” card signed from “A woman, A man, & Family.” (The names were written, but I will leave them out of the blog to respect the family.) Tucked inside of the card was a plain white piece of paper folded up.

I opened the piece of paper and read a hand-written letter from a woman I have never met. As soon as I read the first sentence, I knew who it was from and was immediately overwhelmed.

She wrote about her son, his interests, his job, how he passed away, and how happy his entire family was that he was able to help me. She also wrote his name. All of this made me visualize my donor as a real person with a great life and an amazing, loving family. I was stunned to learn how young my donor was. He was barely an adult.

Chris walked outside and saw me standing in the driveway reading the letter. She walked over to me and asked what I was reading. Then she saw my eyes and asked what was wrong. I handed her the letter and burst into tears. We hugged and both cried really hard.

I want to share an excerpt from the letter because I feel it emphasizes the importance of communicating your desire to be an organ donor with your family:

“The day before he died, we had a conversation about organ donation. That’s how we came to do this. He had told me.”

I spent a very long time the next day writing a response to the donor family. I re-wrote many paragraphs, changed things around, took things out, added things in, until it finally was complete. I am taking it to the IMC transplant center today after work so they can forward it to the family on my behalf.

Last names are not included, nor are personal addresses or contact details of any kind. I included the URL of this blog in case the family wants to read about my experience, or befriend me on Facebook. For me, it would be awesome to be in direct contact with my donor's family, but I will leave that decision to them.

I am just grateful that the mother took the time to write to me, and to send me an amazing card. It means a lot and I will never forget her son and her family.

They have changed my life, and now that I know a little about the donor and his family, they have change my entire perspective on the transplant.

Positive Changes

Next week is my 2 month anniversary from the transplant. Can you believe I am still discovering new benefits from no longer being diabetic?

Check it out:

I have switched from doing blood work at the IMC hospital in Murray, to having my blood drawn at Alta View hospital in Sandy, which is only a few minutes from my house. I am also seeing Dr. Cline again instead of the transplant team at IMC. They assured me they are always available if I have any questions for them and they will continue to monitor my blood work, but it’s good to see Dr. Cline in his office again. He’s been awesome through the entire process of my End Stage Renal (kidney) Disease. (ESRD.)

Along with the usual numbers they look at when they draw blood from a transplant recipient, Dr. Cline ordered a Vitamin D and a cholesterol draw. For the past 15+ years, I’ve been on pills for high cholesterol, mainly due to diabetes. But when I called the Alta View Hospital lab to see what my numbers were, I discovered that my cholesterol is the lowest it has been in years! It's practically normal! Dr. Cline explains this is partly due to my new pancreas; however the kidneys also have some control over a person’s cholesterol. Not only that, but my Vitamin D is higher than it was during my time on dialysis, also due to my new kidney.

Whoa! Is there anything the kidneys don’t do? :)

On top of that, I recently noticed that I am no longer aware that I am wearing contact lenses. When I was diabetic, throughout the day I would sort of feel the contacts against my eyes. It didn’t hurt or anything, but I would sometimes find myself adjusting them or putting in extra eye drops. After work, I’d take them out of my eyes to feel relief. But now… I don’t even notice them. And yesterday, for the first time since I started wearing lenses, I kept them in until I went to bed. D'oh! I completely forgot I was wearing them so I had to jump out of bed and take them out. No way!

Life as a normal person just keeps getting better and better.

I still have the nephrostomy tube in me, but I’m hoping to get that removed next week, or possibly the week after that.

It’s been great to meet so many people online who have followed my story and can relate to it in one way or another. Many diabetics who are reaching the first stage of ESRD have talked to me about their own worries and experiences with kidney failure and diabetes. I welcome these comments and questions with open arms. It’s easy to feel alone and discouraged when faced with kidney failure, but you should know that you are not alone. It is a growing epidemic in the U.S., mainly due to diabetes, high blood pressure, heavy ibuprofen use, and the consumption of foods high in sodium. You are NOT alone!

I have also been in contact with people who have gone through different medical surgeries and have experienced different diseases. I am humbled and amazed at how much positivity and energy some of these people have. I look at my procedure as a positive experience because I’ve benefited significantly from it, but I hear stories of people undergoing major surgery just so they don’t die. And afterwards, they are left in pain, without pieces of their organs, and somewhat defeated... However, like all human beings with a will to survive, they continue the fight to stay as healthy as they can to be here for the ones they love.

Life is not for the weak. There is plenty of bad as well as plenty of good that can happen to us every day. We have to recognize the good when it shows itself, and we need to remember the bad is not as powerful as it might seem.


And bad things, no matter how terrible they might be, shall pass.

Nephrostomy Tube

The week following the nephrostomy tube insertion was fraught with discouragement and frustration. I tried to remain optimistic by telling myself, “At least it’s not a rejection! And hey, I am not diabetic anymore, so this is totally worth it!” But I was leaking urine from my tube day and night. It got all over my clothes, it smelled, and I carried around a ‘pee-bag’ attached to my leg that I had to unscrew and drain in the toilet every couple of hours. Also, the pain I felt during the procedure never went away. It was a horrible burning sensation in my stomach just underneath the insertion site.

I don’t mean to complain or sound negative. Looking back, I suppose would rather have some complications during recovery rather than during surgery. So while it really wasn’t that bad, it still took its toll on me mentally.

The breaking point was when I started leaking urine from the insertion site. I leaked A LOT of fluid. Imagine peeing from a weird hole in your stomach. You can’t stop it, it’s gushing down your clothes, and you just want to lay down and cry. I couldn’t do that, so I went to the Emergency Room, then back to the angiogram team. After 3 days of trial and error, and two different tube replacements, they finally stopped the leaking. The painful burning sensation, we all found out, was from the original tube not being inserted deep enough into my stomach. Apparently, I was feeling pee rush from a hole in the tube into my open flesh. (The hole is supposed to be there, but it’s supposed to absorb fluid from my kidney.) It burned. It burned really bad. But now it’s all gone.

On the brighter side, I returned to work on Monday to find my desk adorned with kidney and pancreas pictures. One co-worker went so far as to clip a ‘pee-bag’ to my wall. (She used pickle juice and a sandwich baggie.) It looked very authentic. Another co-worker brought in kidney-shaped rice crispy treats. Ha ha! Do I have a cool team, or what?

Everyone was overjoyed to see me and treated me like a celebrity. It is good to be around the beautiful smiling faces I’ve missed over the past 5 weeks. When people ask how I feel, I tell them mentally I feel better than I have in my entire life, but physically I am still catching up. My surgery scar is nearly 100% healed, the nephrostomy tube will remain in my stomach for another 4 ½ weeks, but it is no longer painful, and it no longer leaks, and I am no longer connected to a 'pee-bag' so I am urinating normally.

By the way, I recently discovered where the ureter is located. For some reason, I thought it was some sort of muscle near my prostate, but no. It is the tube that connects the kidney to the bladder. A-ha! So now I understand how the tube is helping to keep the ureter open.

Some minor annoyances have been when friends try to give me health advice. I know it comes from a good place, so I try to take it in stride, but what they don’t understand is that I have an entire team of medical professionals telling me exactly what I can and can’t do, what I can and can’t eat or drink, and what precise steps I need to take to ensure my health. It’s not just one doctor. It’s not just one person at the transplant clinic. It’s a team of surgeons, nephrologists, doctors, and pharmacists who deal EXCLUSIVELY WITH TRANSPLANT PATIENTS. Most people understand this, but there are always a few who think they know better.

Those rascally scamps!

Anyway, the entries into this blog will probably come less frequently, but they will continue until I am completely healed and functioning normally. I may even post a few entries after that, just to reflect on my life as a new person. I still need to write a letter to the donor family. It will be hard to write, but I know I need to do it. I’m just not sure how to express my gratitude…

Thank you for following this adventure. It has been an awesome roller coaster ride and I’m glad everything is turning out for the best. Your kind thoughts and well wishes have not gone unnoticed and I’m glad you’ve been here with me. Your encouragement has really helped.

Rock N Roll!!

Kidney Rejection Speed Bumps

The afternoon following my stent removal, I went to my last scheduled clinic visit at the IMC Transplant Center. Everyone was impressed with my rate of recovery. They said my numbers were great, everything was looking good, and this is probably the last time I'll see anyone from the transplant center.

They wished me good health and bid me adieu.

That night, I celebrated by enjoying a few alcoholic beverages. It felt good to get buzzed and enjoy a night of happy intoxication- something I've haven't done in the past month. But the next morning when my alarm went off at 7:00am, I felt all sorts of crummy. I didn't want to get out of bed, and I got a crazy idea in my head that I felt sick.

Wait a minute, I don't get sick, I told myself. But I didn't drink enough last night to trigger a hangover... did I? I didn't, but I decided it probably was a hangover because I had not consumed mixed beverages in quite awhile. So I went to the IMC hospital and did some blood work, then I went back home and crawled back into bed.

Three hours later, as I lay in a heavy sleep completely oblivious to the world, my cell phone went crazy. Stephanie from the Transplant center was calling, and Chris was calling from work. Finally, I woke up and looked at my phone. I called Chris first. She said Stephanie called her trying to get a hold of me. My numbers from the morning's blood draw were way off and they wanted me to go back to the IMC immediately. I told Chris I would call Stephanie to get more details, and I would let Chris know what is up.

When I called Steph, she said it looked like one of two things. 1.) Either my body was not absorbing enough of the anti-rejection meds, or 2.) my body was rejecting the new kidney. She asked me to go to the IMC as soon as possible so they could run an ultrasound, and possibly do a kidney biopsy. (Fun stuff!) I explained that I had some alcohol the night before, however Stephanie said that probably would not affect my blood work, but she would ask Dr. Stinson to be sure.

I drove to the IMC. As soon as I got there, Steph said I looked like I was still asleep. I told her when I first woke up this morning I thought I had a hangover, but now I realize I just feel like crap, so something is definitely not right. Upon hearing me say the word 'hangover,' Stephanie remembered asking Dr. Stinson about alcohol consumption. She told me the following:

STEPHANIE: "I told Dr. Stinson that you mentioned drinking last night. He said you could go on a wild crazy drinking binge and it would have no effect on your new organs or on your blood work numbers whatsoever."

Upon hearing this, a light bulb went on in my head and I almost heard an audible 'click' somewhere in the top of my brain. It was like I had been given the key to my very own brew pub. I vowed then and there, that as soon as I am fully recovered, I am going out with a group of friends on a wild crazy drinking rampage!! (Several people are already with me. Care to join us?)

Then I saw Dr. Stinson. He asked the general questions and when it came to the question about Am I urinating, I explained that since having the stent removed, I have not been able to urinate as much as I should. It comes out a lot slower, but not only that, the volume has decreased significantly.

This information caused the doc to pause. "That might be what's causing the spike in your numbers," he said. "You may have some blockage."

So I was sent down to radiology to do an ultrasound of the new kidney. BINGO! They immediately found  some wicked blood clots in my bladder which were obstructing the normal flow of urine. This was probably a result from the stent being removed.

They had already prepped me for a biopsy (which is when they stick a needle down to my kidney and clip a tiny piece of it off to examine under a microscope for signs of rejection), but now the plan changed. They said my new kidney was swollen with fluid and needed to be drained ASAP! So they sent me to the angiogram department where I underwent an hour long procedure of having a tube inserted through my kidney, down into my bladder, and out my ureter. This created a new stent in the ureter, and also allowed fluid to pour out of me, through the tube, directly from my kidney.

I was awake for the entire process, and though I didn't feel anything inside of my kidney (the doc explained while there are nerves inside of the new organs, they are not attached to my body, so I will never feel pain from them), I felt plenty of pain in my tender and sore stomach muscles- muscles I have not used in weeks, muscles that are still recovering from major surgery. OUCH!! It really f*&^#$n' hurt.

Afterward, they had me recover for a couple of hours in a nearby room where my kidney was drained of blood-red urine into a medium-sized bladder bag. They said my pee would look red for a few days because of the blood from the angiogram and they weren't kidding. It looks like kool-aid.

Every few hours, the bag fills up and has to be drained by one of the aides. They measure the outpour each time and document the volume into the computer. I was already admitted to the hospital and the doc called up to say it was merely for observation and safety that I stay overnight, to make sure I wasn't having anymore signs of rejection. Just to be safe. I guess that's the thing with transplant patients, they like to be extra careful when doing any type of medical procedure.

Early on, I noticed the tube was leaking. I was sitting in bed and I pulled the covers out from my leg to reveal a massive amount of wetness all over the left side of my thigh. It was like I peed myself without even trying!

The nurse tried tightening the connection, but it was already secure. There appeared to be leakage from beneath a little rubber thing in place over the tube. So she called down to the angiogram team and they said the only cause would be a defective tube, which they had never heard of before. So they made plans for me to go back to the angiogram department the next day and have the tube replaced.

MORE PAIN!! I really did not want to do it, but if I had to, I had to... ::sigh::

This morning, I woke up and checked for leakage. There wasn't any. In fact, it seemed that the tube had miraculously fixed itself. When Dr. Stinson came in, he examined me and said if I wasn't leaking there really was no reason to replace the tube. (YES!!) He also said they were sending me home, though I would probably keep the tube-stent in for another six weeks. They will check up on it every so often and see how it's going. I was advised to pay close attention at the insertion site for any signs of infection or swollen tissue.

I left the hospital and drove to work so I could post for a job. It was roughly a 15-minute car ride and when I got out of my car I noticed a wet sensation near my left pocket. I glanced down and it seriously looked like I peed myself all over my shorts. Oh no... I'll have to call Stephanie after I post for the job and see if I need to go back to the hospital. Dammit!

Being back at work was really cool. Everybody came up to me and was surprised and shocked to see me so soon. They all said I looked great, and they even pretended not to notice the pee smell coming from my shorts. (I explained to them about the leakage and how I would probably have to go back to the hospital.) It was nice to be around my co-workers again. Most of them are really nice people and they honestly feel like my second family. I've missed them, and it was good to see their beautiful smiling faces.

After posting for the job, I walked back to my car and called Stephanie. I explained that I'm not sure if the tube was kinked while I was driving so she advised me to keep an eye on it for the next two hours and see if it still leaks. I drove home and took a shower. I also noticed that the tube was not leaking as much- still a little bit but nothing major.

I called Steph back with a theory. "It leaked really bad last night when I was sitting up in bed, and it leaked really bad today when I was sitting up in my car, but it didn't leak when I was laying down last night. So I think it leaks when the bag it at such an angle that gravity forces the fluid back down the tube instead of into the bag."

She said that is how the tubes are designed, so I need to keep it flowing downward at all times. I said I'd try it. She told me to call her back if the major leaking continues, or if I noticed swelling around the site, or major pain, or sickness, or anything else out of the ordinary.

Will do, Steph. So now I am back home, I have one more clinic appointment scheduled for Wednesday, and I plan to go back to work the following Monday, unless any other obstacles pop up during my recovery.

I was talking with a friend about this the other day, and it's really true. Each day has a set of speed bumps that we have to overcome. Not anything too big, but just little crap that we all have to deal with all the time. It never stops. The trick is to deal with each speed bump as it comes along and not let it get you down. How you handle speed bumps is what defines you as a person. Do you let speed bumps ruin your day, or do you slowly work over them to continue onward in your journey? It's a tough question, but think about it the next time a speed bump shows it's ugly face in the middle of your day.

What are you going to do?

Stent Removal

It's funny how sometimes your biggest worries turn out to be nothing. Take for example, the stent removal process.

It has been on my mind since I found out about it in the hospital. I tried to push it out of my thoughts as much as possible, but it kept coming back, banging at my brain like a bad dream. I was not looking forward to anybody, doctor or otherwise, sticking anything (no matter how small) into my penis.

So this morning as the nurse lead me into a special room and told me to undress from the waist down and lay under a thin sheet of hospital paper, I was worried. It's funny because I wasn't worried or nervous about major transplant surgery, recovery, hospital stay, clinic visits, etc. All of that was a walk in the park. But something about this whole "stent removal" had me on edge.

I laid there half naked on the table for several minutes before Dr. Putnum came in. He was friendly and to the point.

DR. PUTNUM: "OK, I know it's weird having something inserted into your penis, but this is a relatively painless and it's a quick procedure."

JAKE: "As long as I don't feel anything, I'll be OK."

DR. PUTNUM: "Well, you'll feel it, but it shouldn't be painful. I'm going to talk you through it. Think of it as a mind over matter state of consciousness. It's all about relaxing."

JAKE: "OK."

DR. PUTNUM: (Throwing back the hospital paper to look at my lower naked body.) "Here comes some soap... So, you had a transplant?"

JAKE: "Yeah, four weeks ago. It's been great."

DR. PUTNUM: (Pulling over a weird looking machine dangling from the ceiling.) "That's lidocaine jelly, by the way. It will numb you a little bit but it's mostly for the insertion. So, were you ever on dialysis?"

JAKE: "Yes, as a matter of fact you saw me right before I started for an enlarged prostate."

DR. PUTNUM: "I did? I'm sorry, I didn't look at your chart. Did they want your prostate checked before you started dialysis?"

JAKE: "Oh, no. It was just enlarged. You checked me out and said it was nothing to worry about, gave me some pills and I got all better."

DR. PUTNUM: "Oh good. Any problems since then?"

JAKE: "Nope."

DR. PUTNUM: "Great. Well, here comes the insertion. That should feel nice and easy, it's going in smoothly not touching the sides of your skin or anything, right?"

JAKE: "Yeah, not bad."

DR. PUTNUM: "OK, that was the easy part. I'll stop there for a second. Now I'm at your sphincter muscles and your prostate. You're going to feel this. The trick here is to relax and loosen that muscle and keep it loose until I'm through. Ready?"

JAKE: (Taking a deep breath in and slowly breathing out.) "OK, ready."

DR. PUTNUM: "OK, relax the muscle, relax, relax... relax... relax... and... good."

JAKE: "You say relax, but man! It's not easy."

DR. PUTNUM: "OK, if you look at the screen here, there's the stent. Your bladder is empty which is good, but the stent is at a weird angle, so I'm going to try and get at it this way... Nope, didn't do it. Let's try this... No, OK... well, I'm going to have to fill you with a little bit of fluid to get the stent at a different angle."

JAKE: (Feeling liquid inside of me, and simultaneously spilling over my thighs. Am I peeing it right back out through the machine?) "OK." (I have the option to watch all of this on a little TV screen, but I decide not to. Instead, I just sort of look at the ceiling and listen to what Dr. Putnum is saying. Suddenly, I am aware of something small and metal near my bladder. It doesn't hurt, but I can feel him hook onto it.)

DR. PUTNUM: "Got it! OK, and we're coming out now. Coming out, coming out... coming out, and... we're done."

JAKE: "That's it?"

DR. PUTNUM: "That's it. Come back and see me only if you need to. Otherwise, here's a towel to wipe yourself off. Take your time getting dressed and have a good day."

JAKE: "I can't believe that was it. WOW! That was nothing! Thank you."

He left the room, I got dressed and went home. And that's how it went. So now I am free of foreign objects inside of me. At least I'm free of any foreign objects that need to be removed. I have to imagine that there are things in place for the transplant that will stay there for the life of the organs, but I'm not really sure. Perhaps I'll ask this afternoon when I go to my last clinic visit.

Anyway, if you are need of a stent removal at any point in your life, try not to worry so much about it. It is very quick, and very painless. It's slightly uncomfortable for a few seconds, but the whole thing is done in about 2 minutes.

Like I said before, isn't it funny how sometimes your biggest worries turn out to be nothing?

Standing on the Brink of Possibilities

"You look great!"

"All the color is back in your face!"

"Oh My God, you look like you did 10 years ago. I can't believe how good you look."

"If you didn't tell me you had surgery this month, I never would have guessed. You look fantastic!"

"I can't believe how slim you look..."

"Your face has color again, I can feel the energy radiating off of you. Man, it's good to see you again!"

"Wait... you mean you're HAVING surgery? WHAT?! You already HAD IT?!? WEEKS AGO?? Oh my God, I never would have guessed."

"You're not diabetic anymore? What do you mean? What did you do?"

"Oh no... you're going to be EVEN MORE ENERGETIC than before? Oh no... we're in trouble..."

"You look like a new person. I can't believe it."

These are some of the quotes I've heard over the past few days from various people. It's nice, but apparently I must have looked really pale and sick while I was on dialysis. Not anymore. I am awake, walking around, dancing, and enjoying the hell out of my new life. I still can't believe I am no longer diabetic. It's awesome. It's amazing! It really is the beginning of a better me.

And I don't have to go to dialysis anymore! So many good things have come from this transplant. I remember there was a couple of days in the hospital when I felt so horrible that I told myself I will NEVER go through this again. I don't care if my new organs only last 20 years, there is no way I am going through this pain and agony ever again in my life! I felt terrible, but you know what? It passed. The bad feelings went away very quickly and now I am standing on the brink of possibilities for the future.

Even though I had a momentary lapse of reason in the hospital, I know without a doubt that I would go through ANYTHING to not be diabetic because it is freakin' worth it! Yes, there are risks with major surgery, and yes I will be on pills for the rest of my life, but it's not insulin. I don't have to check my blood sugar anymore, I don't have to feel drained and tired from whacked out blood sugar levels, and I have 12 extra hours a week to do as I please. No more dialysis! No more weird work schedule. When I go back to my desk job, I will feel refreshed and alive. I will work a normal Monday through Friday schedule at a normal time.

I'm not 100% recovered yet, but I am getting a little bit closer to being there with each passing day. Today I drove to a few different stores, walked around them all, made a few minor purchases, cleaned my car windshield, drove home and washed out our outside trash can and recycle bin. I didn't feel weak or winded. I felt natural and relaxed. Tonight, I watched some TV with Chris, and this afternoon I played some video games.

Yesterday I went to a movie with my older half-brother, James. And tomorrow morning, I'm getting my stent removed. And hell yes I am even almost a little bit excited for that to happen!

:: High Five! ::

First Day of Freedom

Yesterday was my first day of freedom. For the first time in 3 weeks, I was able to drive myself around and go into public places. I was excited! I was eager! And I needed to pick up a few things for the house, so there was an agenda. WOO-HOO! Let's do it!

First, I drove to a home repair store. I intended to pick up several different items, but once inside I was so excited to mingle amongst the shoppers and walk through the aisles that I forgot all about half of the items on my list. Oh well, no big deal.

Next, I traveled to a big box department store across the street. Only needed a couple of things there, but it was nice to casually walk around and check out the different wares.

I forgot, however, that I was not used to walking for an extended period of time. Nor was I accustomed to so much exercise. Very quickly, I discovered how much walking is involved when you go to the big box stores. Not only is it a trek from the parking lot, but you can easily walk a couple of miles from one end of the store to the other. No kidding.

I was wiped out. Before I got back to my car, I felt like I was going to collapse. Going to two stores had exhausted me and I was ready to go back home, take a pain pill, and perhaps even take a nap.

It is nice to be able to travel, but I have to remember to take it easy and not push myself too hard. I want to be in good shape when I go back to work in a couple of weeks.

Today, my plan is to take the remainder of my insulin pump supplies and some leftover bottles of insulin to the woman who educated me on how to use my insulin pump. Her name is Karla and she is an amazing person. There were a few times when I ran short on insulin and stopped by her office to grab a sample bottle, so now it's my turn to give back.

I never thought in my lifetime I would give away bottles of insulin because I don't need them anymore. Part of me wants to take a hammer to them in celebration, but insulin isn't cheap and I know somebody else can use the bottles. I'm also giving them some unopened blood test strips.

Products I will never use again. =)

LOTS OF GOOD NEWS

Today I had my first clinic visit at the IMC transplant center. It was kind of like being in the hospital again, but instead of laying in bed in a gown, I was in a Dr.'s office room in my own clothes where people came to see me.

First up, was a transplant pharmacist who made sure I was up-to-date on which meds I should be taking. She asked how I was feeling and went over a few changes with my anti-rejection pills. Some of you have asked how many pills I take everyday. Well, including vitamins, the number is close to 40, but starting tomorrow it will be less than 30. (I was on extra antibiotics and such for the first week home.) It seems like a lot of pills, I know! But when they're all piled together, they aren't so difficult to swallow.

Oh, I almost forgot. My white blood cell count is down to 8.0, which means whatever infection I had has completely vanished. Good news!

And that's not all, the nephrologist on site looked over my numbers and gave me even more good news! He said starting next week I only have to go in twice a week for blood work! And he told me I can drive again! WOO-HOO!! Up until now, Chris has been driving me anywhere I need to go. I've been like a dog. I can go in the car with her, but I have to wait inside the car in the parking lot while she goes into any public places. Hey, I am just happy to get out of the house, but now I can drive myself around (as long as I'm not on any pain pills) AND the good doctor said I am OK to go into public places now. He said if I see a movie and the person next to me is coughing, just move to another section of the theater. I still want to avoid being around anyone who's sick. Perhaps I will catch a matinee of "Machete" this week... YES!!

But that's not all! Dr. Fujita, the surgeon who performed my transplant, took all of the staples out of my stomach. Ahhhhh!! My clothes were rubbing against some of the staples, causing them to press into my skin. That is the only reason I've been taking pain meds, but now that they are finally out I'm pretty sure I won't take so many pain pills anymore. BIG YES!!

So, just to recap: in a matter of minutes I was told I only have to go in twice a week for blood work, I can drive again, I can finally go into public places and not be stuck at home, my staples were removed, and not only that, I am cleared to go back to work as soon as I feel up to it. NICE!!

But, there is one wicked nasty little hitch... A few days before I was released from the hospital, it was explained to me that there was a tiny stent placed near my bladder to keep the flow of urine open. They didn't want anything obstructing my urine. Not too bad, right? Well, I have an appointment next Wednesday to have it removed. How will it be removed, you ask? By my urologist (mentioned in the very first post of this blog). Yeah, apparently he has a very small tool that will be inserted into my penis with a little camera at the end. He will locate the stent, hook onto it and pull it out... from the tip of my penis.

I can tell by the look on your face that you are as excited for this little outpatient procedure as I am. :: Gulp! ::

"Will they put me under?" I ask.

"No, from what I understand they will shoot some numbing gel into your penis so you won't feel anything. You will be awake while Dr, Putnum inserts his little tool into you with a camera on the end and pulls out the stent. It is a very quick procedure and you won't feel anything. He's been doing this for years."

"I know Dr. Putnum," I explain, "I saw him last year for an enlarged prostate. I guess he already poked me from behind, now he wants to go in the front. And he isn't even buying me dinner!"

Everyone laughs. Inside, I cry.

That being said, I'm sure it won't be as horrible as it sounds. And if I really want to look on the bright side, how many guys can say they've had this charming experience done? (How many guys would want to? :: shiver :: )

Overall, words cannot explain how good I feel. I am happy, healthy and horny. I am a new man who is no longer diabetic. I finally got my hair cut today and I went to the grocery store with Chris and bought some good food for dinner. I made a new fall mix-mp3-CD for my car, and I am excited to be able to go out into the world again, although at a slow pace.

If all goes well, I should be back to work on October 11th, but I won't make any promises until I really start to feel 100% recovered again. I am close, but I am still a wee bit tender.

But don't worry, I'll let you know how the stent removal goes.

HOME

I am home.

Leaving the hospital was exciting! My white blood cell count wasn't where it needed to be, but it appeared to be slowly coming down so the docs made a decision to let me go early because I had no symptoms of infection and I wasn't really gaining anything by staying in the hospital.

The drive home was fantastic! Being outside in the warm cool breeze was stimulating beyond words. It was as though I were experiencing the world for the very first time.

Chris stopped at Target to snag a few things while I waited in the car. I can't drive a car or go to the store or any public enclosed space (like a movie theater) for a couple of months, but that's OK. Coming home was amazing. My dog, Moses, flipped out and I played with him for almost an hour.

I've been home for a couple of days now, and it's awesome! I've done a few things around the house that needed to be done, like changing some light bulbs, sorting through the newspapers Chris had saved for me, going through the mail, and more importantly, I cleaned out the section of our pantry where I stored all of my insulin pump supplies, all of my blood glucose test strips, and everything else related to diabetes. More than likely, I will give everything to my endocrinologist so she can distribute them to her patients. Why not? I won't be needing them anymore.

It feels incredible to not be diabetic. I really thought there would be a period of getting used to it, but it seemed to take right away. I don't think about insulin or carbs when I eat. I just eat. I'm still checking my blood sugar regularly, and I probably will for a few months, but it's just to make sure my pancreas is working.

Chris drove me to the hospital this morning so they could draw some blood. We have to do that 3 times a week for the first 2 weeks. Then twice a week for a couple more weeks, then once a week, then once a month, until eventually I will only go in 3 times a year. It's all to monitor how well the transplant is working and to adjust medication as needed.

Stephanie, my transplant coordinator, just called me with today's blood work results. My white blood cell count is still dropping. It's down to 11, which is nearly normal. So whatever infection I might have had is almost gone. ROCK N ROLL !!

I also have to attend clinic sessions at the hospital every week. Basically, Stephanie will talk with me about my numbers, meds, etc. and I'll see surgeons and doctors who are monitoring my process. I cannot do any exercise except for short walks until they tell me I can do more. They will also let me know when I can go back to work, which at this point might not be until the end of October. It's OK, I am resting and eating healthy, and enjoying my brand new life at home. Just gotta take it easy for awhile and ease back into a normal routine. Once it happens, I know it will be amazing.

This is all very cool. Very, very cool!

Waiting

Dr. Fujita met with me again yesterday morning. He joked and said, "Maybe I will stop checking your blood and just send you home!" We both laughed and I said, "I am ready to go home as soon as you give me the OK." He said they will monitor me again for the next 24 hours. If my white blood cell count gets below 10, they will send me home. As of yesterday morning, it was 15.

Throughout the day, I received a few heavy doses of the tough antibiotics. One of the docs came in to see me and said that if for some reason my white blood cell count doesn't go down, they will probably give me another CT scan to see if anything new shows up, but if it goes down I will probably go home tomorrow.

The surgical team came in later and I was told this was not uncommon with pancreas transplants. Sometimes the new pancreas just has some funk around it that needs to be washed away with antibiotics.They also said I should be going home tomorrow. I'll believe it when it happens...

It's weird, because all of the Aides and Nurses on the floor keep asking me why I am still here. Some co-workers visited me last night and they were even a little shocked to see how good I look and feel. Aside from the white blood cells, I should have gone home last Friday.



My blood was drawn less than an hour ago. My nurse said she will let me know as soon as the numbers are up.

They're up!

And... my white blood cells have only gone down a little bit. 14.6 ... I don't think I'm going home today.



But what do I know? The surgical team came in and told me I am going home this afternoon!! I am so excited!! They are going to put me on some antibiotics to take at home, and they told me to call them if anything changes- pain, fever, chills, etc. You better believe I will. I can't wait to see my dog Moses again. I miss my little buddy so much!!

So, yeah. After 16 days in the hospital, I'm going home a new man.  =)

Ups and Downs

Yesterday, the surgeon who did my transplant, Dr. Fujita, came into my room. He told me that my white blood cell count had dropped a little bit. Nothing significant, but it was a small step in the right direction. He also asked me the standard questions about how I was feeling (Any pain? Fever? Chills? Trouble eating? Nausea? Am I passing gas? Bowel movements? etc.) I told him I felt great and was having no symptoms of infection.

He said although they found small pockets of fluid, after the transplant team looked at my CT Scan results, they weren't convinced any of the fluid was infected. So, we still don't know what is causing the rise in my white blood cell count.

Dr. Fujita explained they can do 1 of 2 things: 1.) Do nothing and see if the antibiotics work, or 2.) Open me back up and take a look inside.

I strongly urged option #1, which they decided to try.

When the surgical team came in about an hour later, they pulled up my CT Scan results on the computer in my room. I had the chance to see all of my inner organs in black and white. WOW! It was pretty cool. One of the docs joked with me and said, "This is very introspective." To which I laughed and said, "Yes, VERY!"

The decision was to keep me in the hospital one or two more days, draw my blood again that night and see if the antibiotic was working. It sounded great to me, but after they drew my blood last night, my white blood cell count was significantly higher than it had been.

It was disappointing, but I believe the surgeons had something in mind in case this happened. My night nurse phoned the on call transplant doc, who happened to be the one joking with me earlier about "introspection," and he suggested giving me a heavy-duty antibiotic to see if a stronger dose of meds would do the trick.

They did!

I was just informed that my white blood count took a good-sized nosedive. It's still a little higher than it was yesterday morning, but it's down from the high number of the blood draw last night. This is a very good sign. So in a few hours, the surgical team will come in again and let me know the plan. I have no idea if they are going to open me back up, or monitor me again with this heavy duty antibiotic. Who knows? All I know is everyone keeps commenting on how great all of my other numbers are and how good I look and sound despite this annoying white blood cell count.

I have patience. Of course, I am more than eager to go home, but I want to go home in good shape. So I can wait. I know I am in good hands because everybody here at the IMC Hospital is fantastic!

We just have to wait and see what's going on with those pesky white blood cells.

CT Scan Results

The CT Scan revealed a few tiny pockets of fluid next to my new organs. They are treating them with antibiotics and I will find out tomorrow morning if the surgeon feels they need to be drained. (I didn't ask how this would be done, but I bet its not fun!)

At the worst, I will be in the hospital for another day or two, until my white blood cell count is normal.

Let's hope the antibiotics do the trick!

Another Day

They want to keep me in the hospital another day because my white blood cell count is still going up. They're going to run a CT scan this afternoon to make sure my new organs are OK. I could have fluid build-up around the new pancreas, it could be something more serious, or it could be nothing at all. Hopefully, we can figure this out so I can go home.

In spite of having too many white blood cells, I feel amazing! I was walking around the hallways last night and I passed a couple of other patients. They had the tube in their nose, and the other assorted I.V. lines associated with a major transplant. They were walking very slowly and it reminded me of the first couple of days after my own surgery. It's amazing to think how much a person recovers in a short amount of time. But we do recover. We do get better and we make it to the next phase. Because that's how we roll.

Speaking of which, I'm going to walk a few more laps around the halls, look out the windows, and think of how exciting it is that I will be going home any day now.

For this too shall pass.

White Blood Cell Count

Friday, my white blood cell count was a little high. This could be a sign of infection, or it could be from the steroids they have me on. So they ran a few different cultures and everything came back negative.

Saturday, my white blood cell count was even higher, however all of my other numbers look good. My pancreas graft is right where it needs to be, I don't have any chills or fever, and my blood sugar is normal so they don't know what is causing this, but they've decided to keep me here 1 more day to make sure I am OK.

It's a little frustrating, but I suppose I'd rather stay here an extra day than leave and have to be checked back in. So now the plan is to go home on Sunday.

They put me on an antibiotic. Let's hope it works!

As far as how I'm feeling... well, to be honest I feel like a million bucks! I can't imagine staying home for 6 more weeks, but we'll see what happens. I can already tell how different my life is going to be. More energy, more optimism, my charisma, and more normalcy.

Rock and freakin' Roll !!

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!

Last Post as a Diabetic

Well, it sounds like the surgery is a go. It will happen in a few hours. I have no fear or anxiety for the operation. At this point in my life, after being diabetic for 32 years and having the loss of kidney function for 7 months, I am ready to become the recipient of a new working pancreas and a new working kidney.

This is my last entry into this blog as a diabetic. I will not be able to write for the next few days, but once I feel up to it, I will be back.

I am really excited for this to happen. It's going to be painful at first, but later on... it will almost be like becoming a different, better person.

I AM SO STOKED!!!

2nd Call from the Hospital

I got another call around 10 o'clock last night. Organs might be available for me (again). That was quick!

I told Christiana to stay home and get some sleep because I knew it would be another grueling several hours at the hospital before we know if the surgery is going to happen or not.

Everything looks good this time. The organs will be procured around 11:00am and Christiana will meet me here at the hospital. If the organs are in good shape, surgery will start around 3:00 or 3:30pm.

I have had only 2 hours of sleep, but I am excited! I am ready for a successful transplant.

No more diabetes!!

Kindness

Even though I was not able to complete a kidney-pancreas transplant earlier this month, some good things have come from the experience. For example, I have had many opportunities to bring up the importance of organ donation with several individuals, including friends, family, co-workers, and even readers of The Salt Lake Tribune.

Fellow kidney-pancreas recipients and expected recipients from around the country have reached out to me using Facebook. (It's unique how quickly the internet can bring people together under similar circumstance, isn't it?) I've spoken with two people from Utah who had the surgery more than 12 years ago and tell me how different and amazing they feel! One woman from Texas has just started her journey toward a kidney-pancreas transplant and she's reading everything she can about the subject.

It's overwhelming to discover that so many people support organ donation and would do anything they can to help a person in need. In fact, one of my good friends named Brian has taken it to a new level.

While he is alive, Brian donates whole blood, platelets, and even bone marrow in his spare time. He doesn't get paid to do this and sometimes the process knocks him out for several days, but Brian tells me it is worth knowing that a child who has been severely burned can live a better life without pain.

Brian is a good guy. He is like almost everybody I can think of in the compassion he shows for fellow human beings. And kindness is contagious! I am reminded of a quote:

Kindness is the language which the deaf can hear and the blind can see.  ~Mark Twain

More importantly, kindness is universal.

To find out more about bone marrow donation, visit http://marrow.org/

Anger

Early this morning at dialysis:

Nurse Leslie: “I heard you had an interesting week.”

Jake: “Yeah, I almost got out of here.”

Leslie: “Well, at least you’re still at the top of the list. I mean, if you are getting called into the hospital, it will probably happen very soon.”

Jake: “I hope so... After they told me the family withdrew consent, I was OK with it, you know? I figured the family wasn’t expecting the death and if the donor hadn’t mentioned anything about the desire to donate, I can see how it could be a shock. But the next morning as I drove to work I looked at the clock on the radio and thought, ‘They’ve pulled the plug and the donor still has all of those healthy organs…’ and I became angry. Not against the family or anybody in particular, but angry at the fact there were good organs going to waste that could be of use to so many people... I wish the donor would have expressed their wishes to their family.”

Leslie: “It’s understandable to be angry…”

Jake: “Thanks, Leslie. I’m OK again now. I just have to accept the fact that those organs weren’t meant for me and I have to keep my hopes up for the next ones. It’s weird to think like that, isn’t it? That somebody has to die for me to receive a new kidney and a pancreas.”

Leslie: “I think it will happen soon for you, Jake.”

Jake: “Thank you. At least now I don’t think I’ll feel guilty when it does. I will be extremely grateful towards the donor family and I hope I can somehow express myself to them with a letter or a card or something. How can you express gratitude for the gift of a better life? There are no words to really convey it, are there?”

When I left the dialysis center two days ago, I thought it was for the last time. I was excited and relieved to get new working organs. I remember sitting in the chair for the last ten minutes of treatment and looking around the room at the various patients covered in blankets. Most of them are probably too old to receive transplants. I wonder if they would be happy for me or if they would feel discouraged when they heard of my escape.

But I haven’t escaped yet. I am back in the chair with tubes in my arm, shivering cold under a Snuggie and a blanket. I play a few rounds of online poker and I sleep. I feel drained when it’s over, but I am hopeful.

I am really looking forward to a better life.