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.

Denied

After nearly 10 hours in the hospital, I received a phone call through the land line in the room. It's Erin from the surgery team.

Erin: "Hey Jake, I have some news for you..."

Jake: "OK..."

Erin: "The donor family has withdrawn consent of the organs which means there will not be a transplant right now. I'm really sorry. This happens sometimes but we expect to see you back here really soon."

Jake: "Oh. OK, I understand. I've only been on the waiting list for six months and I know I'll be back soon. Today was a good test run of what to expect, so thank you."

Erin: "Are you OK? Is there anything I can do for you?"

Jake: "I am OK. Thank you for all of the information today. I will see you soon."

I have mixed feelings. On one hand, I respect the decision made by the donor's immediate family to keep the deceased body parts in tact. On the other hand, it seems like a betrayal. The donor made a conscious decision in life to provide vital organs to those in need after passing away. And several people, including myself, were counting on those organs for a better existence. Now our chance is gone. It's back to the waiting list for another healthy donor with blood type O. The wait could last another couple of weeks, or a few more months, or even another year. And for what?

If you have signed up to be an organ donor, please make sure to explain your wishes to your immediate family. In the United States, your family has the right to override your decision to donate organs in the event of your death. So it is very important that they understand and comply with your wishes.Tell them while you are still alive.

When I first imagined somebody passing away in order to provide a better life for several different people, I felt conflicted. It is sad that a life must end, however after my experience today I realize that it's better for a life to end and help others rather than to just end.

Tonight a donor passes away with all of his or her healthy organs. The liver, kidneys, pancreas, lungs, heart, eyeballs, skin tissue, bone marrow, etc. will be buried with the body.

Does it make a difference? To many people, yes- it makes a very big difference.

I GOT THE CALL!

This morning at dialysis, my cell phone rang. I looked over and saw that the caller was from the Intermountain Transplant center so I answered.

Jake: "Hello?"

Stephanie: "Hi, is this Christopher- oh wait, you go by Jake don't you?"

Jake: "Yeah, either name works."

Stephanie: "OK, well this is Stephanie from the transplant center. How are you doing today?"

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

Stephanie: "I'm doing great. So, the reason I'm calling is because we might have a kidney and a pancreas for you."

Jake: "Really?!"

Stephanie: "Yes, we don't know yet if the organs are good, but we'd like to keep you posted because you are at the top of the recipient list. Can you check into the hospital at noon so we can get you prepped and ready in case they are good?"

Jake: "Yes, I am at the dialysis center right now but I'll be out of here in about 45 minutes."

Stephanie: "OK. Well, I will give you a call when I find out more, OK?"

Jake: "OK. I am excited!"

I disconnected the call and dialed Christiana's work number. She wasn't expecting the news and her voice echoed anxiety and concern. She asked if I needed her to drive me to the hospital. I said it would be a good idea so she agreed to meet me at home around 11:30.

I called my team leader at work and told her the news, then I called my brother. After that, I sent text messages out and updated my Facebook status.

Chris met me at the hospital and threw her arms around me. She was crying. Stephanie met with us and re-explained the situation. We have to wait and see if the organs are good for a transplant. They wanted to admit me to the hospital and have me prepped and ready for surgery if and when the organs were procured and examined.

Right now, I am sitting on the 10th floor of the IMC patient tower. I am dressed in a surgical gown. I've seen a few different doctors who said I was OK to proceed with the transplants. They did some blood work, ran an EKG, took some x-rays, gave me a bottle of bowel evacuant, and told me to sit tight for a few hours until they have a chance to procure the organs.

A really cool woman named Erin went over everything I was to expect during and after surgery. And surprise! They saw some stones in my gall bladder so they're removing that during the same procedure. Rock and roll!

I am really looking forward to this. Is it scary? A little bit, but I know everything will turn out great. The first 2 weeks after surgery are going to suck, but after that... my life will change for the better.

I AM EXCITED!!

Tonic Water

Today I watched a fellow dialysis patient experience what looked like a major leg cramp. It was strange because I could see by the expression on her face that she was in pain but what could I do to help? Nothing. She just had to wait for the cramp to pass.

Finally, it did.

I previously wrote about my own ordeal with leg cramps and how not taking diuretic pills helped, but I forgot to mention Tonic Water.

Tonic Water contains something called quinine, which works as a natural muscle relaxer. I stock up on the generic brand of diet Tonic Water and each morning before I leave the house for dialysis, I swig back four or five big gulps of the stuff. It works! I also take some at night to help with Restless Leg Syndrome (one of the many side effects of kidney failure). So far, so good.

Life isn't for the weak, is it? I mean, each one of us is the accumulation of a massive race of atoms, molecules, cells, time and space all competing to get here and form each one of us. To form YOU and help make YOU who you are right now. Isn't that something? If you think about it, that is reason enough to fight for life. But you have to keep the fight alive.

For me, the fight is diabetes, kidney failure, dialysis and a pending organ transplant. For you, it might be some other combination of things. Work, money, marriage, raising a child, etc. Whatever it is, each one of us is fighting the fight to stay alive. But more importantly, we're winning!

Every now and then it's a good idea to stop and think about what you've accomplished and count yourself lucky to be here. Looking back, you can see how much you have in your favor. You can see how the universe has worked it's magic for you to be here. To live your life. To make a difference. To be you.

I'm glad you're here, and I'm glad I'm here with you. Thanks for making the voyage a little easier.