one step ahead and two back

We got a bit of bad news today so I thought I would share. Currently my kidney is in a state of rejection. Its not major but its not minor. I am writing this from a hospital bed as I have been admitted for two days to receive IV's of anit rejection meds. I am tired from probably the second longest day since this whole thing started. I will write more tomorrow and fill in the details. For now I am celebrating the New Year with an IV and a Gatorade, if I make it to midnight. I wish everyone well and will keep updated. Aloha.

the waiting game

We are still stuck in Minneapolis for a couple more days because the doctors are a hesitant to let me leave. My numbers have slowly got a bit worse so they are starting to be a little conerned about rejection. My normal creatinine level shoudl be around 1.0-1.5. I am currently running around a 2.3 that is up from a 1.8 last week. They do think part of it is due to major dehydration that I have had because of the flu so they gave me two liters of IV fluids today to see if it helps anything. It definitely made me feel a lot better that is for sure. Tomorrow we will go back to the doctor for what we hope is the last time for a couple weeks. If everything is good they will allow me to head to my parents house in Duluth which is about 2.5 hours away. If not they will do a biopsy (go in and take out a chunk) of the kidney and test it to see its function. Tomorrow is a big day, everyone keep their fingers crossed. Happy New Year if I dont get back to this in the next couple of days.

ups and downs

We have had a bit of a rocky last couple of days. I have come down with a bit of what we think is the flu. Havent been able to keep much food down and I was stuck in bed all day Saturday. Today is a little better as I have at least scraped myself together to get down to the business center at the hotel to write this. We tried to go out for our first nice dinner on Friday night, what a mistake. I was miserable the whole time and our meal didnt last very long in my stomach. We are hoping that it is just a flu and nothing kidney related. We will find out tomorrow. My creatine has increased slightly and the doctors are a bit concerned, but they said it could just mean that we need an adjustment on the medication.

We will find out everything tomorrow and keep everyone posted. We thought this was all going a little too well. But at this point there is no need to panic. They tell me this is all common. Take care everyone.

Frozen Kidneys

I have been out of the hospital for a couple of days and everything has been going smooth as silk. Im no longer too worried about rejection (although its still a possibility), but I am worried about freezing to death. Today is the first day since I have been out that it has been above 0 degrees. Its a heat wave at 5 above. We had a windchill my first day of -35. That is 110 degrees differnce than where I now call home. I dont remember every expereincing anything like this when I was a kid, although I know I did every year.

We have been going back to the doctor every other day for blood tests and to make sure everything is in order. So far so good. They all tell me that I have had the "perfect transplant". There is a constant adjustment of the mediacations for the first couple of weeks but after that everything should be good to go. We have put in some serious TV hours at the Marriott and ordered more room service more than I care to admit. Im sure Tara is sick of watching sports every night and day, but as usual she's been a champ. Karen seems to be having a blast though, we have had lots of friends come by with toys and food so our little hotel room as morphed into a very small studio apartment equipped with a fridge and everything. The people at the Marriott have been unbelievbale to us. It makes me proud to work for a huge company that really feels like part of a family. They have sent us fresh fruit, food, and gifts on a couple of occasions.

Christmas will be a bit different this year. We will not be able to spend it with my parents because they live about three hours away and I have to be at the hospital on Christmas Eve and then again on the 26th. We will be heading to our good friends the Saxons tomorrow instead. They are pretty much family anyway. Tara and I feel like Christmas came last week so we are just going to celebrate each other, our health, and watch Karen open all her presents.

I hope everyone has a great holiday and that everyone takes a moment to tell the people that they love how much they really do. There I go getting emotional. It's that damn female kidney.

Mele Kalikimaka!!!

Looney Bin

Well its the middle of the night on my last night in the hospital and I think I have been transferred to the Mental Health Ward and nobody told me. My roomate that I have had for the last three days has been a nice guy and hasnt said a whole bunch. But, at about 1:15 am this morning he went a little wacky. I am writing this from down the hall at a public computer because I cant go into my room. I awoke to him digging through the nurses station in our room and he found a pair of scissors. He proceeded to cut the tape from his neck and yank his IV out and blood started shooting everywhere, it looks like a murder scene in my room right now. The spooky part was then he tried to leave with all his belongings. He walked past my bed towards the door with his jacket and bag in hand and blood literally covering his entire body and waved goodbye to me as he walked out. The nurses were able to stop him and now they are cleaning up the "murder scene" so that I can go back in there and try to get a few hours of sleep. Thankfully for everyone I am doing well and I was able to get right up and walk out there without having to disconnect a bunch of wires and IV's. I knew this whole thing went a little too smoothly.

Everything has been doing very, very well. My doctors have told me that I am the "star patient" on the floor and that I had achieved "rock star" status when it comes to recovery. The only concern that they are having with me is my blood pressure hasnt gone down as quickly as they had hoped. They can control that with medication which is good. It can also be a side effect of the anti-rejection drugs. I have met a lot of people the same age, younger, and older than me that have had a lot more issues than me, so I feel very fortunate.

The nurses here are some of the nicest and best people that I have been around. They are all so genuine and willing to help you with the smallest detail and the doctors are not only cool but they are smart, smart people. I was told my surgeon is considered the top in the world. I hope nobody that reads this ever has to go through this, but I can say from experience this has been a positive thing in my life and nobody should go anywhere else but right here in MN.

My incision is starting to heal and the pain scale number with my nurses is now a 2 compared to a 7 a couple days ago. I am now starting to feel the positive effects of the kidney in my body. My mind feels clearer, my vision is better, my energy is high and will get even better as time goes on and I heal from the surgery, and my mentalality is very positive. Kind of a new lease on life.

Tomorrow will be a good day, one of my good friends Tyler will be having a Christmas Party at his house for his brother Carney that has come home from Maui so I will see lots of people that I havent been able to see since being here. It will be interesting to be drinking soda water and cranberry juice and watch everyone else drink thick beers and wine, but Im hoping to have this kidney last me for a long long time. I dont think Erica is willing to give me her last one if this one runs out of gas because I dont take care of it.

Speaking of Erica, what a champion. She checked out yesterday and is comfortable back in her hotel room downtown. There is no way that I will ever be able to thank her enough for what she has done, she has changed so many peoples lives and made the Johnson family very very happy. My mom only has one child, my wife only has one husband, and my daughter only has one father and she just extended the warranty for all three them. The last thing that she wants out of this is recognition but when you see her make sure to give her a hug for me and tell her thank you, because if I do it everyday for the rest of my life I dont think I have done it enough.

Geoff and Tara have been great support for the two of us as well. They have logged more hours and done whatever we have needed. With this transplant there needs to be a lot of organization and effort put in to upkeep and maintenence on the kidney and those are two words that arent in my top 5 characteristics. Tara has so many notes and folders and has everything in order. I didnt need this to happen to appreciate her, but is a constant reminder as to why I did. Her and the whole Sullivan family have shown me so much love. Tomorrow (Sat) Tammy(Tara's twin) and Tara's Aunt Martha have been planning a fund raiser back in Canada for people to attend. There will a live band, an auction, tons of great prizes, and food and drinks. They will raise money for medical bills and expenses for our family.

Tara and I have started a non-profit group to raise money for families that are experiencing a similar situation to what we have faced. It is the Lee Johnson Kidney Foundation. We are officially an non-profit organization and registered with the IRS to raise money for non-profit. We are excited to share this gift with someone else and help a family each year the way that all of you have come together and helped us. I can honestly say there is no way this would have happend without people like Geoff, Tammy, Martha, and the hundreds of other people that have helped.

Okay I think the blood has been cleaned up out of my room so I need to get some rest. See you all soon. Tons of love from Tara, Karen, and myself. ALOHA!!

Recovery

Hello friends, I finally found out how to use the Internet from my hospital bed so I can use email which has made the day go by a little faster. Today was a day of much improvement for both Erica and myself. I got a decent nights sleep last night which is the first in three days. They took the oxygen out of my nose and they got me off the drug drip. I am now on oral medication that I take every five or six hours. I am really hoping to have this catheter out which is definitely the most annoying part of this whole process. I was able to walk around the hospital quite a bit today and am becoming pretty mobile. I had plenty of friends and family float in all day which made the time pass rather quickly also.

The kidney has been doing its job to say the least. The three major concerns for me were, Creatine, Phophorous, and Potassium levels in my blood. When I checked in on Tues they were 8.3, 7.7, and 5.0. Now they are all running on normal human being levels of 2.0. 3.3, and 4.5. This doesnt mean much unless your in the know, but trust me its really good news.

Hopefully tomorrow Erica will be checking out and I will probably follow on Saturday. I cant explain how excited I am to complete this chapter and start over. I just want to get back to work and normality. For the people that I work with just to let you know, I would do anything to sit down with a Branson exchanger right now. Just to get back in the groove. Thankfully there is a doubleheader NBA on TNT tonight so I will be farely occupied until then. Im sick of watching Roseanne and Saved by the Bell. Although I am again appreciating how cool A.C. Slater really was. See yall later.

Lee

Mighty Little Kidney

It is 9am, the day after the surgery. The waiting and nervousness are now over. Erica and Lee are both feeling very sore, but are in good spirits as always. It was a LONG day yesterday, starting around 5 am when we all (Lee, Erica, Geoff, Lee's Mom & Step-father, his aunt Carol & uncle Roy, great friend Mary, and myself) headed to the hospital to begin a scary but amazing day.

Most of the early morning was preparation for Lee an Erica to go in to surgery. The two were put in rooms side by side, and there was a lot of knocking on the wall between and nervous laughter. All the family came in to give their best wishes; lots of tears and many hugs, before Erica was rolled away first to begin the procedure. Lee and I waited patiently and impatiently, for the doctors to come back and say they were ready for him. It was very difficult to say good-bye, knowing that they were about to cut open the love of my life, and we would be waiting hours and hours to see each other again. The nurses and doctors promised to keep us updated as often as possible, but it was still a very scary time for us all.

We got word first from Erica's doctors, that they removed the kidney and so far everything was going really well. Now, to transfer that kidney to Lee, hoping it would happen quick and smooth, and start working right away. Erica pulled through really well; she has been such a trooper through all of this. She seemed so calm when she was ready to go...almost like she just knew that this was meant to be, and everything would work out fine. And it did.

Lee's surgery took much longer to complete, waiting to see that he would accept her kidney, and his body would start showing signs that this organ was meant for him. During the wait, when all of us were strained and stressed, in walks our friend Jenny with a huge bouquet of roses. Thinking they were for Lee, I looked at the card and read, " Tara, I love you. See you when I wake up. Love, Lee." I was so overwhelmed, of course I started crying. Leave it to Lee to be going through a kidney transplant, and still be romantic and thoughtful. It was an emotional day for us all, but we were so relieved when the call came to tell us that he was doing wonderful, and was coming out of recovery where we could finally go see him.

Erica and Lee are now attempting to rest. Geoff and I came in early to the hospital to be with them and they both seem pretty sore and uncomfortable. My sister Bonnie has been taking care of Karen, and she is having fun playing with her cousin Roanan, but last night she was still saying "Dada Dada", so I know she is already missing him.

So much of yesterday feels like a blur. The waiting and the crying, the laughter and support of so many friends and family. It all seems so unreal, that Erica just walked in to our lives, and gave Lee her kidney. There is no doubt in our minds that we were meant to meet her. That this all was meant to be. It is clear that someone has been looking out for us, and we are so grateful and happy that she will be a part of our family forever. It seems like now it will still be a long road to recovery for both of them, but the worst is all behind us. To take a kidney from someone so small, and put it in to a big guy like Lee, it is amazing and exciting to see that it started working almost instantly. One thing is for sure...that is one mighty little kidney.


Tara

Go time!!

The countdown has officially started in hours, no longer days. About 9 hours from now I will be off in never never land while they rewire my insides. We had tests all day today at the transplant center and spoke to numerous doctors. The University of Minnesota is really unbelievable. They have a whole surgery team that takes care of me and a whole separate one that takes care of Erica. I think both of us are very impressed with the people that we have been dealing with. There is definitely a reason why they are one of the best in the world. It has made me feel old because two of my doctors are the same age as me, but they are all very, very good. The doctors have given me pretty positive responses to all my questions. I am fortunate that I have time on my side and my overall health is very good. There is alway risk of infection or rejection but everyone feels pretty positive. Its funny because for these people it is just another day at the office, for me its one of the biggest days of my life. They deal with this 6-8 times a week!!

We have been joking about the what ifs when I get Erica's kidney. Maybe it will bring out my feminine side, and I will become a top notch massage therapist. I will start to like to watch chick flicks with Tara, and we can really "talk about our feelings". Geoff may also find himself mildly attracted to me. All small sacrifices for a healthy kidney.

For the next few days Tara will be keeping everyone up to date on what is going on with the procedure and hopefully by Saturday I will out of the hospital and on my way to recovery with my family. The hardest part will be that I wont be able to see Karen for a few days because she is still a little sick with a cold and they dont want any risk of infection. The drugs that they give me lowers my immune system to an almost unsafe level. One small sneeze could make me really really sick.

I appreciate all the support and phone calls that I received today and throughout this whole process, I know we have tons of support and that means a lot to both Tara and I. We look forward to spending quality time with everyone once this is all over and getting back to normal life. We have realized normality is a good thing!

See you all soon when I'm one pound heavier.

Knowledge is Power

Today we are finally able to catch up on our rest from the travel and the adjustment to the cold weather in Minnesota. As I write this it is 10:45 am and both Tara and Baby Karen are still sleeping. It has been a little depressing because Karen has been really sick with a cold and I cant really go near her. They will call of the procedure if I come down with any type of illness. That would throw a big wrench into everybody's plans. Its really hard to say no when she keeps saying "up dada" over and over again to pick her up.

Yesterday we had our first consultation at the University of Minnesota and we learned tons about this whole ordeal. It sounds like I will be in the hospital for 5 to 7 days depending on if or when my body accepts the new kidney. We learned that in my body some sort of chemical reaction happens where the new kidney sends a message to the old ones basically saying, "this is my house now time to shut you down" and most of the time the old ones do what they are told. The doctors cant say scientifically why that happens but it does, kind of cool. He also told us that a lot of patients dont know how sick they feel until they dont feel sick anymore. He said people feel like superman sometimes within a few hours, I thought that was cool. Everyone always asks me if I feel sick and I say no because I really dont, but maybe after I receive this I will realize that I do. He also explained the risks. Pnuemonia (sp), infection, rejection are all possibilities that could go on as well. So its not perfect but I have my age and my overall health on my side.

We spent last night at a good friends birthday party. We first volunteered our time for a group called Feed My Starving Children. Its a non-profit group that sends food packets to starving children in 55 countries around the world. It felt good to be a giver. I have been looking at myself as a receiver for this week so it felt to do something for someone else. In just a couple hours of work we packaged enough food to feed 50 kids for a month. Seeing the stories of kids in Haiti and Africa that weigh the size of my daughter when they are five years old made me feel like needing a new kidney is a walk in the park.

Today we will relax, and tomorrow will be the start of the madness. Erica and Geoff fly in tomorrow as well as Tara's family from Canada. It will be a party at the Marriott City Center in Minneapolis.

Tara and I want to thank everyone for the great messages of good luck and prayers. Like Bob Marley says, "everything is going to be alright".

Brrrrrrrrrutal.......

We arrived in MN today and the weather is horrible. 15 degrees and it got dark at 4:30. I know the people that are reading this from MN are probably shut up Lee you only have to deal with for a month but it was a shock to the system. Fortunately the Marriott in Downtown Minneapolis is connected all over the city by skywalks so we wont really be outside that much.

We checked in today and accomplished mission #1, a Chipotle Burrito. Always the first thing I get when I get off the rock of Maui. We went over to Target and picked up a Wii for the hotel room as well, should be a good way to pass the time before and after the hospital stay. Im going to try to talk the nurses into letting us having it in the hospital as well. It would be a great way for Erica and I to pass some time in the hospital.

We are off to the first appointment with the doctors tomorrow to go over my labwork and to make sure everything is still in order. They said we may have to do dialysis for a couple days to "clean out the system" before surgery. As long as it isnt forever. Aloha.

The countdown begins........

A week from today I will weigh a pound heavier. That is the approximate weight that my new kidney will weigh. The funny part is that Erica (donor) started her own blog called "one pound lighter".

The common question that a lot of people have asked is where do they put it. Until a few weeks ago I didnt know myself. They dont take out the old ones, working a little is better than not at all. They actually add it into the left side of my stomach. I guess they tell me there is room.

I have been very fortunate for a more reasons than I can explain. A. I got a kidney, the average wait is four to five years, I had to wait a few weeks. B. My good friend Geoff hosted an exceptional golf tournament that raised enough money to fund my donors expenses, wages, and travel costs. C. My wife is a complete champion. She has taken care of me and put up with more than anyone that I have met. D. I will be with my family and friends in MN throughout the whole process and will probably see people that I havent seen in years. Its all very exciting.

We are starting to get a little nervous as well. I have never had surgery and I dont really know what to expect, I do know that the beds in hospitals arent built for guys that are 6'5".

This has definintely given us a new outlook on life. Over the last couple weeks I have started to appreciate dirty diapers, annoying tourists, waiting in line at Star Market, and Dr. Phil. These are all things that I never liked, now I have started to appreciate having the ability to experience all these things. Because you never know when something can change or be taken away from you. Basically I have learned to appreciate the negative along with the positive.

Tomorrow we will be on a plane leaving the place that we both love more than anywhere we have ever been. We will leave sun for snow, and boardshorts for tooks (as my wife calls it). But like people in Maui say the best part about leaving is knowing that your coming back.