The ball is rolling!!

Hey Friends. The Lee Johnson Kidney Foundtion has been officially registered as a non-profit and we are working our way towards our first event. The 2nd Annual Organ Open. Also being called the Grip and Rip Classic. Its a long story dont ask. LJKF teamed up with Marriott for this years golf tournament and we are excited about the amount of people that we will have participating. We are looking at filling the whole field of 144 golfers. We will have tons of prizes, good music, and plenty of entertainement.

Our goal when we started the non-profit was to have a family to focus on each year. There are currently over 300 people on Maui alone who are on dialysis. Not one of these people are scheduled to have a transplant in the next 10 months. After doing some research as to why this could possibly be the case I realized that Donor Education is as much an issue as anything. This was not something that I realized because Erica was so pro-active and already quite educated on the medical side of things and knew the pros and cons.

So the LJKF has spread not only into the assistance of tranplant recipients but also into organ donation education. Hey that rhymes.

We are looking for anyone who wants to play, volunteer, or donate to the golf tournament this year. If you are interested in any of the above feel free to contact me at mauikidney@gmail.com or 808-214-3274.

Hey check out the new logo.

Paying it forward

Last night I returned home from Minnesota and my six month post-transplant follow up. I received A+ from all the doctors and they are considering my tranplant a success. They told me that they feel like I am hitting my stride and this thing is going to last me awhile. We now have a new mission.........

Tara and I have started a non-profit. The Lee Johnson Kidney Foundation. The LJKF is a non-profit 501(c)(3) that is raising money to help kidney transplant patients in Maui and beyond. We want to work with transplant recipients, donors, families and their friends. Tara and I realized that this gift that I received started with what Erica gave to me but it went so far beyond that from donations, gifts, phone calls, emails and tons of motivation and support. We want to offer that to other families that are facing this difficult time and be there for them however we can.

We are in the process of helping our first family and we're excited!! More details soon. We have to work out privacy issues

Thanks so much to the people that have already donated time and effort to our cause. There will be so many families over the years that will appreciate what you are doing and will be able to live and see life in a whole new way.

Keep posted for our website and facebook page and of course the ways that you can donate. We would love for you to donate any time, money, or ideas. We are here for one reason......show Aloha.

30 going on 23

Today is my three month anniversary so I thought it would be a good time to crack a cold.......sprite, and add a post.  By now Im sure most people dont check this that often, especially with my inconsistiencies keeping it up to date.  But I am going to keep putting random posts on here from time to time.  Maybe for no other reason than someday a person with similar situations can have a reference and actually hear the good the bad and the ugly first hand.  Looking back that is the one thing that I wish I would have had, a reference.  I didnt know what was normal and what was abnormal.  Every experience was new to me and new to every one else that was close to me.  In the five years that I have known this was pretty unavoidable I have met a total of two people that had a kidney transplant.  I took as much info from them as I could but you dont really know the questions to ask until you are there and the whole thing becomes such a whirlwind there is no time to ask "all" the questions.  So if one person gets something out of this for their own experience, Im stoked.  

Life has completely changed as I know it.  I am at the point now where I am seeing the benefits of the tranplant beyond what a sheet from the lab tells me.  I have more energy than I have had in five years, my attitude on life has done a 180, my eating habits are better, I exercise more in a day than I used to in a week, better color, way more patience.....etc, etc.  This whole experience has done as much if not more for my mental state than it has for my physical.  I have fallen in love with living in Maui again.  Its kind of like when I moved here 6.5 years ago and I was enjoying all the reasons I decided to come here.  All I need to do now is get the moped back, put the Outback uniform on, and get all the MN boys back here to enjoy it with me.   Of course I would have to put the 2am shifts at Fish and Game and the 4am shifts at my house behind me.  Not a problem.  

As far as from a medical perspective, things are great.  They have reduced my trips to the lab to once a week and my doctor visits to bi-weekly.  My creatinine level still goes back and forth slightly but its always in a good range and they have said at this point it becomes a feel thing.  You feel bad, find out why.  You feel good, appreciate it.  To say that Im 100% would be a stretch because I tried to do 20 pushups today. Lets just say I was closer to 10 than 20.  But I do feel 300% better than I have in a long time.  

Tomorrow I go to the doctor for my three month checkup.  Im assuming things are good.  I did also learn the power of positive thinking.  If my numbers arent good Ill be surprised, but there has been bigger bumps in the road before. Aloha.

Back in full swing

We are now almost two months post-surgery. This is supposed to be a good thing according to the hospital. They find most complications and rejections come in the first two months after the surgery. So we feel fortunate that we have survived everything (knock on wood). It definitely didnt come without some trials and tribulations. After we got back to Maui I was feeling good and thought that all was good. Soon after I was checked into the hospital in Maui for dehydration and because I had a cyst in my knee that was causing some complicatons. So back I went to the hospital but this one had a great ocean view. Its harder to like the ocean view when you cant be in the ocean. After two nights spent there I checked out full of fluids and feeling a bit better. I had the cyst drained and was given a shot of cortisone which so far has done the trick.

One Wednesday I returned to work and have had a very good energy level to do all the things I want to. For the first time in a few years I feel completely healthy and feel like I can do anything that I used to do. Its amazing how good it feels and how sick I felt even though I didnt know I was sick. I have said it before but I really appreciate being able to do simple things like climb multiple flights of stairs, swim, work a full day at the office. These are things that were a challenge for me last November.

Again, we really appreciate all the support and love that we have received from our friends and family. There have been so many people that have done so many nice things for us we have no way to even think of how to repay people. We cant believe the love. I hope everyone had a better start to your year than I have but I challenge anyone to have a better rest of the year than I am going to have. Hope to see everyone that I havent seen back in Maui very soon. Aloha.

Home

We have arrived home and pretty much settled in. Of course the weather here has been rain and wind most days but it feels a lot better when your cold because it got down to 60 degrees than when it is -30. Tara starts back to work on Wednesday and I will be back in about two weeks.

We had a great time this weekend going over to the Hana side of the island for some peace and quiet. Tomorrow is the first time that I see a doctor back here in Maui. I'm sure I will really appreciate how good my doctors are in Minnesota now that I am back here and having to deal with the island mentality that is common here. We love the laid back lifestyle here but not when it comes to my health.

Hopefully we will be celebrating more good news tomorrow along with the fact that I will be turning the big 3-0. It will be a good time to reflect back on the last ten years and to also look forward to a healthy journey towards my 40's. Tomorrow will be a birthday to celebrate a little extra for what we have.

Maui here we come

After a great weekend in Duluth with my family we awoke yesterday morning on our excursion back to Minneapolis. When I started the car that we have been using the temperature read -24 for the outside temp. I closed my eyes and just imagined myself sitting on my lanai with just a pair of boardshorts on. In my mind I knew I had only 48 hours left to deal. So we headed to Minneapolis. Normally the drive will take us abot 2.5 hours, yestarday because of the cold and blowing snow it took us 4 hours. Tara and I split the driving because frankly Im still not 100%. Thank god I married a Canadian and not somebody from Hawaii because she is a champion winter driver!!

We then got to the doctor for some routine tests and to get final clearance to fly out. Of course my blood levels came back abnormal. The creatine is back up to 1.86 which didnt seem huge but they dont know why. So the sent me home because it was too late in the day to do anything anyway and they said come back on Wednesday and we'll go from there. I asked if I should be making arrangements to change tickets to fly back later and they said probably, but wait. So here we were back to square one, so close to palm trees and sand but it was starting to feel like we would never be home. We headed back to our hotel for night #25 in a Marriott and tried to keep our minds occupied so we weren't thinking about Wednesday. It was too cold to go anywhere so we stayed in and Tara made me watch Rock of Love, the worst show on TV.

We woke up this morning and headed to the doctors office. They took my blood and sent me off to have breakfast. As I was walking back from breakfast I saw my nurse who has been with me since day one of this whole thing and I could tell the moment I saw her it was good news. The creatinine is down to 1.7! Im outta here!! I truly now believe in the power of positive thinking. I talked to Erica yesterday and to say the least we were both pretty bummed about the roller coaster ride this has become. She kept telling me that we should be thinking positive and it was all going to be fine and its just another bump in the road. At the time it kind of went in one ear and out the other. But when I woke up this morning I really felt positive and tried to maintain that attitude when I got to the doctor. It worked.

It has been a long journey for the last five weeks, we have met so many good people and have been constantly reminded of the love that our friends have for us. This whole experience has been something that has reminded us of how important health is, how valuable family and friends are, and how to never take things for granted. We look forward to seeing all the Maui people very soon and we are excited to come back to normality. For now, Aloha.

Lee, Tara, and Karen

Creeping along.....

A little more good news today as my level has dropped again slightly. 1.71 is the new number so we are happy that it is still headed in the right direction. The lowest I have been post transplant is 1.5 and the doctors say it usually bottoms out and then comes up a little to a consistent level, so I think we are close. Now we just have to make sure it stays there once this is all done.

I went out with a friend last night, that is when I felt the most different. Obviously I didnt drink, but I had to leave almost immediately because of the cigarette smoke in the room. My body has become way more sensitive to smoke. It made me feel like I was smoking myself. So my big night out lasted about 45 minutes, which was fine with me. It just felt good to get out of the hotel and see some friends. We also spent about three hours at the Mall of America, taking Tara on a much deserved shopping trip. By far the most eventful day post surgery that I have had. Its a balmy 25 today so we are really excited. We can go outside for over 45 seconds without feeling like we are getting sick. Im such a wuss now.