Progress.

Today we received some good news. The creatinine level in my body has lowered to close to a normal level. This was exciting news this morning because the frickin thing didnt budge for the first three treatments of the medications. But today, today was good. Doctors told me they would "accept", not be satified but "accept" anything below 2.0 Today it got down to 1.88 so they are pleased with the progress. I am hoping to show up tomorrow and have it even lower. But I cant be picky. I am fighting off a cold this whole time because of this ridiculous weather that I have to deal with here in MN. So I have to make sure to drink at least three liters of water a day and stay really hydrated. The worst thing a kidney transplant patient can have is dehydration. The kidney gets tricked into thinking that it doenst have to work anymore if you arent supplying enough fluids. So if you ever run into me back in Maui and I dont have a bottle of water with me punch me in the arm. Just not in the kidney. Any of the three that I now have.

Keep our fingers crossed for improvements tomorrow. Aloha.

I love this place

Here I am back at the hospital and clinic everyday through next week. They have determined that the kidney is being rejected by my body. They are three types of rejection, Cellular, Antigen, and Vascular. That is also in the order of severity. I have a pretty good case of Cellular. It could be worse but a lot of people dont have to deal with this at all. My life has now centered around defeating this. We have spent seventeen nights in a hotel room downtown Minneapolis, we then stayed at our friends the Saxons house for the next few nights and now my parents have come down to hang with us so we all got rooms at a Residence Inn downtown Minneapolis. My days have become pretty simple. I get up at 600 am head to the clinic sit in a hospital bed get injected with steriods, and anti-rejection drugs for six hours and leave and do it all over again the next day. Pretty boring. Netflix online has been my best friend I am currently starting season 3 of The Office. Last time I had to stay in the hospital it was a 24 hour queer eye for the straight guy marathon that got me so I always find something fun to watch.

Tara and I see this as a bump in the road. The good thing is my overall health has improved. I can now eat what I want which is something I haven't been able to do for two years. Its amazing how much I missed milk and yogurt. And I feel terrific! They tell me that will change if I dont deal with this rejection so I just nod my head and let these unbelievably smart people make all the decisions for me. I have said this before but I couldn't imagine a place greater than this to have it done. I have never met more people who genuinely care about the people that they are dealing with. My kidney doctor gave me his personal cell phone number and said call him anytime, I couldnt believe it. My kidney doctor in Maui doesnt ever call me back in the same day. This guy in MN sees tons of people a day. Im sure he doesnt give all this patients his cell number so Tara and I were really impressed. We have been spoiling everyone with chocolates and hawaiian coffee so we got on their good side early.

Anyway thats where we are now. We look forward to seeing our dog, our roomate, and all our Maui family hopefully within the next few weeks. We are really starting to miss everyone and we just want to wake up in our own bed, go to work, go to the beach, all the normal stuff we used to do. We are tired of strange beds and especially the weather. It was 5 degrees this morning on the way to the hospital. FUN!!

We love you all. See you soon.

Lee and Tara.

We will probably be close to tears when we set foot back in Maui because that will mean that hopefully the worst will be behind us and we can resume life as we used to.

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!!