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.
Monday, January 19, 2009
Wednesday, January 14, 2009
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
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
Wednesday, January 7, 2009
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.
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.
Monday, January 5, 2009
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.
Keep our fingers crossed for improvements tomorrow. Aloha.
Saturday, January 3, 2009
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.
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.
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