My Honest Truth

My faith is being tested and I'm scared, I'm concerned, I'm angry, I'm frustrated, I'm not sure what to do. I try my best to be positive and optimistic about life and what I am going through. I have had 2 kidney transplants, I am on dialysis for the second time, I have had seizures and countless surgeries. My faith is being tested because I am still waiting to hear if I will be allowed a 3rd kidney transplant. I wish dialysis never existed, I wish nephrologists never existed, I wish kidney failure never existed - I'm scared. I have support from my family and my friends which I am so very thankful for, however, sometimes it is a burden. I feel that I always have to be positive but the truth is, there are times by myself I break down and I feel like I am letting people down. I struggle when people say that I am an inspiration to them for my attitude towards what I am going thru. With social networks these days and everyone posting everything about everything, I get caught up in posting the good things in my life - I'm guilty. My honest truth is that I HATE dialysis, I HATE how I feel after my dialysis treatment, I HATE that my family has to make sacrifices for me, I HATE that I have to take medicine everyday, I HATE that I have to watch the food that I eat and monitor the fluid I drink. This is a part of my life and although I have accepted it and live with it - I HATE IT!! After my second transplant, I was coming home from a work conference and admitted to a colleague that I wasn't sure if I would ever do dialysis again. I felt comfortable confiding in her because she had also been through what I have been through; dialysis, 2 kidney transplants etc. Now I am on dialysis again with the hope of the approval of getting back on the transplant list for a 3rd time - I'm concerned. The thought of living on dialysis the rest of my life is hard for me. I know I can do it however I'm not sure I want to. I have a beautiful and supportive wife and 2 wonderful children and I struggle with what they are going trough for me. I feel selfish with my thoughts that if I were to stop dialysis treatments. Is it the right thing to do? For my children to grow up without me, for my wife to have to raise them without me, I'm selfish - I'm not what to do. I pray for the approval for a 3rd transplant and put this behind me. I'm not looking for sympathy, I just want to be honest. My faith is being tested and I'm scared. I'm angry and frustrated that I have to go through this again. I'm not giving up and that is My Honest Truth.

A quick update

Morgan and I had our first post-op check-up yesterday. In normal Doctor office fashion, if you're not the first one seen, you have a wait. I've grown patient with doctors when they are running behind - after all I prefer my doctor gives the proper attention to his/her patients rather than rush through things and something gets missed. The wait wasn't long only about 10 min. and Dr. Rajab came in with a big smile on his face. This was the first time I was meeting him, but Torre exchanged hello's like they've been long time friends. He even took time to chat with Tuck and ask if he was going to be a doctor some day. All things being what they are, Dr. Rajab is very satisfied with they way things are going. He was telling me the person who received the other kidney had to endure more dialysis and that his transplant was just now starting to work 5 weeks later. Since I have been through this before and understand the levels and functions when I see my bloodwork results I get a little cautious - but have resigned to the attitude if they are happy with where things are - then so am I! The best news actually was not that I got my staples out and actually did not even come when I saw him, it came later in the day when I checked the result of my bloodwork and saw my creatinine was the lowest since 2009 at 2.35. So I think we are definitely on our way :-D

My Journey has just begun!

I enjoy reading and using quotes whenever I get the chance - "Today is the first day of the rest of my life". Well not today, that day would have been January 19th 2013, but you get the picture. I thought the day I was transplanted would have been the end of my journey but as I reflect - it really was the beginning. When I think about it so much has happened over the past 3 years that the old me would have thought it was the end. There were a lot of sacrifices made over that time, not only by me but by those around me, especially my wife and children. I had seizures that probably would not have happened if I was not on dialysis. I turned inward as a defense mechanism to deal with things the way I knew I could handle them, possibly changing relationships forever. Like I said, the old me probably would have thought that journey had ended. I have grown too much in that time to think that way any more, instead I believe it is just the beginning!! I was never on dialysis for my first transplant I never knew what that was like, maybe I took things for granted. I'm sure about this though, I am so very thankful for both of my heroes and their decision to give the gift of life!! I want to end this as I began it, with a quote, "the longest journey begins with a single step".

The Back-Up

My phone wrang and I wish I could have seen the expression on my face. When I answered, it was my transplant coordinator, explaining I was the back-up for a transplant. During the transplant process they call a couple of people at the same time, one being the primary and at least one as the back-up. After I hung up, my day went on as normal, after all I was the back-up. Later that evening during date night with Torre the phone wrang and it was a number I did not recognize, and it was a different transplant coordinator explaining that for some reason the primary person did not work out and they were calling me in for transplant. The moment was surreal and I was calm, probably one of the most calm moments I have ever had in my life and there was a flurry of notifying people of what was going on. After Sara got to our house to be with Mari and Tuck, Torre and I headed out to pick up her mom Carol. We got to the hospital in a leisurely manner and things were underway. For my last transplant things seemed to move much faster so my expectation was the same for this one. Things started to pick-up around 8 am when the Doctor came in to place my central line and all of a sudden my surgery time was moved up from 2:30 pm to 9:00 am. The only problem with that was I didn't get to see Torre before heading to the OR. I remember getting on the operating table and that was about it for the rest of the day. The prayers and support I have received have been very humbling not only for me but for my wife and children too. Torre and I always talk about "it takes a village" and to see and feel the love from my village is overwhelmingly AWESOME!!

Happy New Year!!

It would be easy to say I'm glad 2012 is coming to a close and I'm ready for 2013 to begin. I said that last year and to be honest I did not give credit to 2011 and all the good things that happened that year. 2011 was a tough year and looking back on 2012 it was also a tough year, but many good things happened in both years as well! I've grown so much as a person in both years and my entire thought process is perception. I have a lot of things to look forward to in 2013 but I try really hard to live in the moment. This year I have had the opportunity to be with my family and do things most people do not get to do. We went on our first family vacation to Disney World and the kids and I continued our annual camping trip on Father's day weekend with the Harr's. We even got Torre to go on her first tent camping experience with Kientz on Bald Eagle. 2013 is going to be a great year for me and 2014 will be even better and 2015 better yet. Not because bad things will happen or things will not be tough, they will be, but because it is how I will respond to them. I have learned from my tough experiences and that is why things will be better. Like the saying "it's not how many times you get knocked down but how many times you get up" I have gotten up every time! I have learned every time and most important I have appreciated every experience. In my opinion, if something happens that is difficult it is easier to look at it in a negative way, and harder to find something positive - my goal is to find the positive! In 2013 my resolution is to find the positive in every situation and to treat everyone in a respectful manner. I have been grumpy and tired and frustrated way to much recently and that is not fair to my family, friends and people that I don't even know. I have many things to look forward to in 2013 and there will be many new beginnings to look forward to. I will get my kidney transplant and I will begin a new career path. I will be happier and cherish the relationships that I have and the new relationships that begin. I will be more involved in my community and get out more - I will not retreat inward any more. I will communicate more effectively with my wife, children and friends. This will make 2013 even better than any other year. 2011 was a good year and I learned a lot, 2012 was a better year because I learned even more. I will make 2013 better and every year after even better, not because tough things will not happen but rather I will get up every time I fall down. Happy New Year to my family, friends and everyone - may god bless you all!!!

A New Found Family

It has been well over a year since I have posted in my blog and I am glad to say my inspiration for this post is my beautiful wife, Torre. To say nothing has happened in that time would not be an accurate statement - a lot has happened. I am not going to try and catch you up, maybe another day. I will however update you regarding my dialysis and transplant status. February 2013 I will be on the transplant list for 3 years and I still have not heard anything, but I am prepared for the day the call comes. With dialysis, it has been a journey. For my last transplant I was never on dialysis so this time around things have definitely been different. In the beginning, I had a pretty good attitude, now things feel like the movie "Groundhog Day". Waking up at 4AM to get there on time after going to bed at 1AM I'm pretty much in a daze the rest of the day. I don't want to go to bed that late, but my body does not let me sleep before then. I have moved into a resentment phase of dialysis and I am really ready for transplant, if only they would just call... Don't get me wrong there are things that help me get through my treatments so they are not too bad. I would say the number 1 thing are the nurses and techs at my center. They are family to me and take really good care of me. It is noticeable with their care and concerns of me. Hopefully I will not take as long to post again, but for now I will say goodbye until next time!!

He gets it!!

I would guess that he was in his early 20's and seemed to be some type of a shift manager. Maybe an assistant manager, but seemed to be a pretty bright guy and very welcoming. I had gone into the "Wendy's" for an Oreo twisted frosty and he was the one that greeted me.

I decided to go into the store rather than going through the drive-thru because I had a somewhat unusual request. When I place my order I also asked for a small coke, but I wanted the cup to be full of ice and only a quarter the way filled with coke. Since I am limited with my fluid intake and chewing ice helps with my frequent thirst I find it kills 2 birds with 1 stone :)

After I over-explained my restraints on fluids and he gave his apologies of having to charge me for the full cup he decided to give me a medium cup with my request and charged me for a small. He started to turn away and then said "Only 32 ounces? how do you do it" and then grabbed a large cup and said "this is 40 ounces - this is more than a full day of fluid for you, I drink 1 of these each meal"

It has been a while since I have had that feeling. The feeling of someone actually understanding what it is like to have a limitation out of their control. People going through the limitations understand what it is like, but I have found very few people who actually get it that are not going through it - I guess it is the small things in life!!