Sunday, August 25, 2013

Shortest Update

   I really suck. I have been so busy that I've just kind of been living in my own world. Not to mention that I come home from work and I either get sucked into my IPad playing Mystery Manor or I just fall asleep. I have been working overtime for months now and it is only now starting to lighten up. Kind of.
   Well, Lois just had her surgery and is recuperating. Third times a charm, we hope. She is on a liquid diet for the next two weeks. She spent two and a half days in the hospital and is still very sore and struggling with nausea.
   My children started back at school. Too early to tell how things will go. I think they were ready to go back and see their friends
   I have been doing fine. My labs have been looking good. It has been almost a year and a half now since my transplant. Unbelievable. I still find myself thinking back on the days when I would stare blankly; lost and confused when the encephalopathy would take hold. Those moments are haunting.
   Today I am grateful. I am thoughtful. I am generous. I am happy. 

Wednesday, March 20, 2013

Life, one year later

  Well, it has been a couple of months now since my last update. I left off last January talking about Lois' endoscopy and my upcoming liver biopsy. We received the endoscopy results and things looked just as bad as we suspected.  Apparently the knot that the doctor tied during her last surgery has slipped again and we are going to have to reschedule another surgery. The problem with that is, the first surgery should have been a one time deal. Two surgeries are rare and a second one always complicates things because of scar tissue in the esophagus, creating a blockage in an area where a blockage is being repaired.  A third surgery is unheard of, so now we are kind of at a crossroads. We need to find a surgeon who is capable and willing to perform the surgery. They also found signs of dysplasia.
   This news has left us feeling a little despondent. The complexities of this situation are a bit overwhelming, so please, please keep Lois in your prayers.
   My liver biopsy and ultrasound showed a little liver rejection and a slight sign of inflammation, but that was remedied by my having my cyclosporine dosage raised. The numbers from my last labs evened things out.
   The biggest news this month was the celebration of my one year anniversary. I can't believe it has already been a year since my transplant.
   I think of the years that passed by one after another; the months that were marked by moons, and the days that I followed one by one. Every one of them so different from the other. I remember how I felt each and every day. I remember clinging to every moment. I remember leaving my nightlight on every time I went to bed because I was afraid to go sleep. It is impossible to describe all these things to you because there was just so much happening. And I remember the night I got that phone call.
   The phone rang at 12:15. I half expected what it was. And it didn't surprise me when they told me who it was. All the while, my mind grappling with the thought that someone lost their life. A mother and father lost a son or daughter. Maybe siblings sat somewhere crying over their loved one. These thoughts still confound me.
   I am thankful for this gift of life. And I can't even begin to describe this feeling that flows through me when I think about it all. I am forever grateful to my donor.
   Lois wrote a column about it for the newspaper and it ended up on the Donate Life site. Check it out here:

Monday, January 28, 2013


   The girls all went shopping on Sunday and came home with this.

   This is Eliza. I think we just call her Lizzy. She is sweet. She is curled up next to me right now and I guess I'll be watching her on my days off. Isn't house training grand? I guess one thing I have to look forward to is small messes. So far she has been pretty good.
   Everything around here is somewhat normal. Lois has an endoscopy on Wednesday. We are praying for good results. The Barrett's disease has been causing her problems. Please keep her in your thoughts and prayers.
    My MRI turned out normal. So that happened. I still get the headaches. I guess as long as I am on the cyclosporine I will be susceptible to headaches. That being for the rest of my life. Even if they switch me back to prograf I may even have the same problem. Hard to tell. 
   I'm not sure what happened to noise in my head. It kind of subsided.  No more word on trying to cure the hep-c. I think they are going to keep me where I'm at unless I develop problems. I have another biopsy this March.
   Well, this is it for now. Hope everyone is doing well and staying warm.

Wednesday, January 2, 2013

A new day

   I hope everyone had a great holiday. We are all doing well and spent the holiday visiting family and friends. I figured I should probably update now that it's a new year and all.
   I have been doing okay. I am still getting headaches. The transplant team say it is the anti-rejection drugs. But that doesn't really explain the noises I've been hearing in my head. Nobody seems to have any idea what that's all about. I finally saw my G.P. and he sent me to get an MRI on Monday. I should know more come Thursday or Friday. Unfortunately, I went in with a massive sinus infection so I hope that doesn't screw up any results when they look things over.
   This morning Lois took me to a podiatrist to have a needle jammed into my middle toe. That happened. I have had a swollen middle toe for the last month or so and apparently I have been supporting my weight on that one toe because it has curled sideways. This is because of arthritis and a short tendon. The needle is supposed to release the tendon and make it go flat, rather than hold in the position it has been held in for so long. The needle didn't hurt at all, but the needle that delivered the numbing medication hurt like an S.O.B. I have to keep it taped for a week and then it should be fine. I hope so anyway. We would like to avoid any kind of surgery.
   It has almost been a year now since my transplant. I'm still shy by a couple of months, but it is still hard to believe. I wake each day mindful of how hard it used to be to get out of bed in the mornings. I see pictures of myself and I can't believe how awful I looked. My body was so colorless and I was swollen and puffy and pretty much a wreck. I still have a hard time thinking about all that transpired. The other day I was at work and I kept remembering a particular day when I had slipped into my delirium and was just lost. I had no clue what I was doing, but I was trying my hardest to perform my job. I called Lois to come help me and I forgot a whole day. I had a couple of those days but I always managed to come back. The encephalopathy was so tremendous at times I wondered why I was still even working. It is amazing that I was able to hold out until the day that I got the call. I don't think I could have held on much longer.
   Lois and I both know people who have lost their loved ones while waiting on the list. It is sad to think about. To know what a fine line that is to live on. It is hard to grasp the knowledge of how we take so much in life for granted. To think of illness in general and all that can come from it. To think of how so many lives can be affected. I will forever be a changed man because of this. And I will always feel indebted to my donor in only a way that I can personally understand.
   I thank all of you for being with me during this part of my life and helping me through what is probably one of the most difficult times of my life. My best wishes to each and every one of you and may you all have a beautiful new year.

   For all times and seasons, Beaux.