HELLO THERE

   I haven't been here for almost a year and a half. 
   For my old friends, yes, I'm still alive.
   A lot has happened in our family within this time. Yesterday my oldest daughter had brain surgery. Last week she graduated from high school. Her summer will be spent recuperating. 
   My youngest is and has been working for the past several months. She is going to Guatemala in two weeks for two weeks. 
   I responded well to the new Hep-C treatment and I am viral free. I am healthy. 
   My wife continues to struggle with her esophagus problems. We haven't found any promise on this front. Surgery is often useless and the quick cure usually involves an endoscopy.
   We remain strong and continue to forge through all that we confront. We are blessed to have so many friends.
   If you recall I was adopted and I was searching for my family. I have found them. Fifty years after my adoption I was reunited with my mother, three brothers, two sisters and many relatives. I am uncle to dozens of children. The story is fascinating, much too long to explain in simple sentences.
   I stop only to write these things because I just happened to stumble across this blog. I have been gone for a very long time. I hope to visit again. Soon. The memory of this place brings back that old familiarity. Recently friends have reached out to me and so I felt drawn to return.
   Say a prayer for my daughter. 
   Be healthy. Be happy. Be strong.

Just Around the Corner...

   ...there's a rainbow in the sky.
   Hello there. Again I must apologize for the long lapse. Work has been a big part of this and laziness I suppose. I come home tired and do other things. I guess we all prioritize are time differently.
   I have news I wanted to share and I get emails asking how I'm doing. I thought it was probably time to write a quick post.
   I have two things important in my life that are happening these days. The first is that my transplant clinic is going to try treating my Hep-C with one of the new drugs that was approved this year. The drug is called Sofosbuvir and it has a 90% cure rate. We are still a ways out on this and have to see what happens with my insurance. My clinic is also exploring another avenue with a clinic trial using another regimen of drugs. It too looks promising.
   We are excited about this and have been waiting for the past year for some of these new drugs that are just now coming out. Keep your fingers crossed.
   The second thing is unbelievable and amazing. I've touched on this subject before, so some of you may be familiar with what I'm about to say. After years of searching for my birth parents for many years, I was contacted by a cousin last week. This past week has been very emotional and overwhelming. It is hard to describe. Everything that has transpired has been incredible. And fast. 
   Steps that we have taken in the past couple of months have made this possible, and while I'm not going to go into detail right now, these steps have led up to this. This dream and long time yearning has put me in a place that I thought I'd never see.
   We are talking back and forth through emails right now with my cousin, and I have learned that my mom is still alive, but we are taking baby steps; all of us treading thru unfamiliar territory. This week my cousins husband is coming here for a conference and we are going to get together and share information. We have no idea what the future will bring us, but just knowing I have family has lifted a weight off my heart. I may never meet my mom, or my siblings, and I'm alright with that. I'm just going to see what comes our way. Right now it's just one day at a time.
   I can't begin to thank so many of you who have been by my side over the past few years. Bless you all. And I hope everyone is doing well.

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. 

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:
http://donatelife-organdonation.blogspot.com/2013/03/in-death-organ-donor-saved-my-family.html

Lizzy

   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.

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.

Zapped

   A month or so before my transplant I was starting to get worried. Well...I was worried. I was overwhelmed by the fact that time had ravaged my body and was working on my spirit.
   Lois kept assuring me that everything was going to be all right. And so, I would smile and say, "I know it."
   But I didn't know it. I just knew in my heart that I was worried and so was she. Time was wearing thin, and it wasn't being kind. So, we kind of went through a stage of pretending and thinking deep down that maybe this wasn't going to happen after all. Those were the things that filtered through our minds.
   Recently we have talked a little about it. Sharing the fact that we both had our doubts and admitting to being powerless. The only thing we could do was give it to God. On some level, I was secretly tidying up things that I thought were important for me to do. It wasn't much, but to me it meant throwing away a few things that seemed like clutter. Why was I holding on to this stuff anyway? The truth was, I was going out of my mind.
   A month or so before my transplant I finally asked for some help. My doctor said he could give me some anti-depressants to help me out. I noticed the change almost immediately. I was more relaxed, but what I noticed the most was that the stress had dropped considerably. This would have been back in January. I had pretty much forgotten about the pills until after my transplant. I knew I was still taking them but I had not given them much thought. The doctors seemed to feel that I would do better if I were to stay on them for a while as my body adjusted and healed. I didn't have a problem with that.
   Fast forward to about a month ago. I went to my last clinic visit and I asked if I could drop the anti-depressant. My meds have changed a lot in the past several months and I was down to taking my anti-rejection meds and vitamins. I didn't feel like there was any need to stay on the anti-depressants. They weaned me by cutting the dosage in half and I took them for another two weeks and then stopped. If you've ever been on anti-depressants and have stopped, then you might understand where I'm going with this. Serious withdrawal symptoms. Mind-altering effects.
   I have had severe headaches, dizziness and some sort of brain zaps that just won't stop. I turn my head and I can feel a million synapses firing. There is a cacophony of noise in my head. I figured it would stop soon, but it is still going on almost a month later. It is not as intense as it was so I assume it is getting better. I had similar symptoms to this when I first had my transplant. Every time I got out of bed and walked to the bathroom I felt massively dizzy with these same sparks flying inside my head.
   I cannot imagine having to live like this for very long. I think it would drive me crazy. The noise I hear now inside my head sounds like a salt shaker shaking up and down when I turn my head too sharply. It is light and fading, but I still get headaches and they can be very annoying. I'd give anything for them to go away. I can handle the noise inside my head, but the aches hurt.
   I guess these are small problems now compared to before. I am feeling stronger. I have noticed that my night sweats have disappeared so maybe that was just the drugs too. I'm happy to have them gone.

   Wishing everyone well. Happy Thanksgiving. I probably don't have to mention what I'm thankful for.

Thinking of You

   I have written numerous post over the last several months and have scratched them all. Tonight I logged on to write and I skimmed over my last post and realized that it is the exact same thing that I have been trying to write all along. I guess not a lot has changed over the months. 
   I hope everybody else out there is doing well. I am still working on getting into the swing of things. I am feeling much better. I am back to work full time and doing well. I may not be blogging much, but I still do read through blogs once in a while. I guess I need to make the rounds and say hi to everyone. I feel like a heel for not writing sooner. I promise I will try harder. 
   Until next time, my deepest love to all of you. Thanks for always being there and helping to hold me up when I was down. 

Coming back to being me

   This is long overdue and I must apologize for the long delay. At first I didn't write because I felt miserable and as time moved forward I kept saying I'll do it a little later. But later turned into weeks and those all turned into months. And then there was the whole thing of not having a computer to write with because I had a dead battery — and still do. The danged thing dropped dead the day after I got home from the hospital. So ... this is my apology.
   I think the real reason goes much deeper. The sense of wanting to write or needing to write had vanished. The words were in my head but I couldn't get them down on paper. It is taking me some time to gain some clarity. There was, after all, the physical aftermath, which was probably just as hard as the mental and emotional aspect of it all. I'm gaining ground on this each day.
   It is nice to recognize that I have approached some normalcy in my life, that I feel better physically and mentally and that I now have some sort of purpose and direction. After 3-plus years I finally got up on my roof and remove the sad, faded Christmas lights that have haunted me over time. They were a reminder to me each day I looked at them that I had no strength left in me. I have started cleaning out my garage and even contemplated fixing  the flat tires on all the bikes. There are a whole slew of things that have been neglected and I am finally able to do something about it.

   I am however still biding time. This healing thing is still not over. I have another mountain to cross further down the line. In the meanwhile, I am just going with my gut and following my heart. I am recognizing what is most precious: my family and my friends, my work and the world and God.
— Beaux
 

The worst updater ever...

Okay, first a confession: I may be the worst person ever to leave in charge of your blog while you're sick. I don't take care of it.

That's sad. What's not sad is that Beaux is doing quite well, although he still doesn't feel great. He's clear as can be mentally and even beginning to work a few hours a week. I married a really strong-spirited man.

He also looks great, although he still has the Bell's palsy a little. The difference in him facially since the transplant is astonishing.

But it continues to be an interesting and sometimes peculiar journey. Allow me to share my FB status update:

"File this under kind of funny: When insurance changed a few years ago, we fought to open Beaux's adoption records to see if we would be able to access an anti-rejection drug through his birth tribe. Got the records open and ended up with four parents instead of two, so couldn't tie him to his tribe. (Still trying to figure that out). Went the rounds and finally gained access to the medication. Waited and waited and waited some more to get the transplant. Got it. Now here's the punchline: The drug doesn't work well for him. They're switching him to the old generic one the insurance company always liked. (If that doesn't work, we're in trouble, but I'm betting it will).  What a weird exercise. If everything happens for a reason, I'm stumped."

On the bright side, if they change my insurance again, it won't matter on that one score.

I hope Beaux will be blogging again soon. Fingers crossed.

Life is complicated

(Past) Time for an update.
The doctors think Beaux may have CMV (Cytomegalovirus). Most of us carry it around with us by the time we’re 40, but dormant. In normal folks, it seldom needs treatment. It causes cold sores and strep, mono, etc. In people who’ve had a liver transplant, it can get into the muscle and become life-threatening. But they had his coumadin way too high and the only way to know for sure is to get a biopsy — which they can’t do until the blood level is down early next week. Tomorrow, they’ll call and let us know when they’ll scope him. At this stage, he’s not gaining ground. He's not deathly ill or anything, but whatever this is is certainly a set back and we need it solved.
He's still walking a mile a day, which is great. But it's harder than it should be right now. Hold good thoughts.
Lois

Sorry I've been so slow to update

As you can see, updating someone else's blog is not my forte. I've been swamped. And, frankly, there hasn't been much to report. That, in a way, is good news.
Beaux continues to heal slowly. He's still plagued by soreness in his abdomen. I can't say anyone's surprised, given the magnitude of the incision. And the transplant coordinator said when they got in there, the surgeons found a lot of scar tissue that had to be dealt with from a bicycle accident and subsequent surgery when he was a little boy. The handlebar perforated his small bowel and apparently the scars from that clean-up operation left their mark. That's part of why he's hurting; it was more extensive cutting than one might have expected even from a wildly invasive operation like a liver transplant.
But the liver itself is wonderful. Works beautifully and we are so pleased.
They have reduced his anti-rejection meds to the stage where the tremors are much less of an issue. One side effect of all the drugs, though, has been quite odd. By evening, he's got a waxy glow about him. His oil glands are going nuts, so he's now on prescription to slow that down a bit.
I'll update again, soon. And I promise if something arises, I'll post right away. In this case, no news really is good news.
Lo

Staples out, steri strips on!

They took the staples out yesterday, though there are still a couple of raw spots. The surgeons said on paper he looks great, though they're still adjusting the anti-rejection meds. He's still in quite a bit of pain and the tremors are astonishing. Apparently, that happens with too much anti-rejection medicine, though he's on quite a low dose (The wallet is grateful).
He's lost a lot of weight he really didn't have to lose. With the major incision and no appetite, feeding him is a challenge. Sigh. But we're working on it. And he remains the loveliest of people. So thrilled that he's moved from "dying" to "recovering from major surgery."
One funny side effect of all this: He now babbles in his sleep. The tremors and the talking make for quite a night's sleep. Not.
Life is good.

Food and trembling

We have settled into a very unroutine (for us) routine. Mondays, Wednesdays and Fridays, he has to be at the lab at 7 a.m. for a blood draw so they can see what his antirejection drug levels are at their very lowest point. After that, he takes the Prograf and a dozen other pills. Every day, so far, we've been called with an adjustment before the evening dose. He consistently gets too much. The result of that is headaches (diminishing) and trembling that is unbelievable. It shakes the bed as much as a small child bouncing on it would. I can't even describe it. Wow. That's a sign of too much drug and reaction to it -- both will diminish over time, we're told. But it's startling. And that many tremors also burns a lot of calories, so his needs as he heals are high. Just to maintain his weight (and we're not, he's losing) requires about 3600 calories a day. Yikes. That's a lot of food to stuff down a man who has no appetite. Fortunately, I'm not feeling called upon to match him bite for bite.
When he was diagnosed, I instantly packed on 30 pounds. My doctor said they were stress pounds — "your body thinks it's winter and that's what it calculates it needs to survive" — and would not leave until he got a transplant. I snickered. The week after transplant, I was within 7 pounds of my pre-diagnosis weight. It's odd to drop the equivalent of a large bag of potatoes without doing anything. Sadly, though, he's dropping weight, too, which is a not a good thing for getting healthy in his case.
We went for a walk today. About a half mile or better. It taxed him; sidewalks are different than hospital hallways. But he did it willingly.
And spring is blooming, which matches what's in my heart.
New life.
Cheers,
Lo

Woot!

We are home! There are no words to describe being home, on the other side of the transplant. Yay!
And the cat, who has been glaring at me and avoiding me since Beaux was called to the hospital, is now curled again at my side, my apparent best friend.
It appears I was the main suspect in the homeowner's disappearance. The cat suspected foul play.
Beaux's tired, but settled in nicely on his reclining couch, tickling Tiger with his fingertips. We have some challenges ahead, but this just feels marvelous to me.
This is a good day. March might even become my favorite month. And the hyacinths are blooming in the front yard!

Still here

Not much new. They were going to do a biopsy of the liver -- were at the stage of discharging the little "gun" that takes a sliver of liver — when his blood clotting factors decided to go therapeutic. That meant it could bleed, so they scrubbed the biopsy.
Immediately, the blood INR dropped back into the sub-therapeutic range. Don't even know what to make of that. It's very odd. So we're still hanging out in the hospital. Waiting and wondering.
It's beautiful outside and I'm pining to get out in the garden. Maybe I'll take up gardening here.
Beaux's feeling a little stronger every day. I think happiness will come with being home.

Still hanging out in 1021

We're still here at Intermountain, waiting for the all-clear so we can go home. They are having a hard time getting his blood thinner in therapeutic range. The pharm student said it looks like the new liver might be a little coumadin resistant. And they did a CT and found a "small" infection in the liver transplant site in his abdomen. So he's on antibiotics. Glad they found that before we went home.
Still sore, still tired, still thrilled to be here on the back side of the transplant process. We appreciate all the love and caring that have been expressed in person and online. We've had a great team of doctors and that certainly helps.
On a less medical note, the animals are convinced I gave Beaux away, I think. The big fat cat, Tiger, who used to love me more than life, glares at me balefully when I wander home. You can hear the wheels turn in his head: Brought in that huge puppy, got a new kitten, shipped Daddy off somewhere unknown. What is her deal?
Beaux's getting stronger, though, and that's all that matters.

Yo-yo

It has been a bit up and down the last few days. Beaux has been plagued by a couple of mystery headaches that are likely caused by meds, but they are not quite sure what. This morning, though, after that was controlled, he made five laps around the floor, which is equal to a half mile. This time, he did it without a walker.

He looks great, though it still hurts. And his new liver is doing great. I lack the words to express my gratitude to the donor family that in its grief saved my husband. I hear rumors of a new transplant later today and will pray and hope for those families as well.

Ouch and yum

I took a day off yesterday from updates. Sorry. Lots to do. We had some drug education time with the pharmacy team to prepare us for the medicinal arsenal we'll be employing in the very near future.
Beaux's still doing very well. He looks amazing, although he feels quite miserable. It's hard to define the changes, but he looks like himself again. Still, the pain is quite severe and he's battling a little nausea.
He said especially to thank you for all the nice notes and encouragement. It buoys him.
Today, they're working on changing his pain management from pump to pills and getting him on more solid food. Over the last week, he has had a grand total of two juices, two jellos and one lovely Italian ice. And all the ice chips he can fit on the head of a miniscule spoon.
More later, friends,
Lo

Ouch!

Sunday was a rough day, with lots of pain. He did his two laps around the floor, slowly, but spent most of the day being pretty quiet and a bit grim-faced. Still, his numbers are astonishingly good. The liver is functioning very well and no one can be surprised that it hurts at this stage.
Spent the night with alarms going off (he's on a million medications right now, so it makes sense one of them was always running out). I got pretty good at staggering to his bedside, pushing the nurse's button and stumbling back to bed.
This morning the weather is beautiful, he's already had his first walk and he's sitting in the chair. It's going to be a more upbeat day. I can see that already.
What a gift!

Leaving ICU

He made two laps around the shock trauma- unit and to celebrate, the surgeon -signed orders to send him to a regular room on the transplant floor. So the nurse has been pulling lines and he has a new one that replaces two major lines in his neck. They are very impressed with the liver. His enzymes are normal and, unlike everyone at this stage, he doesn't need insulin because the liver is doing all its work. All I can say is my jaw hurts from grinning. This has been the best week ever. More later.

We have a new liver

I will keep this short and sweet because I'm tired.
The backup call turned into the real deal at 2 p.m. Thursday. And 12 hours later, I stood in the ICU and looked at my beautiful, battered sleeping husband, who had just undergone a liver transplant.
It's early days and it would be presumptive to assume clear sailing. But he now has a shot at life.
I cannot express how sorry I am for the donor's family, whoever they are. And how much I will always thank God for their generosity.
Lois

At the hospital waiting

We got the back-up call last night a bit after midnight. I'm stunned how calm Beaux was, asking where to go and when to get there. Now we're waiting to see if the liver will go to its intended recipient or if we get it instead.
We don't begrudge the intended recipient at all. It would be really, really difficult to get that call and then go to the hospital and have the liver go to someone else. We'll wait our turn, if it would please just hurry.
It has been an interesting dress rehearsal. Lots of tests -- blood, x-ray, heart monitor -- and so far we're still in the game, which bodes well for when the real day comes. Please let it be soon.
We've met all the surgeons now, as well.
Lois

Dreaming of Anesthesia

   I haven't fired up my laptop for more than a week. Thank you to those who left emails and comments, they always make me feel good.
   I have been feeling somewhat disconnected these last two weeks. I had my MELD done last week and I jumped up from 18 to 25. This week I went up another point. I can't even begin to describe the emotions I am going through. It has been more than three and a half years since this started. I am tired and I am sore and I am overwhelmed each day with this and that. It is likely that I'll get the call sometime soon if my numbers continue to stay above 25.
   I am crossing my fingers and waiting.

Vulnerble

   Today I had my liver clinic appointment. This happens every few months to check on my health, diet, moods and basically my physical and mental status. As we were ready to wrap things up I confided that I have been a bit overwhelmed with all that has happened in the last month or so. I suddenly found myself choking back tears and realized just how much of an emotional roller coaster I have been on. As we talked, tears started to fall. I had no idea how much I have been holding in. I was reminded that it has almost been 4 years since this began. The fact that I was still holding it together and still working was by their standards pretty amazing and the transplant team recognized this. They ask me this question at every clinic, "Are you still working?" I tell them yes and they always give me a wow. "That's great."
   I left clinic feeling a bit spent. I was somewhat moved by the experience I had just had and I realized how easy it is to ignore some of the things in life when maybe we should be embracing them. I think I have a lot to work through, but I am grateful that I recognize it.
   Sleep well, everybody.