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.

Happy Birthday to Me

   No cancer! The doctor wasn't able to take a biopsy though because he couldn't reach it. He did feel comfortable enough to say he didn't think it was anything. I was out for quite a while and was very groggy waking up. Lois and I celebrated by going home and taking a nap. We decided to hit the local rec center later and went to soak our tired bodies in the hot tub. I started feeling really sick after about 15 minutes. I don't know if it was the hot water or what, but I was very nauseous.

   I am happy with the news.

Pins and Needles

   I have my Endoscopic Ultrasound tomorrow. Hopefully I will learn what I need to know before I go home. I understand that if it doesn't look threatening, than the doctor will be able to tell me right then. But, if they have to do a biopsy I may have to wait another week.
   This past week has moved by slowly. Once again we have been on pins and needles. Waiting to have this test done kept us on edge for three weeks and when it was cancelled I still felt it wasn't over. That nagging feeling proved right when my coordinator called later in the week only to tell us that there had been an awful mistake and that we would have to take the test after all. We have had to wait another 11 days and I have allowed myself to feel disconnected. I am certain that it has been some protective mechanism to keep me from going insane. The test results teeter between devastating and miraculous news. I will know when I see the expression on Lois' face. I am looking forward to seeing a bright smile.

Looks like we're going to have to do this thing after all.

The cancelled test is back on the calendar. Cancel the all-clear on the pancreatic question.
Oh, that's right. The hospital cancelled the all-clear.
I was never very comfortable with this EUS (Endoscopic Ultra Sound) cancellation. I had even pressed my transplant coordinator as to what the deal was. For instance, there was a conversation between the EUS specialist and one of my other transplant doctors discussing my CT scans and they agreed that the findings didn't warrant any further testing. But the transplant doctor I usually see was sure we should be certain. I found myself wanting a definitive answer, but Lois was just happy it wasn't pancreatic cancer. And after we discussed it, we decided we'd feel blessed and move on.
Not so fast. The transplant coordinator called yesterday, but we were out getting Jeni a kitten. Today, she finally reached me with the news: The radiologist who decided we didn't need the specialized test we waited three weeks for had not actually seen the right CT report. The decision was based on incomplete information. When the coordinator tried to track down how the entire thing came about, the original transplant doctor who wanted the scan done had a Eureka! moment and suggested they weren't considering the complete report.
He nailed it.
So, this time, we only wait 11 more days because they decided to get us in "right away."
It's slated for my birthday. I'll either get a really great present -- a cancer all clear -- or it will be a birthday I never forget. For all the wrong reasons.
Lois cried. I'm actually kind of relieved. Not that she cried, but because now we'll know.
                                                                                                        

1/11/2012

    After three weeks of worrying about this spot on my CT scan, I was informed that the procedure had been cancelled. The specialist reviewed my scans and said he didn't see any need to do it because it would be a waste of time and money. They are all but certain it's not cancerous. I was a bit shocked, but I'll take it. I only wish the doctor would have reviewed these scans earlier and saved me some grief. Needless to say, we are all excited about this recent development. I also learned yesterday that my MELD score went back up the night I spent in the hospital. It is now 22.

   Today I looked at the UNOS website and found out that I am now among the top ten people listed at my transplant center. There are 2 people in the highest category and 8 in mine. This brought me chills. It is both exciting and frightening. Suddenly everything seems surreal.

The Calm Before The Storm

   Yesterday I experienced one of the worst days of my life. I pray that it never happens again:
   I am looking through my family's eyes and I shrink in abhorrence. I see fear and sadness. There is also forgiveness and even a few laughs.  Nonetheless, my yesterday resulted in a ride to the hospital in the back of an ambulance that has forever changed my perspective of hepatic encephalopathy. The ambulance crew had to rehydrate me on the way to the hospital and I spent the night drinking Lactulose. As some may remember, Lactulose is the medicine that expels the ammonia from the body by diarrhea. When the liver can no longer do it on its own, the ammonia finds its way to the brain and you experience certain mood swings. There can be hallucination and disorientation and perhaps the worst one is being argumentative. I get that way. I had slipped beyond the sane to the insane.
   I had turned argumentative and yelled at Lois as she tried to get me to drink some Lactulose. She could see what was happening to me. I was lashing out and sweeping things off the shelves. Later, as I tossed and turned throughout the night at the hospital, recollection came back in bits and pieces. At on point I had a sort of tunnel vision of my oldest standing far away with a look of panic. Last night I learned what real fear looked like. It saddened my heart when I thought of what my family had to endure. I started to cry, but then the night nurse showed up, taking my vitals and seeing if I'd gone to the bathroom yet. They were giving me Lactulose every couple hours. Sometime during the wee hours, I had come around, but it wasn't until 7 in the morning before I finally started to use the bathroom and the fog truly cleared.
   I am still taking the Lactulose and I am back at home. Hopefully I will remain here until transplant. Hopefully things will return to normal. For all our sakes.