Posts Tagged With: liver transplant

And so it goes

We had a good, nay, a GREAT day, yesterday.

Today, not so much.

But that’s the roller coaster of this mess. Up and down, down and up. It’s difficult to access how each day affects his overall prognosis. Especially when you have a day that seems to set you back 2.

At 4am his hemoglobin, platelets, and blood pressure were stable. At 10am, they weren’t. In the short period of 6 hours, the world turned upside down. He needs blood, he needs platelets. After several interventions (i.e. albumin boluses) his blood pressures are still low. Initially they thought his blood pressure was low because they pushed too much trying to get his kidney’s to flush out all the excess fluid. Maybe now he is too ‘dry’.

Or not.

Maybe he’s just getting sicker.

Maybe today is the day he tips over the edge of the black hole and can’t be brought back, maybe in those 6 hours the universe shifts.


It’s the emotional roller coaster that take’s it toll. Well-meaning folks ask how I’m doing. They express disbelief at my mental fortitude. They offer up suggestions, that well, I’m uncertain about. Sedatives? Anti-depressants? Sleeping-pills? *gasp* A therapist? Alright, alright, settle down – I am not opposed to any of these things. But right now, in this moment, I don’t want drugs – I don’t want to not feel what’s going on here. Someday, the time will come when I won’t want to feel anything.

I’m pretty sure at that point, a good bottle of wine will do the trick.

As for the therapist, I was not really given the option to say no to that one.  She appeared at my door a few weeks ago, sent from the team as a resource and a way, I’m sure, to confirm that I wasn’t headed to the padded room reserved for 1. We talked. She asked questions, I answered truthfully. She acknowledged that I didn’t need her. I was coping well with it all, the highs, the lows, the very lows. It is my strength, she says. The ability to be focused and in the moment and not fall to pieces. Yippy Skippy. Maybe if I didn’t have to use the skill so damn much – I wouldn’t be so damn good at it.

So here I sit, the air knocked out of me, watching David sleep. Every now and then we rouses and opens his eyes. Today more than any other in recent memory, he has spent a great deal of time with his eyes open. But his eyes are unfocused. They no longer move together as eyes should. Nor, do they track, either to my voice or to an object in front of him. In fact, the doctor stood and flicked her fingers directly at him, almost touching his eyes.

He. Never. Once. Blinked.

Now comes the realization that he may not be able to see. It may be swelling, it may be weakness, it may be permanent.

Life and death, darkness and light.


As of right now, his blood-work is stable. He appears to be comfortable. I’ll know what tomorrow brings when it comes. As for now, I’ll recite my mantra:

Every. Damn. Day. Just. Do. IT.

Categories: Life | Tags: , , , , , , , | 14 Comments


I get a lot of questions from all over the blogosphere and from friends and family as well. There’s one question that has been asked a lot and my friend, Diane, asked it again. So I’ll try and answer it the best I can. She wrote to me and said:

This poor baby when he gets better will need a detox. Why is that they feel all these drugs are less harmful than to remove the organ (that is the cause of the problems, right?) and use a machine to help stable him until availability of a new organ? I guess it comes down to I don’t understand why they try so hard to work with an organ that obviously isn’t going to work for David, or is that par for the course when receiving a transplant – being able to be strong enough to fight rejection? I mean his body is rejecting the transplant? right at least technically?

Okay, first – he’s not in rejection. His liver is beautiful and it works perfectly. Thank you Donor Family, it’s the best thing he’s got going for him right now. 2nd, unfortunately there’s no machine to replace or help a liver function. Lungs, yes. Hearts, yes. Kidneys, yes. Livers, no.

Having said that, his liver is, at least partially, the cause of his problems. After his transplant, David ended up with adenovirus. (How he caught it, we don’t know – he only left the hospital for a day before I brought him back sick.) In you or me – adeno is simply a cold. It can cause pneumonia and make you feel like crap, but generally it isn’t much cause for concern.

David was highly immunosuppressed when he caught it, he was on steroids and Prograf and the adenovirus had a field day with his less than spectacular immune system.  So while his body was trying to ward off the adenovirus, his liver tried to help. Just what all good livers should do.

Which, if it had really been his liver and his lymphocytes, that would have been fantastic. As it was – the lymphocytes his new liver created or already had in storage, went out, in reaction to the adenovirus, and attacked David’s immune system instead. That’s what’s called graft vs. host disease. That’s what made his skin all blistery and his gut not work and wrecked havoc on his eyes.

It’s why we’ve been throwing all these drugs at him. A new liver won’t do him any good – in fact, it could potentially add yet another set of donor cells to the frothy mix already buzzing around inside him. The drugs are trying to get the donor lymphocytes under control AND trying to get the adenovirus under control.

The treatments for these 2 diseases are the exact opposite. GVHD needs more immunosuppression (campath, steroids, prograf, etc) to get it under control and adenovirus needs a nice pretty immune system to fight it off. (cidofovir, ivIG)

I hope that helps explain things better and you understand a bit more of why they’re working so hard to balance all these drugs. The other things that come into play for him is the fact that several of these drugs are toxic to his kidney’s – that’s why his renal function is worsening. He retains fluid, which is bad for his lungs. They give him lasix to pee and then, when he pees too much, they have to give him fluids to help stabilize his heart rate and blood pressures.

It’s a balancing act through and through. I find it very difficult to say the words out loud – Capt Snuggles is not doing well. I know, I know I should be saying ‘he’ll get better’, ‘he pulled through before, he’ll do it again’, but I feel like that’s masking what’s really going on.

He’s very sick, there’s no two ways about it. It’s near midnight, they’ve turned up his vent settings. They are almost as high as he can go, on this vent. I’m truly afraid of what tomorrow holds. Will it be the other vent? The ‘life support’ vent that does all the breathing for him. Will he require it that soon? I’m devastated that’s it’s come to these thought’s so quickly.

His kidney’s aren’t working very well, either. He had been peeing well. They gave him the lasix, but it didn’t produce any more urine.  If his kidney’s shut-down, yes they can put him on dialysis. But if he ends up on the life-support vent AND the dialysis – there aren’t any more machines to support him.

They are going to give him diuril and then another dose of lasix. He needs to pee. He had started to bleed from his nose, so they went ahead with another 2 units of platelets. ( He received platelets this morning, but they didn’t help much.) And the plasma.They went ahead with the plasma, as well.


There is nothing easy about any of this. No kinder, more gentler way to describe what he’s going through. This is what it is. Right now, this very moment, he is stable. He appears comfortable. It’s all I want: his comfort through all he has left to endure.

Categories: Life | Tags: , , , , , , , , , , | 20 Comments

2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

The Honeymoon is over.

Sunday morning dawned bright and early, with the typical Christmas hangover. The boys all had too much stuff and attention spans too short to play with any of it.  So while they haggled with each other about whose stuff was better, I walked over to the hospital to listen to morning rounds.

Capt Snuggles apparently has more tricks up his diaper.

He seemed to be doing well. He’d had a quiet night, the Chaperones were quite pleased with him. Then I saw it. The telltale signs of blood in his diaper. I opened his diaper and it was just full of bright red bloody poop. The Chaperone informed me that he hadn’t pooped in 24 hours and his NG tube was putting out a lot more stomach juice than usual.

Christmas is over and so is the honeymoon.

That earned him a CT scan to rule out any blockages in his intestines. He has GVHD in his intestines. It causes them to become thick and swollen and difficult for things to pass. Since he’s gone from pooping almost every hour of the day to just once in 24 hours and bloody on top of it – there’s much cause for concern.

We end up waiting most of the day for the scan  – Sunday afternoon turned out to be a busy time in the ER – several  trauma’s came in, putting us at the bottom of the list. During the wait, he has another, not quite as bloody stool and his NG output is still copious.

By evening, we have results – everything looks pretty much the same as the previous scan. No obstructions (good). No air in the intestines (not so good). They are thick and fluid filled.  It’s good news that there is no obstruction, but we still don’t know what’s causing the bloody stool and the increased NG output.

He is a riddle, wrapped in a mystery, inside an enigma. Thanks, Winston Churchill. Perhaps there is a key, we just can’t seem to find it.

Monday went quietly, no more poop, bloody or otherwise.  They have managed to go down some on his pain meds/sedation.  They’ve also gone down on his ventilator settings, in preparation of extubation sometime next week. His lungs are still pretty weak. Weak from being on the ventilator and having excessive fluid in his lungs, not from any issues inherent in his lungs.

And his skin continues to look absolutely amazing. Every day people stop by and gush about how awesome he’s looking. It’s good, it is. But now the real work begins, to get his insides working as well as his skin looks.

It’s going to be a long, long road.

Whew. And I’m already tired. I think exhaustion has finally caught up with me. Monday morning, I was so tired, I went back to the RMHC and slept. And slept. And then slept a little bit more.

Tuesday morning I woke up and I swear I could have went back to sleep for another few hours. But morning rounds were waiting for me.

I went back over to the hospital. He still hadn’t pooped and his NG output was still significant. His skin continues to be awesome.

He didn’t have another poop until about 3pm Tuesday and it was a repeat of Sunday mornings, bloody. Overnight into Wednesday morning, he had a total of 4 more bloody stools and his NG output is higher than it’s ever been.

On top of ALL of this, his lymphocytes are increasing. While they are not super high, they are elevated enough to determine that 50% of them are T-cells.

T-cells are not our friends.

They ordered a more in-depth blood test to determine if the T-cells are naive (his own) or activated (most likely from the graft).

So we’ll wait.

Maybe I’ll go take another nap while we’re waiting, I sure am tired.

Categories: Life | Tags: , , , , , , , , , | 7 Comments

The Good, the Bad and the Purple

I have become the worst kind of superstitious. I’ve always been a bit weary of saying things out-loud. If I am boastful of something good, will it fade away? If I utter the bad into existence will it manifest in spades?

It’s been 2 days worth of not-so-bad. While not exactly progress, he hasn’t back-slided, either. I’m leery to say these things out loud, to express the hope that we might actually be one step on the path to recovery.

As far as they can tell, the lovely purple color he turned is a reaction to the daptomycin. Very rare side effect, but a known side effect nonetheless.  Clarification, OUR doctors didn’t know about it , but someone finally confirmed it to be a known side effect.  He now turns purple on demand whenever he receives the daptomycin infusions. Violet Beauregarde would be proud. Thankfully, it’s only once per day.

His dressing changes are slowly becoming less traumatic. While his belly and chest still have areas of bleeding and rawness, his arm and legs look wonderful. His feet and hands look amazing. Again, let me clarify. While he’s not going to win any modeling contests right now, he no longer looks like the Thing in these areas.  I might even be able to snap a photo or two of his pretty pink toes in the upcoming days.

I brought up the subject of extubation today and the Fellow thought I was crazy.  I want it included in discussions, though. I want tangible goals set, so we don’t lose sight of the fact that he is improving, however slowly. He was intubated because of the severe pain associated with the GVHD. With the GVHD resolving and his skin healing, he should have less pain and be heading towards extubation.

(I also realize, nothing is this cut and dry. I know he has lots of other issues, such as whether or not his lungs are ready,  but it all needs to be discussed.)

Part of the problem also lies with the drugs. He needs to be sedated while he’s intubated because he could obviously hurt himself otherwise. He needs pain meds because he still has some pain/discomfort from the GVHD.  I firmly believe that at this point, the sedation is needed more because he’s intubated rather than any major pain issues. They’ve thrown so many narcotics at him , he’s going to need drug rehab for several months just to come off all these meds.

His lymphocytes were elevated this morning at 8%. In the past, the BMT doctor’s would check a blood sample and check for the T-cells. We have a new BMT Attending this week that wants a different blood test, one that tells us the percentage of donor cells vs. his own cells. This test is difficult to get – it needs to be sent out of the hospital and it takes several days to get a result. So while I agree with needing this test, I’m concerned the T-cells could be multiplying and wrecking havoc on his body while we’re waiting for results.

So we’re back to the waiting game.

At least we’ll be busy while we wait. Wednesday is Jonathan’s 6th birthday. He spent his first 2 weeks of life, which included his first Christmas, in this hospital. AND He also spent his first birthday here, coming home just in time for Christmas.

Zachary’s 3 year liver transplant anniversary is on Christmas Eve. He spent his first Christmas in this hospital, just like David is going to do.  Even among the not-so-good, we have lots to celebrate this week. My sister-in-law was roped into, generously agreed, to spend Christmas break here at the RMH with the boys. So I get to spend time with the boys and still be close to David.

Sounds like my week might just tip the scales in favor of the good.

Categories: Life | Tags: , , , , , , , | 4 Comments

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