Posts Tagged With: Graft-versus-host disease

If only

Lights on.

It’s 4:30am and I wake to the bright overhead lights being turned on. Either something’s wrong or our overnite Chaperone is being a pain. I squint towards David’s bed and see the Fellow standing there.

Something’s wrong.

A half hour earlier, David’s heart-rate dropped suddenly into the 40’s, his oxygen level had also dropped suddenly. Blood was being drawn for his daily 4am labs, so the nurse waited until they came back before sounding the alarm. She said he was pale and lethargic.

His blood gas came back awful. So bad they had to max out the ventilator settings. That’s right, there is very serious talk of putting him on the oscillator, as it is really called.

I prefer the life-support machine.

Maybe yesterday’s episode wasn’t isolated, maybe the bleeding did more damage than originally thought. His chest x-ray shows marked deterioration of his left lung. Upon exam, they can hear that his left side is ‘down’, even with the vent setting maxed, he’s not moving air through his left lung very well.


The Fellow is unsure, he doesn’t want to put David on the oscillator, he’s afraid his body won’t tolerate it, he would require deep sedation and additional lines for closer monitoring. What I hear between his words is that he doesn’t want to be the one to commit him to this machine – to be the one to say there is no more hope.

So we wait for the Attending.

Of course, being Sunday, it seems like forever before the doctors arrive for rounds. They repeat his blood-work prior to rounds. A dose of sodium bicarb and the increased vent settings seem to have straightened him out for the time being. While the Fellow is certain this episode is an indication of his lungs getting worse, the Attending feels it is all related to the blood he aspirated yesterday.

Something we can support him through, rather than throw in the towel and wait for the inevitable.


So the vent was re-adjusted. Now we wait to see what his numbers tell us. Given that he’s been intubated for the past 2 months straight he has developed an underlying lung disease, causing a fibrosis or thickening of the lung tissue. This isn’t an infection or a pneumonia, something that can be readily treated. The Attending thinks his lungs are as stable as they will get for a while. It may take months into years for the damage to repair itself – if it can be repaired.

His upper GI bleeding has increased again and his 10am labs indicate the need for another blood transfusion and more platelets. Everything else looks relatively good. His kidney function has improved, his liver is holding it’s own, his heart is still strong. The three main contenders are the gut, the lungs and the adenovirus / GVHD. The adenovirus/GVHD get lumped together simply because we can’t tell which one is really the culprit in destroying his gut – so we treat them equally.

If we could get the adenovirus/GVHD under control, his gut could start healing. If his gut could start healing, he could be extubated and his lungs could start healing. If his lungs started to heal, he could start being a baby again.

If only….

Categories: Life | Tags: , , , , , , , , | 17 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

And so it begins.

First, let me just say, I am in awe. In awe of the outpouring of love and support from the blogosphere.  Consider yourselves hugged. All of you. Even you folks that just lurk and don’t comment, yes I know you’re out there. I have amazing friends, Mindy and Kirsten, and to everyone who took to FB and Twitter, thank you, thank you, thank you.

I’d like to think the crackle of energy in here over night, was just my imagination – but when the nurse commented to me how ‘different’ our room felt from the others.  I knew. I knew each and every one of you was sending us all the bright and shiny, positive energy you could muster.

Thank you Sir and May I have another?

Because Captain Snuggles is not out of the woods by any means. In fact he’s very, very far from it.  They uttered that dirty word ‘septic’ this morning in rounds and all I can ever think of  when I hear that word, is dirty, toxic sludge swirling around,  poisoning him.

ugh. It gives me the willies just thinking about it. *shivers*

His condition is tenuous. While he was relatively stable this morning, maybe a bit worse with some blood work and vitals, maybe a bit better with how his skin looks. This afternoon he’s worse. His blood pressures are running low, he’s been dropping his oxygen a bit, his kidney’s are not happy and overall he’s acting sicker today than yesterday. He’s been given blood and platelets and they’re discussing plasma. He’s getting cidofovir and IVIG and possibly adding another antibiotic, if his vitals don’t improve.

His lungs, in particular are acting up. His blood gases are pretty crappy right now. They’ve given him sodium bicarb because he’s acidotic, if that doesn’t help, they will go up on his ventilator settings.


These are the things the doctors warned me about.The beginning of all things bad.

His adeno counts just came back at 4 million, down from 5 million yesterday and 15 million the day before.

*sigh of relief*

A little bit of bright and shiny to brighten our way through of the forest.

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

A Call to Arms

They came for me today.

Folks I’ve known for years now. Folks who have seen me through the transplants, the illnesses, the seizures and the surgeries.  Through good blood-work and bad, these folks have always lent me an ear when I needed it. Folks I’ve had the privilege of sharing 3 of my sons with. Entrusting them in their capable hands.

They came for me today.

But it doesn’t really make the *talk* any easier, now does it? For them or for me. And yes, our Favorite Fellow had the *talk* with me at Thanksgiving, when the GVHD flared then and he couldn’t sustain his temp and his skin was all blistery and melting away. But this time, *sigh*, this time is different.

This time, it’s the folks who know us so well that have to be the bearers of bad news. The messengers that discuss DNR orders and how and when to decide when enough is enough. Can there ever truly be a time when I have to say ‘enough’?

His condition isn’t very much changed from yesterday. They tried to decrease his immunosuppression just a bit by reducing the steroid dose and stopping the Prograf. It worried me then and it worried me this morning. The last time they stopped the Prograf was Thanksgiving. I think we all remember how well that went.

So when I came in this morning, after only a couple hours of fitful sleep, and saw the rash, my heart fell. My immediate thought was please re-start the Prograf.  And they did. The steroids were increased as well. So far, no blistering, just a bumpy rash.

The biggest set back he had over night was with his ventilator settings. He has been on pressure ‘support’ since his original intubation at Thanksgiving. The adenovirus, the VRE, the excess fluid and the shear longevity of his intubation have all contributed to his lung’s inability to work effectively. So they switched him to both pressure ‘control’ and pressure ‘support’, increasing the settings as needed.

Capt Snuggles is a balancing act on so many levels. His kidney’s are weakening along with his lungs. There is a very real possibility he could end up on dialysis. If his lungs continue to weaken, a different ventilator will be brought in – one that does all the work of breathing. The one you unplug when you finally say ‘enough’.

It’s so hard to formulate thought when someone is calmly discussing at what point a DNR order should be created for your son. When someone says that you should call your family and ask them to visit, that maybe now is the time to let the boys have some time with their baby brother,  when someone says these things to you – what do you say in return? Cognitive thought leaves you and all I could think was “Who the hell am I going to call?”

My mother ran away years ago, my father is 70 and won’t want to drive down from Chicago by himself. I can’t expect my older kids to run down from Chicago, leave school and do what? Say good-bye to a baby brother they never met?

My mother-in-law wanted to come down this afternoon, but the roads are bad with snow and she was upset, I surely didn’t want another catastrophe on my hands, so I told her to wait. Sister-in-law called to say they’ve got sickness in their house – I told her to stay away, the last thing we need is another bug.

How did we ever get to this dark place?

It’s almost comical in a near hysterical way – the one bright spot late this afternoon was his adeno counts coming all the way back down to 5 million from last night’s 15 million.

Life is a fickle bitch sometimes, isn’t she?

Someone asked me if it was okay to pray for us. Absolutely, Please and Thank You, feel free to send all the love and positive energy you can muster our way. I may struggle within myself about the Powers that may or may not be. But I don’t care if you pray to Vishnu or Buddha or Allah or Yahweh or Jesus or G-d or even, Zeus himself. I want those positive thoughts.  I need those positive thoughts. I will be greedy in my quest for as much love and good, wholesome, positive energy as I can squeeze from you.

Does that sound fair? I will pour all my dark, heavy fears, hopelessness and negative energy out into the universe and you guys will send it all back, bright and new, a hundred times lighter and more positive than before.


Captain Snuggles is waiting……

Categories: Life | Tags: , , , , , , , , , | 47 Comments

5.3 million. And I don’t mean the Mega-Millions

Can you imagine 5.3 million, well, anything? I can’t. It’s a number that doesn’t compute for me. So when the doctors come in and tell me that David’s count for his adenovirus is just that, 5.3 million. It’s like a kick in the gut. How can there be 5.3 million of anything in my almost 8 month old son? It’s a staggering number.

And I’ll be honest – it scares the crap out of me.

Consider this: his adenovirus counts were in the 1,500 – 2,000 range when his GVHD announced itself back in late-September. That made him sick for a solid 6 weeks. Then he got better and the adenovirus counts came down. They were consistently less than 625 for several weeks. During most of December, the adeno counts were relatively low. But the T-cells from hell wouldn’t go away and the campath was administered. Since then, the adenovirus has crept up slowly.

Until this past weekend, when we started seeing the counts go up by leaps and bounds. 5,000 turned to 300,000, turned to 1.5 million, turned to 5.3 million. All within 4 days – that’s been his running counts since Sunday.

This number is just beyond my comprehension. It explains the worsening of his lungs, it explains the fevers and the elevated heart-rates. It explains the drops in hemoglobin and platelets. It explains why after fighting the GVHD for the past 5 weeks and getting better – really and truly getting better, he’s back on the edge of a mighty big black hole.

A black hole, I’m scared he’s not strong enough to find his way out of.

He’s so weak. And in turn, it makes me feel weak. Imagine if your newborn baby weighed 20 lbs, had seven teeth and wore size 4 diapers. That describes David. An almost eight month old newborn babe. All arms and legs and wobbly head. A newborn babe that can’t be held or comforted, snuggled or consoled.

It’s been almost 8 weeks since he was up and out of bed, almost 8 weeks since the last time me or anyone else was able to hold him.

I can’t even begin to imagine what the lack of touch has done to him. It’s not that I don’t touch him – I do. I try, anyway. But for all those weeks that he didn’t have any skin – I couldn’t hold him or touch him in a comforting way. It gives you a whole new perceptive on the term sensory deprivation. He hasn’t looked at me in weeks. I talk to him and sometimes his eyes will flutter open, but he is unfocused and no longer tracks my voice.


So much, every day. Day after day. I know, I know….

Every Damn Day, Just Do IT!

It’s an excellent mantra and one I am still focused on. But.

Some days it’s just hard, so overwhelmingly hard. Damn IT!

Treatment for adenovirus is the exact opposite of treatment for the GVHD. So as soon as they lower his immunosuppression to allow his body to fight the virus – the GVHD is at risk of flaring up again. And while I say risk, you know I really mean it’s more than likely going to happen.

Because the kicker is (well, ONE of the kickers) – shortly after snapping his beauty shot yesterday, a subtle, red bumpy rash started up over his head and face. Today it’s traveled down his chest and across his belly. I started to type that the rash was faint, but after further inspection – it’s not so faint. He’s definitely developed a new rash.

AND, this is the REAL kicker – that 5.3 million I’m struggling to comprehend?

It just came back over 15 million.

*crashing……..darkness…….spinning out of control……*

Around and around and around we go. Will it stop? I don’t know.

All I can say is…..

Every Damn Day, Capt Snuggles Just Does IT.

And if he can do it, so can I.

Categories: Life | Tags: , , , , , , , , , , | 15 Comments

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