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.