Harvey Is Very Sick

I have not written for a while - partly because I have been very busy, and partly because I have not had the heart to write. But I did promise to tell you the truth and nothing but the truth - so here goes. You might want to sit down for this one.

Harvey was readmitted to the hospital on Saturday, June 14th. His “Fevers of Unknown Origin” (which had been simmering for a while) took off again and this time both his blood pressure and oxygen saturation levels headed into unhealthy ranges. Harvey had always had the heart and lung capacity of a much younger man - courtesy of years of regular exercise. Now he was becoming out of breath. I made the decision to take him into the hospital for immediate admission.

Lucky I made that call when I did, even though I had to struggle past rather uncooperative doctors and “fellows” manning the weekend shift. A chest X-ray showed slight infiltration in his lungs, not enough to be classified as full blown pneumonia, but nevertheless worrisome. They suggested Harvey use oxygen overnight, just to be comfortable. By next morning, oxygen supply via the cannula (little plastic tubes at the tip of one’s nostrils) was no longer sufficient and we had to move to a full mask covering his mouth and nose.

The rapidity of events after this was truly breathtaking, I am still reeling from shock. We went from mild opacity in one corner of the lungs on X-ray to full blown total “ground glass opacity” of entire volume of both the lungs in a matter if 24 hours. A pressure assist oxygen delivery system (“Bi-Pap”) was suggested as a way of keeping Harvey well oxygenated, a way of avoiding full intubation and ventilation (machine controlled breathing). That lasted less than 12 hours. The “prudent and pre-emptive” intubation rapidly became a crisis management procedure. Harvey’s lungs gushed a whole lot of blood as they were trying to intubate him, he was bleeding and losing blood faster than they could replace with transfusions.

Since last night Harvey was on the intensive care section of the transplant wing, listed as critically ill. He is in a medically assisted coma, to keep him fully sedated as they tried to stabilize him. It was a touch and go last evening. I was told to call the family in, none of the many docs milling around gave me any assurance he was going to make it overnight. As one expert put it, he is as sick as a person can be and still be in the land of the living.

Harvey made it overnight, much to everyone’s surprise. Right now he is resting easy. We have a better control on the internal bleeding (we think), blood pressure and heart rate have stabilized. But he still needs almost continuous transfusions of red blood cells and platelets, just to keep him going. His blood counts have all crashed, he is in full blown pancytopenia with WBC hitting a scary 0.1K this morning. We are fighting multiple wars here. During all this trauma he had an episode of atrial fibrillation, which seems to have caused damage to his heart. His lungs are a bloody mess, any one’s guess whether they will be able to recover, ever. His kidneys are struggling.

What caused this devastating cascade of inflammation that made mincemeat of his lungs, implicated his heart, and overloaded his kidneys? No one is quite sure. But this much is sure. Harvey’s life is hanging by a very slender thread and the odds are not good at all that the frayed thread will hold. I am pretty much in shell shock, after have been up for three nights in a row. I would have crashed completely but for the strong shoulder of our daughter. And now our son-in-law is here as well to lend support. A very special thank you to “Lisa”, a true friend in need.

Will Harvey make it? I don’t know. I wish I could tell you that I am optimistic. Every time I try to read the tea-leaves and suggest an optimistic outcome, I am cautioned against false hope by the experts. Their consensus is uniformally bleak.

My heart and soul are aching with grief and tension. I will try and update you again in a couple of days. Right now the world is a dark and scary place and I do not know whether either of us will make it alive out of this nightmare. I am forcing my self to write, mostly because it is what Harvey would have wanted. This Journal is his legacy to the CLL patient community he loves - I hope against hope that he will be around for a long time to continue his crusade.

Please forgive me for not replying in person to all the caring and worried emails you have sent me for the past week or so. I hope this Journal entry will help keep you in the loop. You deserve no less.