Day 108: I Should Have Said "Lord Willing"

I just glanced at my last post. Nothing I said at the end of it is true. I should have said, "Lord willing, I'll see the long-term doctor on Thursday and finish photopheresis on Friday and Monday."

They did pull my central line, the Hickman Catheter, on Wednesday. By afternoon, though, I'd noticed that the swelling in my neck had increased and spread to the top of my sternum. I called Vanderbilt, and they sent me to the emergency room in case I was bleeding from the catheter removal.

I wasn't then, but I sure was the next day.

They kept me overnight Wednesday night in the emergency room for observation. They wanted to make sure the swelling didn't obstruct my airway or stop me from swallowing. That night a decision was made to give me Heparin intravenously rather than the Lovenox shots.

I was put in a private room in the emergency room (thank you to the wonderful resident who understood the issues involved with immuno-compromised patients). I stayed overnight there, being treated at the start by an RN who looked remarkably like my son, the one who just got married. He had my son's mannerisms and facial expressions, too, which made for a weird but pleasant experience.

For those that know my son, here's a couple photos of the RN (who fortunately is older than my son, close to 30).

In the morning, a different nurse came in and gave me my medicines. She checked the bandage on my chest from the catheter removal, and it was fine. Perhaps a little red spot.

Then the heparin kicked in.

An hour or two after the nurse had checked the bandage, the doctors came in doing their rounds. The bandage was completely red and perhaps even under pressure. The understudy doctor (the resident?) asked the main doctor if he should stop the heparin immediately. The main doctor said yes.

They left to do the orders, and the nurse came in to replace the bandage. She pulled it off and blood ran everywhere.

For the next hour, the emergency room tried to figure out what to do. They did get me off the heparin, and apparently heparin's blood-thinning properties go away within hours. I didn't really want to bleed all over the bed for hours, though. I told the nurses there that radiology had told me that if my chest bled, I should put pressure on the jugular vein in my neck, not on my chest, but they were having trouble believing that.

They did manage to slow down the bleeding and apply a new bandage to my chest. I tried to help by applying my own pressure on the jugular vein.

(I don't think the timing is right on that picture. I think I did this before the first time that the nurse pulled the bandage.)

An EMT came to help her, and when he lifted the bandage, there was a small explosion of blood that splattered all over the bed, my shirt, and even on him. The blood then began running off my chest and pooling in the crook of my arm, quickly enough to alarm me. Of course, it alarmed me worse than them. They have a better idea of how much blood a human can lose, and my red blood cell counts have climbed into the bottom of the normal range.

Finally, a radiologist came over and told the EMT, who was a beefy guy, to apply ten fingers of pressure, making sure to emphasize the jugular vein above the collarbone, but also to apply pressure to the whole tract from the collarbone to the hole on my chest where I was bleeding. The radiologist then applied pressure to the jugular vein to show them that this stopped the bleeding immediately, proving that the bleeding was coming from the jugular vein, then traveling down the tunnel under my skin to the insertion site.

Between the EMT's pressure and the heparin wearing off, we finally got the bleeding stopped. Not long after, they moved me up to 11 North, where I had spent so many weeks doing chemo and the transplant, and they kept me overnight only. They released me early this morning, and now I'm back home.

The nurses and my wife think the swelling is down on my neck from the blood clot. The doctor tells me that it could take weeks for it to go completely away. They're going to put me on blood thinners (but not heparin!) for three months. Usually, it would be six months for a patient who developed a clot, but since there's a cause for my clot (it developed around the Hickman catheter site), they are only going to do three. I'll get a few days of the twice a day Lovenox shots, and then they'll put me on a pill called Coumadin. I think most heart patients have heard of it or taken it.

So, Lord willing, the plan is for me to go in for photopheresis Monday and Tuesday, see the long-term doctor on Wednesday, and then be put on long-term care, coming to Vanderbilt only once per month or so. They'll do blood checks with my family doctor possibly more often.