August 18th - Current Status

Some of this may be repeat info, but I was writing an email to a friend when I realized that I could explain my current situation more concisely. So here's a copy and paste from that email:

I've lost some weight and look pretty awful (skinny - as far as I'm concerned), so the goal now is to get my liver system functioning correctly and gain some weight. As for my liver - I've got 3 drain things going on - there are two lobes of the liver, left and right. On my left side, I'm doing ok. I have an internal stent which holds open the bile duct to that lobe and allows the bile to drain to the small intestine/duodenum.

On the right side, before last week, there were problems with the drainage. The docs couldn't get a stent in place internally - junk was backing up - causing fevers and sending me to the hospital. They inserted an external drain - connecting my liver to a tube and a bag that I strap to my leg. Everything was flowing well with that setup until I was in the hospital again last week. Then the drain started leaking externally making a big mess. They took me in again to replace the tube with something larger and were able to also insert an internal stent. This was good news.

But with all of these drains and stents, the stuff that comes through has a high viscosity - not like water - more like mucus and other junk - so they have a tendency to get clogged. When things get clogged, I get fevers (likely caused by bacterial infections). So right now, I'm trying to keep my external drain flowing properly - it was clogged this morning. I have syringes with saline that I use to flush the line.

I'm also on blood thinners now. So I have to give myself a shot daily, like insulin for people with diabetes. It's not so bad. Putting the needle in is actually less painful than the after effect. It stings for a few minutes when I'm done. It's just another piece of garbage I have to deal with daily. They have me on 3 different antibiotics right now until Thursday. I'll be happy when those are done - subtract one thing from my list. Of course, then I'll have to watch out for fevers caused by any infection the antibiotics were covering :)

Hopefully, that clears up some things and updates you on others. Feel free to ask more questions if anything is unclear.

Comments

[Jon Thomas]

I've heard the word "viscosity" a million times in car oil commercials, but now is the first time I actually understood what it means.

[Dr. Carole Ann Maxwell and Richard Nuzzo]

24 August 2009
From: Dr. Carole Ann Maxwell
Richard "Rit" Nuzzo

John: Carole Ann and I have been traveling; we came back in time for the Summersing, but we have been busy. The lady I take care of, who is 90 years old... is having her right hip replaced tomorrow. She is becoming very crusty... almost, no she is rude. But, I 've known her for 55 years (I used to caddy for her at Shorehaven.

Anyhow, your physician team is concerned about gram negative sepsis. That's why they are pumping you with all those antibacterial agents. The shunts that are imbedded in your liver and bile duct make for a breeding groind for gram negative infection. You keep battling John!!!

What are the next steps fou you? I do not remember reviewing a treatment protocol,

You mentioned you are losing weight... not the best way to shed pounds John.

Is your girlfriend still around? I hope she provides you with compassion, empathy and is a place you can go when you're not quite right (it's ok to cry)!

We're sorry you are having to tolerate this illness John... thank God you have a great physician team in your corner!!

Keep letting us know how you are doing.

By the way, Carole Ann and I were involved in a rearend collision returning from a colonoscopy on June 17th, right on Rte. 25, heading North just before you enter our townhouse complex. Fully-loaded flat-bed truck with a forklift on the back, was delivering a shipment. We were in Carole Ann's 2008 BMW Z4 3.0 convertible, top-down, beautiful day, roads were dry. The driver just rammed inot us 4 times. The 1st time he hit us, the trunk popped, so on eac successive hit he could not run right over us, tne trunk stopped him. Such is life... I'm hurting again terribly. Going in to an interventional radiologist at Yale to have a dye injected into my spine; and then being sent for a CT SCAN. My spine surgeon, James Yue, MD Professor and Chief of Spine Surgery, of the Yale New Haven School of Medicine's Spine Division is my physician.I have great faith in him; he is a very good surgeon. Looks about 30 years old. He went to Harvard, then Northwestern Medical School, followed by intership, residency, and fellowship in Spine Surgery at Johns Hopkins. He believes the problem is now at L2/L3; I have a device in my back at L4/L5 that he put in in June of 2005.

Now... back to you... you mentioned you are still losing weight? Have you lost your appetite somewhat?

You hang in there our good friend. You have a legend of good friends providing prayers for you... you still have much to do!

"Talk to you" soon John. Continue staying very positive!!!

Ta Ta !! Farewell!!! Stay Loose!!

Dr. Carole Ann Maxwell & Rit Nuzzo