LiverDonorNightmare.com
 

August 9, 2007 It's almost a year later, and you'll never guess what's happened! Tomorrow I am supposed to leave on vacation. Billy & I are meeting his family in Las Vegas. But something has not been right since Sunday (8/5/07). I've had a recurring pain in right side, just under my ribs. I thought I was just sore from all of the cheering and arm waving I do with my summer swim team, but it has not gone away all week. At work on Monday, it was 90 degrees out. I told my boss I was cold (???) At home on Tuesday night, I had a fever. On Wednesday, I actually considered taking myself to the ER. I thought that whatever it is, I'll just get it checked out and maybe get an antibiotic. I was having trouble taking a deep breath without pain and thought maybe I should do something before we leave. Tonight I came home early and sat on the couch under a blanket. Billy was suspicious immediately. He felt my head and said I had a fever. He asked me what other symptoms, if any, I had. I confessed to the pain and the breathing anomaly. Also, by this time, I was having that strange familiar pain in my left shoulder. I hadn't felt that since the week after the transplant. We went to the ER. By some stroke of luck, NOBODY was there (do people not get sick in the summer?) I was checked in with a 103 fever. We saw a doctor right away. He asked about my medical history (HA!) and how I was feeling. He CLEARLY had an idea of what it was. The nurse set me up on an IV and took some blood. She came back with the awful CT Scan gunk and I drank it and went for the test. One hour later, the doctor came in and unapologetically told me that I was NOT going on vacation tomorrow. I HAVE ANOTHER ABSCESS NEAR MY LIVER AND IT MUST BE TREATED IMMEDIATELY. AARRUGGHHH!!! Billy called his family. I got checked into a room at Hunterdon Medical Center about midnight. Here we go again. I will see a surgeon in the morning.

8/10/07 This morning a Dr. Bello came in to see me. He’s very focused and direct. He said that my case is not surgical and that he’ll ask for a procedure to be done subcutaneously. Just like at NYU 7 years ago, someone is going to guide a catheter through my abdomen to the abscess and try to drain it out. If THAT doesn’t work, Dr. Bello will do surgery. He’ll try to schedule the draining for this afternoon. I am NOT going to Las Vegas tonight!! When Billy comes in, I spend the next few hours NOT eating and trying to cancel our travel arrangements. At 2 pm, they take me down to Radiology and Dr. Lowesberg does the procedure. He drains 70 ccs of yuck. In my delirium, I ask Billy 5 different times if I’m done yet and he just mocks me and tells me yes—and that he’s told me that already. There’s a JP drain. Some of this seems awfully familiar…

8/11/07 Now that the procedure’s been done, I am ready to go home, of course. I feel much better and am only sore at the site of the procedure. Few things are worse than the weekend in the hospital. At 11:30 am, the hospitalist (the doctor on duty in the hospital), Dr. Madoro, tells me that the gunk that was in the abscess is STAPH (he seems surprised by this) and has to be tested further. He is referring me to an infectious disease specialist. Dr. Bello came in 10 minutes later to tell me he knows Dr. Madoro is going to try to find the best way to treat this and he hopes it’s by oral antibiotics. I do lap after lap in the hospital hallways with my IV of antibiotics, making friends as I go. At 10:30 pm, I meet Dr. Gugliotta, the infectious disease guy. He’s slim and bald and has a scar that runs from ear to ear across his forehead. He wants to know everything that’s ever been wrong with me, how I got here, what were the symptoms, etc. Then he says the best thing, “did you have pain in your shoulder??” No one ever believes me about the shoulder pain but he explains that he, too, experienced it once when he was sick and now he knows to ask patients. He does a thorough body exam looking for a point of entry for the infection. He told me that since STAPH is in my culture that it would take weeks, not days to treat, but that I could probably do it at home. He changes my antibiotic drip to vancomycin. He said that the way my liver grew back, it left a cavity where the infection grew. Dr. G is having a hard time believing that this infection is something that lay dormant for 7 years, but he won’t rule it out. He’ll be back tomorrow.

8/12/07 8:30 am I was just told that I have a chest x-ray and an echocardiogram ordered. Also, I need to be in “isolation” because I have MRSA. This means that all visitors need to don a gown & gloves to see me, I can’t have a roommate, but MOST OF ALL-I CAN’T WALK THE HALLS!!!!!!! I just start pacing the room. 10:00 AM Dr. Gugliotta said that he reviewed the post procedure CT scan (I don’t remember getting one but they may have done it with the procedure) and he is very pleased with the job. He did another exam and said whatever the bug was, he was gonna get it with a sledgehammer. He thinks now that it could VERY WELL BE related to the liver donation in 2000.
11:00 AM Went for chest x-ray.
12:40 pm Dr. G came in to say that he was very very happy to see that my diaphragm had returned to its normal size (it had expanded) because almost ALL of the abscess has been removed.
9:25 pm Dr. G came by, he stood at the doorway and said "you won’t be here too long." His plan is to have another CT scan, review it and see how much if any remains and decide on antibiotic treatment from there.

8/13/07 8:40 AM Dr. G stops by and promises he’ll see me later.
10:00 AM The hospitalist came in. She told me that the order of events was the echo, eventual CTscan and then a new cocktail of antibiotics-all as per Dr. G. She also ordered a blood draw at 9 pm and midnight (because the vanco goes in 10-11 pm) to test the vancomycin levels in my system.
1:30 pm Went for echo. They were busy and I asked the tech NOT to call right away for transport back to my room. There was an older gentleman going next and I knew that would give me some time to get up and move before I went back. I paced up and down the radiology hallway for 45 minutes. Not much going on, but I was grateful to be out of my room!
10:50 pm r. G came in. He said that my IV looked swollen and he wanted it changed and told the nurse to take care of it. Then he said that I was doing fine but that I was in the "holding pattern." He left before even acknowledging my question about going home.

8/14/07 The JP has been draining a small amount of fluid steadily. I feel bad for those people that have to come in and take the bulb off of me and measure the output of gunk. It’s pretty gross.
12:45 pm The hospitalist came in today and said she would try to push Dr. G to get me a PICC line today. She said my drugs MUST be administered by IV at home.
2:30 pm Had PICC line inserted.
9:30 pm Dr. G came in and examined me. He said he was thinking of Thursday as a release date. He wants to get the CT scan tomorrow, review it and then send me home on IV antibiotics.

8/15/07 10:30 AM Nancy Miller, the home health coordinator came in to see me. She wondered if I’d go home today. She called Dr. G and came back to tell me I’d go home tomorrow. She will set up the home health nurse. No lunch—2 heaping cups of barium contrast—YUCK!!!!!
11:45 am Dr. G came by. He reviewed the medical records that Billy brought from NYU and called the doctors "numbskulls." He assures me I’ll go home tomorrow.
2:00 pm CT scan. I was hoping they’d remove the JP, but no such luck.
9:30 pm Dr. G came in (when does this guy go home??) He asked for copies of the records. Billy took them home this afternoon. I promise him I’ll send them. He said he reviewed the Ct scan and there is still a small collection of fluid in my abdomen, so I’m going home with the JP drain.

8/16/07 9:15 AM Nancy Miller set me up and told me my insurance will pay for it all. That is good news!
10:30 AM Dr. G came in and said I was going home. He said he looked at the films again and that the abscess is SIGNIFICANTLY smaller and that we definitely took the right approach by draining first. He said he’ll send me for another CT scan next week and then I should go see him the following day.
1:15 pm I am free!!! I am SO happy to be going home!
3:00 pm When we arrive home, the delivery is already there of vancomycin, the IV pole, heparin and saline flushes and tons of alcohol pads. I have ABSOLUTELY done this before.
7:30 pm Our Home Health Nurse comes and shows us how to administer the vanco, flush the JP line and clean the surface wound. She was terrific. It looks like 8-9 weeks on the vanco at home. I am counting the days. Twice a day, from 8:30-9:30 AM and PM, I have to infuse. I’ve covered the line with a sock with the bottom cut out.

8/20/07 Back to work! Sometimes I hookup at home…sometimes at work. I feel ok (except for the awkward JP drain under my shirt.)

8/23/07 CT scan this morning.

8/24/07 Went to see Dr. G. He had the JP drain withdrawn.

Through 10/22/07 I infuse everywhere. When I am at home, I use the pole. Billy fashioned an “S” hook to use most anywhere I go. Since the drip works by gravity, I have to hang the medicine bag high. Curtain rods work best. Bulletin boards (at offices) are ok. On the plane, I was prepared to use the overhead compartment. I can’t wait until I’m done. People have fashioned “designer”sleeves to cover the PICC.

10/23/07 PICC line removed!!! SO happy to have no more IV pole in the house and vanco in the fridge. Dr. G is now convinced that this infection IS related to the surgery 7 years ago. He wants me to start a protocol of 200 mg of minocycline for the next 8 weeks just to be safe.

12/20/07 I finished the minocycline a few days ago I had a regular appointment with Dr. G scheduled for today. He told me that he wants me to stay on 100 mg on minocycline for the next TWO YEARS at least. It is a program of prevention. He even suggests that I might have to be on an antibiotic for the rest of my life, but when he tries to whisper that out, I crush him with my response and he says we’ll just get through the first 2 years. I’ll see him again in March.

6/18/2009 I have finished my course of antibiotics and am now off all medications.

  previous home
     
    This website is a factual account of my experience. You may send me feedback here.