Monthly Archives: May 2014

Beethoven Died of PSC?

I found this article from which is a support, research, and all around good website for those suffering with PSC.

Primary Sclerosing Cholangitis may have caused the death of Beethoven

Läkartidningen, vol. 103, nr 35, s. 2494-2496.
Stockholm: Läkartidningen Förlag AB

Friday Check-Up and the Sunny Day Agenda

Our trip to Lahey this morning was pretty uneventful. We went to the blood lab, and the phlebotomist recognized Derek and told him it was nice to see him out of a hospital bed. Apparently, when you spend more than a month in the hospital, phlebotomists begin to recognize you. Derek took his Prograf and then we headed up to the clinic. His meeting today was with his lead surgeon, but his other surgeon came into the waiting room and gave Derek a hard time for his scruffy face. When Derek told him it was hard to shave what with the major abdominal surgery, his surgeon rubbed his eyes and made the waaa waaa face. Then he smiled, gave Derek a pat on the back and said it was nice to see him smiling.

Derek’s labs came back and show that his white blood cell count is on the decline. It was 20 on Tuesday and 13 today (normal range is 4.4-11.3). So if he is fighting something, he’s likely winning. His Bilirubin is holding steady at around 3.2/3.3 (normal range is 0.2-1.1). This is to be expected, it’s going to take a while for his body to purge the last remaining bit of bilirubin from his system. His eyes look pretty white, and his skin is a pale color I don’t ever remember seeing before.

April 28th on the left. May 29th on the right. (Hospital lighting makes healthy people look jaundiced, so the comparison is extra dramatic.)

April 28th on the left. May 29th on the right. (Hospital lighting makes healthy people look a little jaundiced, so the comparison is extra dramatic.)


The other good news is that his hematocrit level is on the rise. Hematocrit is a measure of how much blood is in your blood. When Derek had his variceal bleed, it dropped pretty low and that’s when they gave him a blood transfusion. Today the result was 35 which is a big improvement (normal range is 37-47), my hematocrit at my last test was 36.8.

He goes back in next Friday and will see a different surgeon as his primary surgeon will be presenting at the International Liver Transplantation Society (ILTS) Conference in London next week. His surgeon also told us that the ILTS just elected his wife, Dr. Elizabeth Pomfret, Chair of the Department of Transplantation at Lahey, to be their president. It’s a pretty big honor and we are really proud and excited for her!

For the rest of the day we plan to do what we’ve been doing, eating, exercising, napping and puzzling. We’ve made some nice progress on the puzzle, but we’re approaching the pretty challenging part.

photo (7)

Thursday – Much of the Same

Today I expect much of the same as yesterday. The sun is coming out, so there will be a walk or two outside. The doctor suggested lifting 3 lb weights to gain some strength in my upper body. Logan and I ran an errand yesterday and picked up some 1 liter bottles of seltzer that will be my weights for the moment. Plus, there may be some basement stair climbs. I noticed yesterday that just stepping up on a curb was a little more difficult than it should be. There’s just a little exercise that needs to be done to regain some semblance of athleticism.

Probably bigger news is I’ve been off painkillers since the Tuesday doctors visit. Things are sore and hurt, but there’s very little constant pain. It’s more constant soreness and a reminder that my abdomen had its last major surgery a mere 2 weeks ago. The discomfort is manageable.

Wednesday’s Rainy Day Agenda

So soggy today.

So soggy today.

Currently we are digesting our high-protein buttermilk pancakes–Derek’s were extra high protein since layers of peanut butter were added to the stack–and watching the French Open.

Next, we plan to tackle this puzzle, thoughtfully sent to us by my good friend Stephanie.

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Derek’s Two-Week Check-up

We arrived at Lahey around 9:15a this morning for blood labs and right when we got there we ran into one of my surgeons fully decked out in scrubs! He gave us both a great big grin, gave Derek a once over and told him he looked great. “See? You’ve turned the corner.” Then he gave me a big hug and said, “Ah, there she is! My patient!” He wished us well and rushed down the hall to catch up with his colleague. Derek turned to me, smiled and said, “I’m not sure it’s standard for surgeons to hug their patients, but it sure is nice.” Derek got his blood drawn and then we made our way back upstairs to the clinic. The rule on clinic visit days is Derek is supposed to take all of his meds EXCEPT his Prograf. Once his blood is drawn, he takes the Prograf. We sat in the lobby for a minute so he could take the pills and a big gulp of water.

We were a little early, but we went to the Department of Transplantation to wait for his surgeon. The receptionist greeted us before we even made it through the door. Every time we go in Derek has to confirm his medications and take a little survey. The survey asks just a couple questions, like what is your current physical ability? Derek checked the 70% which meant he could do some physical stuff, still needed help with some activities and was able to handle his own personal care. They checked his vitals soon after and his resting pulse rate was still high, around 100-115 bpm. His blood pressure was good, and the scale showed his weight at 144lbs so he is slowly adding weight back on to his frame. They brought us back to the exam room a little later and his surgeon arrived, shook hands with us, and then made a bee-line for the computer to check his blood test results. Derek’s transplant nurse was also in the room and I shared all of the vitals we had been tracking since he’s been home, with her. We learned that his bilirubin is currently at 3.2 and his albumin is at 3.5. So a little ways to go on the bilirubin, but the albumin number is amazing. Continue reading