The Impatient Patient

That’s me…

Everything is going as expected. Over the last week I have had only two real issues, both which are not issues but expected. One is the draining from the wound. (The hydraulic fluid problem) some people leak for 30 days. I think I’ll have the problem solved before then, but it is been very annoying. The last couple of days drainage has slowed considerably. The other is dehydration. I have always dehydrated quickly. But because of the leakage I have to drink tons of water. In addition they keep pumping in about 1 L of fluids every day. The more you leak the more fluids they give you which increases the leakage which really sounds like a perpetual roundaboute. But, eventually it stops and it seems to have stabilized over the last couple of days. It gives "happy trails to you" a whole new meaning and I feel like a leaky boat that the bilge pumps running continuously. A week ago I had constipation issues which becomes uncomfortable. Interestingly, the wound and my gut do not hurt at all. I maybe take a Tylenol at night but I can go from laying flat and sit up and nothing hurts. They said the muscles that they cut through would hurt for some time so maybe I didn’t have any muscles to hurt. I am now about 8 pounds below my preop weight, but I’m still a long way from being the Boy from Biafra.

Everyday they keep adjusting. They take very small measurements of all the good stuff in the blood and then make adjustments on the medication as they cut it back. Being two blocks away is a godsend because it’s close and they can do everything very quickly. Folks in a rural area have to travel to get to a hospital for the blood work, and then it takes a few days to reach Northwestern which I assume is more problematic and places patients more on a roller coaster trying to get everything cut down. The number of pills has generally gone down. I am on a study to eliminate antirejection medication permanently which seems to be a wave of the future. If something gets out of whack, that’s easily fixed as it shows up in the blood work immediately. If there is any rejection you see in the blood work long before you feel it in your body. I would assume in six months the worst case I would be on one or two medications.

I am the impatient patient because I really thought I would be walking around the block after for five days after surgery. I think I was slightly too optimistic. Now it’s even more frustrating because I feel fine and everything is great until I walk 100 yards and at that point I am winded. They keep telling me how well I’m doing –very well, and I know it’s true. There are some folks that I have met having a really rough time but were in not so good shape going into the surgery.

We checked in with some of our other friends today at the clinic. The guy that got the kidney donated by his son look fantastic. They took out all the to see had for dialysis because of never have to do it again. Their daughter wants to be a nurse and is Nancy’s new texting Buddy. I think she would make the perfect St. Norbert student in the nursing program. These amazing stories happen on a daily basis and there is no question the various members of the team go home at night knowing they have done wonderful things for people. They really make a difference to everyone around them and virtually everyone in the liver clinic are frightening smart people that really know their stuff. I would assume that attempts are made to poach them. They are really that good.

I keep on picking up bits and pieces of the surgery. Today I found out that when Nancy, Laurie, and Annie wanted to see the old liver (which I really thought they would do) they didn’t know quite how to handle it. Apparently of the thousands of transplants they have performed, we were the first ever to ask. So, they did what they do with any crazy person–they sent in the psychologist. I wish I could’ve been a fly on the wall. My family probably just kept digging the hole deeper by talking. I am sure the records now states "patient’s family has separation anxiety with patients old liver". One thing is for sure, I know we have been around too long. Today, Nancy’s twin sister Jane came for a visit. Everyone greeted her thinking she was Nancy on the elevator. Having a twin wife has its advantages.

I think I have now given away 50 boxes of Girl Scout cookies to the staff. Thanks Melissa for selling me all of those. Thin mints seem to be the prevailing favorite and I’ll probably be dead meat when I run out.

4 Responses to “The Impatient Patient”

  1. March 21, 2011 at 8:46 pm


    You continue to amaze me and make me laugh. You are such a joy to know and to be able to call you my friend. Given the leakage problem, you might have ’em check all the gaskets. 🙂

    Thanks for the updates.


  2. March 21, 2011 at 9:06 pm

    Anyone who understands the Girl Scout mint cookies are clearlt, always and forever, #1, will have a blessed life.

    And, so it is written.

    At least by this former Girl Scout.

  3. 3 Bonnie Munao
    March 22, 2011 at 6:59 am

    Hi Dan and Girls,
    So great to hear that all is going well and the drainage is under control. Dan, you certainly are an inspiration to all of us with minor health issues. Everyone should be inspired by your progress and outlook on this whole process. We are in Florida this week, Long Boat Key, with Andrea and Janette. On our way to Bush Gardens, today. Lots of sun and fun………..

    Love to all,

  4. 4 David F
    March 22, 2011 at 3:45 pm

    It really sounds as though you’re doing great!

    Keep the targeted impatience up! That’s a great motivator.

    Has the leaking subsided at all?

    And keep up with the “doing great” – it’s hearing stuff like that which is really motivating!


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