20
Sep
11

…. And a good time was had by all


Things are going well. “Well” as defined as I think nothing ever happened….

We had five weeks on the Nancy D cruising areas of the Georgian Bay and Northern Lake Huron. We plied waters where we have never been including some uncharted stuff where Nancy was the bow watch. We left Port Kenosha on June 25th and arrived back the first week of August with one week in between where we flew back for business. Twice during our Canadian cruise I got my normal lab work. None of the folks we met in Canada care for the health system but for me it worked out well for me. In the USA the Lab work is about $365. I pay $20 and the insurance company picks up the rest at a discounted rate of about $180. In Canada I had to pay full retail cost myself. But it only cost $56. Something is screwy somewhere….

Today has been about 6- ½ months since my transplant. Two weeks ago was my six month check up. Everything is going well, no issues, and they have lowered all of my medication. My pills are about half of what they were. On March 1st, my one year mark, I enter the study to get off the anti-rejection drugs completely. There are some folks on the study that are on one Prograf a week. While I have no side effects from the drugs it will be nice to get off them completely.

Last night our family had one of the most spectacular nights ever. The American Liver Foundation (ALF) had their annual meeting in Chicago along with their magical dinner. The dinner was in honor of my friend Dr. Michael Abecassis who is Chief of the comprehensive transplant center at Northwestern. Mike is the guy that guided me and my family through our journey, so we were pleased for our family to honor him. This was HIS well-deserved night. At the dinner was Dr. Daniela Ladner, my lead surgeon. We also met the very first transplant patient from 1993 ( serial # 0001 – I am about Serial # 1200) who is doing just fine. As a family we consider these folks heroes doing what they do every day. It is a very tight net family with a holistic culture with the benefit going to the patient. Rarely do I see this kind of dedication in any profession. Any patient under their care is very lucky, indeed. Working with the “best of the best” is a privilege. Here are some photos of my family along with Dr. Ladner and Abecassis.

At the dinner was a silent auction. There was only one thing we bid on that we wanted – And we won!! Scrubbing in and watching a surgery. Now the only problem with that is it’s a back surgery. I would imagine the prize was given by some doc who needs his back operated on who figures anyone can watch. Regrettably I gave up my prize to Nancy. Five years ago Nancy had an artificial disk installed in her lower back, going through the abdomen . She negotiated with the doc that she wanted to stay awake and watch but they said no. So now Nancy gets to finally watch – on someone else. As for me I doubled the bid but said “For liver transplant only”. I thought – fat chance of that. But they took my money and I now feel I am in a strong negotiating position. Yes, I want to watch a liver transplant. So, I approached a few of my surgeon friends introducing myself as their new assistant. No one was impressed with my para-liver transplant surgeon skills and I could only picture myself tied to a chair with a gag in my mouth. I think the closest I’ll get is watching it on TV. And for those of you that want to do that, just tune in at:

http://www.orlive.com/montefiore/videos/patients-benefit-from-multidisciplinary-montefiore-liver-transplant-program/patients-benefit-from-multidisci/UPDATEAPP/false

This is a modified “made for TV” version, but I think you will get the drift.

Stay healthy and be proactive….


4 Responses to “…. And a good time was had by all”


  1. September 20, 2011 at 9:42 pm

    What a great post, Dan. You always bring a grin to my face when I read your posts. You and Nancy look fantastic. Thanks for the update. Jennifer and I celebrate your life and God’s blessing upon y’all.

  2. 2 Peter
    November 16, 2011 at 5:01 am

    hi Dan,

    I’ve been following your blog – what a story. Hope you are continuing to enjoy your recovery!

    May I ask, when you were diagnosed with cirrhosis in 2001 – did you have any symptoms? Any problems with bleeding varices, ascites or vitamin deficiencies? Just curious, as my cirrhosis was also caused by alcohol – I’ve no major symptoms yet, but I do have vitamin deficiencies and varices (which have yet to bleed) in my throat.

    Thanks

    Peter

  3. 3 Paul Hain
    January 2, 2012 at 7:24 pm

    Hi Dan,
    Your daughter Ann is a friend of Mike Cullen who saw my “help Paul find a liver” Facebook page. She gave me the link to your blog. I have enjoyed reading your story. I have Primary Sclerosing Cholangitis (PSC), the same disease Walter Payton “Sweetness” had. I need a transplant bad, but PSC does not measure on the MELD scoring method. My only option is a live donor. I am enrolled at Northwestern Memorial and know Dr. Abecasis . My fourth donor candidate, who incidentally, saw my Facebook page, was tested on 12/29/11. I should know on 1/5/12 whether she is a compatible donor. If yes, surgery will be scheduled very soon.

    I believe God has endowed people with a compassion to step forward and help others that just defies description. I have End-stage IV cirrhosis without cancer. I stay as active as I can. As you know, fatigue is a big issue. It really limits me. My wife, Dee helps me so much. Wives are the unsung heroes of fighting this disease. My neighbor who has watched me fight this disease and walk my dogs every day says I’m one tough bugger. But, I see it as necessary to never give up, even when you feel awful. If that is being tough, so be it.

    Feel free to contact me, if you want.

    Best wishes to you,

    Paul Hain

  4. January 25, 2012 at 4:08 am

    Hey ! Thanks for story and the link. I would have missed it but was bored poking around my blog! Wow, that is amazing about the study you are in. I’m so happy you don’t have side affects from prograf! I would LOVE to get off of it haha Have a wonderful week!


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