Wednesday, March 20, 2013

Life, one year later

  Well, it has been a couple of months now since my last update. I left off last January talking about Lois' endoscopy and my upcoming liver biopsy. We received the endoscopy results and things looked just as bad as we suspected.  Apparently the knot that the doctor tied during her last surgery has slipped again and we are going to have to reschedule another surgery. The problem with that is, the first surgery should have been a one time deal. Two surgeries are rare and a second one always complicates things because of scar tissue in the esophagus, creating a blockage in an area where a blockage is being repaired.  A third surgery is unheard of, so now we are kind of at a crossroads. We need to find a surgeon who is capable and willing to perform the surgery. They also found signs of dysplasia.
   This news has left us feeling a little despondent. The complexities of this situation are a bit overwhelming, so please, please keep Lois in your prayers.
   My liver biopsy and ultrasound showed a little liver rejection and a slight sign of inflammation, but that was remedied by my having my cyclosporine dosage raised. The numbers from my last labs evened things out.
   The biggest news this month was the celebration of my one year anniversary. I can't believe it has already been a year since my transplant.
   I think of the years that passed by one after another; the months that were marked by moons, and the days that I followed one by one. Every one of them so different from the other. I remember how I felt each and every day. I remember clinging to every moment. I remember leaving my nightlight on every time I went to bed because I was afraid to go sleep. It is impossible to describe all these things to you because there was just so much happening. And I remember the night I got that phone call.
   The phone rang at 12:15. I half expected what it was. And it didn't surprise me when they told me who it was. All the while, my mind grappling with the thought that someone lost their life. A mother and father lost a son or daughter. Maybe siblings sat somewhere crying over their loved one. These thoughts still confound me.
   I am thankful for this gift of life. And I can't even begin to describe this feeling that flows through me when I think about it all. I am forever grateful to my donor.
   Lois wrote a column about it for the newspaper and it ended up on the Donate Life site. Check it out here:
http://donatelife-organdonation.blogspot.com/2013/03/in-death-organ-donor-saved-my-family.html


6 comments:

  1. Beau, congratulations on your new "extra" birthday. I hope you always celebrate the occasion with cake and candles! I so enjoyed reading the article by Lois - she's an amazing woman with a true gift for writing.

    Every extra birthday is a gift. You deserve every single blessing that comes your way. Wishing you and yours every good thing.

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  2. One year - the journey continues.
    Miracles interspersed with heartache- we pray for yet another blessing for Lois.
    I am so very sorry about Lois, Please know my heart sends love. xo teri

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  3. Congrats on one year. It gets easier once you past the year mark! Some rejection early on is to be expected, I had some, but not seen anything like it since (and I get to say 10+ years now!) I know the feeling you are describing from the past. Every night I make sure there is a clear and easy acssible path to my bed. But now, you get to enjoy what the suffering stopped you from enjoying. Reap the rewards so to speak.

    I hope Lois surgery goes well. Perhaps, as scary as it sounds, some type of open procedure may work better. You are a strong family and I have no doubt in my mind that you will come through the other side with a smile on your face. I will keep her in my thoughts.

    Good to see you Beau. I hope you truly are enjoying things now.
    Take care
    Kim

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  4. Good wishes to Lois, she has a good heart and I am hoping for to good news about her healing and renewed good health.

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  5. I am so sorry to hear about Lois and I pray that by now, you have found some answers and that there is a wise surgeon who is willing to perform the surgery in a successful way. I am keeping Lois in my prayers.

    I cannot believe that it has been a year since your transplant surgery, Beaux!! I do remember all that you wrote about as you waited for your new liver. I am sad for the family who lost their loved one but very grateful that they were generous enough to save your life in the midst of their own tragedy. I am so glad to hear that you are doing well and that the increase in medication was able to stave off the rejection.

    I hope that your beautiful daughters are doing well and that your sweet puppy is growing up healthy and making everyone in your house smile daily!!! Puppies are hard work but definitely worth the trouble:)

    Take good care and know that you are still in my thoughts and prayers.

    Hugs,
    Deb

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  6. Just checking in. Sending blessing.xoxo

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