In spite of my recent blog whines (apologies), I'm still amazed at the miracle of modern medicine. At the beginning of December I'll celebrate seven years with my transplanted liver. SEVEN! I would never have imagined that this liver, which vexed me with so many complications for several years after my transplant, would prove to be strong enough to last this long. Granted, I have cirrhosis now (curses, Hepatitis C!) yet I've survived longer than I expected and I'm incredibly grateful to be here.
That said, do I have seven more years here on Earth? I doubt it, but there is little information for patients like me who are still alive many years after transplant. Furthermore, I want information that addresses Hepatitis C and cirrhosis in my transplanted liver.
For me, not knowing what to expect is torture. I'd like to know if I'll experience the same physical symptoms I had prior to my transplant. Also, I'm curious about my MELD score, which has been fairly consistent for the past two years. Will it slowly increase? How much longer will I live - I don't want an exact answer to this question but a general estimate would be helpful.
I'll continue to search for information and will share it in this blog.
Photo courtesy of Bayek, London, UK
Thursday, September 12, 2013
Monday, June 24, 2013
Good Grief! It's Only Cataract Surgery.
In a few hours my husband will take me to a local Ophthamology Surgery Center and my doctor will remove the cataract in my right eye that has grown and now affects my vision. The procedure sounds relatively simple, they're giving me enough sedation that I won't flip out when the doc cuts into my eye and considering the myriad other procedures and surgeries I've had, the surgery and recovery should be a breeze.
That said, I've had several brief episodes today where I was on the verge of tears about the surgery. Why? There seems to be no logical reason. It's such a minor procedure. I compare it to the challenge that faces one of my best friends from high school who recently learned that she has breast cancer. THAT'S worth crying over.
I believe I'm experiencing medical exhaustion. Hmm... does such a thing exist? I dread the whole pre-op process, IV stick, answering the same questions every doc asks, etc. I've done more than a lifetime's worth of this nonsense and just feel so overwhelmed and tired of it all.
Now that I've had a little pity party, it's time for me to put on my big-girl knickers and deal with the challenge in front of me. Thank you for letting me whine. The next post will be more useful and relevant - promise!
Photo courtesy of Lauri Koski
Friday, March 1, 2013
Life, Death and Liver Disease
One month ago today, my mother died from liver disease, which her doctor said was non-alcoholic fatty liver disease. Her death wasn't a shock since she'd been suffering for a number of years, but I was surprised at how quickly her condition deteriorated. My mother and I haven't been close for many years, but her death leaves me feeling sad, depressed and very mortal.
I've been terribly negligent about keeping this blog updated. Here's where I stand in my journey: I describe myself as being on "maintenance" status with my transplant center. By this, I mean that I'm not a candidate for any available treatments, so I have blood tests every three months and we track my MELD score. For the past few tests, my MELD score has remained constant - 12 - which is pretty good (relatively speaking). My next set of labs will be drawn in about two weeks.
There's much more to share, but I'm too blue to write about all of it now. Before I go, a quick shout-out to Beaux and his successful transplant. I'm encouraged to read about every bit of progress there is. To those of you awaiting transplant, may you find peace in your trial. And to those who have had transplants and are struggling to achieve a "normal" life, please know that awaits. Normal will be different, but it will feel oh, so good!
I've been terribly negligent about keeping this blog updated. Here's where I stand in my journey: I describe myself as being on "maintenance" status with my transplant center. By this, I mean that I'm not a candidate for any available treatments, so I have blood tests every three months and we track my MELD score. For the past few tests, my MELD score has remained constant - 12 - which is pretty good (relatively speaking). My next set of labs will be drawn in about two weeks.
There's much more to share, but I'm too blue to write about all of it now. Before I go, a quick shout-out to Beaux and his successful transplant. I'm encouraged to read about every bit of progress there is. To those of you awaiting transplant, may you find peace in your trial. And to those who have had transplants and are struggling to achieve a "normal" life, please know that awaits. Normal will be different, but it will feel oh, so good!
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