Tuesday, January 27, 2009

5 Months!

It has been 5 months now since I have been listed. As I have mentioned before, I was told because of my blood type I was probably looking at a 2 year to 2 and a half year window for a transplant. Now that I have almost seen my way through that first half year, I am going to start counting down in quarters beginning next month. For now I am going to pat myself on the back for getting through these past few months without a lot trouble.

It hasn't been easy though. I am really starting to notice many changes in my body. I have gone up in weight and size and that bugs me sometimes. My stomach has swelled out a lot and I continue to rub it like its a new appendage. My psoriasis is much better due to the fact that I am taking Embrel shots and even though they hurt like hell I feel better. I still wrestle with my sleeping issues at night, but I am no longer afraid of the dark. I missed how that happened, but I noticed it last week when I reached over one night to turn off my nightlight and it occurred to me that I had been doing it for the past couple of weeks. Strangely enough I still grab the tiny led lights that fit in the palm in my hand and hold on to them or leave them next to my pillow from time to time.

But there are still the emotional things I deal with that I don't talk about. That's where this writing thing has come in handy. And I really feel a lot of pain these days. All the way to the bone. I will have to bring this up with the doctor.

So...I am happy that time has moved forward and the effects of this disease have not been as harsh on me as they might have been.


  1. I've just discovered your blog and wanted to introduce myself. I'm Jay - wife, mom, liver transplant recipient (nearly 26 months ago) and Hep C patient. My heart goes out to you - the waiting is SO TOUGH! I discovered that I needed a transplant in May 2006, was listed at the end of Nov that year and had my transplant 4 days later
    (12.3.06) - my MELD score was 24 at the time, so I pretty much went to the top of the list.

    I started a blog last fall to, hopefully, help other people on the same journey. It was and still is so difficult to find useful info - I search constantly when new things pop up, and often with few helpful results. Please feel free to visit: www.thedocdidnttellme.blogspot.com. I'm going to add a link to your blog and please feel free to do the same in return.

    You're also welcome to leave me a message with your email address, if you wish to email directly. I'm happy to share all I can. Good luck and God bless!

  2. You are on my mind and I wish I could offer real help. I do offer witness to what you are having to deal with.

    I have a cousin with Hep
    C and also a dear friend. It is simply more than difficult. I hope you have someone to talk with in you other world. Know that you can write to me. I know I do not truly understand. I can truly listen