Thursday, February 5, 2009

Day 9 - Surviving the Rough Patches

We've had a few rough days, but Tyler is hanging in there. He just feels generally crappy some days, and that's hard to take. He's been so strong and healthy for 40+ years that to be increasingly sick over the last 6 months has taken a big toll on his spirits. He's having trouble sleeping and eating, but that is to be expected for this period of the transplant and in hospital life. Thankfully his mucousitis is nowhere near the pain that he experienced in the fall and he is still eating lots of different foods.

The doctors have been a little bit concerned because Tyler doesn't sem to be holding on to his platelets right now. Every day he is at about 10 (when normal ranges are 150-400). He gets a bag of platelets and we would expect to see a bump of about 10, but he just isn't getting the expected bump in his counts. Getting transfusions isn't a big deal anymore, but it's just one more thing added to our day.

They tested him for antibodies to Platelets and we are relieved that he still hasn't formed antibodies to them. Apparently, after many transfusions, your body will actually develop a resistance to blood products. This makes it much more difficult for the patient to get a transfusion bump, as their body will kill off the "foreign" cells.

We are hanging in there, but he is starting to crave some new foods. We find that moist foods work best with his sore throat, so he eats a lot of soup and drinks shakes. He mentioned today that he might have me smuggle in some frozen dinners to have some new food options. I'm eating more than my share, but Tyler thinks the food here could be improved.

Sorry for the long delay in posting. I know that several people are waiting to hear the news, especially considering that this is such a big deal in our lives. Thanks for bearing with us and reminding me to post if I go to long. :)

2 comments:

  1. Our thoughts and prayers are with you both every day. --Leanne & Pat

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  2. Mandy and Tyler,

    I read up often, don't know if Hans told you.

    I just took over the PV tournament as my company did not want me to do it through them any longer, so my husband, Dean, is going to do all of the organization. We formed an LLC and I designed a website – LOL, what a joke of a site it is! I’m not “techie” at all (despite that, I am waiting for pics to put up from your team’s early years on) to add to www.soccerpv.com. Anyway, I felt a need to tell you I check in with your blog every few days.

    Mandy, I really appreciate all of the time you take to write the posts. I just know you and Ty will be back to take part in the tourney in PV again and I can’t thank you both enough for all of the support over the years. I know I should have written sooner, after reading for so long, but there is no time like now to finally write and tell you that there are more people than you would ever know rooting for Ty and reading your posts. I know words are ineffective, but I know support is affective and I love you both and think of you often – Catrina

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