Monday, May 25, 2015

Monday May 25. memorial day


Happy Monday.  Life continues to smile on me this past week and weekend. My Mom was here helping with the transition home, getting me to clinic appointments, and helping Jim around the house. We were able to get to several of the kid's events as well (track and volleyball).  Thanks again Mom!

This weekend has been awesome despite my being at the clinic all three mornings. Emma joined me on Saturday and we went to a family party that evening (thanks Diane and John!!). I did not last too long but long enough to see some great friends who did not care one whit they were chatting with a masked and gloved Maureen (these precautions will last until the post-transplant 100 day Mark).

Good friends of ours (Jim and Denise and their two amazing daughters) brought dinner to us on Sunday for a fun little BBQ.  It has been beautiful here and a wonderful weekend.

On the medical side I continue to do well post transplant. At the clinic visits I give multiple vials of blood and my medical team uses these to monitor platelet count, white and red blood cell counts,  tacrolimus/sirolimus levels and the health of my kidney and liver.

I continue to take two immunosuppressive drugs tacrolimus and sirolimus to prevent or lessen Graft vs. Host disease.  At least twice a week I have blood tests to measure the concentration of both in my blood.   For reasons I won’t pretend to understand, the concentration can vary widely from week to week in the early weeks following the transplant.  A concentration that is higher than the established therapeutic range may increase the risk of associated toxicity, including damage to the kidneys, liver and nerves. A concentration that is too low may lead to Graft vs. Host disease (GVHD develops when the donor's immune cells mistakenly attack the patient's normal cells).  Sounds  a little scary but as long as my team is measuring the concentration of these drugs in my blood I am fine – as needed they simply adjust the amount of the drug (think more pills or less pills) to keep me in the therapeutic range.

The multiple clinic visits this weekend were primarily aimed at getting me back into the therapeutic range for the immunosuppressive drug concentration in my blood.  It is quite normal for the concentrations to vary in and out of the therapeutic range and my team always gets me back on track very quickly.  All other indications (lung, kidney, liver, blood counts) are just where they are supposed to be!

Off to read my novel and enjoy a quiet house.  Thank so much for checking in!


Love Maureen


11 comments:

  1. Hi Maureen! I'm sorry I've been out of the loop for a little awhile. May came and went so fast. Chelsea graduated 8th grade and you know, being familiar with this Catholic school milestone, this involves a retreat, an 8th grade musical, Marion Mass, amusement park day away, brunch, dance, parent get togethers, out of town guests, a grad party with older neighbors and friends who don't have an 8th grader graduating, and thank you notes. Whew! That and some school talks and wrapping up preschool end of year activities and coordinating 16 hand made Mother's Day gifts! All good things but just a wee bit distracting for my ADD brain! But enough about me...I am so happy to read your latest post and hear that everything is moving forwatd as it should and that you are transitioning home. What a long, courageous road it has been and you have not wavered in resilience, faith and a posirive attitude of hope and humor.......I admire you more than you will ever know!! Here's to a summer of renewed health and family time at home. Lots of love, Moe....xo Jenny

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  2. Hello Maureen,
    I am keeping up with your postings regularly and thinking about you daily. It's great to see that you have been home now getting lots of rest and catching up with all of Joseph's and Emma's doings and activities.
    Sending you lots of prayers and positive thoughts that you are getting better and gaining your strength. Please send my regards and hellos to your Mom for me.
    Love,
    Mike Q.

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  3. Finally, another post! I didn't realize how addicted I'd become to them until the no-news-is-good-news break. So happy to hear that all continues to proceed well. Keep up the good work, transplant!

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  4. Keep that good news coming!
    XXOO
    Gina & George

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  5. Hi Maureen,

    So good to get your good news. I keep thinking of you and am so bad a reaching out. It must be so wonderful to be at home again and attending your children's events.
    Warm wishes to you, your family and your supportive friends! Laura Seuschek

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  6. Hi, Maureen,
    Sorry I haven't checked in for a while but the kids have been busy with exams - a necessary rite of passage in this neck of the woods. All seems to be going well, fingers crossed. Everything still crossed for you. Sending all positive thoughts and much love,
    Riyad, Sarah, Emily and Jamie

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  7. Love that you're home & progressing along as you should! Miss you....Xoxo

    Pamela

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  8. Love that you're home & progressing along as you should! Miss you....Xoxo

    Pamela

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  9. Love that you're home & progressing along as you should! Miss you....Xoxo

    Pamela

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  10. Hoping and praying that no news is good news as far as post updates go.. Think of you often.. Hugs.

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  11. I love reading your posts, just continuing to pray for you and your family. Miss our talks, hope to do that soon. Take care

    Peggy

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