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

Tuesday May 12

Last Thursday I returned home to North Andover in time for Emma's National Junior Honors Society ceremony, her volleyball game, Joseph's track meet and Mother's Day.  Thanks again to my cousins for their hospitality as I stayed with them in their beautiful Brookline home close to the hospital until  the  Doctor's were ready to set me lose on the North Shore/Merrimack Valley.  My Aunt Debbie escorted me back and forth to the hospital while  I was in Boston.  Now that I am home, my Mom is in town taking me to the clinic every few days to get blood drawn and make sure my levels remain okay - so far so good and the medical team remains very happy with my progress.

Interestingly the transition home has been a little challenging.  There is much I can't do just yet but it will all come in good time.  It is nice having my Mom here and we also had a nice visit with my Jim's sister Gina and her husband George.

Wonderful seeing everyone I've managed to run into so far - getting some good rest and so very grateful to be home.

Thanks for checking in and talk to you all soon

With love
Maureen

Wednesday May 6th

Good afternoon!
Another encouraging day at the clinic.  I am now  at 100% of my donor''s immune system which is as good as it can get at this point.  My Mom arrived today and will be both my great comfort and my chauffeur to/from clinic visits in the upcoming weeks.

On the health front...My creatinine level (kidney function indicator) continues to trend downward -  this has been a challenge to manage given the insult to my kidney from the  chemo combined with some of the drugs I am taking.  Anyway we saw a significant drop from last week which is awesome!

All this plus my my strong blood counts bode very well for my recovery.

I will let you know when life brings me back to North Andover.  Thanks for checking in

With Love
Maureen

Monday May 4th

Greetings to my wonderful friends and family!  I am out of the hospital (again!) after my last trip from the emergency room.  What an incredible team at Beth Israel so quickly diagnosing the reasons for my labored breathing.  I  was discharged to the capable and loving home of my cousin Mark, his wife Karen and my Aunt Debbie.  Mark and Karen live three blocks from the clinic and the walk too/from has been restorative (and gets a little easier every day).  Aunt Debbie (who lives in Sharon, MA and is staying with us at Mark and Karen's) has been my companion for the trips to the clinic and my Mom takes over again on Wednesday May 7.

Joseph returned from Spain and it was wonderful seeing him, Emma and Jim over the weekend.  He had an amazing time (those of you who are privy to his snap chat story can tell me just how amazing - wait, don't tell me :).  My dear friend Denise Rao Monahan spent the evening with me Sunday and made me a beautiful dinner.

Each day the news gets a bit better for my health.  The main measurements for now are my blood counts - virtually all of which are now my donors.  White cells back to normal and platelets climbing. Also. my creatinine was getting a bit out of whack (again!!) but stabilized and is not coming down.  This is great news as it tells me my kidneys are getting stronger.  Also it helps the doctor's know they are on the right track with the levels of some of the drugs I am taking to fight graft vs host disease (see earlier posts).

I was talking to Emma and we were listing the holidays I missed including Christmas, New Years Eve, Easter, Valentines Day - she also mentioned International Dance Day and my cousin Mark mentioned Law Day.  Enough already!!  Actually Emma had great humor and acceptance about this whole journey - I can learn a lot from her :)

For now I am still going into the clinic every day - next step is home to North Andover.  I hesitate to attach a date to my return home - last time I thought I was going home I ended up in an ambulance going to the emergency room followed by re-admittance into Beth Israel.  BUT - the perennial optimist - should things stay stable this week I may be headed home by the end of the week.

Thank you for all  your love, prayers, and support.  I am so very blessed.

Thanks for checking in
Love
Maureen