The Rollercoaster

OK, so maybe my expectations were unrealistic but I really thought I would be feeling pretty great by now.  I think they even told me that the recipient felt better so quickly he/she often left the donor in the dust.  Well for me, not so much.  Yesterday I felt really terrible.  I have lots of reasons – the incision hurts, my red blood count is really low, the drugs suck, I developed a urinary tract infection and on top of it all, I stopped taking my estrogen so I am getting hot flashes.  As I mentioned earlier the prednisone makes you feel really terrible, like you are racing, and I am nauseated and don’t have an appetite.  My face is already getting cushinoid, that fat face that is associated with steroid use.  It’s enough to send a person over the edge! I am so glad that Sarah is feeling well however and she was able to travel back to New Mexico.

Today I had an appointment at the transplant clinic – I got the first of four post-transplant doses of eculizumab, the drug that is hopefully going to keep the HUS from recurring.  The clinic itself is a bit of an ordeal.  You go in between 7-8am and get your blood drawn, then they wait until the results come back and see you on a first-come first-served basis.  We didn’t leave until after 1pm.  My red blood count was up a little bit- to 25. I do have a UTI so started antibiotics.  My creatinine, the measure of Brutus’ function, was elevated, to 1.32.  Possible reasons include the infection, a dose of Bactrim that I took yesterday, or possible early rejection.

Despite that, I am actually feeling much better today both physically and emotionally.  The doctors were very positive.  UTIs are common because of the catheter. The blood that I am still having in my urine is to be expected because of the stent in my  bladder.  They did an ultrasound to look at Brutus and everything looked OK.  I will go back tomorrow for more lab results and if the creatinine is still elevated they will probably do a biopsy to see what is going on.

I am feeling optimistic – I ate better today,  my children are giggling nonstop which is SO cute, it was a beautiful Denver Indian summer day, and it is supposed to be in the high 70s tomorrow.  I think my labs will be better tomorrow.  My mood, of course, is conditional on Gretchen not winning tonight on Project Runway.  If she wins, I am going to sink into a deep depression because clearly all is not right in the world.


5 thoughts on “The Rollercoaster

  1. Holy smokes- yes! If she wins I will barf!!
    Sorry you are having a tough go recently. Try to eat! Thinking of both you and Sarah!

  2. Hindy Tankenoff

    Keep up the good attitude and positive thoughts
    Team Mondo!

  3. Beth Korinek and CPEP

    Lisa, thank you for sharing your progress with us. I met with Fred, Anne, Bill and John Smith earlier this week and they all send their warmest thoughts and wishes to you. Hang in there and give those babies lots of love!

    Beth and CPEP

  4. Lisa: Glad you feeling better! I can’t believe Gretchen won…….ugh! Takec are. Dawn

  5. Lisa,
    I am thinking about you and hoping the rollercoaster ride is heading in a positive direction! Hope you, Daniel and Sophie are able to enjoy Halloween. Hugs to you all.

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