Day +15 and +16: Chag Sameach

Alexx here.  Mom still doesn’t feel like writing but she sends her love.

April 22nd and 23rd: Day +15 and Day +16

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Developed a low grade fever overnight to 38.0C or 100.4F.  Since I have neutrophils it isn’t such an emergency, but it’s still a new problem for me.  Hopefully it isn’t a serious infection.  They did a CT of my sinuses because I have been complaining of nasal congestion and headaches.  I get sinus headaches at home and this feels similar.  The CT showed “fluid” in my sinuses, but they said it doesn’t look fungal.  They also sent blood cultures and urine cultures.  The infectious disease team is following closely.  For now I will continue on the meropenem and fluconazole, they aren’t going to add anything new.  Alexx has some questions for them regarding the work up–but since it’s Passover/Shabbat there are few doctors here.

My cough is a little worse and I need to be on oxygen again. Thankfully only a small amount. About 1-2L. The doctors say it might be  atelectasis which is a partial collapse of the lung.  This is because I spend most of my days in bed laying flat and I’m not taking normal breaths.  We are now making an effort to get me into the the chair for more time during the day.  I also started using the incentive spirometer once every hour and I do the exercises that the chest physiotherapist showed me.  The cough could also be fluid, and hopefully it’s not pneumonia.  The last CT Chest done earlier this week didn’t show evidence of pneumonia.

Team Kaiser!!  Ric just finished working out my legs. Dakota is gently tapping on my back for chest PT.

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My WBC and ANC have now normalized.  Today is my last day of Neupogen.  My platelets still have not engrafted, but Alexx says this usually occurs after the WBC.  So for now I get platelet transfusions almost every day.

My albumin is slowly creeping up. It was 2.6 today. My abdomen still causes me a lot of discomfort but my kids are convinced that it is smaller and softer.  I am no longer 9 months pregnant, now maybe about 7 months! My abdomen is the main source of my frustration and I just want to feel normal.  I am afraid to try eating again.  I’m still only having very small sips of water.

Since my WBC are normal and my platelets are better I can start brushing my teeth again.  What a magically cleansing experience that was.

imageMy blood pressures are still really high, 160-190/85-105.  Alexx is very frustrated by this and doesn’t understand by the team isn’t concerned and  not intervening.  She did a lot of research on the computer tonight and has a long list of questions for the doctors tomorrow.  There is another lab value, called LDH, that has been rising over the past week and is now 1900.  Alexx is going to ask about that tomorrow too.

It’s now Passover in Israel and it was very hard to be away from home for this holiday.  We always have a big Seder with the entire family and I cook a lot of food.  I missed the matzoh ball soup, gefilte fish and brisket.  And the traditions we have established over the years.  At the end of the Seder the Haggadah says, “Next year in Jerusalem”.  Well this year our wish is for “Next year in Long Beach!”.

imageIt’s very hard for me to see any progress, but my family and the doctors keep telling me how much better I am.  I just try to take it day by day; it’s become very hard for me to stay positive.  My family gives me pep talks throughout the day. Hopefully tomorrow will be a better day.

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4 thoughts on “Day +15 and +16: Chag Sameach

  1. Keep up the good fight, Andrea! You are an inspiration to those of us that hope we can be HSCT Warriors, too! I am 60 years old with Secondary Progressive MS after 20 years of it. You are amazing! Sending good thoughts! Karen

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  2. Andi–you are a strong person–like your mother and nanny were. you will get better!! Keep working on it. And you have your whole family with you…

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  3. Love u Andi. ❤️ We missed you so much at our Seders. My soup doesn’t come close to yours, and the table seemed so empty. Passover just isn’t the same without you and your family. We are going to make up for it when you come home, with a family celebration for the record books!
    Hang in there sweet Aviva, and you will get better and stronger every day. I miss u & love u & can’t wait to hug u again! ❤️❤️❤️❤️❤️

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