Home » AL Amyloidosis » Stem Cell Transplant Day +11

Stem Cell Transplant Day +11

Yesterday (SCT Day +10)  Josh hit rock bottom, the night before he developed a fever, but yesterday morning when I arrived at the hospital he was playing gin rummy with his mother and had a fever of 103.6.  HIs blood pressure plummeted and he was placed on levophed to bring it up to safe levels.  Unfortunately, on levophed he is not allowed to walk because of the risk of falling. With 103 fever, Josh did a couple mock fantasy football drafts. He is bad at doing nothing. His brain is always moving. Josh breezed through post transplant days +4 through +9, walking 3.5 miles a day, and although we expected a fall, we didn’t realize how awful that fall would be.

Yesterday Josh’s temperature hovered around a 104 degrees with a couple of respites and moments of lucidity when his temp when down to 101. HIs white blood cell count was 0, after temporarily rising the day before. At one point the nurse read a temperature of 107 degrees, scary, but I think it was a misread and his temp was actually 104.6. We were moved into the bone marrow transplant ICU in the evening and he was put in bed with an ice blanket. He was given granix shots to boost blood production in his bone marrow. The granix caused unbearable pain in his femur and hips (the two major marrow producers). I don’t think he slept for more than an hour last night.

Fevers are normal with bone marrow transplant patients. We have been told that 99% of people get fevers at some point during transplant. A couple nurses said that extremely high fevers 104-107 degrees are often signs of engraftment (where the body is accepting the new stem cells).  Young men getting bone marrow transplants are extremely susceptible to these spikes in temperature. We are thinking that Josh’s body went into overdrive to produce the stem cells for collection, so maybe this is what is happening with Josh’s fevers.

The other possible cause of the high fevers is an infection. He is being treated with antibiotics. He had a chest x-ray yesterday, which showed a little fluid and he will have a CT scan of his chest today.

The ICU room has big windows. We have one of our favorite nurses and Josh’s personal doctor who is an expert in Amyloidosis is doing rounds this weekend. I miraculously slept through the night on the cot next to Josh. The high fevers aren’t shocking to any of the staff, just terrifying to those of us that love Josh.

Although it is painful for all of us to be separated from the kids, they are well cared for. They were with my mom last night and will be with Bonnie tonight. Their days have been full with adventure camp (kayaking, mountain biking, rock climbing, stand up paddle boarding, hiking), friends, and fun. Our baby is with our wonderful nanny, who literally fell down from the stars to help me out these past couple of months. I hope we can get Josh home before August 22nd, when the girls start school, but most importantly I hope Josh starts feeling betters, his numbers come up, fevers go down, and these new stem cells bring a long chemo free life. I love him so much.


4 thoughts on “Stem Cell Transplant Day +11

  1. Oh my… Justine, What a voyage you and Josh are on. Thank you so much for these posts. What a gift to your family and friends that we can read them at this anxious time. We all love you and Josh so much.

  2. We’re rooting for josh from NYC!! What an incredible fighter he is! Thank you so much for taking the time to share these updates… Big hugs and prayers to your beautiful fam.

  3. Justine, I am an amyloidosis patient who anticipates having a stem cell transplant in the near future. I have enjoyed each of your posts about your husbands’ transplant. You are a wonderful writer and are providing an important insight that only someone going through this can provide. Thank you so much!

    • Hi Denise, Thank you for your comment. It makes me feel good to think I can provide support or knowledge to those who are on our same journey. Good luck in your recovery.

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