Ups and downs

This is Alexx, updating for Mom.  She wanted to say that she will return everyone’s calls and texts when she is feeling better.  It’s been a rocky few days.

Friday May 13th Day +36

I have a UTI (urinary tract infection).  Fever of 101 and bacteria in my urine.  They put me on an IV antibiotic (Ceftriaxone). I feel more tired than usual, but otherwise not too sick.  Just frustrated that I can’t seem to catch a break.  But I know it could always be worse.  I just want to start recovering and learning to walk again.  One day at time.

They took the Foley catheter out and I am having issues with retention, a symptom I have had a long time from my MS.  However, I had a foley in for 6 weeks so maybe my bladder just needs to wake up and remember how to work.  They started me back on my retention medication.

Alexx, Dakota, and Ricky all came to visit today. I love my family.

Saturday May 14th Day +37


I found out I have Epstein Barr Virus (EBV) Viremia, a complication of the ATG I received.  They said I had 30,000 copies of the virus in my blood.  This could be causing my fever and also explain why my counts are a little lower. They are going to give me a treatment today called Rituxan to treat the EBV.  Hopefully it works and doesn’t make me feel too sick.

My bladder still isn’t working properly. Hopefully soon.   I didn’t expect to be at Columbia for this long, but taking it day by day.  Moment by moment.

I reacted to the Rituxan with fever and lower blood pressures but they controlled it well.

Sunday May 15h Day +38


Today was a quiet day.  They had a walk in my honor on the Long Beach boardwalk to raise money for stem cell research.  All of our close family and friends marched in my honor.

Then Ric, Risa, and Steven came to visit.  I felt good.

Monday May 16th Day +39

Bad night.  Developed fevers and chills.  My cough was worse and I wasn’t feeling well.  My blood pressure was on the lower side (90s/60s) so they gave me more IV fluids and they added Vancomycin.  I went for a CT Chest which showed a consolidation in my right lung which could possibly be an “atypical pneumonia” or possibly asymmetrical pulmonary edema (fluid in the lungs).  They consulted the infectious disease and pulmonology specialists to discuss my case.  They broadened my antibiotics to Cefepime/Vanc/Flagyl and will possibly do a bronchoscopy if needed.  My temperature was as high as 103.5 today but with Tylenol and antibiotics it’s improved.  My blood pressure responded to the fluids.  My heart rate is fast and I need 3-4L of oxygen through a face mask (probably from all of the fluids and maybe also the pneumonia).   I also had an Echocardiogram done of my heart to make sure it is functioning properly.  My family is at my side.  I didn’t sleep all night so I was pretty tired and out of it today.

My EBV is higher at 400,000 copies but they might have rechecked it too soon for the Rituxan to have taken effect.  I’ll likely get another dose of it this week.  The reason for all of these complications is the ATG.  It depleted my T cells which are important cells to fight infection.  My CD4 count is 8, extremely low.  It can take some time to recover and until then I am at risk for opportunistic infections. Hopefully this will be the last of it.

A rabbi came to chat with Alexx and Ric today, he is a member of the Pastoral Care team at CUMC.  He offered them support and said a special prayer for me.  There is a minion at the hospital that prays every day during Mincha for a list of sick people in the hospital (if requested) and they added my name to that list.  Every little bit helps.

As of 6pm I am feeling a bit more awake and my oxygen is good via the nasal cannula.I drank an entire ensure.   My bladder still isn’t functioning properly so I get straight cathed every 6 hours.  But at least I am making urine!  Alexx is spending the night and hopefully tomorrow will be better.

Love and light.  I miss you all so so much.


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