I have an update on Bea’s health that I debated sharing but going along with our mentality of the more people thinking and praying for Beazy the better – I think it’s a good move.
As you know (or may not depending on how new you are to the blog), Bea contracted EBV which is known as Epstein-Barr Virus. EBV is a virus that causes mono and she likely got EBV from my liver. I must have had mono at one point (and never knew it) and it has just been living inside of me and was transferred over to Miss Bea.
The scary part about EBV is that it can really mess with your insides if the number gets high enough. It can cause blood in your stool, your numbers to jump around like crazy and the worst part, PTLD. PTLD is Post-transplant lymphoproliferative disorder…basically lymphoma in post transplanted patients.
Sometimes, EBV can just jump around and not cause much damage (which is what has been happening). The number goes up, we adjust her medication, it comes down. Then it goes up, we adjust her medication, it comes down, etc etc.
And as we are changing her meds we are hoping her liver doesn’t reject. It is a total balancing act.
Bea had a recent major uptick in her EBV so for the first time, her liver doc called for a CT scan on April 13th to look for any swollen lymph nodes which would indicate PTLD.
The process of the CT scan itself was scary. We took her to the hospital, dressed her in a gown (which was NOT very cute – shame on me for not thinking to make one for her!), and prepped her for anesthesia. Not fun.
Watching them put Bea under was one of the scariest things that has happened. Holding a gas mask to her face while looking at her and trying to reassure her while the whole time she is fighting. Her eyes finally roll back but her limbs are still twitching – I don’t wish it on anyone.
After that nightmare was over we waited. Once we were called back to see Bea they told us that when she started waking up from sedation, she ripped out her breathing tube and her IV. Blood was everywhere and thats why she was hysterical and only in her diaper.
Overall, not an experience I want to repeat.
The rest of the day was chill. Miss Bea got into our bed and watched one of her favorite movies – Finding Dory – while we anxiously awaited the results.
Through the scan, Dr Campbell DID see swollen lymph nodes that could potentially be PTLD. The only saving grace and why they can’t make a call on whether or not she has PTLD is that Bea also has a cold and sometimes when you have a cold, your lymph nodes swell.
SO – we had a repeat CT scan scheduled for yesterday (May 16th). Bea got another cold so we had to reschedule, her next CT scan is scheduled for May 25th and hopefully we have more answers then.
In the meantime we are decreasing her immunosuppressants to help her body fight the EBV. We have been getting labs each week and her EBV number has come back a little lower (but still higher than her normal) and her platelets and red blood cells have decreased. Not a great sign but also could be from the cold she has. It’s just so hard to tell.
SO – although she is picture perfect from the outside, her insides are worrying us. A lot. Your thoughts and prayers are always appreciated and we are continuing to (try and) keep the faith.