I've been waiting for some good news to write an update, but have been feeling pretty under the weather lately. The good news is the results from my 100 day workup in NY finally arrived (about a month after it was done...) - my bone marrow still shows 100% donor cells and the goal was >90%, so this is great! Also, my kappa light chains are still 0, so there is no detectable cancer in my blood, urine, or bone marrow!!
So the reason for being under the weather has been my BK virus, which is still persisting in my blood, although it's now going down. One of the tests during my last hospital stay was a lumbar puncture (aka "spinal tap"), which seems to have given me a "spinal headache" now for the past 3 weeks. Needless to say, this has been no fun at all and has caused a lot of nausea along with the headaches. The nausea made it difficult to eat and drink very much, which has caused my creatinine to go up, which has made the BMT docs have to hold my Cidofovir (the antiviral treatment for BK)...it's a bloody vicious circle. So they admitted me to hospital again yesterday to try to figure out what is going on. So this morning I had an MRI of my head and another lumbar puncture (they want to make sure they aren't missing anything by assuming this is all related to a spinal headache), but this time they did a blood patch which means that they took some of my blood out of my arm and injected into my spinal fluid to help the puncture sites clot and heal. The rest of the day I've spent lying on my back, as I'm very sore and now having back spasms. It seems that every test and procedure lead to another problem.
Tomorrow is my "day off", so all I have to do is rest and relax. Then on Monday morning I have the joy of having an upper and lower endoscopy (EGD and colonoscopy) to test my bowels for viruses and GVHD. Both Dr. McGuirk here at KU and Dr. Koehne at MSK think that it's most likely viral and the risk of GVHD is low, so that's good. At least I get some good sedation for that procedure! I'm looking forward to a nice nap :)
Sorry again for not blogging for so long...I've just felt pretty bad and was waiting for some good news to write about.
Oh gee! Wishing you were feeling much better. On the up side, I am extremely happy to hear that the transplant has been successful. Prayers that the virus takes a hike and soon! Let us know when visits are ok. WE have been passing bugs around here but all seem well now. Hang in there, we are praying for better days.
ReplyDeleteJanet
Thinking of you and hope you have good news today. Tom and I got to see Sophie and James Saturday. It was great to see them!
ReplyDeleteYou are still in our prayer,
Kathy
So sorry to hear that you are still feeling so badly. Praying for you to overcome that annoying virus. Just remember to stay positive ( I know that is easier said than done) but I know that it can help the process. You and Kristy are amazingly optomistic people and I find encouragement when I am around you two! We love you guys and can't wait unitl we can visit with you! Let us know if there is anything that we can do!
ReplyDeleteJessica