This is Day #57. It seems like ages ago that the bone marrow transplant happened. What is routine now was unimaginable 57 days ago. Grinding through. Wednesday was our long day with labs, doctor visit, and ECP light therapy in the afternoon for 4 hours. I now have my routine of napping on a hospital bench outside ECP for part of the treatment time. I am not the only spouse or parent doing the same. It is a quiet location, and the nurses bring us pre-warmed blankets and pillows. Seven patients are treated at a time in ECP: 7 in the morning and 7 in the afternoon. To have ECP, your platelets can't be too low, so Ron had had a platelets transfusion on Monday.
The doc has put Ron on scheduled pain med instead as "take as needed" so he does not have peaks of bladder- related pain. As the BK virus subsides, he will have more relief. The "copies" (count) of both viruses is going down/ improving. He is also taking less steroids each week, so the treatment for the viruses will be more effective.
What's next? On Friday Ron will have 2 infusion treatments. One is the 3rd treatment for the viruses. This week's infusion is 20% of last week's dose so not nearly as toxic. The doc likes to use military terminology with Ron, and he called last week's infusion the really big mortars--- which led to a weapons discussion. On Friday he will also have an IV IG treatment to boost his immune system which is very low. This will be a 6-7 hour outing for us. They will also do lab tests again to check CBC and electrolytes. He started new meds for potassium and phosphorus this week. A person's body is a finely tuned engine! Next week a monthly breathing treatment will be added to prevent PCP pneumonia, and he will have a bone strengthening infusion.
Today Elizabeth, Ron's visiting nurse, is making a visit and she will set up Ron's physical therapy which has been prescribed for 3 months-- starting in our apartment and hopefully, ending in Coldwater, MI, near home. Another new member of Ron's medical team is a pharmacist, Shannon, who met with us during the clinic visit regarding all medications.
This was a load of new information. Daily blogs spread it out, but some days are just too full to blog. Writing continues to not only be good therapy for me but a way to record Ron's journey and best of all, a great way to communicate with family and friends.
Love to everyone and thanks for your continued support in so many ways.
Love, Ron & Jan
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I printed out everything we posted on Care Pages & all the friends responses and made a book for Laurie & a book for me. She spent a lot of time reading all the posts to her which gave her strength when she needed it. I will always have my book & look at it occasionally. Love to you both. Ann & Bob
ReplyDeleteThere you go again! That is a great idea.
ReplyDeleteMany people have told me that they cannot get a comment to post on this blog; that has even happened to me. I know many read it regularly, and I read the comments to Ron. I also read his email to him. He has difficulty emailing when he is on certain meds.
Thanks again,
Jan