I know I promised to be more diligent about updating this blog but what had happened…….:) I started to get so many spam saying they were reading my blog. I was kind of upset because I didn’t want just anybody reading it. It was meant for friends, family and those that may have the same disease. I was getting 20 to 30 a day. At first I thought they were people interested in the disease but they all were spam wanting me to use whatever services they were promoting. I talked to administrator of this network and she confirmed that it was all spam. She ran some kind of filter through and I haven’t been receiving any.
So what does that got do with writing current updates?? Well as I became more involved in the transplant procedure I found myself too tired or just not feeling like it. I never thought I would get this behind!!
Today is day 70!! Woowho!!! So what does that mean? It means that I am 70 days out from
receiving my brothers cells and I have totally engrafted!! In other words I am making only
my brothers cells!! That is what want to see. Now this procedure has me very
immunocompromised. Especially because of immunosuppression drugs that I have to take daily
therefore we are at high, high risk for infection. Also certain viruses that you may have
had throughout life that stay dormant in your body after initial infection and never bother
you as long as you are healthy. CMV(cytomegalovirus), herpes virus including the strain that
causes cold sores and the strain that chicken pox/shingles are the main ones that can
resurface during transplant and mess your graft up. So they monitor us every week with a
blood test for CMV which is the one that can very serious if not fatal it starts infecting
your whole body. They want to know that is resurfacing before it causes symptoms. My test
titter-tottered for several weeks but seem not to hit the magic number. On day 30 the test
came back passing the magic number. I am treated with an anti-viral called Foscarnet for
four weeks. Well I have been on it a little longer because the level will not go back down
and stay down. It will fall one week and go back up the next week. This is happening because
they are adjusting the dosage because Foscarnet is irritating to the kidneys and they are
trying to protect my kidney function. So today I was just told it went up a smigen so they
are contemplating taking the dosage up. Like I said the virus is not making me sick but it
causes suppression of the bone marrow. I am making cells but the virus tries to stop it.
Until they get a couple weeks of not detectable, I won’t be able to come home.:/ As far as the transplant journey itself, it has gone very well and most days are uneventful. Again that is what they want to see. The Adult Bone Marrow/Transplant clinic where I get my trouble has a phenomenal program. They have 7 dedicated, very smart and wonderful doctors that are doing great things. The nursing and support staff are also top notch. They take very good care of us. I have been coming to the clinic since I was diagnosed in 2004. I am a familiar face around there and they spoil me! 🙂 Tommorrow I will talk about another procedure I will be doing called Donor Lymphocyte Infusion. Meanwhile everyone stay cool and out of the oppressive heat. Thank you for all your prayers and know that have faired well the last 70 days. I was sicker when I was in the hospital last fall than I am doing this transplant. I have had my puny days but nothing like last fall. May God continue to bless you all. Love,
Irene