Lots of stuff happened at Vanderbilt this week.
1. I have started on ExJade and the doc is hopeful that it will only take 3 or 4 months to get my iron back down to more manageable levels. He says we will not try to get it back in normal range (50-150), but that we will go for around 500. Currently it seems to range between 4000-7000, depending on which lab does the testing.
2. We have started reducing my GenGraf - the anti-rejection drug I am taking. He wants me to start tapering it off in units of 25mg every two weeks. I will continue to have my blood checked every two weeks and we will see how all the tests look. As long as everything is good, I will keep tapering off this med and should be off of it by the first of September. Keeping my fingers crossed.
3. My eyes look good. No GvHD showing up in them. However, the eye doctor wants to keep me on the Restasis drops. On 25 May and 2 June I will have the cataract surgeries (left eye first, then right). My lenses will be being replaced with Restor lenses. In 80% of the people who get these, they never have to wear contacts or glasses again. The 20% that do will usually need some kind of reading glasses for close work. I am going to go for the 80%. :-) And I hope to be able to see to thread a needle again. Ever since I switched to monovision contacts that has been a problem. So I stay on the Restasis until a month after the last eye surgery, just as a preventative.
4. My regular blood counts (reds, whites, platelets, neutrophils) all remain good.
5. My kymerisms (sp?) also look good. One of them is at 100% and the other is at 95%. This is the percentage of my bone marrow that came from my donor. The one that is 95% is expected to be there until I am completely off of the anti-rejection meds. So everything is looking great!
6. My liver functions are better. Not yet normal, but the levels are down. Hooray! The doc says I can drink half a glass of wine a week now. He told me he has to say half a glass because patients always double what he tells them. LOL. Cheers!
This is the best report I have gotten in quite a while, so I am really thrilled. Now to work on getting rid of all this iron so I can get my strength back! Thanks to all of you for your continuing healing thoughts, prayers and support.
April 2017 Newsletter
3 hours ago