Hi Debra,
I assume you don't have results yet from the visit. So a couple of things to think about.
1 - I would ask for your dad's chem panel to be done weekly to see if over the next month his creatinine starts to drop over the next 4 - 6 weeks after stopping the Exjade.
2 - Is your dad on procrit? The kidneys produce the red cell growth hormone called EPO. They should check his EPO levels. It's pretty much accepted that if your natural EPO levels are less than 500, then there's good chance that Procrit could help those with SAA. Procrit was first used for those in kidney failure because they no longer produce EPO. Your doc should be able to make a case to try procrit.
3 - Are they checking his absolute retic count and percentage. This is good to track to see if there's an increase. An upward trend usually means your body is starting to produce more of its own red cells. Reticulocytes are immature red cells. As this increases, you should see a spacing out of red cell transfusions.
4 - I hope they did a sonogram of your dad's kidneys. They did John's when his creatinine was elevated to look for fluid build-up around the kidneys.
5 - Does your dad have edema? If fluid retention is not problem, then I would discuss with the doc to stop the lasix since it's hard on the kidneys.
6- People with iron overload are ususally deficient in Vitamin E and Vitamin C. You may want to look into adding that in.
7 - Finally, its been a while since John was on deseferal but i would ask your doc about it. Unfortunately, the kidnesy do the work when it comes to excreting the iron with desferal. While Exjade excretes via the feces. But....I do believe that desferal is easier on the body. If your dad has a central line, then he can do it via the port. Go to
www.rxlist.com and you see lots of data on it.
8 - What are they saying about the impact the cyclo is having on his kidneys? There may be more kidney friendly immunosuppressant out there. You may get a more comprehensive evaluation if you go to MD Anderson. It really does make a difference when dealing with docs who know this disease.
IMO, I don't think the spike from 3000 to 4000 in the FE correlates to additional iron build up. It won't jump that much in two weeks from a transfusion.
It is very frustrating to have to deal with doctors who know nothing about what you are going through. As I type this, our doc is going head to head with the medical director at the blood donor services. They are refusing to do therapeutic phelbotomies on John. Of course they waited until we showed up for our appointment, kept us waiting for 45 minutes and then the doctor, who's never even looked at John's file, decides she doesn't want to do it. Mind you, he's had them done there in the past when his counts were not as good as they are now. Since she doesn't understand all of this, and chooses not to find out, she just says no.
Hang in there and take it a day at a time.
Marlene