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Hi Marlene, and thank you for this info. Changing docs has had it's challenges. Though we remain in the same practice, the new doc needs to get up to speed on dad's history. It's like starting all over!!
* Dad does receive Procrit, but not regularly. I am wondering if it would make a difference in his rbc if he were to receive it on a more regular basis?
* To my knowledge, they are not checking his absolute retic count, and I will ask about that. Is that part of the CBC?
*He had a sonogram yesterday. The nephrologist did mention changing the cyclosporine to something less toxic on the kidneys.
*Dad had 2 units of RBC yesterday, with no lasix. Since Dad has not had edema in quite some time, we will be much more stingy with its use! Thankfully, the nurses at the outpatient clinic explained more about transfusions, fluid overload, urine output, etc. They are confident he is doing fine without the lasix!
*Dad is scheduled for more blood work and a 24 hr. urine test, but we were waiting until after his transfusion. The lab told us they need about 7 vials of blood to run all the tests ordered!! Since he got the trans. yesterday, we will do labs early next week.
*Dad's off the Exjade until we run the tests, and I'm very curious to see the results!
Interesting input regarding the FE count. The nephrologist is wondering if Dad's vasculitis might be active again and causing some of the kidney issues. The blood tests should tell the story on that.
Sorry you are battling with the phlebotomies. I am totally unfamiliar with this procedure as it relates to someone with bone marrow failure disease. As if the stress level isn't enough, we also have to fight constant battles for treatment. I pray that someday this will change.
One day at a time - that's my mantra (most of the time!). Being the control freak that I am, it is most difficult to handle that so much about this is totally out of my control. The kidney issues have been a major cause of concern and I am very upset that the previous doctor did not address it! It is the main reason we have switched docs. The other reason is that dad's labs were always a big secret! He only told me the platelet, WBC and RBC numbers! The rest was a mystery!
Again, thanks for the excellent info. Deb
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