Another 4 day Session of Vidaza - I'm Irritated !

[milliken2]

Earl had chemo today - and an appointment with the hema/onc. He asked why we didn't get treatment yesterday - and I explained to him that the nurses relayed the blood level - to what we thought was him - and we were told to withhold treatment, and go to the hospital and get the 2 units of packed red blood cells, and one large bag of platelets - followed by the medication that takes the excess iron out of his blood. He then proceeded to tell me he was never consulted - that his assistant made the decision - and he shouldn't have - he doesn't know Earl at all, except to pass in the hallway and say hello - I don't think he really knows our name. This is after the nurses told me they had called our Doc in Pittsburgh for other patients. I then told him to annotate his medical records indicating that if any decision in the future needs verified - that they were ONLY to talk to him. He did - and showed me the note in Earl's file. But - to cover my bases - I verbally told each of the 3 nurses that give the chemo to read the note that the Dr. wrote, and that they were to talk to me - and I would make sure they talked to only the Dr. that treats Earl. Why do I have to be a nurse?????? But, glad I am for sure.
Beth

[Neil Cuadra]

Beth,

Earl's hematologist's staff really need to get their act together. And you need to continue watching what's going on as you have been doing so carefully. You are Earl's not-so-secret weapon, one he's very lucky to have.

Doctors and nurses have many patients. Most of us caregivers have only one, and that's what makes us so vigilant about their care.

[milliken2]

Neil;

I think they got the message - both from the Doc - and from me. One of the nurses asked us if her rear end looked any smaller - because she got an 'a_ s chewing' from the Dr for what they did.

They all KNOW that I won't accept inferior care when it comes to Earl, and from here on out - if our Dr. is not in the clinic NOTHING will be done until I actually talk to him. I wish I didn't have to be so vigilant - but I would like to see some improvement. His platelet transfusions have been MUCH more frequent. 2 times a week for the previous 3 weeks, and again on this past Monday. They didn't even carry over from Friday.

We did sign a Revlimid release on Monday, so I hope it gets approved, and that it might lengthen the time between transfusions. He has no energy now, and will have less after this week of chemo. I am getting so frustrated since all I see is a downhill slide. We have hit 180 unit of PRBC's since August 13 of 2011, and I didn't keep track of the platelets - only the last month or so when they became so frequent.

And your wife is lucky to have you. Take care Neil.

Beth