Meeting with Duke team went sideways for a while. They were concerned with my chest x-ray done Thursday morning and thought I might have pneumonia. Received a six pack of platelets and scheduled a CAT scan for Thursday night which indicated they were wrong.
Friday I was scheduled for removal of porta-cath and new Hickman catheter but my platelet count needed to be at least 50K. Something told me this was going to be a show stopper and I was right. Looking back at my history since January 2007 I have never been close to 30K so I had this feeling no way. Well after two units of whole blood, yum, and another platelet bag I am still below 30K so the surgery is on hold. I was told to go back to my new home for the weekend and rest.
The current plan is to admit me into transplant unit on Sunday , as planned, and then use a "HTH" matched platelet transfusion which should get me up pass 50K. Wish me luck. They seem to believe that this will get me high enough. Then I can receive my new Hickman on Monday with my first radiation that afternoon.
I am frustrated with all of these plan changes so early in the process but I guess i am moving ahead. My biggest gripe is the fact that they have my medical records which include my blood counts and they could see that one transfusion of platelets would not get me where they want but the plan did not include any backup system. Everyone needs to be an advocate for them selves and their family to remind medical personnel that things are not usually text book and that they need to be aware of each person's medical quirks for lack of a better term.
Well I feel good and am ready for whatever comes next, I just wish whatever was on the plan we have agreed to. I hate this one forward two steps back stuff. thanks for letting me vent. Pray that my medical team can look ahead enough to ask the right questions now so that once we get started we can at least finish one thing as planned.
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2 comments:
Hey Peter - we're thinking about you and praying for the best.
love,
your old neighbors
Lee and Dan
Big Brother,
Be patient, although that seems hard it takes strength to be upset and frustrated so save yours for the positive outcome. I agree that they should have looked back, and completely agree that you do have to push to get what you need. But...be glad they are careful in every step. We will all try to be patient as well, it must be hard having to explain everything. No excuses, no pressure, take it one day at a time. Love and positive thoughts, C
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