Sunday, December 6, 2015

My Kidney disease- hemophilia care

While Rajesh and I were coordinating who's coming to Madison for the surgery, where everyone will stay, how we get to Madison I was a couple of important items on my checklist very relevant to the transplant surgery.


My nurse coordinator had informed me that the target threshold for hemoglobin was 10. When I started on the Procrit shots my Hb was at 7.4 (severe anemia).  Every week I would get a blood test and my Hb would rise by 0.4.  So as of today my Hb is at 9.6.  I have two Procrit shots before the surgery and my nurse has informed me that at this level the Hb will not be a show-stopper.  The only instructions I have is to stay away from contact with people with a cold and runny noses. I should be good in this front and wash my hands regularly.


The other (major) care is to manage my bleeds due to hemophilia.  For this I contacted the hematology nurse at UW, who in turn contacted my nurse and doctor at RUSH (my local hematologist team ) to get a treatment plan.  So the plan is to dose me with Factor VIII (Advate) up to 100% just before the surgery and then every 12h while the hospital.  Continue Factor infusions for two weeks once at home also.  The UW pharmacy has 22,000 U of Advate ready for my use. They plan to place a PICC line.  This will help my venous access a lot specially from poking myself twice a week at home.  The down-side, of course, is the line is site for infection and will need to kept 'clean'.  Infection is certainly one of the biggest safety concern in my immune-compromised state post-surgery.  I am working with my the home health care system who will send a nurse home once a week to change the dressing around the line. 

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