Well it's been eventful.

I will try to make this a 'quick' version of the past week.

We have a date for TPN training (this is where they train me to do the IV nutrition stuff own. I cannot be discharged until this is done.) - it should happen the week of the 20th of Dec. So if the stars line up I MAY be home on Christmas eve.

We are working on hopefully getting a home nurse lined up to do the TPN at home - if this works out I might be able to go home around the 15th and do the training as an outpatient. I have no idea if this will happen but time will tell.

Regardless I am mentally ready to be inpatient over Christmas.

I have been able to go home on day passes to visit my boys regularly so that helps everyone (except Dave who has to do all the driving - though he's been awesome and doesn't seem to mind too much). Last night we had Brandon's 8th birthday party and I was so happy to be able to be there!

It was a close call - my day pass yesterday was cancelled because I spiked a fever. I have been running fevers since Saturday afternoon and they have been playing the 'name that infection' game trying to figure out the souce (the worry with a central line is of course a line infection which can be VERY bad very fast). Thankfully today the source reared it's ugly head and I have a full blown gut infection - tests are pending to determine whether it is C.Difficile (which would suck - but would still be treatable) or just a garden variety virus, either way my gut is even less happy than it was before and I am in a world of hurt today. Loving the morphine.

On Wednesday (I think?) I had a blood transfusion because my hemoglobin was 74 (7.4 in US terms) and I was pretty symptomatic - turns out my iron levels were very low - they figure the anemia (low hemoglobin) is a combination of the low iron, and bone marrow suppression from my immunosuppressant medication.

Friday I had an infusion of Iron Dextran - IV iron - to beef up my iron stores.

The blood transfusion was amazing - night and day - my cheeks are pink and I feel fantastic!

I am currently looking very chipmunkish - and I have gained 10lbs in the past 2 weeks on account of fluid retention - my Albumin levels are low (it's a protien and levels drop when you're starving) and apparently this causes fluid retention in the tissues and leads to a puffy face (and puffy everything!). It makes me look healthier - but it's an illusion apparently.

To round things off it was decided last week that my autoimmune disease has indeed relapsed once again. I started the plasmapheresis treatments for the 3rd round today.

If this round of treatment does not result in a 'sustained remission' (meaning I dont relapse for at least a few months) the hemotologist wants to move onto a med called Rutuximab (not sure thats spelled right) which is a chemotherapy agent that works very well with conditions like mine apparently..

So we still have lots of options which is reassuring.

I beleive that is all -- as if it's not enough...
as I said - eventful!

Well off to sleep - hoping for a restful day tommorrow...



  1. Stopped by virtually- low on brain cells to write anything clever :-P

    Kelly L

Post a Comment