In so many ways, today has been discouraging.
I had high hopes of finally settling down and writing a huge series of posts to catch you all up on things 'round here. So much has been going on, it left me so little time to write.
I had high hopes that when I talked to dialysis today, and got my first labs back since getting off hemodialysis, they would be stellar. In anticipation of that, my doctor had (vigorously) pulled and prodded the permcath our of my shoulder Thursday.
And I took a shower.
Without an hour of prep to cover it to prevent infection. It was glorious.
But, labs aren't stellar. They are as bad, and some worse, than before we started hemo in January. Temporarily. It was supposed to put things in line and then home dialysis would take it from there. And it failed.
To my credit, I did everything I should have. And have a computer chip from the home machine to prove it. Thank God. Those of you that have been around long enough know that in November or so, the dialysis team accused me of not doing my thing. But it was "he said, she said". Now, it;s irrefutable.
Regardless, it's not working. And I cannot tell you how my world has fallen apart. The thought of long term hemo scares and depresses me. I get too emotionally attached to people, and I'm the aby of the group. And watching these people die, since they are not going to be transplanted, just kills me.
And selfishly, I want my life to be my own. Not scheduled around 5 hours in the chair somewhere else.
We are looking at options, including a PET test to ensure that it's me that's the problem (my peritoneum may ave just shut off), or we may not be dialylzing long enough or something. I on't know.
But if we have to go back to hemo, we have a lot t deal with.
Emotionally, I need to be able to accept it. Going on a temp basis for 90 days was hard enough. Facing a permanent move .... well.
Financially, this means a few things. Six trips from Sunriver to Bend, about 40-60 minutes each way, for John. All with summer gas prices on the rise here. Honestly, we barely held our heads above water for the those 90 days. I know John is stressing about this.As am I.
Also, it will mean we need to put our plan to move back to town on the forefront. Technically, we have to stay here until August 1- but if need be, we may need to negotiate something sooner.
The kids are quiet about it all. I think they are just trying to roll with everything going on around here.
More to follow once my head gets in a better place.
There really was a ton of exciting things happening around here lately.


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