Hey everyone. How are my peeps?
Frankly, I am not sure if I still have any peeps out there. I have been horrid since last July about posting, and I truly apologize.
I am finding that, as time goes by and I live in this world called Kidney Failure, that it is not just my physical body breaking down around me. Yes, I am still in a wheelchair, no walking does not seems any closer.
But, I am starting to find my brain is breaking down around me, as well. It is apparent that it is harder and harder to put thoughts not only together in a conversation, but on paper. I cannot tell you how many times I have opened Typepad to write all about the things happening here, but health-related or not, only to sit and look at this blank screen in front of me.
To be honest, it seems a two-fold issue. Around here, I find I cannot have more than one thing going on noise-wise and still be able to concentrate enough to carry on any type of conversation. But, I also, at time, feel I've nothing left to say.
Nothing that has not been said again and again ad naseum in the last 5 years. It is almost that it is not just becoming too much to be living in the moment and seeing it happen, but to document it? I believe that is part of my struggle.
I wonder more and more if I will have that moment where I can look back and laugh at all this someday, as they say.
Cedars is the best hospital around. They are the hospital to heal me, I truly believe. But we are once again in the cycle of each new Living Kidney Donor candidate, which to be honest are becoming harder and harder to find, being turned down. I thought when we signed up with them that this was it. The miracle we were hoping for.
Miracle, stage left.
Elvis has left the building.
So, I am sorry for not being more vigilant about posting. There truly are wonderful moments in this house. I have a beautiful husband who takes amazing care of me and two of the most wonderful kids who are becoming more and more stitched to my soul every day.
Jonathan is thinking of spending part of his Gap Year in Africa- either on a reserve as a volunteer, or building on an orphanage compound.
Kati is killing herself this summer working 7 days a week at two jobs (1 FT, 1 PT) and taking dance lessons and going to Social Dances to hone her craft- all in preparation for her upcoming Dance Scholarship audition in January at UVU.
Following their dreams.
In about 14 months this house will become very quiet and very still. Hmmm.
Otherwise, in other news, Cedars has made mention that they received a couple of phone calls in the last 3 months or so from UNOS offering me second or third place for a deceased donor kidney they had determined me to be a potential match. Basically, if the first person they offered it to failed the cross match (blood test to determine compatibility), then they go down the list until someone works, if at all.
So, rather than wait for the optimal Living Kidney Donor (optimal as a living kidney statistically lasts at least twice as long), they are willing to begin the 5 week protocol to prep me for being ready for accepting a deceased kidney now. It is all just a matter now of waiting for the insurance to approve the protocol being given here, rather than in LA. This is the difference of me not having to drive 5 days RT to LA for a 4 hour dialysis treatment on a special machine. We have that machine here in Bend, OR- praise God.
So far, the insurance has had our request for two weeks.
Yawn.
Somehow they forgot they gave us pre-approval in January before Sarah went for her clinical evaluation in February.
They have evidently started the whole process over. Slowly.
Well. Not bad, if I do say so. A post that would have taken me about 30 minutes to write a year ago? 2 hours and counting.
But, I wrote it.
I promise to try harder. I owe all of you that. You have been so supportive of us throughout these last 5 years.
It may not be much, but it will be something.
I love you all.
Know that, if nothing else.
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