We are back to square one, it seems!

Carly in her GAME face

Carly in her GAME face

Today is Black Friday and the day after Thanksgiving.  Carly was released from the hospital after a full week inpatient on Wednesday night at 7:30PM.  She came home and fell into her bed exhausted.  It seems she still doesn’t feel any better and they were unable to pull enough fluid off so she is still over her dry weight.  They did give her blood, which usually makes her sick to her stomach and she still needs to pull off 4 kilos of fluid to make her dry weight.  When they would try to pull it, her blood pressure would tank and they would have to stop.  So it seems we are all back to square one again!

Carly views all of this as a big set-back and is really trying not to give up.  I keep telling her that her illness is going to ebb and flow and her health will change accordingly.  She is not going backwards, but it seems she feels she is.  Another problem was that no one besides me came to see her in the hospital at all.  John went to Kentucky to see his ailing parents.  All of her friends had the CRUD and would not bring it to her.  In her rational mind I know she understands all this, but emotionally she feels bereft and alone.  She feels like everyone and everything is moving onward, except her.   I keep pointing out that she is not alone and that she is moving toward her goal, but it seems that is not enough to bring her out of her funk.

Yesterday, for Thanksgiving, Carly got Jack in the Box for lunch and Ramen noodles for dinner.  We neither one had the energy to do anything else.  Today, we are back to our old pattern of dialysis here at home.  We had to do the setup using bags of dialysate since we have to drain the old SAK so we can make a new PAK then make a new SAK.  No one told us how much energy we would be expending just to do home dialysis.  It seems that we were ill prepared for the amount of heavy lifting and hard work moving boxes that would be required.

So here we are once again, doing dialysis in her bedroom and feeling like this waiting may never end.


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