November 21, 2017: Day 368

The journey of trying to cope with the Medical system continued on today.  Yesterday while we were attending a funeral Doug left his phone at home.  Apparently he received a call with a message that he did not listen to until this morning.  The surgery center called to cancel his surgery that is scheduled for tomorrow morning.  It has been 5 weeks since the surgery to place the stent for his kidney stone.  We have been waiting for this surgery.  Doug has not felt good.  He had to be on IV antibiotic for 2 weeks and has to be on ora; antibiotics until the stone is removed.  We have to drive to Boise to go to this doctor.  Last week we were required to go to his primary care doctor since he had been in the hospital even though he is also getting Home Health.    I told her how annoyed I was that doctors keep saying he has heart failure because of the heart attack he had last Christmas when his body was in such distress. She made a copy of the echo cardiogram done last spring showing his heart to be normal, with no damage. This way I could show people that his heart is fine.  I needed that report today, unfortunately no one was interested in seeing it..

Last Tuesday a couple hours before we were suppose to go to Doug's pre-op appointment, they called to say we did not need to come, they had all the information they needed.  We were surprised, but glad to hear that.  We had two other medical appointments last week and so it was good news to not have another one.

So, when the doctor's office called and said his surgery was cancelled for Wednesday, because he needed to see a cardiologist I was furious.  I called them at 10:30 this morning hoping to set the record straight and make sure he could be operated on in the morning.  They did not bother to call me back until 2:30 even though I explained the problem and said it was urgent. 

In the meantime, I had to take Doug for a blood test to check for infection from the sepsis.  This was just another follow-up.  The last test was negative.  While at Saltzer I dropped by his doctor to see if she could call the urologist and explain the test.  Certainly nothing had changed since his surgery last month and they had done another EEG then.  Her nurse came out, I explained the situation and she said she would let me know, but there was probably nothing they could do.

When we got home and the Surgery Center nurse called, she preceded to treat me as if I had no idea what was going on and that this was in the best interest of Doug.  I said if they are worried about being liable they should be more worried about me holding them accountable if Doug has to wait another month and the infection comes back or if  he becomes resistant to the antibiotics because of him being on them so continuously this year.  I was really frustrated.  The other thing is that I worked hard to set-up a time that I would not miss more work and relinquished being with our family for the holidays again since Doug needed the surgery.  The woman on the phone had no idea about Doug's real medical story over the last year.  They only saw the words "heart failure" that someone put in his chart and which no one can take out of his chart apparently.

Anyhow after hours of me being demanding and pushy, they decided that they could do surgery in the afternoon at a hospital instead of the outpatient clinic.  And so Doug will have surgery at 3:00 tomorrow at St. Alphonse's in Boise.

So much for a vacation day, and time with my grandson.  I spent another day, navigating health care.  I so want this time to end.  Unfortunately, it won't be any time soon.  Doug has chemo on Monday morning to receive the Retuxin and a follow-up appointment on Thursday.  Then what....I don't even want to guess....

And so we pray:

God of Challenge, this hill is too steep, it is too trying and too long.  We are tired.  We pray that you will clear the path, even it out and show us the way to health. Give us time for rest and respite so that we might be encouraged. Strengthen our resolve and sustain our hope.  In your name we ask it.  Amen