Anemia, what a good time.

So...  the rest of May was interesting.    These events began on May 17th and I was home safe and sound on Friday May 23rd.

   Almost died.   I don't recommend it.

     In March, April and May I had a health issue and ended up having a minor surgery.

 After being in and out of the ER at CMMC over the weekend, and a terrible time at dialysis in Auburn on Monday (5/19), they finally decided to do the surgery.  Although I was anemic,  they avoided giving me blood transfusions as it can make it harder to get transplanted in the future.  The surgery was done on Tuesday after dialysis in Augusta (since I bailed on Auburn early).  It wasn't too big a deal,  until...

 I came home from the hospital on Wednesday afternoon and  could not feel OK.    I had come home and was out of my head, started panicking about feeling so sick and dizzy.  I was basically freaking out.    Finally,  I called 911 and was taken back to CMMC.   I spent the evening in the ER with several nurses and Dr.s fretting over me.   I remember them telling me they needed to start IVs.  It took a life flight team with an ultra-sound to get 2 IVs working.  One to give me blood transfusions,  the other for anything else.  Scott stayed by my side the whole night.   No one was sure if I was bleeding internally from the surgery, or if something else was going on.   Eventually I was admitted to ICU and given another unit of blood.  I remember thinking that my ICU nurse looked about 14.  She was very nice.  I began to feel less out of it as the night went on.  They sent Scott home and gave me sedatives.

By morning I was feeling MUCH better.  They admitted me to a regular room for observation.  The IVs were painful,  but I cannot describe the feeling of being that anemic.  I had dialysis at CMMC on Thursday and went back home on Friday.  On Saturday I was back at the Kidney Center in Augusta.  By the next week it was business as usual.

Amazing that you can go from ICU to fine in a few days.

Sometimes Life Just Sucks

On Tuesday,  April 29, 2014, I went into dialysis.   I knew there was a good chance that I would have a substitute nurse, as our shift nurse has been sick for quite a while.  I was right.  I noticed as I walked in, that the director of our facility was also there.  I remembered at that moment, I had been told to be slightly early if possible, as he was going to visit.  I was at least on time, and he was still busy with other patients.  I got hooked up to my machine and relaxed to begin watching NCIS (new episode, yay!)  At about 8:20 the director made his way to me.   He was accompanied by the facility Social Worker.  They sat at the end of my chair.  I stopped watching NCIS and removed my ear piece.   I knew then,  that they were not here for a routine visit.

The news was delivered quickly.   We are closing the Nocturnal shift.   Thursday will be the last Nocturnal shift.   -  I was devastated.  I have been on this nocturnal shift since it was first offered.  I even made it through the first attempt to close it and turn it into an evening shift.  Since 2008,  I have been on Nocturnal,  having dialysis from about 8PM to 4AM three nights a week.   I have had the same tech for the entire time,  while we have gone through a few nurses.  My whole life is arranged around this schedule.  Now,  with about 48hours notice, it all changed.

My options:   I only have one option for the immediate future...  T, TH, Sat.  day time dialysis of 4 hours.   8 hours is immensely better for my body,  but that seems to be irrelevant.   Eventually I might be able to move to the Auburn facility where there is still a Nocturnal shift...  they will have to hire a nurse for that to happen  (then why they can't they hire a damn nurse here???)   but that is at least a few weeks out.   Another option is peritoneal dialysis which I could do overnight in my home.  (This sounds perfect,  but I may not qualify and my house may not be able to handle it!)

I feel like I have not good options...  even if I can go to Auburn it is quite a drive and I barely make it home now...  never mind the Winter driving.

I am not a fan of change to begin with,  but this seems harsh.  My whole life,  thrown into chaos,  with no notice and no good options.   Life just sucks sometimes.  On the flip side - what are you going to do???   it is what it is and I have always felt that Worry is a waste of time and emotion.  Accept what is, or act to change it.   I have written a letter (below)  and sent it to as many top folks at Fresenius that I could find.  Only time will tell if it does any good.  Until then,  you will find me on the Morning shift T, TH and EVERY FREAKING SATURDAY!!!   until otherwise notified.  :(

the letter:  

April 29, 2014

Dear Fresenius: 

What is happening to us is not OK.  I am writing to you,  while sitting in a Fresenius chair, hooked up to a Fresenius machine, in a Fresenius center.    I was informed, after I was hooked up, that my Nocturnal shift (that I have been on for about 6 years) is closing.   Not going to close, not might close, not will close in a few weeks,  nope  CLOSED as of the next treatment.   This is not my job,  I cannot simply walk away if I no longer like the terms,  this is my LIFE.  I spend 24 hours a week hooked to this machine.  A machine, without which, I would die.  This is my LIFE.   

I am told, by my clinic (2002) director, that this is a staffing issue and Fresenius needs to know every shift is safe.  OK,  so we shut down until someone can be hired…  NO,  it is closed for good.   There are several people on this shift.   Six of us are 8 hours,  true nocturnal.  The rest are really evening patients that come to our shift because the MWF evening shift is too  full to accommodate them; as are the MWF morning and afternoon shifts.   Too full.   So why are we closing a well-populated shift?  

Nocturnal dialysis is a growing industry.   Studies (see the November 2007 issue of aakp RENALIFE) have shown that the slower eight hour shift provides numerous health benefits to patients and allows them to function a lot closer to “normal.”   I have witnessed these results for myself.   I no longer get jittery and my lab work has improved significantly compared to my results on a four hour shift.   The atmosphere on nocturnal is also much quieter and calmer which has helped with my anxieties.   I can sleep on the shift and return home to sleep a couple more hours, then function as near to healthy as possible;  this is important as I have a home-schooled child waiting for me.    To be shutting down the nocturnal program here in Augusta, Maine is foolish and against the idea of progress.  It feels like a budget choice, not a decision made in the best interest of the patients relying on said shift.

Fresenius made about 1.1 BILLION dollars last year.  ONE POINT ONE B I L L I O N dollars.  It is clear to me,  and to the others on my (former) Nocturnal shift that the real answer here is that we are not worth what it would take to hire a nurse for our shift.   A nurse,  one nurse.   It would seem to me that our director was left without options,  without any support from this so called wonderful company.  Your motto used to be about Excellence…   I see that less and less now, and I can see why.  Excellence is about treating your patients well, understanding that they already have many challenges in their lives.  Not shutting down a much needed shift and rearranging them like meaningless puzzle pieces, without value.

Ultimately,  I am but a hostage and the decision is completely out of my hands.  As is the decision to give us all absolutely no notice.  Our lives have been thrown into complete chaos and we can do nothing about it.  My health, home and happiness apparently means very little in light of corporate decisions and the almighty dollar.  

As you are also the only company offering dialysis within any reasonable distance,  I will have to make peace with whatever decisions are made for me.

Cindy Dunham
Clinic 2002
Augusta, MAINE

Until next time  Write on!