Table of Contents

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For All Caregivers, of All Chronic Diseases ! For Anyone . . .


Foreword by Jurgen Hesse


24 Hours


Twenty-four hours elapse between the need for oxygen, pneumonia is diagnosed, and a dialysis code blue.




From dropsy, to the Life and Death Committees, a history of ESRD and present day Medicare.


Part I: From the Stones to Dialysis


1 From The Stones . . .


1990. Kidney stones are unbearable, as renowned Massachusetts General Hospital becomes the stage for a twenty-one day visit.


2 The Passing


The journey begins in earnest.


3 Vis--Vis


A doctor, a phantom Retrograde Pyelogram and politics generates contemporary friends, a new urologist and nephrologist.


4 Mountains (to climb) and Mountain Lions


Tomatoes, squash and a mountain lion-Lois succumbs to anemia.


5 If it Ain’t one Thing . . .


The doctor’s wrath, a house fire and a man’s intuition pilots Lois to the hospital.


6 The Double Bind


The paradox of a dialysis patient.


Part II: Pro-tem


7 A Dialysis Reality


“. . . the cycle, dying-yanked back, in a repetitive circulus vitiosus.”


8 Compassionate Acceptance (Who’s Playing God?)


UNOS,, stem cells, cloning, Cleopatra’s handmaidens, and the bioethics of transplants.


9 Fill ‘er Up!


Peritoneal Dialysis propels a chronically restricted lifestyle towards independence and self-care.


10 A Perilous Turning Point


One painful phone call turns into one and a half years . . .


11 “Oh Gody”-The Buttock Butcher


“That was the turning point. A major flaw. I think most everybody agreed with me.”


12 Be Off With It!


“John, they wanna’ cut . . .!”


13 Healing


The Reiki Master, the Ryder Cup and by-passes rolls into the “whittling of the limbs” and a return to an old haunt.


Part III: Coming Home


14 Is Home


Intense caregiving precludes work and money. What have I gotten myself into?


15 Thank you!


Medical misrepresentation and a common understanding with the “authorities.” A caregiver cannot be thankful enough for his supporting cast.


16 Oh, Please Can We? (Do home hemo)


To our amazement, the world’s largest dialysis provider takes us on.


17 Homeward Bound


From pessimism to baked potatoes, homeostatic dreams, to a dubious US Congress, Dracula comes home.


18 Six Days and Not Counting (This is it)


All the king’s horses and all the king’s men can’t put Lois back together again.


19 Lois


A poem.




The aftermath and internet condolences lead to a chance meeting. The future of dialysis concludes this story.




Remembering a “. . . loving, dynamic, mouthy, interesting, honest, smart (maybe even brilliant), kind, thoughtful, demanding, persevering, inquisitive, humorous, and many other adjectives-in all a most unforgettable woman."








                          What is a caregiver?


The most important person (behind the scenes) dealing with the daily care of their loved one.





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