What is Forgiveness

I want to write this. Only my sister knows this story, and she may disagree with me on certain timing and details. Memory is a tricky thing, and she recalls certain things better than I do. This is the background of what I feel about the process of nephrectomy, dialysis and transplantation. As long as I decathect myself from these experiences, I do fine. when I think about being on dialysis and getting a transplant, I get completely unglued- anxious, shaky, sick. Long post follows if you want to skip.....

My father inherited PKD form his mother, who died at 39 in 1942. He was diagnosed while in the Air Force, when he collapsed on duty. He was given a year to live, and travelled throughout Europe, during which time he learned English. When he found himself still alive,  he chose to enter a field that would not require standing- pathology (he had been in surgery). He had a violent and lasting altercation with his father, who would not give permission to marry (he later admitted he was right) and came to the US as a Truman Scholar in pathology. He met my mother in NYC, and they married in 1956. I was born in 1957.

His illness became acute in 1958, with renal dementia, possibly caused by his at that time undiagnosed aneurysm. In looking at material from my mother, his creatinine rose dramatically in 1960-61, from about 3 to nearly 10. My first memories of my father are from this time, when I was three. As men will, we shared the hall bath, and I recall his urine being blood red. I don't remember him being mean or angry with me- he was fun and charming.

His urine output remained grossly bloody until his nephrectomy 7 years later. He was a the point of death in 1963 when he was placed on dialysis as part of a Federally funded research program at Penn. He was comatose when treatment was started, and it took three days of dialysis before he was conscious. He continued dialysis there three times per week until he ran out of eligibility for treatment. As his kidneys were gradually destroyed, he lost hematopoietin, and required transfusions on average every 10 days or so, to maintain a hemoglobin around 8. He continued to bleed grossly into his kidneys, prompting the nephrectomy, but Im getting ahead. His blood type was A-, and three medical students at jefferson (where he was a professor of pathology) donated on a regular basis to provide him the blood he needed.

He made appeals to our congressman for continued dialysis, which was denied. He then spoke with us about the option of home dialysis or his death, about which I have written. My Mom sold 25,000.00 of stock to buy the dialysis equipment and ship it to Philadelphia. My bedroom was modified into a dialysis room (they tried their bedroom at first, but it was unsuitable), and I was moved into an attic room. He dialyzed three times per week for 12 hours at night, using a Kiil machine and what was called a 'mini'. A kiil weighs about 140 pounds, and the 'mini' abut 300. We also had a blood pump, tubing, dialysate stacked up in the basement, saline, a centrifuge, a hematocrit reader, a hospital bed and table for my Father, and a  couch for my Mother to sleep on during dialysis.

We began home dialysis when I was 10 and continued to his death when I was 13. He was physically unable to build the Kiils, and my mother and I usually did it. We had a couple of them, allowing them to be built all at once for the week. We would build them in their bedroom, and then lift them onto their stand and wheel them down the hall to the dialysis room.

My Father used a shunt- there were no fistulas in the '60s. The shunts were prone to infection and clotting. Several times I helped pull clots out of my Dad's shunt, and on one occasion I walked in while he was napping and found blood all over the bed. He always carried bulldog clamps with him on his change purse. I grabbed them and clamped the shunt, whose ends had come undone. I was 11. He had multiple shunt revisions over 7 years, probably 20 or more, ending up with a Thomas shunt in his Femoral artery and vein. While it was unlikely to clot, the danger of hemorrhage or embolism is obvious.

My Father's renal bleeding reached the point of requiring nephrectomy my 6th grade year. He nearly died in the surgery, requiring extensive transfusions and an ICU stay so long he was given a tracheotomy for ventilation. When I finally got to see him, he seemed like himself, except his belly was flat for the first time in my memory. He was very proud of that, something I deeply understand now. He had an incision that followed his entire diaphragm, essentially cutting him in half. One of his phrenic nerves was cut, paralyzing half his diaphragm. He had to learn to cough and breathe again.

My Father's voice was very much like mine, and he had done significant professional singing work himself. After this surgery, his larynx was scarred by the tracheotomy, and his vocal support damaged by the phrenic nerve injury. His voice was a hoarse croak. While he was recovering, my Mother had to return to the house because she had forgotten something. My sister and I were at school. She came in to find him vocalizing at the piano. He did in fact recover his voice. His determination in the face of trouble still inspires me.

My sister and I went to Greece in 1970, accompanied by my father's secretary. We left June 23, and I returned July 23 by myself, my sister having returned rather earlier and the secretary having gone off to misbehave with various Greek men. My Father had an aneurysmal bleed July 30, landing him in the hospital 4 days. 

He came home for 2 days, and then had a series of escalating strokes
involving his hypothalamus and other parts. He called out from the bed, where he was shaking with cold despite being stacked with blankets, calling for 'a piece of meat'. I got my Mother because I didn't understand the request. We came to the room, and he was incoherent in bed. We stood him up, and he could stand, but was leaning heavily to one side, with his mouth open and his tongue hanging out. We walked/dragged him into the living room, where he lost all leg function. We dragged him into the recliner in the family room, and my Mother shouted at me and my sister to get out of the house. We stood in the front yard doing nothing, and I said to my sister 'I think Dad's gonna die'. She told me not to talk like that. After a few minutes we went back inside. he was still the same, and my Mother pulled the car around to the back door, and she and I dragged my Father into the car. This is the last time I ever saw my Father.

Remarkably, he recovered enough to speak, and spoke to me on the phone on August 8. We argued about whether I would be paid extra for raking up grass clippings. There's a long story behind that. I had never won an argument with my Father; indeed, I had been chased out of the house violently for disagreeing with him at the dinner table the year before. Now he said 'Well, we'll talk about it later. GEt your Mother for me, and remember I always love you'. He had another huge stroke that day, was comatose for a week, and died August 15.

During the last three years of his life, he used Darvon and Demerol daily for both renal osteodystrophy and urate crystal skin deposition, which caused a great deal of pain. He was anemic all the time as well as severely acidotic. He began each day by getting up and vomiting. He would then get fully dressed in a french cuff shirt and suit and go to work. His skin pain was such that he wore only underwear around the house- clothing hurt to wear. In health he was 5-10 to 5-11, anda 44 coat, a barrel chested man. In the last year of his life, spinal compression fractures had reduced him to 5-7, and a 38 coat. I remember the day we had to buy him new suits and jackets- it was at Macar's Men's Clothing in Philly.

These are the images I associate with this disease, and there are many more as you can imagine. You might think I would be eager to escape such things, and I am. But it is very different to deal with this intellectually and emotionally. I go forward because I know what is behind is bad, but I am having trouble visualizing a future that does NOT involve a hideous death from renal disease. No matter how different the machines and setting are, I can not watch as I am put on and taken off of dialysis. It is exciting, anxiety-provoking, overwhelming, to think that I might leave the hospital in a couple of weeks with normal renal function. 

I have written that all of your kindnesses to me have been literally life altering. It is hard for me to imagine how life altering a successful transplant would be.  Like everyone's kindness, the issues here are emotional and spiritual, not so much physical. This is the emotional backdrop to my reactions, and part of who I am. Even though I honor my Father's courage and determination, I dearly want to be free of the specter of such illness, which is why I am doing what I am doing.


This is what I see, what I feel....

'They do not see what she sees in the mirror-
The pastures of heaven and earth restored and undamaged,
The cattle risen from their jagged graves to walk in the seamless sunlight
And a new countenance on everything.
Her beauty gone forever, but to hover near her for the rest of her life,
And good no nearer, but plainly in sight
And the only way'.

from 'The Scarred Girl' by James Dickey

Ted