My ESRD Spontaneous Remission
I was born in 1955. My health was never good & after several years of suffering a myriad of symptoms & co-relating treatments, I finally became quite ill. My family physician must have had a pretty good idea of what the source of my trouble was because he referred me to a nephrologist at a nearby children's hospital.
The nephrologist still lives so I will call him Dr. Lonny. I do not know the identifying diagnosis that Dr. Lonny gave me, but this is more-or-less how my mother always related to me the course of events that began when Dr. Lonny received me in my ill condition in approximately 1960. Dr. Lonny told my parents that my condition should be considered grave. That he knew of a surgery that was (at the time) experimental that he strongly recommended because, without it I would surely perish.
Both of my parents worked & after 5 years or so of taking turns staying up late at nights taking care of me & often being rejected by my day care owner/practioner because of fever & the potnetial of infecting the other children, they were at a loss for what else to do. They accepted the surgery.
Thus, the slow journey of eventual acceptable health began as the total effects were not immediate. I took medications without stop dates for a few years. Those of particular memory tasted of strawberry & banana. My kindergarten attendance was nothing to speak of, but beginning with my 1st grade I had several consecutive perfect-attendance records of which I still retain ownership of!
It was after my completion of nursing school, achievement of my state nursing boards & attainment of my state nursing license that I eventually asked about that life-saving surgery. I found that it debridement & reconstruction to my left kidney. At birth, my left kidney was structually deformed & smaller than the right.
Now I understood why I was always told that the fix-up to my kidney would eventually wear out & I would someday need dialysis. Although I was never quite up to par, with effort I could achieve! In addition to my education credentials, I am the mother of two sons who do not exhibit symptoms of inheriting my deficit gene.
Although I have had two failed marriages, I boast of the husband I now have. I am beginning this narrative on our 30th anniversary! ( Don't worry - we plan our celebration on a non-work day.)
The first sign of further major deterioration was discovered in 2005 when I was hospitalized for attention to my left knee that was injured in an auto accident. A nephrologist was asked to assess & give consultation. Tests showed that I was in the middle stages of renal failure. This nephrologist confirmed what my childhood nephrologist projected - that I would, indeed need dialysis. But not just yet. I still had some time.
Thus began periodic office visits for check-ups that went on for two years. In August 2007 I felt terrible. I won't bore you with my symptoms because if you have come to this forum you most likely already know what they are. I was so sick that one day on my way to work I got the second of only two traffic tickets I've ever received in my life. It was at the end of the month with Labor Day the first day of September. I had not been physically able to perform nursing duties because of respiratory deficits since 1994, and even though I was no longer working in my sorely-missed nursing profession, I had been working as a cashier in a booth at a parking garage the same year of the afore-mentioned car wreck. Having had schedule-making responsibilities during my nursing career, I knew that my cashier boss would have trouble replacing me for absence on Labor Day. So I managed to work Labor Day then called-off sick with my urgent need to see my nephrologist.
Tests proved that I was, in fact, in end stage renal failure. Although it had long been my choice to have peritoneal dialysis performed by me at home, as a back-up, a vascular surgeon had tried to create a fistula for hemodialysis in my right upper arm in 2006. I say tried to create because it failed before the sutures were even removed. So, the show was on for p/d (peritoneal dialysis for those unaccustomed to the term).
I went to see my general surgeon. Surgery was performed in mid-September to implant the necessary abdominal catheter. By the first of October I was in p/d training & after a short week I was performing p/d at home. As a Nurse, I was very stringent with procedure, but in spite of my best efforts there were recurring complications & after three bouts of infection which required hospitalization, I called p/d quits. During my third hospital stay I came close to death. I know this because of a spiritual experience I had there. I will not elaborate on my spiritual experience here, but I knew the time for change had come.
So back to the vascular surgeon I went. Another fistula was created - this time in my upper left arm. This fistula never performed real well. It underwent several adjustments because I blew up three dialyzers, and a bloodclot was removed once.
After a short period of time I began to feel rough spots on the fistula. The rough spots localized into two circular areas that resembles scabs - except there were tiny open lesions in the centers. The vascular surgeon took me to operating again & when he opened the fistula he lanced two aneurysms. Of necessity for means of dialysis he implanted a catheter that entered my chest with my heart as the destination. Not to mention the mess it made of the OR, the aneurysms nearly ended my life.
This was the third such chest catheter I had received over the period of time since the removal of the p/d cath. All were told to treat it with care because it was the last available place for a chest catheter.
I began to seek out what possibilities were available myself. During my research I discovered a different kind of dialysis that was not the typical fistula. There were very few vascular surgeons certified to perform this procedure. I found one close to me & went to see him. As was his recommendation, there was one other type of fistula that needed to be tried. Except for painless vascular spasms that interrupted the dialysis this 2-step fistula had much fewer complications.
When I first statred hemodialysis it was for four hours at three times a week. Eventually it was reduced to three hours at three times a week. After a brief try-out of three hours at twice a week, three hours weekly was settled on. The doctor was ready to try to stop dialysis altogether. But even though I feel good, I'm too afraid that I would suffer a recurrence of all those symptoms I felt in August 2007 before I started p/d.
Maybe someday I'll overcome my fear of repurcussions & try life without dialysis. Then a total spontaneous remission will be confirmed. Until then, I'll be satisfied to know that my remission has come this far & that total remission is just around the corner!