Missing the Norm.

I miss normal.

Let me clarify. I miss my normal. 

Dialysis was never ideal. In fact, over ten years ago, when my second transplant had failed and surgery was required to place a peritoneal dialysis catheter into my belly in order for treatment to be possible,  I admittedly was a less than cooperative patient. I did not want to go on dialysis. The day of the surgery, it took two strong-as-ox nurses to anchor me down to the bed, and an enormous needle full of Ativan  jabbed into my thigh in order to be transported to the operating room. Even as the sedation took hold, I recall hearing myself declare: I do not want this.

Needless to mention, I was not a overly willing participant in my dialysis treatment, at least not initially*.

Then, over the years, life on PD dialysis became normal. Being attached to a machine for ten hours a night? Normal. Having Baxter boxes strewn about the house? Normal. A new (and uncommon) normal, yes, but one I (surprisingly) could live with. Ten dialysis years quickly past, and other than a few health blimps (not unexpected ones: a single incident of peritonitis, a visit to the operating room for a parathyroidectomy), peritoneal dialysis was tolerable. 

And now the latest transplant. Overall, the transplant has been less tolerable. (Am I allowed to say that? I am keenly aware that there are societal rules regarding the expression of gratitude, and especially with respect to organ donation. If I sound ungrateful, I am not. I obstinately refuse, however, to not at least acknowledge that these past five months post-transplant have left me surrendered).

I went to my pre-op appointment today. The lymphocele marsupialization** is on Monday, and I needed to meet with the anesthesiologist to review my medical history and the like. The appointment was long but routine. I did not expect, however, the level of involvement such a surgery entailed. In my happily cartmentalized brain, this latest hospitalization would not be a big deal. I would be out of hospital in a day!

Well, the reality is much less happy-clappy. The actual surgery will take three and a half hours. I will have two IVs in my one arm afterwards. I will have a patient controlled analgesia (PCA) pump for pain. I may have a foley catheter. It is expected that my hospital stay will be three or more days. While these are details that I can usually absorb, my emotional reserves have been depleted from this ongoing transplant ordeal. And so I left that pre-op appointment shaken, and in a bleak state of mind

When I returned home, I blubbered and spread my despondency all over Sean. Then, as a good mental health patient, I went for a walk. As I was stomping down the ice-crusted sidewalk, I tried to sort through my emotions. For me, a part of that usually means weepily grumbling, out loud, to God.  So there I was, angrily trudging down the path, swearing at the heavens, when I was gently interrupted by the question: what are you afraid of? 

I knew the answer immediately. I am afraid of being even more messed up. I am afraid that this surgery will jumble my insides even more than they are now.  I am afraid that I will end up even more trapped inside a failing body.

I miss my pre-transplant normal.


*I owe a big thank you to Sean here, for being steadfast during those initial first weeks of home dialysis, when I was too distraught to even look at the dialysis machine, never mind set it up with the proper care. He, despite working overnight shifts at that time, faithfully set up that machine each evening before driving off to work. On week two, he also came home with a fuzzy black and white kitten, which we christened "Jersey" because we are not farmers and do not know the difference between jersey cows and holsteins. Thank you Sean, for being there for me.

**marsupialization: this is not where I am turned into a kangaroo, although I have to admit that is strangely appealing. No, 'marsupialization' is a surgical technique wherein a slit is cut into a cyst (my lump-o-lump) and the edges of this slit are then stitched together to create a continuous exterior, thus forcing any fluid to drain. As my nephrologist so elegantly put it: it's like turning an orange peel inside out.  

*** medical personnel are much more gracious in their description of my case. Instead of the label "complicated", they usually insert the word "interesting". If that is the case, then, I am one hell of an "interesting" person, I'd say.