3-year PD patient with lupus nephritis

Well, my name is Em. I am currently on peritoneal dialysis. It's been about 3 years now, but I've been dealing with Lupus silently degrading my health since I was in my mid-20's. I'm 32 now but often feel like I'm 80. I had some utter horror stories in the early stages of ESRD at a hospital here in Nashville that is supposed to be one of the best...one of the best teaching hospitals that is. Mistakes were made, accidents happened and my kidney damage was exasperated and accelerated on account of it. In 2012 I nearly died from a combination of CHF, C.diff, chemo and blood toxicity. I still to this day don't know why my nephrologist there did not put me on some form of dialysis but I'm sure it had to do with money. I switched hospitals, was immediately quarantined and treated for the c.diff, sent to surgery and put on hemodialysis. Within a couple of weeks I had the PD port put in and was on my way to feeling (slightly) less like death itself. When I felt well enough, I went through the prelim tests to be put on the transplant list. I have a half-sister who is too young to donate and a half-brother who has never offered and believes people can heal even the most trashed organs naturally...lol. Mother has a past diagnosis of lupus, father is a heavy smoker with hypertension. So, no living family donors for me. My best friend and partner of nearly 12 years has offered to get tested, but I mucked things up last summer with the transplant department. Untreated depression led me to enough frustration to make an attempt on my life and thus the transplant department deactivated my status on the list. They want recipients to be cheerleaders I suppose. Insurance won't cover any lab work ups in the mean time so I have just been waiting, placating and doing what ever they want me to do with the biggest smile I can possibly manufacture.

I utterly despise dialysis. The forum title says it best. Due to my age and circumstances, I have often felt like a guinea pig for the PD clinic and staff. I had to learn a lot on my own by either trial and error or by stalking the forums here..which has been very helpful. I only wish I had created an account to actually post sooner. It has been a major life-style change..one that often times feels surreal...and I still have not completely adjusted to everything that this means for my future. The other healthy individuals in my life (aside from my caregiver, who happens to be my mother) will never grasp how taxing this is on the body and the mind. They see dialysis as a treatment intended to make one feel in tip-top shape again and my social circle has gradually been dwindling as I have to refuse more and more invitations to activities and gatherings on account of low energy. People see you upright and walking, they assume you're alright.

Anyways, try as I might, I feel like my condition defines me now. There is nothing in my life that doesn't somehow revolve around dialysis or my ESRD. It's like dragging around one of those ball and chains in the cartoons and for me, the only possible way of removing it is by transplant. So let me introduce the me that I remember, before my kidneys bailed and the me that will be again once this ball and chain is removed.

I love travel. I am a certified scuba-diver and used to travel various islands mostly in the Caribbean to dive. I enjoy kayaking and this is still an activity I can handle with a little help. I used to love water sports of all kinds. I have a knack for art..particularly carving stone, sculpting and food. I was in the food industry for about 7 years as a caterer and cook and really, really enjoyed what I did. I still like being in the kitchen when I have the energy and enjoy cooking gourmet for others. I definitely am not very good at making "renal friendly" foods..lol. I try to be somewhat conscious about it for myself but..it's one of the main things I struggle with probably. So, I also really enjoy sci-fi and fantasy stuff...movies, video games, books, etc. I have a little cat named Chai, who is constantly on me.

All that aside, I have learned A LOT about PD from researching on my own and I hope to share some of my own experiences and learning curves with others in an effort to get more possible solutions out there to those that have also had to turn to self-research on account of lack of information anywhere else. Cheers.