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Follow-up to my transplant pre-evaluation appt.
On Friday I had an all day appointment at the transplant center to get all my education on the process/procedure and also to meet the staff that is involved. the day went really well and the process was very streamlined. I had blood drawn, i met with the social worker, i setup an appointment for a counselor, i met the transplant coordinator nurse (who handled the education part) and then, finally, met with the nephrologist (kidney doc).
the last part was horrible....basically a doc i've never met before came into the room with my chart (which I could tell he skimmed) and saw me and made an assumption. i do not look sick...mostly bc i'm 30 years old and i've dealt with lupus/kidney disease for over 10 years...i'm used to it. i don't let it consume my life and i go on as normal the best i can. he basically looked at my last lab results and saw that my kidney function is at about 20-24%. to a normal person, this sounds horrible...but to someone in line to get a transplant...i'm not sick enough. I need to be below 20% to be put on the transplant list to receive a cadaver kidney. he basically said i need to wait about 2 years and see where i'm at wtih my kidney function. i politely disagreed, as did my dad and husband. first, i explained to him that 30 days ago i was at 12% kidney function and had nearly died. i asked him why i needed to get that sick again to be eligible for a transplant. i tried to explain that this "flare-up" last month was the worse it's ever been...and completely different then any other i've had. he made comments that it's not my kidneys...that it's my lupus (not true) and basically just didn't listen to me.
at one point i told him that he really needed to take not only my medical chart into account when making this decision, but also my quality of life. i want to have more kids...and i feel like my life is on hold. i cant get pregnant until at least 1 year after my transplant, and the longer i wait, the more high-risk my pregnancies are. when i said this, i started to get emotional...bc it's a big deal to me! the doc looks at my and goes "do you have a psychiatrist?" he might as well have asked me if i was on my period. i wanted to kill him. he just really had no bedside manner.
i think we finally got our point across...in no way do i want to take a kidney from someone who is sicker than me. but, if i have a living donor, i'd like to start this process now. he agreed to go to the committee and advocate on my behalf. so, as long as i can find a match on my own...i can get my transplant soon 
sorry this was so long...it was a long day. thanks for reading
June 2011
Re: Follow-up to my transplant pre-evaluation appt.
My parents are too old to donate...since everyone naturally loses kidney function wtih age, they don't typically take donor kidneys from anyone over 60. also, my sister also has lupus with kidney invovlement, so she's out of thequestion as well. and that's basically it for immediate family...my dad is an only child so i don't have any cousins on that side. my mom's family we aren't super close with...but i do have 2 cousins that i keep in touch with. i doubt they'd get tested.
Brad is going to get tested. after taht, we have a lot of friends who have offered.
that was my exact comment...it seemed ridiculous. i mean, if i had to be put on the list, the wait for my blood type is 2-3 years anyway...so waiting is a give-in. but, with a living donor it seems to be more of a family decision rather then a hospital decision..ya know? ugh...nothing is easy!
I'm sorry your Dr was so horrible. Those guys really should have to pass a bedside manner test. What an ass.
I hope you find your match soon, I'll keep you in my thoughts and prayers. Thanks for updating us!
I hope you find a match and I hope you find a new doctor that is a little more sensitive to your situation. As stated, I think that people who've been in the field long enough become cynical and forget that you have your own story and feelings about the situation.
I'm so sorry you're going through this. HUGS. I really hope something lines up quickly.