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Vaginal Hysterectomy - TVH/BSO - Kidney transplant and Lupus - Kim's Story

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I was diagnosed w/ lupus at age 21, so I've been w/ it and it w/ me for (gulp, age admittance time) almost 20 years. I subsequently developed kidney involvement (due to lupus) and also took Cytoxan, high dose Pred (dread)nisone and all the rest. Eventually I weaned myself off the evil nasty drugs (not Dr Recommended, by the way) and decided surely that dialysis and transplant were better than living the nightmare of cytoxan AND high dose prednisone.

Cut to the chase: started dialysis in May 1987. Expected quick transplant but sadly lived in bad part of country (slow, less organs recovered, Midwest) and dialyzed for 4 years before moving to Florida (fast! best state to live in if you are waiting for a kidney tx.) In 5 weeks I received my kidney tx. The entire Midwest doctor's had balked at tx'ing a lupus pt. but the docs here said I was a fine candidate and YOU BETCHA! Almost 9 years later here I am!

Since then I had to have one ovary/tube removed due to cyst, then had some problems with breakthrough bleeding on periods and abnormal paps, dysplasia, etc. Because I am at greater risk for Cancer being on immunosuppressive meds, I opted for a TAH but luckily it got done as a vaginal hyst, they took it all out. No more risk for ovarian, cervical or uterine cancer. Now, granted, at 40, I had long since abandoned the idea of having kids but in my 20s and 30s I mourned.

Since the Hysterectomy I have been on Premarin, four different patches, and two versions of EstraTest (both hi and low). Ultimately, for the best outcome of my kidney function, I went off all synthetic/medical/prescribed hormonal replacement and am taking daily: Estroven, 2 soy isoflavone capsules and 2 black cohosh capsules. I take FOSAMAX once a week for calcium, plus also daily calcium and magnesium. (This in no way describes my total pill/supplement regimen, just the hormonally related stuff).

I feel wonderful. Now that I'm off the Rx hormones I am losing weight, not holding water, my kidney numbers are awesome, I'm full of energy, I work a full time job, am on call round the clock 25 days a month, and an also at the helm of one of Florida's largest jazz charity events! AND I WORK OUT, TOO! So there. 40, energetic, no more periods (oh happy day), and even the libido is hanging in there.

I encourage you to do research, and beyond everything else: You must keep your attitude POSITIVE! It has impacted me tremendously to be up, optimistic and have a can-do, "BRING IT ON, BABY!!!" attitude. I'm only on 5mg of prednisone, too, so we cannot blame my energy on that. HEALTHY PEOPLE MARVEL AT ME.

All I can say is, it's "Joie de vivre" or JOY FOR LIFE! Live each day as if it is your last, make the most of it, and thrive through the Hyster Sister support network. All my best with a grin, a hug and lots of LUPUS LOVE!

Kim/Fort Myers, FL

08-24-2001 - 07:38 AM


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