by jviren » Sat Sep 18, 2004 1:00 am
I'm Jan, age 46 but feeling arbitrarily age 31, with FSGS since age 15 when I seemed to wake up one morning with swollen eyelids and ankles and feeling tired. Had an open kidney biopsy which led to the diagnosis of Nephrotic Syndrome at that time. Suspected cause of my disease: strep throat, but we can't be sure. I was put on prednisone and Lasix and Aldactone, as well I some other medications I can’t remember. When I was a senior in high school, I was at the University of Minnesota Hospital for 3 months while they attempted to arrest my disease with a chemo drug, Cytoxan (it didn’t change anything). When my son was 2 years old, I had a bout with swelling that went out of controlâ€â€I couldn’t even wear my husband’s clothesâ€â€and I was in the hospital for 10 days getting albumin by IV.
Anyway, I've led a pretty normal, healthy life except several bouts of swelling every few years, which brought a slight decrease in function each time, until just recently. I remember when my serum creatinine reached 6 about 15 years ago and I was told to prepare myself for a transplant in the near future. At that time I had been taking 80 mg. of Lasix every day just to keep the edema down and, of course a potassium supplement to keep my electrolytes balanced. Interestingly, around that time I woke up with my whole body cramped up in one giant Charley horse from dehydration. My doctor told me to discontinue Lasix and I haven’t taken it on a regular basis since. I really have no edema unless I’m sitting for long periods or get a viral infection. Also at that time, my serum creatinine got much betterâ€â€as low as 2.1. Since then it’s been creeping up again (now about 3.8 to 4.1 or so) but I still don’t need Lasix. Having fought edema so much, I hate it!
In January 2002, I had three viral infections in a row. From those, I had another bout of swelling which brought my kidney function down to where I am now (about 25%). Because my creatinine clearance was 19 at the time, I qualified for the transplant list. My sister has gone through the evaluation to be my living donor (she matched all six antigens), which is an amazing gift. So far, I don’t need a transplant, as my function has remained the same for over a year. I just had my parathyroid glands removed because of a high PTH and blood calcium level so I am taking oral calcium by the ton (hycalcemia has been a battle) and Calcitriol (1.5 mcg. daily), which I’m told I’ll be able to reduce soon. For medications, I take Atacand (8 mg.) to keep my blood pressure low, Zocor (40 mg.) to keep my secondary cholesterol level low, and Levoxyl for hypothyroidism, along with iron for anemia (it’s under control). At meals, I take sodium bicarbonate (1300 mg.) and Renagel (400 mg. at lunch and dinner). My blood potassium and phosphorous levels seems to be under control right now, although my BUN is in the 60s. I am on a low sodium, low phosphorous, low potassium, low protein dietâ€â€which really isn’t too bad. Don’t know how long this journey will be but right now I feel good. The only real difference I’ve noticed in myself since my function went down is that I tire more easily and have less energy. I tend to be a high energy person so my husband says I’m down with everyone else now!
I edit a literacy journal, Wyoming Journal of Literacy, and am writing a young adult mystery novel. My main love and occupation is directing a Christian ministry (EquipNepal) that works with people in the kingdom of Nepal. I run a sponsorship program for orphans and other children and fundraise for other worthy projectsâ€â€it’s a very satisfying and awesome job where I get to use a lot of my gifts for the Lord. I also enjoy writing music and playing my guitar, singing, photography, and meeting people. I am a teacher and writer by education. My husband, Bud, is a mechanical engineer runs a consulting business our of our home, designing conveyor systems for bulk materials handling. We have a son who is 23 years old. We live in Northeastern Wyoming by Devils Tower National Monument (you know, in Close Encounters of the Third Kind) in a town that is all of one little country store on the highway.
I would be happy to communicate with anyone about this common link of kidney disease because I'm finding it to be very helpful.
We live in the Vale of Glamorgan, very close to a RAF base. We have two daughters, Naomi, aged 12 going on 22, who has a severe speech & language disability, Bronwen aged 9 going on 16, who is epileptic and has hypermobility in all her joints, that's double jointed with attitude! We have two dogs, a greyhound and a lurcher,both rescue dogs. 
I have decided to base one of my studies on individual's perspectives of living with renal failure, as it's a subject close to my heart, as my late nana was on Haemodialysis for years, and resented the infringement it was on her travel plans (she was a proper globetrotter!)
donated her kidney to me 
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