To Mojo - Re C Transplant etc.

[Guest guest]

Dear Mojo . . . my other two daughters don't have lupus but my mother

did and now I do so a genetic component is definitely at work in our

family. That's why I'm concerned about the protein in the urine in my

two " almost kidney donor " daughters. They've both had physical exams

since they were turned down as donors but their doctors tell them not to

worry. I think this attitude is far too casual but I'm only " mom "

telling them this and they more or less ignore it and look at this

problem as " not a problem " . The drug you mentioned, Riquent, sounds

encouraging. I plan to mention it to both of them but even more

importantly, I'll save the drug name in case they or their doctors

suddenly develop a high degree of suspicion. Doubtful.

It would have been a blessing if you had not had to wait until your

creatinine level rose before they began to treat your kidney

involvement. Frustrating, to say the VERY least. Doctors seem to rely

only on numbers these days, at least in most cases. And lupus is still

a mystery disease in many cases. If not ALL cases.

WHen Jane was on dialysis her diet was restricted to no or very low

potassium which is one mineral dialysis cannot remove. That meant no

tomatoes, potatoes and any other potassium laden foods. I don't know if

reducing the intake of high potassium foods is necessary with weakened

but not " failed' kidneys. It may be only a " dialysis " related problem.

When doctors were trying to jump-start Jane's first kidney (when it

was on the way out), the doses of solumedrol were so high she developed

a drug induced psychosis which was terrifying. She had to have

around-the-clock sitters (ordered by the doctor) in her hospital room

for three days and nights because she thought all of us in the family

were

trying to kill her and her behavior became violent. Then the high dose

didn't work after all. Her current doctors at the Univ. of Wash Medical

Center don't use these high doses anymore. They say they're not

necessary and the serious side-effects are not worth it. Thank God! At

least Jane is spared that one on this go 'round.

Thanks for your input on this subject Mojo. I truly appreciate your

" take " on this serious business of kidney health. Jane drinks LOTS of

water. The transplanted kidney needs to be " bathed " , as the doctors put

it so I'm sure our regular old, more or less normal, kidneys benefit

from lots of water also. She drinks a large glass of water first thing

every morning and carries water wherever she goes. She drinks very few

carbonated beverages anymore but when she was in her teens and twenties

she drank gallons of diet drinks (diabetes), and now we wonder what all

those chemically laden drinks did to her system in general and her

kidneys in particular. At the time doctors said any liquid was okay.

You have three little boys who keep you going full tilt. Your need

for time to yourself is completely necessary. ALL young mothers need

time off. I would have given anyhing to have had some free time when my

girls were little. They were born within four years of each other and I

didn't start until I was thirty. Then I couldn't quit! Not that I

would ever change a thing but the second two were big surprises. I

would have been a much better and calmer mother if I had taken a day off

a week or even a few hours here and there. Didn't know how to do it and

didn't know how to ask. So keep asking and taking time for yourself

even if you have to pay someone. The kids gain from it, the husband

gains from it, and most importantly, Mom regains a bit of sanity and

peace of mind AND unterrupted rest. So go for it. I wish I had.

Lots of love, C.

PS Jane's vascular problems may be related to the kidney rejection.

They don't know yet. In the meantime three of her dogs got in a fight

the other night. She unthinkingly stuck her hand into the melee and now

has two bites. One on the hand and the other on the arm. She has to

take a special antibiotic for this along with the solumedrol infusions

which continue (creatinine still not down). Tues all the doctors meet

to see what the next step will be. Surgery most likely. Exploratory to

see what the kidney is doing. Somehow she is managing very well. She

never gives up though.