To Mojo - Re Creainine

June 10, 2004

Dear Mojo . . . Yes, a 4.9 creatinine is very high and definitely a

warning sign. In Jane's case this rejection episode is treated with

large infusions of solumedrol (sp?), which is some sort of high powered

steroid, to try to jump- start the kidney. This kidney, which is her

second one,was already 25% necrosed when this current high creatinine

started so we don't know how much more damage there is. If the kidney

fails, she'll go back on dialysis which she dreads. She was on dialysis

22 months before her first transplant (kidney/pancreas) and 8 months

after the first kidney failed before she received the second kidney.

She will go back on the list for another transplant if she loses this

one. For some utterly wonderful reason the pancreas has hung on through

everything and completely eliminated the diabetes. Also, although she

dreads dialysis, she realizes its lifesaving qualities and knows people

who are on dialysis permanently because they aren't qualified for a

transplant.

Both of her sisters offered her a kidney but were turned down

because of protein in the urine which neither had any notion she had and

were told it wasn't a problem at that time but could be a problem in the

future. They were both stunned to know this because both look healthy

and feel healthy. Both of Jane's donor's were victims of brain bleeds,

both were women, and Jane has always felt unbelievably grateful for the

families of these women who allowed their mother's organs to be donated.

From the first woman, two people received her kidneys, several received

parts of her liver, skin, and other organs. These organs have given life

to many people and all recipients are truly humbled by this sacrifice.

It's just that some organs are stronger than others and some recipients

are more successful at " hanging on " to the new organs.

What will " cure " these failed organs will be, and could be now, the

introduction of stem cells. But the politics and religious fervor in

this country have blocked this life-saving treatment and people die

every day waiting for an available organ because there are so few. Jane

has been fortunate to have received two already. But a stem cell

transplant would regenerate the organ and also would require no

immuno-suppressant drugs. This is the treatment of the future but God

only knows how long it will take to get the idea across to the uptight,

hidebound folks on the far right who look at the whole thing as the

" work of the devil " . They would quickly change their tune if they had a

child who needed a transplant. Or a spouse. Or a parent. Jane takes a

handful of drugs twice a day, including prednisone. The drugs improve

all the time but are still hard on the system and leave the patients

with no immunity. For now though, they are lifesavers despite the awful

side effects some people suffer.

And yes, she gets cranky and aggressive sometimes when the toxins

build up in her blood while the creatinine is rising and she doesn't

know it. Also some of the drugs cause problems with personality changes

especially at first. Sometimes I marvel at how strong the human body

can be. When I see what she's been through and still maintains a good

attitude (most of the time) I have to

know there's more fight in us than seems possible sometimes.

You asked me some powerful questions and you cn see it put me on my

soapbox. I appreciate the chance to talk about transplants since our

family has been impacted seriously in watching Jane get her life back

twice. Now we may be in need of a third miracle.

You hang on to your kidneys. Sounds as if you're on the right track

and have earned the " kidney purple heart " for a battle well fought.

Lots of love, C

June 11, 2004

WOW! That is a lot to handle. I know I've gone through some rough times

with my kidneys but your story puts it in perspective. I mean, I always

realized what lays ahead if it comes to that, but hearing it from a person

who has her daughter go through this is a bit different.

I have been on solumedrol quite a few times. My nephrologist at one point

commented the dosage we get when are kidneys are failing is " strong enough

to kill a horse " and he said he couldn't understand how a human body can

take it. Three days of 1gr of solumedrol each time I've had it. One time it

was every two months for about 8 months.

Dialysis is something I also dread. I know I won't have a choice and I'll

be glad there is such a treatment, if and when it comes to that, but I would

love to know that maybe they will come up with something better. As you say,

there is so much political stuff going on, and it shouldn't when it comes to

saving people's lives.

, I don't know whether your other daughters have been doing something

about their protein in the urine, but the news is that it is not as harmless

as they thought. Loosing protein was considered no biggie if other tests

came out ok. I know, I've been loosing protein for 17 years, and unless I

had high creatinine they wouldn't do anything, they would just treat the

symptom, the swelling. Now, there are studies proving that an extended

period of high proteinuria will cause kidney damage. I know La Jolla

Pharmaceutical has approved one drug, that I was trying to get during the

trial phase. If I remember correctly it actually targets that problem, but I

don't know if it would be considered for your daughters. Its Riquent, but

it's given to lupus related kidney problems. I don't assume your daughter

have lupus, or do they?

I'm sure you're on top of all the issues and I do hope everything will

turn out ok once again. It's such a pity though, that every time your

daughter gets a kidney, she doesn't know how long it'll last. Good luck,

I'll be praying for your family.

Mojo

To Mojo - Re Creainine

> Dear Mojo . . . Yes, a 4.9 creatinine is very high and definitely a

> warning sign. In Jane's case this rejection episode is treated with

> large infusions of solumedrol (sp?), which is some sort of high powered

> steroid, to try to jump- start the kidney. This kidney, which is her

> second one,was already 25% necrosed when this current high creatinine

> started so we don't know how much more damage there is. If the kidney

> fails, she'll go back on dialysis which she dreads. She was on dialysis

> 22 months before her first transplant (kidney/pancreas) and 8 months

> after the first kidney failed before she received the second kidney.

> She will go back on the list for another transplant if she loses this

> one. For some utterly wonderful reason the pancreas has hung on through

> everything and completely eliminated the diabetes. Also, although she

> dreads dialysis, she realizes its lifesaving qualities and knows people

> who are on dialysis permanently because they aren't qualified for a

> transplant.

> Both of her sisters offered her a kidney but were turned down

> because of protein in the urine which neither had any notion she had and

> were told it wasn't a problem at that time but could be a problem in the

> future. They were both stunned to know this because both look healthy

> and feel healthy. Both of Jane's donor's were victims of brain bleeds,

> both were women, and Jane has always felt unbelievably grateful for the

> families of these women who allowed their mother's organs to be donated.

> From the first woman, two people received her kidneys, several received

> parts of her liver, skin, and other organs. These organs have given life

> to many people and all recipients are truly humbled by this sacrifice.

> It's just that some organs are stronger than others and some recipients

> are more successful at " hanging on " to the new organs.

> What will " cure " these failed organs will be, and could be now, the

> introduction of stem cells. But the politics and religious fervor in

> this country have blocked this life-saving treatment and people die

> every day waiting for an available organ because there are so few. Jane

> has been fortunate to have received two already. But a stem cell

> transplant would regenerate the organ and also would require no

> immuno-suppressant drugs. This is the treatment of the future but God

> only knows how long it will take to get the idea across to the uptight,

> hidebound folks on the far right who look at the whole thing as the

> " work of the devil " . They would quickly change their tune if they had a

> child who needed a transplant. Or a spouse. Or a parent. Jane takes a

> handful of drugs twice a day, including prednisone. The drugs improve

> all the time but are still hard on the system and leave the patients

> with no immunity. For now though, they are lifesavers despite the awful

> side effects some people suffer.

> And yes, she gets cranky and aggressive sometimes when the toxins

> build up in her blood while the creatinine is rising and she doesn't

> know it. Also some of the drugs cause problems with personality changes

> especially at first. Sometimes I marvel at how strong the human body

> can be. When I see what she's been through and still maintains a good

> attitude (most of the time) I have to

> know there's more fight in us than seems possible sometimes.

> You asked me some powerful questions and you cn see it put me on my

> soapbox. I appreciate the chance to talk about transplants since our

> family has been impacted seriously in watching Jane get her life back

> twice. Now we may be in need of a third miracle.

> You hang on to your kidneys. Sounds as if you're on the right track

> and have earned the " kidney purple heart " for a battle well fought.

> Lots of love, C

>

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June 11, 2004