Ali is Now closer to ESRD: was Re: To tell or not to tell.

[Guest guest]

Hi Ali,

I wish I was there to give you a big hug or to let you cry on my shoulder. I

know it is so hard to hear you have progressed so rapidly. It may be hard to

get your brain around this right now, but believe me you honestly will come

to a place of acceptance and once you are there, things feel like they are in

perspective again. There is a great quality of life on dialysis or post

transplant believe me. Life is precious, each and every day.

I know it feels very overwhelming right now, but end stage renal disease is

most definitely not the worst thing that can happen to you. It is much easier

to manage than deafness or blindness or amputation, or having a terminal

illness. I wish you could read some of Sharon's emails because she also has

diabetes and has had amputations and all kinds of things on top of kidney

problems

but she cherishes every day, and you can get to that place too.

Just be gentle with yourself and give yourself some time to go through the

grieving process.

Remember we are here for you each step of the way dear Ali.

In a message dated 11/12/2004 12:16:57 PM Pacific Standard Time,

Nesi1a@... writes:

> thank you for this thoughful reply.

>

> to update you all, just spoke with the Neph's office... my doc is out today,

>

> but I made them give me the results..

>

> creatinine went up to 3.1 and BUN.... I could sware she said 68, but last

> month it was 18.2, so i'm think i mis-heard it. So now GFR is 17.6

>

> anyhow... I'm truly depressed, as last month I was 2.8 creat.

>

> It is controlling me right now, I can't help it... it's getting worse so

> much

> quicker than expected, and I'm devistated. To me this is the worst thing

> that

> could ever happen. I would rather be blind, deaf, amputated... or anything

> else. I hate doctors, hospitals, needles and disustingness with bodily

> fluids.

> And I don't want to get over it. I just don't want to do any of it. And that

> is

> an option too.

>

> I've applied for jobs lately which passing a physical is contingent upon

> getting the job, well, I'll never get it then, cuz once they see the creat.

> on the

> CBC, they are sure not to offer me the position. I've been a freelance

> meeting and event planner, traveling the world for the past six years.... I

> won't be

> able to do this job anymore, with bad days, and the possibily of

> dialysis....

> and on that regard...

>

> I don't know if I would choose to do dialysis.. as I mentioned above, it's

> the worst thing that could happen to me. It makes me sick just to think

> about

> it. When my mother died, I saw them put a port in her neck near the end to

> administer drugs... I don't want any of that.

>

> I guess I just didnt expect to have such little time.

>

> I'm sorry I'm so negative, but I prefer to expect the worst and be plesantly

>

> surprised if it goes better.

>

> Any yes, I'll have to fly to Florida and tell Grandma much sooner than I

> thought.

>

> And, they have now comfirmed I am type O.

>

> Sorry to be so self-pitying... I'm just so sad

> :.......(

>

> Ali

[Guest guest]

Thanks ..

I appreciate you sharing, and hope I'm in that boat with you!

Just, 2.2 to 2.8 to 3.1 in three months is scary, along with the Neph saying

let's get on the list.

Ali

[Guest guest]

Ali,

when I was 1st diagnosed my creatine was always between 4.0 and 5.0.

My neph said I could have 5-10years. at next appt 6 months later he

said I probably had 2 yrs(labs were unchanged-think he forgot what he

told me last visit.) well it has been over 3yrs since diagnosis and

my last creatine was 5.2. I credit all of this to my BP being stable.

i have never taken steroids or other immunosuppressents. everyone

progresses different but drs can't always accurately predict either.

Hope things go well for you,

christine

> Thanks Bree.. and all others who support telling Grandma. I

appreciate the

> input.

>

> Guess what.. things are progressing a bit faster than expected.

Went to the

> Neph. today.

>

> Upon my diagnosis In Feb of this year, my GFR was 24, with biopsy

showing 40%

> function, no crescents.... The Neph told me 5-10 years before a

> transplant/dialysis...

>

> The Neph showed me today how to figure GFR, and it is now 19.64. I

told him

> that guessing with my calulations, I have about 2 years before

> transplant/dialysis, and he agreed based on the numbers from last

month.

>

> This changes everything.. big difference between possibly 10, now

most likely

> 2 years.. and I'm totally in panic mode... I know you'll all say to

calm

> down. But I know you know how I feel inside. This all bytes!

>

> Today, he did the normal renal panel, however now typed my blood as

well, as

> I have never had that formally done. He said it might soon be time

we discuss

> looking for and getting on the transplant lists. The only one bit

of OK news

> is that my urine was +2, instead of +3 like it has been many times

before

> today.

>

> Will update you with those result tomorrow.. .but couldnt wait to

share my

> hysterics.

>

> I have to be honest and tell you all that the tears are flowing...

I've

> already taken some vallium. Only questions are in my head now...

none of which

> really have answers:

>

> Who can I tell but you all.... Thank you for being here!!

>

> How can I tell my family and friends, now I probably have less time?

> How do I tell my brain that?

> Who is going to take care of me?

> I have no full-time job, as I am a freelancer. How am I going to

support

> myself?

> What if I cant pay my rent, will I be out on the street?

> What if I cant pay my car?

> Why do I have this in the first place, if it's so rare.. why me?

> Why did all those doctors over the past 20 years misdiagnose me...

why would

> you think high BP for years is just " white coat syndrome " ? Why

would the

> pediatrician not investigate blood in the urine of a child... for

years?

> Would it have mattered anyway?

> Who will want to date me, or better yet marry me with this?

> Who will want to date me, or better yet marry once I have a port in

me?

> Will anyone ever actually give me their kidney?

> Is it all worth it?

>

> I feel like a child in a way. Now how to I tell my grandma, as

clearly I need

> to.... she just might live to see 100 and see me, hopefully get a

transplant.

> A cup of tea sounds good right about now.

>

> Thanks for listening to me rant...

> <cryin in NJ>

> Ali

>

>

>

>

[Guest guest]

This is the reply email I got from my Neph today, as he was out yesterday

when I made the nurse tell me the blood results.

" I think we should discuss transplant listing. It is still likely we have

some time.

However this is disappointing and as you can see from the article the

results were not 100% and the steroids were used earlier.  I agree with

the taper and feel we should get you off prednisone it it not doing

much as evidenced by the rise in creatinine. We could wait until next

month for the PTH but I would like to look for secondary

hyperparathyroidism and start to treat early.  DRr. G "

I can't believe this is happening so fast now. It's out of control... Not

fair!!!!!!!

Ali