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I've been quiet lately because life has been really, really busy.… - The Fucking Bluebird of Goddamn Happiness [entries|archive|friends|userinfo]
Zoethe

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[Aug. 21st, 2004|07:37 pm]
Zoethe
[Current Mood |sadsad]

I've been quiet lately because life has been really, really busy. Kristi arrived while I was in Washington, DC, and we have been bouncing her back and forth between my house and our sister Michele's. She is finally getting some treatment, a topic to which I will return in a couple paragraphs.

With an already-full house, we took baby Carolyn for an overnight visit while Mom and Dad got a well-deserved night out for themselves. She was absolutely adorable, but Ferrett and I had to have her in the bedroom with us and we were terrified we'd wake her. She's also a thrasher, so all night long we kept waking up in fear that she was awakening and would then freak out when it wasn't Mom or Dad who came to her. Didn't happen, but still no sleep.

Then Erin left on Thursday. It was really hard to see her go, and I have turned to tell her something on several occasions only to remember that she isn't here. We really had a wonderful summer. I miss her, a lot.

It's only Amy and Ferrett and me in the house tonight. I decided to research the disease the doctors say Kristi has: loin pain hematuria. They told her that they could move her kidney to the other side of her body and it would be fine.

My research tells me otherwise.

This is a rare condition without a known cause, and the treatment is dramatic - and not very successful. I've been reading forums of sufferers and the concensus seems to be that the syndrome tends to move into the other kidney and the pain continues. These people are in serious, life-destroying pain, and there may truly be little or nothing that can be done about it.

I've bookmarked websites, and printed some information so that Kristi can ask all the right questions when she goes to the doctor. Unfortunately, I have to be the one to tell her that there may not be a magic bullet for this after all.

It's an awful, lonely feeling, sitting here with the information and knowing that I am the one who will have to tell her, and tell the rest of my family, how bad this really is. I feel a little sick.
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Comments:
From: lousy_timing
2004-08-22 12:00 am (UTC)
I never know what to say in situations like this. I am so terribly sorry that this burden falls to you, especially right now, when you are missing your daughter and probably could use a bit of TLC yourself.

Giant {{HUGS}} to you, Gini, and I'm sending positive vibes your way as well as some for your entire family and Ferrett. It's been a rough year, which is something no one wishes on anyone but is made all the harder when it's good folk you're watching endure it.
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[User Picture]From: tam_maat
2004-08-22 12:05 am (UTC)
**HUGS**
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[User Picture]From: brujah
2004-08-22 12:10 am (UTC)
*sends love and peace to you and yours*

If there is anything I can do, in the way of research or otherwise, please let me know.
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[User Picture]From: megthelegend
2004-08-22 12:13 am (UTC)
Oh, shit, sweetheart, that's really hard.
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[User Picture]From: nuala
2004-08-22 12:24 am (UTC)
*hugs* It's better that you tell her than for her to make an uninformed decision. Especially one that could just make things worse in the long run. I'm sorry that it has to fall to you, though. Good luck. *more hugs*
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[User Picture]From: scarletdemon
2004-08-22 12:30 am (UTC)
Absolutely. I'm sorry too.
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[User Picture]From: zoethe
2004-08-22 01:58 am (UTC)
I will at least offer to go with her to the next appointment with the uroligist, and take the information I found and ask a lot of hard questions.
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From: (Anonymous)
2004-08-22 03:11 am (UTC)

Ten thousand prayers and is the urologist a nephrologist?

This is going to be a tough row to hoe no matter what. You are in many prayers. Is Kristi's urologist also a board cert nephrologist?
regards,
tamare
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[User Picture]From: zoethe
2004-08-22 03:34 am (UTC)

Re: Ten thousand prayers and is the urologist a nephrologist?

I believe so. This is one of the places where they do this procedure most. I definitely want to talk to him.

Darn this having to earn a living and be at work....
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[User Picture]From: zoethe
2004-08-22 03:34 am (UTC)

Re: Ten thousand prayers and is the urologist a nephrologist?

And, hi! Have you gotten a journal yet? We're all drifting in here....
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From: (Anonymous)
2004-08-24 01:07 am (UTC)

Re: Ten thousand prayers and is the urologist a nephrologist?

and hi back.
no journal for me. it's all i can do to find time to post an occasional SW note...{g} btw...check that email address...
best regards,
tamare
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[User Picture]From: zoethe
2004-08-24 02:25 am (UTC)

Re: Ten thousand prayers and is the urologist a nephrologist?

The echostation email address? I found 327 junk ads and nothing of interest. If you sent me anything of substance, please resend!
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[User Picture]From: salix_03
2004-08-22 12:55 am (UTC)
As hard as it is for her to know, not knowing is more damaging to Kristi in the long run, huh? I'm sorry you're the one having to do this, and the doctors aren't doing their gods damned job properly. *hugs* Wish there was something I could do for you Gin, you're good people and you don't deserve this shit.
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[User Picture]From: sageautumn
2004-08-22 01:26 am (UTC)
I'll continue praying for you and yours.
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[User Picture]From: kmccready
2004-08-22 02:43 am (UTC)
Just some :::hugs:::
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[User Picture]From: iggy182
2004-08-22 03:15 am (UTC)
It occurred to me a few times lately, "Hey, What about Kristi?", but it wasn't my place to ask.

I'm sorry that things don't seem as cheery as the doctors are saying, but two things occurr to me:

1) the patients state of mind plays a big role in treating any condition.
Did your research tell you about the effect of not treating it, as opposed to treating it? You say that the treatment is not very successful, but is it better than not treating it at all?

2) did your research turn up anything indicating that the success rate of the treatment might be better where Kristi is now than at other places that have tried it? Could it be that the doctors are genuinely hopeful for success and are trying to bouy her spirits as well?

Just a couple of thoughts.
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[User Picture]From: zoethe
2004-08-22 03:36 am (UTC)
The people who are not receiving treatment all seem to be on the massive amount of pain meds that Kris is on - it just gets worse. And the Cleveland clinic is the top place for treating this.

It's not pretty. In any way.
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From: iggy182
2004-08-23 01:24 pm (UTC)
I really do hope that they're able to treat her successfully. It's hard enough trying to deal with a loved ones' serious illness when it's more mainstream.
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[User Picture]From: roadnotes
2004-08-22 04:37 am (UTC)
Ah, shit. I'm sending good thoughts your way, but that's a really sucky situation for you.
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[User Picture]From: susitna
2004-08-22 04:40 am (UTC)
I don't really know what to say, so I'm hugging you a lot long distance.
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[User Picture]From: zoethe
2004-08-22 04:20 pm (UTC)
Thanks, sweetie. I love you so much.
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[User Picture]From: albumlady
2004-08-22 05:11 am (UTC)
Oh hon... My thoughts and prayers are with you and your family. So happy to hear from you, yet sorry the news is such.
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[User Picture]From: kid_lit_fan
2004-08-22 07:28 am (UTC)
This is the sort of thing that no words can fix (unless they're "I have a magic wand that specializes in kidneys," but I don't.). I'm sorry, I hope it works out as well as it can.
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[User Picture]From: batshua
2004-08-22 08:15 am (UTC)
...

Oh, Gini. Much hugs. That's all I can really say.

Much, much hugs. And may the doctors do everything possible.

I hope everyone gets the strength they need to handle this.
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[User Picture]From: dream_labyrinth
2004-08-22 08:30 am (UTC)
*hugs*
I'll keep you in my prayers.
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[User Picture]From: wolflady26
2004-08-22 09:11 am (UTC)
I'm so sorry that you and your family are going through this hell.
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[User Picture]From: call_me_harmony
2004-08-22 10:29 am (UTC)
You all remain in my thoughts. {{{hugs}}}
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[User Picture]From: zoethe
2004-08-22 05:43 pm (UTC)
If I think of anything, I will. Thanks, sweetie.
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[User Picture]From: zoethe
2004-08-22 05:44 pm (UTC)

Re: One Suggestion

We've actually reached the "rare disease" diagnosis stage now, but as i said to someone else they are still pursuing some other channels. I hope you're right and they can find something else.
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[User Picture]From: happydog
2004-08-22 07:05 pm (UTC)
this is not good...but is it possible that the information that you have may be outdated, that they may have come up with a newer treatment?

My thoughts/prayers go out to you & Kristi, as ever.
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[User Picture]From: zoethe
2004-08-22 08:00 pm (UTC)
I was definitely trying to dismiss the 8-year-old studies from consideration. And to take into consideration that the people who continue to talk about it are the ones for whom the procedure did not work. She may be one of the lucky ones, but considering how the rest of her luck has gone, I don't think we should count on that.
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[User Picture]From: dandelion_diva
2004-08-22 08:37 pm (UTC)
I'm so sorry. I wish there was more I could do then send good thoughts and vibes.

***HUG***

Gessi
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[User Picture]From: apostate_96
2004-08-22 09:28 pm (UTC)
Having to be the bearer of bad news is never a fun job. Sometimes it's harder when you're having to do that job when you're not even the cause or responsible.

*Hugs*
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[User Picture]From: justbeast
2004-08-23 02:51 pm (UTC)
DOHHHH. :(

I'm sooooo sorry that you have to deal with all of this!
Unfortunately, you're the strongest and the most capable around there, so it falls upon your shoulders. :(

*HUGS*

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[User Picture]From: letoile82
2004-08-23 10:19 pm (UTC)
My brother was diagnosed about 2 years ago with Chiari Malformation. Basically, it's a condition where the spinal cord/brain stem is overcrowded, and it caused fluid to build up in his spine, and he was losing movement in one of his hands.

The only real option they had for him was surgery, which required drilling into his skull, and actually removing a small piece of his brain (he'll never live that one down in this family). Needless to say, it was an extremely painful experience. And unfortunately, it doesn't always work, and there is a large chance the fluid will build up again and that he'll have to have another surgery inserting a shunt into his spine, to continuously drain the fluid.

Unfortunately, with rare conditions, you have no idea as to normal procedure and treatment. I mean, if someone has cancer, you know about the options of radiation and chemo, etc. It's scary, but it's a lot easier to handle because you know something about it, and you probably know people who have survived it.

Hopefully there are enough resources out there for you to get an better sense of how your sister should proceed, and I really hope things work out well for your family.
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