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RE: kidney failure - 5/11/2011 12:55:56 AM

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From: Puzzled
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quote:

Ken, hausboy, myself and hopefully others will be around to answer any questions you may have after you talk to the attending.

And the rest of us, will be thinking of you and sending our positive energy. *hugs*
Are you a bit better (for me) this morning Lafayette?

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RE: kidney failure - 5/11/2011 1:19:38 AM

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I'm sorry. I didn't mean to imply others wouldn't be here for her.

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RE: kidney failure - 5/11/2011 1:23:18 AM

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quote:

ORIGINAL: tazzygirl

I'm sorry. I didn't mean to imply others wouldn't be here for her.

I'm sorry too, I didnt ment it the way you look at it....

I cant offer medical advice, I only can offer an ear and listen to everything Lafayette wants to get of her chest. And so do more of us.
We are all concerned if I may speak for someone else.

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RE: kidney failure - 5/11/2011 1:36:47 AM

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I echo hausboy's original comments. Even if someone on the boards was an MD specializing in your situation there is far too little information to go on. I get the impression you just wanted to reach out because you are scared of the unknown. I completely understand. *hugs* I know that people may be intimidated by MD's and MD's will often forget to phrase things in layman's terms, in order to be easily understood. So please, I do hope you will ask what this all means for you and insist your MD respond in understandable terms.

Given your history of regular blood tests, I can't help wonder if there might be something other than the diabetes that has created the renal failure you are experiencing. (Sorry, just thinking out loud.)

Take care and know people here are sending good thoughts your way.

< Message edited by DeviantlyD -- 5/11/2011 1:39:53 AM >

(in reply to Charnegui)

RE: kidney failure - 5/11/2011 1:46:19 AM

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quote:

ORIGINAL: bemyslut

Lafayette

Before jumping on the dialysis/transplant wagon, learn more about your renal disease. There have been some pretty ignorant posts thus far regarding Renal failure..."Immediate dialysis or ACE inhibitors" will save you clearly displays depth of knowledge (yes, internet forums are replete with individuals who graduated Summa Cum Laude from the University of Wikipedia or got Magna Cum Laude from Google U.) You can't just walk into a dialysis center and demand dialysis--it requires a prescription from a physician--just like ACE inhibitors. An A-V graft can not be immediately used for dialysis. It can take several weeks to months for the venous side of the fistula to mature. Secondly, you need to discern if this is Chronic Renal Failure, Acute Renal Failure or acute on chronic. Using Creatinine as an index of renal function has fallen by the wayside; GFR is the new standard. People do not require dialysis until GFR falls below (15-20)...meaning: you can have renal failure and still live a very fulfilling life without the need for trips to the dialysis center.

When you speak with your physician (NOT the Emergency Room Physician) (hopefully he will have requested a consult with a Nephrologist--a kidney specialist), ask him how far advanced the disease has progressed, if there is chances of reversing it or at least slowing its progression and what your options are in the interim.

Hausboy said it valiantly: DO NOT RELY ON THIS FORUM TO STEER YOUR TREATMENT COURSE--from the quality of the posts thus far, it is evident there are numerous graduates from the University of Wikipedia and Google University!

You are relatively new here, but don't worry, I would never rely on this forum to steer my treatment course. I was actually using it as a place to get my questions as kidney failure is somethiing I am really unfamiliar with.

Of course the best advice, having someone with me, is sadly impossible. The message board is my "companion" when the doctor asks questions.

(in reply to bemyslut)

RE: kidney failure - 5/11/2011 2:22:46 AM

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quote:

ORIGINAL: LafayetteLady

You are relatively new here, but don't worry, I would never rely on this forum to steer my treatment course. I was actually using it as a place to get my questions as kidney failure is somethiing I am really unfamiliar with.

Of course the best advice, having someone with me, is sadly impossible. The message board is my "companion" when the doctor asks questions.

I'm glad you are not relying on the comments in this forum about what to do, but then again, you are a "grown ass woman", as the saying goes, so you would know what's best for you. ;)

Did they diagnose you as having acute or chronic kidney failure? It seems like a sudden onset from what you've described, which would be acute. As I do not have any idea as to how adept you are in this area, here is my suggestion to you on researching: When I search for anything medically related, I generally only trust .gov and .edu sites and those I know are reputable, such as the Mayo Clinic's web site and Web MD. Nationally recognized charitable organizations can be a good source of information as well. Information outside of these sources are not always reliable. I have used wikipedia, but only as a means of getting search terms and using some of their references, when they are reliable. I find wikipedia to be a good catalyst, but I can't help but be a little wary of their information as there can be inaccuracies.

I am sorry you do not have someone with you. :( A friend, a family member, a co-worker you would feel comfortable with, a neighbour...is there anyone you can call to be with you?

The only people I have known with renal failure (outside of chronic states) had other life-altering conditions that actually led to their renal failure. This isn't your situation since you're obviously not unconscious. ;) So I am sorry to say, but I have no examples of experience to offer you. :(

(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 2:55:57 AM

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Yea, it would be nice to have someone here with me. Be nice if someone sent me flowers. Be nice if I had someone to stand by me. I don't. For reasons imaginary built out of anger, my son doesn't speak with me and doesn't care that I'm in the hospital. His exact words were "kidney failure is no big deal, it's treatable. I'm busy, call me later." He seems to think I'm some crazy hypochondriac making everything seem worse when it is in truth a "little thing." My "little things" have been having diabetes, ankle surgery, ruptured discs in my back, and now kidney failure. In his eyes they are all a minimum thing the doctors can easily treat.

Friends either don't drive or dealing with their own situations that are drama ridden (one best friend's mother is dying).

I haven't spoken with anyone aside from a first meeting with the nephrologist. I should see him later today to get more detail on what is going on. Honestly, none of it makes much sense to me at the moment. NOT because I don't understand all that "fancy medical jargon," but because this really came out of the blue.

The swelling that is going with this is even worse. Yuk!

(in reply to DeviantlyD)

RE: kidney failure - 5/11/2011 3:12:31 AM

CynthiaWVirginia

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(Lights a candle.)

I don't know what else to say. Glad to hear that the doctors know what is wrong and that you have options for treatment.

Would it cheer you up to know that my neighbor is fine? She had her kidneys fail...says it was some bad reaction to antibiotics...soon after she had her baby. Spent years going for dialysis several days per week, was tired and had to watch her protein and probably other things. She had surgery for a donor kidney several years back and is as healthy as a horse and her baby is now around 13 years old.

Best wishes to you...oh...and good thing you brought your laptop to the hospital. Anything is better than staring at those walls and waiting.

Pssst...if they give you one of those gowns that lets yer butt peek out from the slit in the back, ask for a second one and wear it like a robe, tying it in the front.

*******
Edited to add that I read your last post, LafayetteLady, and I am sorry to hear about your son. Even when mom drives me batshit crazy, I am the one who takes her to the doctor, hospital, or emergency room. My family thought my problems were little things as well, until they lived long enough to start having their own "little things".

I was not trying to make light of what you are going through.

< Message edited by CynthiaWVirginia -- 5/11/2011 3:21:12 AM >

(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 3:58:32 AM

Rule

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quote:

ORIGINAL: LafayetteLady
Be nice if I had someone to stand by me. I don't.

Someone - a stranger - from community social services, from a random church, from a volunteer organization, from the Salvation Army, another patient you meet at the hospital, one of the volunteers who often are active in hospitals?

Can it be that your son is in denial?

(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 4:37:41 AM

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LafayetteLady: I'm sorry to hear about your family and social situation. :(

Saying this came out of the blue does suggest it's due to something other than the diabetes, but that is just a guess on my part.

Again, good luck with it all. I hope you get some answers. *hugs*

(in reply to Rule)

RE: kidney failure - 5/11/2011 5:14:06 AM

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LafayetteLady,

I'm so sorry to hear about this. The only thing I can offer is positive thoughts and prayers. Complications such as this ( I'm assuming, if I'm wrong please forgive me) can hit a person blindside and no amount of awareness to the possibilities prepares you for those words from the doctor.

Again, positive thoughts and prayers to and for you.

~Bones (AKA CarrieO)

(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 5:26:07 AM

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quote:

ORIGINAL: Rule

quote:

ORIGINAL: LafayetteLady
Be nice if I had someone to stand by me. I don't.

Someone - a stranger - from community social services, from a random church, from a volunteer organization, from the Salvation Army, another patient you meet at the hospital, one of the volunteers who often are active in hospitals?

Agreed, there should be volunteer organizations, or why not look around here a bit? Isn't anybody from the board near LafayetteLady and could accompany her? Just going along and making notes so she'd feel a bit less lost and overwhelmed by the situation.

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RE: kidney failure - 5/11/2011 5:42:59 AM

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LafayetteLady, i am just going to say this. If one of my friends was going through something like this no matter what drama was going on in my life, i want to know so that I can make the decision of whether or not i can take a few hours out of my day to help her. I can't tell if you have even TOLD your friends, but to me, as a friend, i would be very hurt and upset if my friend decided i was too busy to help her instead of letting me make that decision. IF you haven't told your friends and tell them what you need - then do so. Even if THEY can't get there with you, they maybe able to help in some way you nor anyone here has thought of. For example, those who can't drive, perhaps they can take a bus or cab to be with you at least the first time or they may be able to get someone to drive them and pick them up without any hassel. Secondly, maybe they can be there with you on a conference call - it may not be in person but they will be there with you. Maybe one of your friends can brainstorm with you to help you figure it out.

From your posts, it just seems like you haven't really told any of your friends yet because you have decided they couldn't help. Hopefully i am wrong. But at the very least -- try the conference call concept with a friend. Also, see if you can record what the doctor says at the very least. That way when you are less in shock you and a friend can listen to it. Tell the doctor to put it in writing for you because you are in shock and are not sure how much you will actually absorb.

angel

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RE: kidney failure - 5/11/2011 8:20:37 AM

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Angel,

My very best friend lives in Germany. No I haven't told her yet, and I should stop putting it off.

My best friend here isn't simply "too busy," she is taking care of her dying mother who can not be left alone. I visited with her last week, and yes her situation is pretty horrendous.

My other dear friend doesn't drive, and while he and the neighbor might make their way here, his support and help is in taking care of my pathetically needy cat who barely functions when I'm not home. This friend however, is availablea to talk whenever I need him.

A cab from my house to the hospital is going to cost about 50 bucks round trip and there is no bus. I don't live in that kind of area.

The up side is I have constant internet and cable television at the hospital, something I don't have at home. Considering the difficulty of getting the doctors in here to speak with me, at lease I'm not bored. It does quickly cause me to lose my patience. Like now. I know the doctor arrived nearly 2 hours ago, still haven't seen her, but she is ordering changes. That shit don't fly with me.

They did contact my urologists, which will be great if they ever get here. Because of the situation, I was admitted, and the hospital called the on called nephrologist. Since I have no insurance, I'm not really in a position to go searching for one I like. This whole thing went down in a very unpleasant way. By that I mean, the ER doc telling me I am in kidney failure like asking me out for coffee. The nonchanlance was horrible.

My understanding at the moment is I have two choices.....stay here and deal with idiot P.A.s' and the like, or go home and be dead in two days. Sadly, I don't know enough about kidney function to know if they are exaggerating.

(in reply to barelynangel)

RE: kidney failure - 5/11/2011 8:27:23 AM

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My suggestion is to call the nurse and request that the doctor stop by when they have a chance to explain what is going on... but let her know it is a need and not a want.

Also, because there is a medical social services department (I am guessing), request a visit from someone from there ASAP.

And even if you aren't a churchy person, perhaps request someone from the visiting clergy; if you aren't comfortable with religion you may fins the folks at the local Unitarian church to be pretty low key.

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(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 9:11:47 AM

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quote:

ORIGINAL: LafayetteLady
My understanding at the moment is I have two choices.....stay here and deal with idiot P.A.s' and the like, or go home and be dead in two days. Sadly, I don't know enough about kidney function to know if they are exaggerating.

A lot would depend on your test results. Very high Potassium can cause heart failure. A buildup of waste products in the blood can poison your body. Too mcuh fluid can result in fluid filling your lungs.

Do what the nephrologist suggests to get stabilized and then figure out what needs to come next.

(in reply to LafayetteLady)

RE: kidney failure - 5/11/2011 9:32:36 AM

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*offers hugs to LL*

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RE: kidney failure - 5/11/2011 12:54:04 PM

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I can`t say anthing more than or Help you more than:
I will pray for you..

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RE: kidney failure - 5/11/2011 1:11:34 PM

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Adding my prayers & well wishes for you, LL.
(((((Hugs))))))

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RE: kidney failure - 5/11/2011 1:53:18 PM

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This is by no means comprehensive--and Tazzygirl & her experience (really, I don't know who on this board might have more first hand experience with Dialysis than a dialysis nurse!) DomKen and some of the others who have lived through it...chime in.

This is just a general list to get you started:

1. What is my diagnosis/what is going on right now?
2. What caused this to happen?
3. How do I prevent this from happening again?
4. What is my treatment plan? How long is the treatment for? What does it involve?
5. Will there by any changes to my medications? If so, what are the potential side effects? Is there anything life-threatening (signs/symptoms) that I should watch for?
6. What other treatment options are available?
7. What modifications do I need to make to my diet? Are there any foods/drinks I need to avoid? (contraindicated)
8. What is the expected outcome? What is my best case scenario? What is the worst case scenario?
9. Can you recommend a specialist?
10. Make a running list of any medical terms used--and create a little glossary for yourself.
11. Will this affect any of my ADL? (adult daily living needs) Bathing, dressing, grooming, eating etc.
12. What is my timeline for recovery? How soon can I [fill in the blank--exercise, eat normally, drive etc.]

If you belong to a local church or synagogue, they often can send someone from the congregation. If you don't, ask the hospital to send someone from "pastoral care" for whatever religious affiliation you may have. If you have none--or one that the hospital cannot accommodate--you can still ask for someone from their pastoral care service to visit you. If nothing else, you can have some company, a listening ear, and they may be able to help you find a patient advocate.

Check out this website: www,kidney.org It's the National Kidney Foundation, and they have a wealth of resource and information. If you want to talk to someone....Toll Free Help Line 1-888-33K-IDNEY (1-888-335-4363)

here was my first quick look at NJ support groups--I'm sure there are more, associated with your local hospitals:

FREEHOLD, NJ
Name: Circle of Life Organ Transplant Support Group
Location: CentraState Medical Center
Health Awareness Office
Route 537 West
Freehold, NJ 07728
Time: 3rd Thursday of each month, 7:00 pm - 9:00 pm
Contact: Stanley Epstein, 732-370-2150, [email protected]
Additional Information: The Circle of Life Organ Transplant Support Group is open to all pre and post transplant patients, caretakers and friends. The mission of this group is to help and support members to persevere and cope with the physical and emotional challenges during this period of their lives.

SUCCASUNNA

Name: Kidney Korner
Location: 103 Main St
Succasunna, NJ 07876
Time: Every other month; call for dates
Contact: Joanna Smith, LCSW, 973-584-1117
Additional Information: Support group for dialysis patients, transplant recipients, and family members.

(in reply to VirginPotty)

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