Where do I begin

[grannyM]

Hello everyone.  This is my first posting after my introduction.  To recap: I went to a health fair and had some blood work done.  I received results in a letter.  My GFR is 10, letter said 15 or less is kidney failure.  Reading other post I then looked up other results
my creatinine is 4.4 the BUN is 56 there is lots more but none of it means anything to me.  My family Dr received a copy of the results and I have an appointment Sept 5.  So I am thinking things aren't too bad if it can wait a month.  I work two part time jobs, feel great, eat too well, no hint anything is wrong.  Praise the Lord! I  started to tell my husband about the test results and when I said possible kidney failure he was mad. End of discussion. Said it was because I gained weight.  So I will leave him out of things for now. He is not a caregiver type so I am on my own for now. (I must add the man is great in so many ways, could tackle a bear, but a dirty diaper, or upchuck  takes him down.)  The expense. We just went through a financial melt down so there is no nest egg. We are working our way up out of a deephole right now. How do you afford it? I read some of the caregivers post and I have one child that lives near me but she has a disabled husband so she is sole support for her family and I can't ask her to take me on too.  If GFR 10 isn't good then I haven't much time.  I want to get some idea before my Dr just passes me off to some neurologist.  What can I do before my appointment Sept 5? Which hopsital is better for kindeys in Missouri?  Is it possible to just hang at 10 or improve some?  No other health problems and i made it to 60 so I have had a good life so far. I don't drink or smoke. Few sodas (Sprite or 7Up) already low salt for my husband. I am overweight so will work on that, sure to help me. I did find a dialysis center only one 25 miles away.  I am very rural. Nearest Neurologist is 90 miles.  I know it will be one day at a time but I am not big on surprises.  Whew!!!!!  Calm...Calm.... You all made it so I will too.  Whew,,, now I feel better.

[iketchum]

Sorry to hear what your going through. It sounds very familiar to me. I had so many questions and worries because I was looking at the big picture and it scared me. I finally talked to the social worker at the center. She said to be aware of the big picture but deal with what is in front of you at the moment. Dealing with one thing at a time made me feel more in control I guess. My wife also has trouble dealing with my problems. Give him time to accept you are sick, like you said , he loves you.
Please remember you are not alone here.

[cariad]

I am sorry your husband is not more supportive, but it sounds like you have a great attitude about it, and you are capable of fighting this.

GFR 10 and creat of 4.4 is definitely time to be thinking about dialysis and which access to choose. I am far from the best person to talk you through this, but there was just a wonderful thread on how to prepare for dialysis, so maybe you could find it (or someone could point you to it) and read up. It is great that you are still feeling well, but decline can happen pretty quickly, so it is best to learn what lies ahead now.

I am sure your husband can be lovely, but your weight did not 'cause' your kidney failure. In fact, your weight gain could be a symptom (fluid retention) or it could just be one of those things. I hope you were looking for a nephrologist and just wrote neurologist accidentally. A neurologist won't be of much use right now.   

I cannot answer most of your questions - I do not know hospitals in Missouri, but a large teaching hospital is usually the way to go. Isn't Washington University in Missouri? I've heard good things.... You could hold steady or improve, but I would say those chances are slim. Do you want to try for a transplant? That is a whole separate set of issues there. Dialysis is covered by medicare, so if you do not have other insurance, you might also want to read up on that, and a social worker should be able to give you more details about ways to afford whichever options you want to puruse.

  I am sure others will be of more help.

[grannyM]

 

I hope you were looking for a nephrologist and just wrote neurologist accidentally. A neurologist won't be of much use right now.

   

   Yes, i got it wrong. New terms, and things to learn.






EDITED: corrected quote error - Bajanne, Moderator

[willowtreewren]

Granny,
You are doing the best thing possible - learning what you can before your doctor appointment.

Be sur to take a list of questions with you to your appointment so you don't forget to ask the. Take a notebook, too, so you can take notes. It is SO hard to remember everything the doctor says.

Be proactive. Go ahead and get on the transplant list if that is an option. Even if you decide NOT to get a transplant, your time on the list can accrue. This gives you future options.

It is really the unknown that is scary. The more you learn, the more in control you will be and that is a good place.

Best wishes. We are here for support.

Aleta 

[RightSide]

I'm sorry to hear that you feel so overwhelmed at first.  Just about all of us did; it's normal.  I'm still looking for that one ESRD patient who, when told s/he had kidney failure, said:  "Kidney faliure?  No problem!  Dialysis?  I just know I'm going to enjoy it!  New regimen?  I never much liked eating food or drinking fluids anyway!  Congestive heart failure?  Sounds exciting, I can't wait!"   

But most of us didn't respond that way.

Now:  I think the best use of your time till September 5 is to learn as much as you can about the changes that ESRD may make in your life. This includes medical issues (including various treatment options), social issues, financial issues.  There's plenty of places to learn on the Internet. The American Association of Kidney Patients (AAKP) website, for example.

Medicare will pick up 80% of the cost of your treatment (dialysis and most other treatments you need).  Because back in the 1970s, ESRD patients lobbied successfully to get Medicare to pay for their treatment.

If you have private insurance, you need to have them work out a Coordination of Benefits agreement with Medicare, in which Medicare will become your primary insurer, paying that 80%; and your private insurer will be your secondary insurer, paying the remaining 20% (less deductibles and co-pays, which you pay).

Your husband's reaction is normal.  When disaster strikes, the first thing many will do is ask "What did I do wrong to cause this?"  It's part of how we make sense out of life--to try to figure out causes for everything.  The alternative--that many disasters just happen for no reason--can be quite depressing.  But eventually comes a realization to all of us that getting angry or feeling guilty doesn't solve anything.  Because ESRD isn't intimidated by anger; nor is ESRD more forgiving of the guilt-ridden.

Take care.

[grannyM]

Thanks for the financial info. That helps alot.  I was shocked with my test result letter but now think it was better because I was alone and could think about it.  Look up some things online.  For now I am not mad or scared.  I just want to learn the kidney language.
So I will understand my Dr.  and decisions better.  Had I found this site first I would not have told my husband. I just wanted to talk about it and now I can.  My dear husbands' reaction is normal for him.  He couldn't stand any talk of childbirth or stay with me during it. My first pain and he was out of there.  If I am calm and say it is all OK he will be fine.
When I see the Dr and get confirmation, I will sign up for every finacial aid, donor list and live donors too.

[Hanify]

The biggest thing is they'll want you to decided whether to do haemo or PD.  If you write hemo or pd in the seach box you'll find lots of discussions about how it works.  I'm doing PD for instance, and that means 2 litres of fluid in my 'tummy'.  I have a machine that I hook up to at night for 9 hours, while I sleep.  Some people do this, but don't have the fluid in during the day.  it all depends on you.  There's no blood involved, and no needles.  BUT there are lots and lots of boxes - so you need space for them to take up this option.  I get 40 boxes (about the size of a box of A4 paper) delivered once a month!  Also, there's lots of rubbish to get used to.  Some people go into a hospital renal unit 3 times a week for 4-5 hours each time.  Some people do nocturnal stints in a unit which is usually more nights, but less time at one go.  Some people do the whole thing at home themselves. 

[Rerun]

You might want to get tested again.  I wouldn't trust some bus that stops by at a health fair.  I hope things are better than you thingk.

[grannyM]

Update.  I will have lab work done Thurs am and see a Neph Dr on Monday.  Then I should have more information.
I am way overweight so as of today on a diet so I will work to wards transplant when weight is down. 
Cheers!!! even found a thread just about dieting. 
Thanks to everyone for all your encouragement.

[Rann]

in just a few short months I have learned the hard way to never say never. When you look at all the options available if you do need dialysis, choose the one you want to do based on your situation right now. THings change and methods of dialysis may have to change.

Our family decided that helping my 87 year old dad do PD tteatment at home would be the only way to go.  We had an appointment scheduled with the surgeon to discuss having a PD catheter inserted. We talked ugly about going to a hemo center. We thought we had made an informed decision and threw all others out the window.

After being rushed to the hospital, an emergency perm cath was placed in dad so that he could start dialysis as his kidneys had finally failed. When he returned home  from the hospitalhe received hemo dialysis  at the dialysis center 3 times a week for a couple of months. He hated it.....or was that because it wasn't "our" first choice?

He then had a pd catheter put in and then we had to wait for that to heal, for the center to flush it out on  several days before his hemo treatments and then we received a week of instruction BEFORE we ever began pd at home.

Things are not working out at home due to a fall where he hit his head, and increased dementia.
We may have to go back to dialysis in the center.

You will see on these boards that people go back and forth with the method of dialysis depending on how their bodies are responding to the treatment.

I wish I had found these boards before we ever started.....consider yourself lucky to be surrounded by such a friendly group with good insight based on their experiences. They will help you know what to ask and why to ask it.

Good luck.