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Author Topic: Do you think I should start dialysis?  (Read 7989 times)
Beth35
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« on: March 10, 2011, 06:42:52 AM »

Hello all.  I have not been here in a while.  I have had soooo much to do as far as trying to get insurance and such.

My neph told me she would still see me and she charged me a lower amount of money to come and see her.  Turns out the labs got pretty bad.  GFR went from 16 down to 12.  The creatinine went from 3.6 to 4.7 so not so good.

I have been fighting a bad cold and then the last few days I have felt really sick to my stomach.  I began dry heaving and it has not been pretty.  My cold is gone and I'm still feeling this way.  I called my neph and she said that it was probably time to go into the hospital and have a line put in so that I can start dialysis.

I had two fistula surgeries lately and neither of them worked.  The thrill was gone in a matter of weeks, both times.  So I was due to see the surgeon about a graft next week.

I told her to let me think about it.  I want to be sure I'm feeling sick b/c of the kidneys.

So what do you all think?  Should I go in?  What were your levels before you started dialysis?  Do you think I need to start now?

This will be my second time on dialysis.  I was on for five years starting at the age of 20 and then getting my first transplant at the age of 25.  I am NOT looking forward to doing this again. :(
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
monrein
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« Reply #1 on: March 10, 2011, 06:56:21 AM »

I've been where you are now (5 years of D, then 23 year long transplant then back on D) and so I think I understand how you're feeling.  I started back on D when my GFR was at 16 because I felt beyond wretched.  We're all so different but if you're asking this question I think it's because you know the answer...how tired are you of feeling so sick? 
There's nothing to look forward to about D, BUT if it means feeling any better and not risking further damage to your body in the way of malnutrition then perhaps it really is time.  Only you can decide that you're ready to start again.
 :grouphug; :cuddle; :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
peleroja
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« Reply #2 on: March 10, 2011, 07:21:17 AM »

I know the feeling.  I was on PD for 7 years and now can't do it any more.  Not looking forward to having a fistula.  Bottom line is the sicker you are before you start dialysis, the longer it will take to get reasonably healthy again.  If you feel like crap now, I'd start dialysis.
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Rerun
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« Reply #3 on: March 10, 2011, 07:36:18 AM »

I know the feeling too.  You are not scared of the unknown..... but the KNOWN!  You know what your life will be like.  But, if you want to go on living you have to jump into the lake and start treading water.  You should probably go get your blood drawn to see what your numbers are.  Then decide.  You don't want to get so sick that you can't make decisions.

Best of luck.  Sorry........   :'(
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Beth35
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« Reply #4 on: March 10, 2011, 07:42:51 AM »

I do think it's actually MORE scary now since I know what it's like.  And then add on more fear because I am a single mom and have to take of two other people PLUS myself.  It scares the crap out of me.

I just had my blood done on Friday so I'm sure there is not much of a change there.  Just was hoping to see if there are others who needed to start when their GFR was only 12.  Monrein starting at 16 does help me to better understand that it really depends on how you feel and not some number.  But since the neph told me I would have to start dialysis when my GFR was 10, I kind of got stuck on that number.

Of course she thinks I should go now if I'm feeling bad, but it's so scary to make that jump.  Plus, I do NOT want the line in my chest.  No way - no how.  Now I may not have a choice but that is the thing.  Do I try putting it off and get the graft first?!

I hate making decisions!!!!
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
boswife
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us and fam easter 2013

« Reply #5 on: March 10, 2011, 06:37:04 PM »

My very strong suggestion is to get that graft going! (im not sure about grafts..do they have to mature? or do you use them right away?)  We did the waiting game  and when we finally broke down and had his fistula started, he had to start D  one week later with a cath.  ...  WE were so bummed.  It's not the end of the world or anything, but certainly an inconvience if not needed.  I much wish we had just been more prepared.  All the best to you.   
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
texasstyle
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« Reply #6 on: March 10, 2011, 08:05:23 PM »

The vomiting (even dry heaving) wil not get any better if you need to be starting. Your body is telling you "it's probably" time. Listen to it. Therei s no set in stone GFR number or any number. They are all taken in account for in weather to make the descion or not. One thing that let's you know when it's time is how your quailty of life is. Once you start dialysis and get al that junk out of your blood you'll eel so much better. If they need to start they will put the line in your chest. You'll be ok. The fistula, or access, they put into your arm takes a couple to mature and heal properly before you can use  it. A lot of force & pressure needs to go through it. It needs to be nice and strong. My husband had the line it wasnn't such a big deal because we knew it was not permanent. That chest my dear, is going to be the reason you are going to be with your child. (you said "single mom) Think of it that way.Once a line is in they can do dialysis at any time almost immedietly. Like I said the fistula can't be used for a while. The arm fistula is done in surery. They will bring an artery and a large vein together. You need a big new vein to use.It's your lifeline. I'm sorry you're going throug hall this but dialysis saves lives. Make he best of your life. Do what is he right thing. You & your dr. will discuss what is right for you.
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caregiver to husband using in-center dialysis 4 years
okarol
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« Reply #7 on: March 10, 2011, 08:30:57 PM »

Beth, as I said in my PM, I have mixed feelings about the fistula or graft. Since you have had 2 failed fistula surgeries, and are looking at a graft, I can understand how this can feel overwhelming. More and more we are hearing that heart damage is taking place due to fistula pressure. Usually a chest catheter will suffice short term until a transplant takes place, and if you're working toward that with a living donor, perhaps that's all you need for now, in my opinion. But this certainly should be discussed with your medical team. As was mentioned, if your quality of life is suffering, dialysis will make you feel better, so don't get bogged down on the access issue, and do what will improve your situation.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Des
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« Reply #8 on: March 10, 2011, 09:43:43 PM »

I know some people say once you drop below GFR15 but I know now it is not really about a number it is how you feel. And by the sound of it you feel lousy. So... go and get better. It really does make you feel better, but why am I telling you this you've done it before. :rofl; Good luck and let us know. :flower;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Beth35
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« Reply #9 on: March 11, 2011, 04:05:41 AM »

Thanks all for you advice.  I guess I just wanted to hear it from someone else to make things more "clear" in my head. 

I am going to be admitted into the hospital today and have the cath put in.  Uh.  I have had one before and I HATED it with a passion.  It makes me so sick to think there is something in my body.  And you have to be so careful not to get it wet.  And I may be vein but I don't like things hanging out of my body.  But I need to live right?  So this is what I must do.  I just a bummer.  I still feel like I'm so young having to do this AGAIN.  I was hoping to at least be in my fifties when my kids are grown before I had to go through this rollar coaster ride.

I kind of feel like having a temper tantrum but I can't.  I kind of feel numb like out of body type thing.  It stinks!

But I must shower and leave for the hospital now.  Thanks for your advice and wish me luck!!
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
texasstyle
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« Reply #10 on: March 11, 2011, 04:43:29 AM »

Oh gee Beth I didn't realize until I re read you had been through this before. Sorry! 
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caregiver to husband using in-center dialysis 4 years
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« Reply #11 on: May 15, 2012, 05:26:58 PM »

I think you shoud start dialysis
i know that your topic is old pls tell us about your health and if you start dialysis or not
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MomoMcSleepy
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« Reply #12 on: May 25, 2012, 11:47:13 AM »

Good luck, Beth!  I'm so sorry you gave to get the chest Cath!  God bless!
 :pray;
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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