I won’t start dialysis ???

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KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/21/2009 7:48 AM (GMT -7)   

I had an office visit with my nephrologists yesterday and he is very angry with me because I won’t start dialysis.  I’ve been going to him for years and years and I never saw him get angry.  Even his assistant saw it.  She said he’s not angry with me, he’s just frustrated because he doesn’t want me to get sick.  I felt so bad when I left that I felt like turning around and telling him I’ll do it.  But then a little voice in me told me to not do it.

 

I’m getting more symptoms but I still don’t feel I need to start yet.  I’m getting more and more forgetful and that really bothers me.  I’m so confused right now.  I know the “correct” thing is to start, but I just can’t.  I was pretty sick a week ago and was ready to call the doctor but after a few days I felt better.  As much as I think I can handle this, I’m really starting to believe I’m in denial because I still think I’m well enough to get by and I feel like it “won’t happen” to me. (meaning getting really sick).  But on the other hand, I know I will have to do it some day.

 

Has anyone ever held out starting when their doctor recommended it?  I trust my doctor and of course he keeps telling me all the bad things that can happen but like I said, I really don’t think that will happen to me.  If you held out, did you regret it?  Do you think that waiting until you “felt” you were ready was a good decision?

 

Any advice is appreciated!


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/21/2009 12:16 PM (GMT -7)   
I should know the answer to my own question since I have PKD  and my dad was on dialysis for years but.... call me stupid.
 
What did your doc say will happen if you don't start? Will it harm your other organs?
 
I know my dad was reluctant to start so he did home dialysis (Continuous ambulatory peritoneal dialysis (CAPD)) He told his doc it was the only option for him because he was too independent and didn't want to do the  clinic visits. It became a way of life for him and he did very well all the way up to his kidney transplant. Is this an option for you?
 
I don't blame you for not wanting to start. That is one heck of a step.  I hope someone with more experience will post a reply. Wishing you only the best!!!
 
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/21/2009 3:24 PM (GMT -7)   
(((((((KidneyKid)))))))

I'm so sorry you are having to deal with this. Irishmom4 is right its a big step. Only you can make this decision. Whatever anyone says and most will tell you just to do it, you will still second guess. Just please remember this can be life threatening if you don't do what the doctor says. I don't know if you have a family but they would sure miss you.

My prayers will be with you
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/22/2009 5:47 AM (GMT -7)   
Thanks for the replies. Currently I don't have the option of a kidney transplant. Long story, but I have too many anitbodies to find a match.

I do have a family. Son 31, daughter 29 and husband. We've been married 33 years. They are all very concerned so (I know this is wrong) I don't tell them "everything" that my doctor says. They would push me to dialysis and I think I would be resentful.
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/22/2009 8:24 PM (GMT -7)   
Sweetie you need to do dialysis! You are taking years off of your life by putting it off. The damage is not just limited to your kidneys it begins to be a domino effect. Trust me I know it's a huge step, i've done it. I did the same thing you're doing. I wouldn't tell my family everything the doc said; I didn't want them worried and pushing me to do things I didn't feel ready to do. Mine came down to a crisis, a long hospital stay. Maybe you should ask to speak to a counselor or psychiatrist to help you come to terms with what you're facing.

I'm not trying to be crude, but the reality is you need dialysis and the longer you put it off, the sicker you become! Thank God you have a doc that cares enough to passionate about your situation. You need to call him and set up a time to start your diaysis! There are option as someone mention CAPD, home hemo, find out what's best for you and get started! You owe it to yourself and your family! Judy

KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/23/2009 9:37 AM (GMT -7)   
It's three days after my appointment and I'm still feeling bad about my doctor. I know he cares and that's why I feel so bad about not listening to him. I just keep thinking that I need to follow my gut instinct and do what I think is best. It's really wearing on me how upset he was so I'm considering at least making an appointment with a surgeon to have my peritoneal catheter removed from underneath my skin. I've had the catheter placed for a while so it’s just a matter of taking the tube out so it can be used.
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis

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