Decision regarding starting dialysis

[Goofy]

I had my blood test today.  I promised myself that if my kidney function had decreased since my last blood test that I would start dialysis.  Well............my creatinine went from 7.2 to 6.6.  According to the GFR calculator, last month my kidney function was as 6% and now its at 7%.  So needless to say, I'm going to wait one more month.

I'm really starting to think that even if my numbers don't change too much next month, I may at least make the appointment for early December to have my PD cath exposed from under my skin.  As it gets closer to my daughters wedding I'm getting worried that if I wait too long, I will be sick for her wedding which is March 2010.

I'm sure I know what a lot of you will say, but I really feel comfortable with my decision.  I keep thinking that northing is "written in stone" and if I start to feel really sick before December, I can always have the surgery earlier.

[looneytunes]

Great news on the GFR increase Goofy!     As to your decision, it is YOUR decision.  Though some folks may disagree, it is only because they want you to be as healthy as you can.  You know the score...it's entirely your call.  Here's to keeping our fingers crossed that next month your GFR is even better!   

[Jie]

Goofy,

After GFR drops to 10%, when to start dialysis is basically dependent on your feeling and your BUN value. If you are feeling well, it is a good decision to postpond the dialysis. The eGFR is a rough estimate and a mean value from a lot of patients. Your true GFR may be different from the estimated eGFR.

[Rerun]

Watch your potassium intake.  Have a good month.

[jennyc]

It's your decision, I've always left every thing to the last possible minute. It is hard to take that step and go to dialysis. Although I end up kicking myself becuase i could have been feeling better sooner. good luck!

[peleroja]

I agree with the other folks.  It's your decision.  Play it by ear.  As long as you're still feeling good, go with the flow.  Congrats on your new numbers!

[kristina]

Hallo, goofy,

I am (still) pre-dialysis and I also try very hard to keep my kidneys functioning for as long as possible.

I weigh myself every day, drink every day the same amount of liquid (chamomile tea, peppermint tea, self-made lime juice (assists me to sleep better through the night), two cups of coffee and a cup of black tea with sugar & lemon).

I eat every day the same amount of food (vegetarian, no salt, fresh food cooked properly, self-made bread without salt, salads, etc).

This consequent diet has kept my kidney function at ~10% for quite a while now and I am very grateful for every day.

My very first kidney failure happened in 1971, when I was brought to hospital in a coma. After that my kidneys slowly recovered to a function of 40-45% and, with the help of my vegetarian diet I could  keep it like this for all those years until a few years ago, when, due to another Lupus flare-up, my kidney function started to deteriorate.
 
My hope is that this Lupus-flare-up goes into remission and perhaps my kidneys are then able to function much longer.

Congratulations on your better GFR, I wish you very good luck.

[Restorer]

I agree, start dialysis when you think it's time, but keep in mind that things can rapidly turn. When I had my cathether implanted, my creatinine was at 10. But before I was able to actually start dialysis, I took a turn (possibly inspired by a virus going around) and got really sick, and had to be hospitalized with emergency hemodialysis for three days.

[Des]

I am saying sorry in advance... I am going to be the "fly in the soup"

One digit on a GFR is "nothing" because they look at a trend and my dear you need to start NOW, today!

Stop thinking, stop denying. You have CKD and you need treatment for it. You are playing with your future health.

I say this because I am really worried.

hugs

[Jean]

Sorry too, Goofy, but I agree with Des. Stop putting it off, before you find yourself in the back of an ambulance in the middle of the night. Please take care of yourself.

[billybags]

What can I say,  only take care of your self. Some times the decision is taken out of our hands.

[RichardMEL]

I almost wasn't going to post.

I can see both sides of this situation. It's exciting and a relief for the figures to be a bit better. However like Des says at this point the difference between 6 and 7 is fairly small. Labs can fluctuate depending on when the blood is taken, what you've even previously to then - if you've exercised or not - so on and so forth.

The key thing is the symptoms you're experiencing. You've already posted about some of the problems you've encountered which are classic symptoms of ESRD. You are there.

I understand you putting it off and I honestly hope you can make it without incident till March for the wedding or some other time. You should be aware, and at least a little prepared, that things could turn sour, and turn sour very quickly. I hope that doesn't happen... but you have to realise you're really close to the edge here. You feel great now.. but one slip.....

be careful, and may luck be with you.

[bette1]

I agree with Des.  A normal creatinine is 1.2.  You are at 6.  You need dialsysis.  Everyone has told you this, including your doctor. 

I don't know what you expect us to say. 

[Goofy]

What do I want you to say?  I guess I don't really know.  I would imagine most people would struggle with the decision and some may want to hurry and get on with it.

I'm going to stop posting about it until I finally start.  I know people can relate to my anguish but for me its just really hard to make that final move.  I say final because I'll be on it the rest of my life.

I guess I'm here just hoping to find some kind of answer that no one will ever be able to give me.  I'm getting so worked up about this that I can't do anything anymore.

I know you may say just start and get it over with but that's my problem....I can't and I can't explain why.  I'm sitting here crying at work because my head is so messed up.

So until I start dialysis, I will continue to post but not start any threads regarding my struggle.  I totally understand how you must feel.  I think I'm on the verge of a break down.  There are no words to describe what type of mental state I am in.  I envy people who are able to just make a decision and move on.  I, unfortunately am not one of them.

Please understand that my decision not to post about this subject any more is not because of any negative responses I've received.  If you ask for someone's opinion, but better be willing to hear what they have to say. I have to work this out for myself.

[okarol]

Goofy,
I hope you keep posting. This is not an easy decision to make. Many people do not start until they are in the emergency room and the decision is made for them. No one is perfect and you'll never know the absolute moment when it's right. It's overwhelming and depressing, and I only know that from watching my daughter's experience. For her it was blind-siding and she just kept adapting as she got sicker, somehow convinced us all that she was ok. The Sunday morning when we went to the emergency room she still didn't know it was time, even though she couldn't keep food down and was sleeping every minute she could. I think it was the only thing she felt she had control over, and that was her choice, to wait until the doctor said, "It's time, there's no way you're going to survive." She was on a mild anti-depressant and I suppose that helped her cope. I hope you're getting some support from a social worker or therapist at your hospital. If not perhaps the doctor will help you find someone. Best wishes to you. {{{HUGS}}} 

[bette1]

I understand your anguish.  I went through the decision to start dialysis TWICE.  Once when I was 19 and my kidneys failed for the first time, and later after my transplant failed.  It's very very dificult and you don't want it to be happening to you.  I understand. 

I also read the horror stories of people who waited and had to spend weeks in the hospital.  I care what happens to you and the longer you wait the harder it will be for you and your family.  I just see you heading down a dangerous path.  How can we help you?  Tell us and we will do it.  It's just hard for us to watch you put your health in danger.  I don't want to be mean but that is the bottom line for me. 

[paris]

    All of this is so very hard.         You are under a doctors care and the two of you will make the right decisions for you.   Sending you hugs   

[MissyKew]

I am sorry for your anguish.  This is very hard.  My choice was made for me.  I ended up in the hospital and then transferred and then on dialysis.  This is my opinion.  The biggest important thing for you is being at your daughter's wedding healthy and beaming.  I would do what would guarantee me that.  JMO.

[Mimi]

Goofy, aboubt 2 months ago I went in to see my neph and my
GFR which had been at 17 for about 2 years had droppedto 15.  He immediately said I had to go on D right away.  He said he would put a catheter in my chest for I didn't have time to get a graft in.  I said no way and I went home and found a new neph.  Last month (the second time I had seen her) my GFR was 19.  I am 76 years old and
I have done alot of living so if I climbed those stairs it would be OK.
But you have not lived your life out yet.  You have a daughter who
is about to be married and later there will be grandchildren for you
to love and spoil.  Not only for your sake, but for their sake, too
you need to protect your health so you will be around a long, long
time to see all of these blessings come to you.  It will be a challenge and a great change for you, but I know you can do it.  Take what life has to offer and make the best of it and you will truly see that
life is worthwhile.  Then you can look the world in the face and say
"it was worth it even with D."

My love and prayers are with you.
Mimi   

[KICKSTART]

Mimi , you shouldnt have put that stairway to heaven picture there as it must have upset Goofy as much as it did me ,she really doesnt need that, i know first hand and i have done everything i have been advised to , when ive been advised too.
GOOFY , i cant tell you what to do right now , as on my good days/times im ok with dialysis and at times like this i wish id never started. You have plenty of facts and figures and are well equipped with what happens , opinions are just that ..opinions and everyones is different , everyones experience is different, everyones journey on this road is different, people started on this journey for all different reasons. Set foot on the road when you are ready and we will be here as travelling companions ,as map readers (unless some sarcy member pipes up with ive got Sat Nav !  ) If you dont want opinions you can still ask questions  KS x

[Mimi]

KS the stairs to heaven is a beautiful picture and it was meant for me,
NOT Goofy.  Read my post again.  I am sorry I offended you.

[KICKSTART]

KS the stairs to heaven is a beautiful picture and it was meant for me,
NOT Goofy.  Read my post again.  I am sorry I offended you.

No you didnt offend me , i was just very upset because a doctor told me that just where i was going earlier this week

[texasstyle]

I just wanted to say that so often we are scared of change. Change of all kinds. The "unknown" and feeling of possibly losing a type of security. No one ever wants to start dialysis. I know you this, but when it's YOU it feels so different doesn't it? It doesn't mean your life will end or completely fall apart that day.It will be a time of adjusting though and that's ok. I've gone through several hardships and times of struggle in my life where I felt so many times that the rug was pulled from right under me. Then all the sudden bam!...another change.Always I was frightened I was able to re adjust. One thing I have learned is that life is always taken one day at a time and not any quicker. Today is today, and tomorrow is a new day.I can understand how you must be feeling emotionally.Just because you do dialysis doesn't mean you can't still do a lot of living. You hold your head up high and don't let anything ever bring your SPIRT down.

[Maker]

Hi Goofy,

I am so sorry about this strugle you are going through    I can hear the anguish through your words.  I too really struggled with the decision to go on dialysis and waited probably longer than I should have.  Once a Doctor told me (I was 30 at the time) that when I started dialysis I would have the life expectancy of a 70 year old, so to me dialysis = death.  So I waited, and waited..landed myself in the hospital 3 times just this year!  But the truth is, now that I have started D, I understand that dialysis - LIFE!! 

I am feeling more like myself than I have in a long time.  I dont think I realized how sick I was.  A dear friend told me yesterday that I seem like "the old Lori" again.  What a great compliment   The toxins I was carrying around not only affected me physically, but I'm seeing more and more how they affected me emotionally and in turn affected my relationships with others, which makes me sad.

I completely understand your wanting to wait, and I will say a prayer that God will lead you to the best decision for you.  God Bless you Goofy!!