Question about Starting Dialysis

[angellady07]

I recently had an appointment with my nephrologist. My labs declined once again. My current GFR is 9. My nephrologist stated I will begin dialysis when my GFR is 7 or when I can't stand it anymore.    He said most docs would already have me on hemo. He told me about a patient of his that waited too long and literally crawled in his office. Why in the hell did he let his patient get to that point?    What does that say about the quality of care I'm receiving? Am I overreacting? At what point did you begin dialysis?

[KT0930]

Some nephs only see their patients only once every six months or so, and some patients deny, deny, deny that there's anything wrong with them until it's unavoidable. It may not be entirely the neph's fault that the patient got that bad off.

I never heard a "GFR", but five years ago, my creatnine was 8 when I started hemo, and this time around I was in denial and my creatnine was 12 when my parents took me to the ER. At 8, my blood pressure was severely elevated, I was dizzy and tired all the time, but that's about it. At 12, I was vomiting every day, dizzy, couldn't walk more than a couple hundred feet at a time, my thoughts were very muddled, and looking back at pictures (I got married around that time, so there are lots) I was quite yellow. I had had lots of insurance changes in the previous year and a half and had not gone to a doctor for awhile as a result, so I had no idea how bad things were.

[KICKSTART]

I think you realize yourself that the time has come, as you go into such a decline. A few weeks prior to starting mine , i couldnt get my breath at all , i was soooo tired and generally felt awful. I didnt have energy for anything, was bloated and could have just stayed in bed and slept all the time , even eating was an effort! I know no one wants to start dialysis because its like the point of no return , but when you get so bad its the only option and you do start to pick up again .

[boxman55]

For me it was like someone turning the switch off. On a Friday nite after work I went to the bar with a group of co workers for a few beers. Came home went to sleep and woke up at about midnight and started vomiting. Did that all nite, then all day and night Saturday, then Sunday morning with barely any energy and focus drove to the ER. I literally crawled into the hospital and they kept me in the ICU for 5 days. Started dialysis on the second day...Boxman

[willieandwinnie]

Can't really help here either. My husband's kidneys failed because of septics shock. I would be paying attention to what your body is telling you. You will know when it is time. I'll be praying for you and hope everything goes smoothly.   

[jbeany]

Don't wait until you get to that "can't stand it" point.  The first month on dialysis is very rough.  I wish I had actually started a bit sooner - I think I would have been able to handle the first month better if I wasn't so weak when I started.

[okarol]

I think people have a tendency to adapt to feeling crummy, and don't really realize how bad they are feeling until it gets critical. Jenna was losing weight, sleeping more, and tired a lot, but until she started vomiting and being unable to eat (which took place over a 3 day period) she just kept saying she felt "fine." I agree, don't wait until you have to have emergency dialysis, just plan on getting your fistula established or PD arranged. It's impossible for doctor's to know exactly when you will start as everyone is different.

[BigSky]

The time people start all depends on how they feel.

People who are active and carry more muscle are usually able to wait longer before the effects of renal failure bother them and force them onto dialysis.

I didnt start until my GFR was 2.

[angellady07]

Thanks for your replies. Karol, I agree I think we adapt to feeling crummy. Great advice, everyone. 

[Stacy Without An E]

After I graduated college in the early 90's I moved back home with my family while I looked for a job.  I started getting worse and worse until I couldn't travel from the couch to the kitchen without needing to lie down.  My parents saw how bad I was and took me to the ER.  I still remember vividly everyone in the waiting room staring at me as I was being wheeled from the ER to the ICU.

They all had a look on their face like, "Didn't this guy walk in here?"

They placed a temporary catheter in my neck and planned the graft surgery.

The point to this story is please...don't wait.  Denial is an incredibly powerful force that could keep you from taking the leap into Dialysis.  No, it won't be easy.  Starting Dialysis never is.  But once you start and your body adjusts to the treatment you'll find that you'll feel better and your quality of life will improve.

And you may find you're stronger than you ever knew.  That's an amazing realization to reach.

[Adam_W]

My GFR was 12 when I started dialysis in the ICU. I couldn't imagine not starting until it was 10 or less, considering during the two weeks I was in the hospital when I started (3 days in ICU), I almost died on more than one occasion. Like everyone has said DON'T WAIT.

Adam

[kitkatz]

I walked into urgent care at Kaiser and ended up in the iCU for a week.  Don't wait!

[carla]

My neph told me in her opinion I would have to start dialysis in 1 to 6 months.  She keeps pressuring me to get the fistula operation and telling me that I will end up in the ER with a central line getting emergency dialysis if I keep delaying it, but I have been resistant because I feel ok.  Now I am at the point in which I want to start dialysis now but I have to wait 3 months for the fistual to heal, ( I dont' even get the operation for the fistula until next month).  However the nephro nurse is telling me I shouldn't be in such a hurry to start dialysis because once you start that's it.  Are they schizo or am I?  My creatinine is 4.24, bun is 60, pth is 464, hemoglobin 10, hct 32, potassium 5.1.  GFR is 14.  The nurse says she knows people who have lasted up to a year with those numbers before dialysis.

Renal failure is to me like standing over a 1000 ft cliff with vertigo and trying not to look down.

[angellady07]

Your body definately knows when it's time. Since my post, I was hospitalized for an episode of complete heart block. A result of high potassium. I started emergency dialysis in the hospital.

[CW]

I agree with everyone here I think you should listen to your body - and you do adapt to feeling crummy

WhenI started it was a total suprise I was up for three days (no sleep! and I was taking sleeping pills!) I thought I had a cold and was drinking massive amounts of OJ ironically. I lost 60 - 70 lbs in the months preceding my diagnosis. My eyes were yellow and my nails were yellow. I felt very weak I could only lay in my girlfriend's lap while she tried to comfort me. I also was not thinking clearly I complained about everything and things that did not exist. I was so bad that when the doctor told me I went to the hospital (not knowing what to expect) and then left! I refused to stay my whole family (5 aunts and uncles) had to convince me to do it. I was in the CICU for days (potassium thru the roof!). It sucked, don't let yourself suffer.

CW

[Ken Shelmerdine]

The time people start all depends on how they feel.

I wish that had been the case at my clinic. If the commencing of dialysis was based on how ill you feel then I would be still predialysis. My GFR was 8% with  a creatinine of 620 (6.2 American) but I had no symptoms whatsoever. To this day the only symptoms I have are sleeping problems due to restless legs but no debilitating symptoms and full urine output. I know someone's going to say ' but you've grown used to being sick because it's come on gradually'. I know I could survive without dialysis in the sense that I could continue being as active as I am now but I would'nt do because I do realise that despite all this I do carry blood toxins that need to be dialyse because blood tests don't lie.

 What the doctors are uncomfortable about is that I don't fit into the usual category but it's as if they can't admit to it. Is there some kind of kidney condition which has never been researched where despite kidney failure the body in some way is able to accomodate it.

I know there are one or two other patients on IHD who are similar to me in this respect. What do you think?

I just want to add also that last year I spent a whole week without dyalysis at my mobile home in Wales without feeling any the worse for it. And also I went four days over the Christmas period without.  

[KICKSTART]

I know what you are saying Ken  but i get groups of  odd days like that, rather than all the time. I do wonder if our bodies adapt? I have never been brave enough to give dialysis a miss more than one exchange on capd! Then its only been a case of missing one mid day exchange, which doesnt seem to bad.Maybe our bodies could cope with short periods without dialysis like the week you missed , but maybe a month would be different?

[Psim]

Since my post, I was hospitalized for an episode of complete heart block. A result of high potassium. I started emergency dialysis in the hospital.

Whoa, Angellady, I'm so sorry you had to go through that. How are you doing now?

[angellady07]

I'm very grateful to be alive. It was scary. I'm gradually building up my strength, and just taking one day at time. Thank you for asking, Psim.

[okarol]

Angellady - I hope you are doing okay, sorry to hear about the heart blockage - that must have been frightening!
Thinking of you and sending HUGS! 

[Psim]

People here keep saying the first few months of dialysis are the hardest (and they should know!) so things will probably ease up in awhile. What a scary way to start out though! Hope your strength comes back day by day and you feel much better soon.

[G]

Kidneys are probably the most taken for granted organ in our bodies. From my experience, also the least understood. Drink, pee....how complicated can that be. Most people do not realize, until it's too late, that our kidneys are one of our most over worked organs. They not only filter out the bad stuff in our system they also regulate almost all of the good stuff. This includes telling other organs (parathyroid comes to mind) how much to allow our bodies to have. So, when your kidneys go gunny-bag, it is easy for us to be in denial. I also imagine how nephrologists see so many patients that say "not me" after awhile they get tired of the wrestling match. They are humans too. Let common sense guide you. Do you think your doc is incompetent? Get another opinion. After awhile you will begin to get the rhythm of your body. Listen to what it's sing'n.

[momsonhd]

My Mom started dialysis in June and she seems to be 10 years younger!  Is this a "honeymoon" phase ,or is she just lucky?

[monrein]

I also felt better, way better, almost immediately after staring dialysis.