Still trying to fend off dialysis

[Lucinda]

Hi Everyone

How long after the constant nausea, cramps and forgetfulness started did you have to start dialysis.  I am still trying to fend it off as my creatnine is still only around 450.  I really want to try and get to Vegas in October but not sure I am going to make it until then.  I have never fainted before and yesterday I just passed out with no warning.  I had been up all night with my next door neighbour because the baby she was fostering died of SIDS and we were at the hospital all night so I wasn't sure if it was the shock of that or my kidneys.  Am I being silly putting off the inevitable?  Not sure what to do.  xxxxxx

[Ohio Buckeye]

What does your doctor say about it?
Don't let yourself get too ill or it will take a longer recovery period.
If you had to go dialysis before Oct. is it possible to have a session before you go or one while
you are there?  I do hope you get to go.
It is normal to put it off as long as possible.
I felt like I would have to crawl in before I'd want to but a guy at our church
woke up deathly ill one day and had to go to the hospital and start dialysis.
I wanted to avoid that. 
If your dr. is monitoring you closely, he should know when it is time to start it.
How awful to hear about the baby.  I'm sorry.

[charee]

hey cindy i hope you can wait but it sounds like you should start. so sorry to hear about simones baby, they are in my thoughts

[okarol]

Hi Everyone

How long after the constant nausea, cramps and forgetfulness started did you have to start dialysis.  I am still trying to fend it off as my creatinine is still only around 450.  I really want to try and get to Vegas in October but not sure I am going to make it until then.  I have never fainted before and yesterday I just passed out with no warning.  I had been up all night with my next door neighbour because the baby she was fostering died of SIDS and we were at the hospital all night so I wasn't sure if it was the shock of that or my kidneys.  Am I being silly putting off the inevitable?  Not sure what to do.  xxxxxx

Not sure what the equivalent number for creatinine is - Jenna went from 6.5 to 10 in a couple of days, and required emergency dialysis. She was getting dehydrated from vomitting, and sleeping a lot, confused and not able to eat much. Personally I think she should have started about 3 weeks earlier, looking back and knowing what we do now. She was already feeling a great deal better after the first couple of days (they did 2 back to back days of hemo) and she was able to come home from the hospital the 3rd day.

Listen to your body, it won't do any good to get really ill before you begin.

 

[Chicken Little]

I'm so sorry about the baby.  

I lasted through 2 months of vomiting, diarrhea, nausea and not being able to get out of bed, before they dragged me in to implant the PD catheter.  My creatinine was in the same range as yours is now and I insisted I could wait, but my doctors kept telling me that creatinine isn't the only factor that needs to be considered when deciding when to start.  They were right.  I waited too long and 6 months later I'm still trying to recover from it.  

I'm sorry.  I know it's scary.  

[Sluff]

Lucinda please listen to your body and take care of yourself. I really want you to make it to Vegas.

Either way I would hate to see you get too sick.

[Lucinda]

Thanks everyone.  I will have another chat to my neph and ee what she thinks.  Sorry to scare you Charee, I forgot you met Simone and Zac.  It wasn't Zac that passed away, it was a new drug baby she fostered a couple of weeks ago.   Zac is with his new family and doing really well.  I will pass on your best wishes to Simone.  She is doing much better today and has a tremendous amount of support.  The poor little bub was being weened off drugs and premature to boot so he really had an uphill battle from the start. His name was Ashwan and thanks to God he is in a better place. xxxx 

[stauffenberg]

While most patients don't have to begin dialysis until their creatinine reaches the range of 900 to 1000, the decision to start dialysis is usally based on the patient's symptoms.  Some people can handle a high creatinine level and contnue to function well, others can't.  A level of 450 would be unusually low to have to start dialysis, however.  I was on and off dialysis for a few months before finally going into endstage renal failure, but every time my creatinine level fell to 370, I was taken off dialysis for a few weeks, so it would be unusual to have to initiate dialysis at a level just a bit higher than that.

[Roxy]

I didn't start dialysis until my BUN got to 120 and my Creatinine got to 12, but even then I didn't really have any nausea or any serious symptoms. The best thing though is to listen to your body and if your body is telling you that you are getting worse and you feel like dialysis is going to make you feel better and healthier, then by all means please start dialysis.

[LightLizard]

i was so resistant to the medical system, when i initially got sick, that i put off going to the hospital for 7 months, while i laid in bed, filling up with fluid, my legs, eventually, becoming infected to the point of constant agony. finally, i had to give in to the trip, so with 80 percent of my muscle mass gone from atrophy, i was driven to the hospital emergency ward.
when i was told i would very likely need dialysis in the future, i was devastated even more. i saw the patients that had to be wheeled in their beds or wheelchairs to dialysis, and i assumed that this was where i was headed. after another period of denial and attempted escape, i was finally at the point of accepting dialysis as my only option, or dying. considering the circle of loved ones around me, i began dialysis. to my complete suprise, i now feel better than i ever thought i would feel again. there are some limitations to this life on dialysis, granted, but we strive to adapt as best we can, we live for the good days and let the bad ones pass - and they always do.
don't put it off too long. it's nowhere near as bad as it might appear!
and, you might be surprised at how much better you can feel, sometimes.

love

~LL~

[Lucinda]

Thanks again everyone.  I had to go into hospital last night because I got so sick and they were a bit mysterfied as to why I was so sick.  My creatnine was stable, my fluid levels were fine but my stomach was bloated really badly and my joints felt like they were going to explode, I had tingling all down the left side of my body and I was just really,really unwell.  Turns out it was toxicity poisoning from an infusion I had two weeks ago.  They gave me a gram of iron in less than an hour and my body just couldn't adjust to it.  They said that in one session I should have had half of that over a much longer period of time - four hours minimum.  Evidently 500 mgs is the most iron you should have in one sitting.  Anyhow, I don't feel much better but at least now we know what is causing me to feel so sick.  They are going to see how I go over the next couple of weeks and see if it settles but they said I could end up with a stomach ulcer because it reacts badly with stomach acids.  I am taking really high doses of antacids so we'll see how it goes. xxxxxxx

[boxman55]

Glad to hear they got a handle on it so far.....Boxman

[RichardMEL]

Cindy good to hear from you.. not so good at the contents though

Just on putting off or starting dialysis... I think if you feel like crap constantly and it is really impacting on your life (and I'm not talking about the iron thing here) that's when you HAVE to start - for your own wellbeing. I was always told that I should start if i started throwing up or feeling lots of nausea etc.

Now maybe the iron overload was doing that to you, or it could be because of the toxins in your blood. Remember Creatine is a guide but not the ONLY measure of your kidney health. Do you have a GFR reading?

Definitely talk with your neph about it. I hate to say this but if it was me I'd want to do the best for my body then trying to hold on for something like Vegas. I guess a fear could be a really sudden downward spiral that could cause you real trouble.

I still find it amazing that you seem to have as much choice about it. I was pretty much told when it was time.. and I didn't even feel ill. I mean I guess I could have said no to the doc, but I wasn't really going to do that.

I hope things stabalise with the iron.

*hugs*
xox

[Amanda From OZ]

Hey Cindy,

Its good to hear from you, but bad to hear your not feeling very well. 

I started dialysis with my creat. at the same level as your's. I was feeling exactly like you and my doctor thought the best thing to do was to start dialysis ASAP. I received a call while up a tree at paintball to come home and start dialysis. 

Glad to hear things are more stable with the iron.

I do truly hope things improve for you, But i think you should start dialysis soon if your feeling that crappy.

Sending you good thoughts your way. 

Amanda
xxoo

[tweetykiss]

I haven't posted in a while but here is what is happening, my husband's crets are now at 7 and BUN at 77 and still no symptoms but we both know it is just a matter of time....we see the neph tomorrow and personally I think they should start him then.

[JerseyGirl]

OMG a GRAM of iron in less than one hour?  What were they thinking?  If my patients need IV and not on hemo - I give them 300mg, 300mg then 400mg over 21/2 hours waiting 14 days between doses!  Lord have mercy!  You poor thing!  As stated above, creatinine is not the only indicator - if your symptoms are getting worse please consider starting sooner - it will take longer to get back to baseline in the long run.

[Chicken Little]

I haven't posted in a while but here is what is happening, my husband's crets are now at 7 and BUN at 77 and still no symptoms but we both know it is just a matter of time....we see the neph tomorrow and personally I think they should start him then.

Glad to see you back Tweety.  I hope it goes well tomorrow.   

[skyedogrocks]

I'm not sure what Rob's levels were, but he was dry heaving or vomitting after every meal every day for about 3 weeks  He was feeling sooo wiped out and had these horrible dark circles under his eyes.  He was scheduled to talk to his Neph about dialysis on a Monday, that Friday before he barely made it home to work and up the stairs to our bedroom.  They admitted him to the hospital that Monday and he was in there for a week.  He should have been on dialysis wayyyy before he did and says that now.  After a week on dialysis he felt a lot better.

Because he took so long though, it took him a good 6 months to start feeling "normal".  Dialysis really scared him and he knew that once he was on it, he wasn't coming off until a transplant.  It was all mental for him as it is for so many. 

Good luck!!

[goofynina]

I haven't posted in a while but here is what is happening, my husband's crets are now at 7 and BUN at 77 and still no symptoms but we both know it is just a matter of time....we see the neph tomorrow and personally I think they should start him then.

Hey Tweety, glad to see you back, thanks for updating us, please keep us posted on how hubby is doing, hang in there girlfriend 

[Sluff]

Thanks for the update Tweety. Hope his appt goes well. We are here for you both. 

[tweetykiss]

Thanks everyone for your kind words and support and here is what is happening...the nephrologist today said today's labs showed a cret of 8.8 so now that is pushing it so now he will get his coumadin level taken Thursday and the catheter in on Friday and that is when his first dialysis starts but the rate he is going now at home, I may have to take him to ER to get fitted and started...his leg is swollen and in pain and I gave him a hot water bottle.

[skyedogrocks]

Tweety - So sorry about your husband, but dialysis will make him feel a lot better.  I would call his Neph before going into ER, I'm not the most fond of ER Rooms (we visit them a lot!).  Have his Neph make the appointment for him to go in there today so that hubby can start feeling bettter. 

Good Luck

[Chicken Little]

Tweety 

At least the dialysis will help relieve some of your hubby's symptoms soon.   

Big hugs to both of you.   

[tweetykiss]

Thanks everyone for your kind words and reading this thread....now I am on a tightrope since the appointment for the catheter is not till Friday and his GFR is only 7 or 8 and it rapidly drops......I don't want his kidneys to shut down before then....now his one leg is a little swollen but the other is fine and he has no other symptom other than fatigue.....

[Danally]

If you are worried call your doctor and take him to the hospital today. My dad was filling up with too much fluid and his lungs were filled with fluid. The put in a catheter and began dialysis immediately.