DARKNESS BEFORE THE DAWN ???

[big-h3838]

 hi everyone !!
 I'm pre-dialysis , SOON going on PD . My energy level is about zero , can't sleep , am freezing most of the time , just generally feel like a TRAINWRECK most of the time. Is this the DARKNESS BEFORE THE DAWN ?? Please , could use your educated opinions . Maybe throw in a dash of HOPE !!!!    Thanks everyone !!!

      FEELIN POORLY ---  big-h

[willieandwinnie]

Hi big-h,  The energy level, being cold, not sleeping and generally feeling like crap will ease up when you start dialysis. It won't be immediately, it takes time to remove all the toxins that have built up in your system. You will feel better, you might ask for something to help you sleep from your NEPH, since sleeping seems to stay a problem (from my husbands standpoint). Hang in there and keep us posted on how you are doing.

[paris]

Big H, I am right there beside you.  I think that is part of why I am not dealing with life very well.  It is hard to be sick and tired every moment. It helps me to know I am not alone, but I am sorry you are going throught this.  I, too, hope it gets better.

[devon]

Here's another one who's "right there with you"!   Like you, I am pre-dialysis too so I can't offer anything about the benefits thereafter but I share your pain and suffering in the BEFORE period.

People just don't understand what it's like to be ill and still have to get up in the morning and go to work when it took all your built-up energy just to get out of bed! Then you drive yourself all day to get home in the evening, go to bed early to get enough sleep to do it all over again the next day! It's really a grind! Then, FINALLY, a weekend comes and you spend it exhausted and resting so... yes, we can do it again next week!

So... I share your pain.  In the meantime, do what you have to do to survive and make it. 

-Devon

[okarol]

Jenna seemed like she had the flu before she began dialysis. Her kidney function declined pretty rapidly over a couple of weeks. Once she started dialysis she was able to eat again, and her energy increased. While it was never perfect on dialysis, it definitely improved her overall well being. I think knowing what we do now, she should have started earlier. But patients just slowly adapt to their situation, and they can't see how much they've declined. Jenna always said "I'm fine" and then would throw up and sleep 14 hours.
Sending you good thoughts 

[KICKSTART]

Isnt it strange how people feel different before they start dialysis? Just before i started doing it i couldnt get my breath (fluid overload) and all i wanted to do was sleep! You say you are going to start PD , good choice , i have been doing it for 3 yrs now and once you start ,you get results pretty quickly. This is the worst time right now waiting to start dialysis, my neph said to me when it came time for me to start i would be begging them to put me on it because i would feel so bad and he was right! You should improve pretty quickly with PD and it tends to keep an even balance, that doesnt mean to say you wont have bad days but it tends not to be drastic highs and lows with it, which is good. Hope this was of help to you.

[MyssAnne]

Yup. That's a definite sign you're about ready for dialysis. It DOES get better. Not great, but a lot better than now anyway.

[stauffenberg]

When people say that you will feel better on dialysis, they mean that you will feel a little better than you did while you were almost dying because of renal failure before starting dialysis, not that you will feel anything like you used to feel.  The biggest problem is that the anemia caused by renal failure, which is to blame for much of the coldness and tiredness patients feel, can only partially be corrected by the drugs available for renal patients, so the negative symptoms persist.  For a normal male the hemoglobin level is 140 to 170, but for a male on dialysis, the level can only safely be raised to 110 to 120, which means considerable exhaustion.

From my experience, if I felt 100% before renal failure, I felt 10% just before starting dialysis; 20% during the years I was on dialysis; and went up to about 80% with a kidney transplant.  But my old energy and zest for life were gone forever following the initial diagnosis of renal failure.

[paris]

Stauffenberg, that is pretty much how my neph has explained the percentages to me.  That is why he is helping me hold of as long as possible.  None of it is fun, is it?

[mariannas]

For me, the different between pre and post dialysis was dramatic.  I felt SICK before I started dialysis.  I was nauseous and exhausted ALL THE TIME.  Now, the nausea is gone completely and I'm still tired (who on dialysis isn't?), but at least I am sleeping more normally than I was before.  Before dialysis I would be up until 3 or 4 in the morning easily because I just couldn't sleep.  Now, I go to sleep around midnight with no problems.  It's fantastic. 

I know everyone's experiences are different, but for me it was quite positive and I hope you will see a marked improvement as well!

[paris]

Mariannas, That is exactly what is happening to me.  Up most of the night, not able to sleep.  And throw up all the time.  Have no appetite and feel like I am in a fog most days.  I put on a good front for those around me.  I guess at 15% and creatinine of 4, I am having the appropriate symptems.   It helps me to hear how much of an improvement you felt.  Thanks for sharing.    And memory problems---did I forget to mention that?

[Stacy Without An E]

Your title is very apt.  It will take some time for your body to adjust to the Dialysis treatments, but once it does you'll feel better and better.

When I think back to my first year of Dialysis, it was extremely rough, but our conditions may not be the same.  My parents, sister and best friend all live out of the area and I never stopped working so my emotions were all over the map.  I had intense burning some nights, but after hundreds of questions to the staff, I learned about pump speed and dry weight.  I avoid the burning now an haven't had cramps in ages.

Ask lots of questions to find your best treatment, make sure your support from family and friends is in place and you'll do fine.

Good luck and Godspeed.

[Sluff]

Good Luck Big H I hope things get better soon. 

[oleboy]

As you say it is the darkness before dawn,, On 02/29/08 I went to my Dialysis clinic for a flush of my P/D Cath, I had your syptoms I think we all have had one or more of them. While at the clinic the nurse saw how bad I was and called mt NEPH, who then left his office to come to the clinic, I had arrived so to speak I was given 2 choices then, Emergency room or Hemo next day at that clinic, I chose the clinic.I have a left lower arm fistula and a cath for P/D and will be going to P/D as soon as I heal and get the training we need. Today was my 4th hemo and each time it has help me I am still tired but the energy is coming back, sleep is still  an issue, but mine was because of pain from being blown up to do Laper on me. Read, Read what everyone has posted here they have helped me so many times. Good luck    

[stauffenberg]

I think the usual experience of a patient in endstage renal failure is best described by an S-curve moving along the time access, with the height of the curve representing how well the patient feels.  Just before dialysis starts the patient is quite sick, but then on starting dialysis things quickly improve until a peak in feelings of health sets in after about six months or so.  Then another decline begins, as the failure of dialysis to provide a normal toxin clearance starts to damage the patient's body, and this decline continues to worsen the longer dialysis continues.  Finally, there is another upturn in wellbeing at the very end when the patient (hopefully!) gets a transplant.

[kellyt]

I'm another pre-dialysis CKD patient.  My GFR is at 10.5 and my creatinine is 4.something.  Basically I feel okay.  I do get tired quickly and feel pretty sluggish most days, but my appetite is good for at least one meal a day and I have no nausea or vomitting.  Unfortunately, no weight loss, yet.  I am noticing forgetfulness and I am usually cold anytime I leave my house.  The most troublesome thing for me lately is restless legs at night.  And sometimes I get a jittery feeling in my chest and legs.  It feels like my insides are slighly vibrating.  Although my phos. and potassium are in normal range, I think when I overdo phos. I get this.  So I'm trying to watch that.  CKD stinks!!!

[Joe Paul]

I cant add anymore to the replies above, other than to agree, once you start dialysis, in time you will feel better than you do now.

[Slywalker]

Everyone has pretty much described the pre-dialysis, dialysis, and post-dialysis conditions.  Keep in mind that everyone handles different treatments in different ways.  I worked full time pre-dialysis, during dialysis, and now with a kidney transplant.  During dialysis, I did hemo and PD, I was still tired at the end of a work day, but I tried hard not to let the dialysis get me down.    when I did the PD it not only gave me back a big part of my life but I felt much better physically.
try to positive, and know that there is a light at the end of the tunnel.
And IHD is a perfect place to pose questions and get lots of support.

Sandyb   

[big-h3838]

 THANK YOU , THANK YOU, THANK YOU, ONE & ALL !!!!
 The responses have been informative & uplifting . A VERY EXPERENCED crowd !!!
 Went to see my Vass. serg. yesterday and we agreed , he's going to do a PD cathater along with FISTULA .
 The Fistulais for possible future use . no date set ,but soon .  I'll keep yas posted !!!
 Again thanks everyone so much for your information and concern


  big-h

[boxman55]

 THANK YOU , THANK YOU, THANK YOU, ONE & ALL !!!!
 The responses have been informative & uplifting . A VERY EXPERENCED crowd !!!
 Went to see my Vass. serg. yesterday and we agreed , he's going to do a PD cathater along with FISTULA .
 The Fistulais for possible future use . no date set ,but soon .  I'll keep yas posted !!!
 Again thanks everyone so much for your information and concern


  big-h

Hey big-h just a suggestion, prior to having your fistula surgery I would recommend you have the vein map procedure first. That way it is not a guess which will be the best location for the fistula and hopefully eliminate the possibility of it failing because of a bad location. Just my 2 cents as I had my first one fail. then mapped prior to the second attempt, which is working perfect...Boxman

[big-h3838]

 Thanks boxman for the sugg. , i'll ask my vass. surg. about the vein map

 big-h