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Shaks24
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« on: August 28, 2013, 06:11:01 AM »

I have been feeling real bad lately. A lot of the symptoms that many brave souls have posted about on various threads on this site. Going to see my Neph this morning and have labs done again. My inner being tells me it may be time to gear up for dialysis. I am hopeful my Neph is supportive of home PD and that I am a good candidate for that modality. Wishing you all the best and hoping that things go well today. God Bless.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Big E
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« Reply #1 on: August 28, 2013, 07:35:06 AM »

Shaks, let us know how thing went today.
 :cuddle;
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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
UkrainianTracksuit
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« Reply #2 on: August 28, 2013, 08:29:51 AM »

I hope today turns out better than you expect.  All the best wishes I can send.   :)
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: August 28, 2013, 11:37:27 AM »

Do you have any news yet Shaks?

All the best, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Shaks24
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« Reply #4 on: August 28, 2013, 12:47:05 PM »

Thank you all for your kindness. My Neph basically told me I should start dialysis to feel better.  We will not have lab results until tomorrow. He is setting up a meeting for me with a dialysis clinic and helping to set up an appointment with a surgeon for PD Catheter placement. I have to do something to feel better. My legs and arms are cramping, my mind is in a deep fog and I wake up feeling extremely nauseated every morning. Also I have been living in a state of extreme anxiety for the last few weeks. I am sure these symptoms are kidney related. Lab results tomorrow should confirm. I was hoping it would not come to this so soon but in the end, it is what it is. I hope PD works well for me. Again thanks for listening to me it helps a lot to hear from you all. I have never had surgery before so I am a little bit apprehensive.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Angiepkd
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« Reply #5 on: August 28, 2013, 01:46:58 PM »

You will do great shaks!  I don't have experience with PD, but do home hemo.  I can relate to all of your symptoms prior to starting D.  I felt so lousy for so long that I forgot what it was like to be "normal".  Once I started, the worst of my symptoms went away.  Almost no nausea, no cramps and even my brain fog lifted!  Hope everything works out for you.  Keep us posted!    :cuddle;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Jean
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« Reply #6 on: August 29, 2013, 01:40:07 AM »

Good luck to you Shaks, hope it all works out well. I am close to your position myself and even tho I knew it was coming, have tried to ignore it.
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One day at a time, thats all I can do.
amanda100wilson
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« Reply #7 on: August 29, 2013, 04:40:56 AM »

good luck.  You should feel better within a few weeks of starting.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Shaks24
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« Reply #8 on: August 29, 2013, 05:14:16 AM »

Thank you all again for your comments. Does anyone know what PD Catheter surgery costs. Due to pre existing conditions my insurance options have been limited and I have a junk policy that basically covers nothing. I know if I do home PD medicare should kick in on the first month. I am just curious as to what this surgery may cost.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Grumpy-1
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Make me the person my dog thinks I am

« Reply #9 on: August 29, 2013, 09:28:38 AM »

Shaks24   Unless you can wait a month to start dialysis, ( the time it will take for the PD catheter to be usable and your training) they will put in temp catheter in your neck.  So, be sure to talk to your Neph about this. Grumpy
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Make me the person my dog thinks I am
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: August 29, 2013, 11:00:33 AM »

My pd catheter worked straight away, so it depends on surgeon, and person.

I hope you get your $$$$ info soon, and wish you an awful lot of luck.

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Shaks24
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« Reply #11 on: September 03, 2013, 03:32:29 PM »

My kidney function is actually improved slightly at 21%. I however have been feeling horrible for the last 3 or 4 weeks with classic ESRD symptoms. My Neph suggested starting PD to get to feeling better and scheduled appointments with a surgeon and a PD Clinic to start training. Is it crazy to start at 21% function? From reading on this site it seems as though most start at much lower kidney function levels. The meeting with the surgeon this Thursday is just a consultation to schedule PD catheter placement.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Whamo
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« Reply #12 on: September 03, 2013, 06:23:22 PM »

Are you on a low protein diet?  I avoided dialysis for 5 years using Dr. Walzer's book and amino acids, but to tell you the truth, I felt horrible until I started dialysis.  Of course, dialysis is no picnic.  I did hemo for a year before I went to CAPD.  Hemo is 3 times a week for 4 hours.   CAPD is 10 hours every night.  I prefer CAPD. 
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MooseMom
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« Reply #13 on: September 03, 2013, 06:30:08 PM »

My kidney function is actually improved slightly at 21%. I however have been feeling horrible for the last 3 or 4 weeks with classic ESRD symptoms. My Neph suggested starting PD to get to feeling better and scheduled appointments with a surgeon and a PD Clinic to start training. Is it crazy to start at 21% function? From reading on this site it seems as though most start at much lower kidney function levels. The meeting with the surgeon this Thursday is just a consultation to schedule PD catheter placement.

Gosh, you can't even get on the transplant list with a gfr of 21!  So I am very dubious about starting dialysis quite this early.  I spent 10 years with a gfr of low 20s.  How are your other labs?  Potassium?  Phosphorus?  Are you anemic? 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Mr Pink
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« Reply #14 on: September 05, 2013, 11:52:22 AM »

Thank you all again for your comments. Does anyone know what PD Catheter surgery costs. Due to pre existing conditions my insurance options have been limited and I have a junk policy that basically covers nothing. I know if I do home PD medicare should kick in on the first month. I am just curious as to what this surgery may cost.

Costs should be the least of your worries, although that's easy for me to say living in a country where medical care is free. Your gfr sounds a bit high to be starting dialysis, although the symptoms toward the end suck so bad you actually want dialysis to start so you can feel better, which you will do. Surgery is no biggie. I hope that this next little period goes quickly for you. Once you're on dialysis, you'll be in a much better place than you are now. Good luck.
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Shaks24
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« Reply #15 on: September 05, 2013, 02:29:22 PM »

Thanks Mr Pink. I have been feeling horrible. I met with a surgeon today and I am scheduled for PD Catheter placement and fistula(for back up) next Wednesday at 8:00 am.  I have never had a surgical knife touch me before. I am a surgery virgin! LOL.  In America, unfortunately healthcare is a major financial concern if you can not even purchase adequate insurance as in my case. Thank goodness for the Medicare ESRD program.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
skg
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« Reply #16 on: September 05, 2013, 03:52:55 PM »

Don't forget that what is (usually) reported as GFR is actually an estimate based on creatinine (unless they happened to actually measure your GFR). Creatinine is an indicator of kidney function, but it isn't a direct measure and it isn't terribly accurate.

If you are experiencing a lot of symptoms that need attention, that's probably more important than the number.

cheers,
skg
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MooseMom
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« Reply #17 on: September 05, 2013, 03:56:27 PM »

Good luck to you on Wednesday!  Be sure to report back.  I hope you get to feeling better very soon and that dialysis works really well for you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Shaks24
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« Reply #18 on: September 05, 2013, 04:08:59 PM »

Thank you all. I will report back. So far everyone I have talked to from the Fresenius clinic has been extremely helpful and nice. I am scared but looking forward to relief from the cruddy feelings.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
cassandra
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When all else fails run in circles, shout loudly

« Reply #19 on: September 07, 2013, 12:46:57 PM »

Good luck for Wednesday,

        :flower;


Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Shaks24
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« Reply #20 on: September 07, 2013, 01:15:52 PM »

Thank you Cas.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Shaks24
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« Reply #21 on: September 08, 2013, 09:52:40 AM »

It just dawned on me this coming wednesday morning will be my last shower for at least two weeks. I may have to change my user name to stinky. lol.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Bambino_Bear
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« Reply #22 on: September 11, 2013, 05:39:29 PM »

I hope your surgery went well.  Let us know how you are feeling!   :flower;
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
Shaks24
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« Reply #23 on: September 11, 2013, 07:12:51 PM »

Hi Bambino. Typing on my samsung phone. Long day today. Up at 4 am to be at hospital at 6 am. Got the pd catheter put in and a fistula in my left arm. I am tired and a bit sore. My training nurse is coming to my home tomorrow at 2. The surgeries were not bad. Killed 2 birds with 1 stone. It was done under general anesthesia.  Discharge paperwork said I could shower in 48 to 72 hours. Yay! I took 1 pain killer after leaving the hospital. I think that is all I will need. Let me know if you have any questions.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Bambino_Bear
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« Reply #24 on: September 11, 2013, 09:39:06 PM »

I am glad that the surgery went well.  Good luck with the home visit tomorrow.  My husband has surgery Oct. 3.  So you are a few weeks ahead of us in this journey.  Keep me posted on how you are feeling.  Take care!   :cheer:
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
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