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jerseyjezebel
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« on: March 10, 2015, 10:03:09 AM »

Hi everyone.  It's been a while since I last posted.  Since the last time I posted, my father went into kidney failure and now we're both on dialysis.  I go MWF, he goes TTHS.  It's really taking a toll on both of us.  We live together and we just argue all the time because we're both so stressed out.  Didn't help we had a major bedbug infestation in the house, too.  The exterminators came on Friday so hopefully that will be better.

I keep having a problem with my BP during dialysis.  It continually goes down into the 70's or 80's.  I've been hospitalized twice for it.  One time the doctor told me I might not make it through the night.

I don't know.  I don't know how much more of this I can take.  I cry all the time.  I can't believe this is my life.  I read Facebook posts from people I went to high school with and they're all happy with kids and husbands/wives.  I have nothing.  Hardly any family  and no friends at all.  I just don't know what to do.

Bonnie
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Simon Dog
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« Reply #1 on: March 10, 2015, 10:53:46 AM »

Bedbugs can be harder to cure than ESRD (well, sort of).    Did you discard your mattresses?
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Michael Murphy
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« Reply #2 on: March 10, 2015, 11:28:12 AM »

I know life as a Dialysis patient is not easy.  I have no idea how it is to live with a other patient.  However you can't let this dominate your life.  Find outside activities that fill your time.  Do volunteer work.  Get out of othe house for more than just treatments.  Find a support group.  Dialysis seems to dominate ones life,  it is important to find things that allow you to meet people on other grounds.  Bed bugs die in the cold move infected items outside on below freezing days.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: March 10, 2015, 11:31:19 AM »

Oh jerseygirl sometimes it really really gets all too much, I'm sorry you're down the pits right now, and I can 'sort of ' understand. It must be triple difficult that your dad's on D too. Must be difficult to moan, and than on top of that the bedbugs.

  :rant;

I hope you can drag yourself over the rim soon, and that your BP sorts itself out too (you're not too dry are you? No cramps?)

Love, and strength, and luck, 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
Sibella
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« Reply #4 on: March 10, 2015, 11:33:14 AM »

Sending a hug your way. It sounds like you have a lot to deal with. It's so hard to cope with these things when you feel so alone.
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
November 7, 2019 Transplanted :)
Simon Dog
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« Reply #5 on: March 10, 2015, 01:40:01 PM »

Quote
I go MWF, he goes TTHS
Is it good or bad that you go on separate times/days?
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jerseyjezebel
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« Reply #6 on: March 10, 2015, 02:29:42 PM »

It's hard for me to get out since I'm in a wheelchair.  I take medical transport to dialysis.

Right now it's not so good that my father and I go on separate days.  For some reason, Medicare won't pay for medical transport for my dad, so he has to pay $125 per ride.  We have an aide that is here M-F from 7-3 on TTH and 7-5 MWF.  If we both went to dialysis the same day, we wouldn't have to have the aide on Tuesdays and Thursdays.  That would save us a lot of money.  The clinic says they have him on a waiting list for MWF but it's really a time sensitive issue.
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Michael Murphy
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« Reply #7 on: March 10, 2015, 04:38:52 PM »

Jersey is loaded with dialysis centers is there any othe center you can try to see if they can take you together. I know that a new one just opened in Livingston and they are looking for patients. 
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jerseyjezebel
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« Reply #8 on: March 11, 2015, 05:33:21 AM »

The one we go to is only a block away.  I'd rather go there so I can get home sooner.
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kristina
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« Reply #9 on: March 11, 2015, 10:16:53 AM »

Hello Bonnie,
I do hope you both can have dialysis on the same days, that would make life so much easier
and I do hope Medicare can give you both a chance.
Best wishes and good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: March 11, 2015, 03:55:26 PM »

 Is it poss for either of you to do home hemo?

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
jeannea
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« Reply #11 on: March 11, 2015, 05:35:39 PM »

What a difficult situation. I don't get $125 for a one block ride. A taxi would cost less. If he's in a wheelchair too then keep pressuring the social worker to get his transport covered.

I would think the main conflict is one of you is exhausted from treatment and you switch off days. Can you change to TTS if he can't change to MWF? It could make a difference. And it might be easier for the social worker to add him to your transport.
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Angiepkd
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« Reply #12 on: March 11, 2015, 07:27:27 PM »

So sorry you are going through this!  Please try to be as positive as you can and work on getting you and your dads schedules combined.  I hope it all gets straightened out for you!  On a happy note, Spring and Summer are just around the corner.  I always feel better when the weather is nice.  Best wishes to both of you!  :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!
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