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boswife
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us and fam easter 2013

« Reply #50 on: May 13, 2013, 01:55:05 PM »

oh lord have mercy on you !!!!!!!!  This is unbearable and your having to bear it..   :grouphug;  I hope all our arms wrapped around you is helping.  Bless your poor broken heart!!  ANd please dont ignore your own D now too.  That could put you even more of a struggle...  sending love dear lady... and strength... heavens above!! 
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Desert Dancer
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« Reply #51 on: May 13, 2013, 02:14:54 PM »

As predicted, expected and dreaded, I just received a phone call from Andy. He's absolutely furious at me and told me I might as well just pack up his shit in his van right now because he's not ever coming back to me again. He says it looks like they might not even let him out and this is all my fault for putting him in a "f'ing psycho ward" and he doesn't ever want to see my face again.

I knew with certainty this would happen. It's very likely he'll follow through because that's what he does: when something or someone wounds him he turns his back and never, ever speaks of them again. He was never given any tools growing up to set emotional boundaries for himself but he was taught very well how to hold a grudge. His father and his uncle (who both lived in the same town) did not speak to one another for FORTY YEARS. The reason? Some offhand comment his uncle's wife made at someone's funeral. Forty years.

I just told him I would rather have him angry at me than dead. He said, "Well, you've got it" and hung up on me. So now my assumption has to be that I've lost him no matter what and plan accordingly, though I won't actually execute it until I know for certain he won't come back to me.

My plans involve getting my ass to Seattle somehow so I can hook up with Northwest Kidney Center and dialyze alone. So if any of you Seattle/Tacoma area IHDers have any suggestions on how - or even whether - someone who gets disability and nothing else can make it in Seattle and which are the parts of town to avoid when looking at apartments, please feel free to chime in.

I hope it doesn't actually come down to that but that's the chance I took. I haven't given up hope yet but I have to be ready. I've also already applied online for every single type of assistance I think I'm even remotely eligible for in this state.
« Last Edit: May 13, 2013, 02:17:03 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
MooseMom
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« Reply #52 on: May 13, 2013, 02:25:00 PM »

You are quite wise to make plans for a life without Andy.  I really hope it does not come to that, but it's still a smart move.

We all know that illness can and does affect behaviour, so I am hoping that once Andy is better, his outlook will change.

This is just a horrifying story, DD.  I know nothing about the Seattle area, but other IHDers do, and I'm hoping they can offer some suggestions.

Does anyone have any idea for how long Andy will need treatment?  I know that's an impossible question to answer; I'm just wondering what kind of timeline you are looking at, especially since you are having to think about relocating.
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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."
boswife
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us and fam easter 2013

« Reply #53 on: May 13, 2013, 02:27:59 PM »

Everything in me sends you support!!  And just some thoughts........ This IS an illness hes going through.  Words he speaks 'may' be different from those he speaks in his 'right' mind... Hes in a different 'place' and may not even remember things he's said (as you have already seen).   I went through some things with my hubby long ago that were thought to 'be the real thing' only to finally understand  it was the drug talking.  I wish you well in how it all comes to pass for you.  God give you strength  :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
cariad
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What's past is prologue

« Reply #54 on: May 13, 2013, 02:28:39 PM »

Darling, this isn't going to be a polite reply, but I cannot censor myself after following all you've been through.

I read this to Gwyn and then shouted "She saved your life, you f---ing a-hole!"

So sorry. :(
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
boswife
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us and fam easter 2013

« Reply #55 on: May 13, 2013, 02:37:35 PM »

You got that right Gwyn!!!!!!!!!!!!!!!!!!
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Desert Dancer
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« Reply #56 on: May 13, 2013, 02:59:38 PM »

Even though I knew this was coming it has just pushed me right up to the edge; I can't stop shaking. Really bizarre.

I talked to my oldest friend from NJ a little while ago and she mentioned an organization called NAMI (National Alliance on Mental Illness). It sounded familiar and sure enough, it's one of the resources listed on the back of the 'Involuntary Petitioning Process' brochure. Turns out they have meetings, meetings for family members. She also told me they are just chock full of resources. I'm going to call them shortly and see if they are having any meetings. If not, I may just get myself to an Al-Anon meeting instead.

Seems like every time I cast my net a little wider in search of support, I always get at least one tidbit like this that helps. Thank you all so much for your support. I don't think you'll ever have any idea of the profound impact you've all had on me, and how much your kind words bear me up and keep me going. It's something I can never repay, not even over several lifetimes.
« Last Edit: May 13, 2013, 03:00:39 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
MooseMom
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« Reply #57 on: May 13, 2013, 03:04:58 PM »

That's a really good idea, DD.  As much as we here on IHD want to help, what you need now is more practical, immediate and personal help from others who have more experience with mental illness and what it does to families.  I wish you all the luck in the world, and if you could continue to give us updates, that would be much appreciated.  We are all eager to hear how you and Andy are doing.
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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."
Desert Dancer
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« Reply #58 on: May 13, 2013, 04:40:10 PM »

Just got a call back from Andy's counselor with an update.

After evaluating Andy they have decided he needs to be transferred to longer-term care for further stabilization. How long they will keep him at the new facility I can't say; could be a few days or a few weeks.

I asked the counselor what his impressions were when he spoke to Andy. He said he was not the one to actually talk to him today, but that the social worker who did talk to him found my statements to be accurate, to wit: they picked up on his manipulations and "putting on a show" (the counselor quoting my own words back at me). I shouted to everyone who would listen and wrote in the petition itself that he had lied, he would lie, he would put on a show and say whatever they wanted to hear in order to get out and that he is incredibly intelligent.

They listened to me. And they picked up on it.  :bow;

Now I simply need to hope the new facility is as swift on the uptake and as willing to listen to me. Reviews don't look hopeful. I am going to a NAMI (National Alliance of Mental Illness) peer group tomorrow so hopefully there will be others there who can guide me in the specifics of this terrible disease and the appalling system I'm trying to work within.
« Last Edit: May 13, 2013, 05:13:13 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
big777bill
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« Reply #59 on: May 13, 2013, 05:55:44 PM »

 It sounds like you have him in the right facility now. Praying for you and Andy incessantly.
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
Desert Dancer
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« Reply #60 on: May 13, 2013, 06:24:56 PM »

I am so sorry for the oh-so-incessant updates but I'm right on the edge myself now and I just don't know what else to do.

I got another call from Andy. I called him 'Sweetie' and he said "No more of that sweetie bullshit, that's done. You have destroyed everything we had" and hung up on me. He was angry because I told them he promised to remember the heparin 'next time'.  He has no memory of that conversation. He has no memory of most or all of the things I wrote on the petition. I guess he thinks I just up and decided to put him away on a whim.

The uncontrollable whole-body shaking started again after that conversation. I took it as a cue that I am very, very close to breaking. The fleeting thought of, "oh, hell, just bleed out yourself and be done with the whole thing" pretty well confirmed that. No worries, please, I did not invite the thought, dwell on it or otherwise allow it to take hold in any way. But there it was.

So I just spent an hour on the crisis/prevention hotline sobbing my heart out to one of their wonderful counselors, but I don't know what I'm going to do tonight except focus on trying to get on that f*cking machine. As if I don't have enough going on already. That f&cking machine.
Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
willowtreewren
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My two beautifull granddaughters

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« Reply #61 on: May 13, 2013, 07:31:42 PM »

DD, I cannot even fathom what you are going through, the strength you have summoned form within and the stress it is having on you.

But I do have to urge you to hang on, keep using all those resources, keeping holding yourself together, keep putting that foot in front of the other....

And one important thing that I want you to think about. Those phone calls from Andy? You have said how manipulative he can be.... please consider that he is deliberately manipulating YOU!

You are visibly shaken after each one. That is natural considering what you are going through, but think about that extra level.... I just want you to have some extra fortitude to help you deal with this.

 :cuddle; :cuddle;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Henry P Snicklesnorter
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« Reply #62 on: May 13, 2013, 07:52:13 PM »

.
« Last Edit: October 21, 2013, 03:00:34 AM by Henry P Snicklesnorter » Logged
MooseMom
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« Reply #63 on: May 13, 2013, 08:18:30 PM »

I am so sorry for the oh-so-incessant updates but I'm right on the edge myself now and I just don't know what else to do.

Please, oh please do not EVER apologize for the updates.  We have specifically asked you to update us.

Quote
So I just spent an hour on the crisis/prevention hotline sobbing my heart out to one of their wonderful counselors, but I don't know what I'm going to do tonight except focus on trying to get on that f*cking machine. As if I don't have enough going on already. That f&cking machine.

Did you feel better after talking to the counselor?

Honestly, I don't think that now is the time to be thinking much past tomorrow.  I know it is a cliche, but perhaps it really applies to your current situation...one step at a time, one day at a time.
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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."
KarenInWA
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« Reply #64 on: May 13, 2013, 08:19:07 PM »

Hey DD - I live in the Seattle area. I believe they also allow home alone HHD at the center I went to, Puget Sound Kidney Centers. Seattle is expensive to live in. However, NWKC is throughout King County, which is the county Seattle is in. PSKC is in the county north of King county. I hope it doesn't have to come to this, but if it does, I think moving here is the smart thing to do.

Another good resource is our very own Bill Peckham, of course.

I am thinking of you as you go through this terrible time. I honestly don't know what I would do if I were in that situation. We are already dealt enough with our failed kidneys, so to have to go through more then that just isn't fair.

 :grouphug;

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
KarenInWA
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« Reply #65 on: May 13, 2013, 08:27:17 PM »

I just had a thought - both NWKC and PSKC have foundations to help out their patients when in time of need. They may be able to help put down a rental deposit, for example. Help you get situated in a new home. I can check on that for you tomorrow if you'd like.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
MooseMom
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« Reply #66 on: May 13, 2013, 08:41:24 PM »

That's really kind of you, Karen.  :thumbup;
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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."
Desert Dancer
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« Reply #67 on: May 13, 2013, 10:31:20 PM »

And one important thing that I want you to think about. Those phone calls from Andy? You have said how manipulative he can be.... please consider that he is deliberately manipulating YOU!
You are visibly shaken after each one. That is natural considering what you are going through, but think about that extra level.... I just want you to have some extra fortitude to help you deal with this.

You are absolutely right, of course, and it is yet another thought which had not occurred to me. I'm really off my game. It still doesn't make them any less hurtful, but I know you know that already. I didn't take that for your meaning.

I have been where Andy is now, - an involuntary patient under psychiatric care after an attempt to end my life, which was only circumvented by pure chance. I had been suffering severe depression.
That was a long time ago and ultimately I came out of the experience with the tools to not only deal with my depression, but to actively guard against ever going back to that dark place. Years of working at that have given me the ability to maintain a very positive outlook on life.

Henry, there is another member here who can corroborate these next statements if she chooses because she's gotten a good overview of the horror that was my life till I met Andy (and there's been a sprinkling since, as you can see). Here is the Cliff Notes version:

Involuntary psychiatric institutionalization from ages 10 to 18 (continuous)
Five suicide attempts before the age of 19
Anorexia. Molestation. Child Protective Services, called by the neighbor.
An 11-year marriage to an alcoholic, drug-addicted, physically and mentally abusive Opus Dei Catholic who was 22 years my senior. Married him for spite and escape.
Alcoholism. Unspeakable things. Rehab. Recovery.

I have lived in the place Andy is living in now for the better part of 29 years. Where do you think the strength comes from? You know.

And though I know it is not the image I project here, I am probably one of the most sickeningly optimistic people I know. I see hope everywhere. I had to work for that attitude. I won't give it up.

I just had a thought - both NWKC and PSKC have foundations to help out their patients when in time of need. They may be able to help put down a rental deposit, for example. Help you get situated in a new home. I can check on that for you tomorrow if you'd like.

Oh my god, Karen, are you serious? (I know you are.)  :bow;  I am just speechless (for a change). How wonderful they have such programs. Thank you so, so much for this; it really gives me hope.

MooseMom, I really did feel better - or at least calmer - after talking to the counselor; he was very empathetic and compassionate. I'm surprised he was able to understand a word I said with all the blubbering I was doing in his ear. Unfortunately I won't say I sobbed it out. I think it was just the first of many tears to come.

Now, the little bit of update I can give. First, I have to say that place is impossible to reach via phone. It is a phone tree loop from hell and not one button you press makes a damned bit of difference either way. So when you get someone on the line, you don't let go. Also, you must start calling 2 hours ahead of time if you have to call at a certain time.

So I got his counselor on the line with a list of questions I'd kept through the day (and still managed to think of 2 more immediately upon hanging up).

1)  NICOTINE!!! Holy Mother of God, I COMPLETELY forgot to make sure that nicotine replacement was broadcast to everyone within earshot and arranged before he arrived. Major fail. It was the first thing I asked and it was the last thing I said before he got off the phone, "Please make sure it is offered to him!" He assured me he would go ask Andy immediately if he'd been offered the patch. It explains at least a fraction of the hostility.

2)  I asked if they could transfer him to another facility other than the one they're transferring him into. The answer is yes... but only if he's voluntary. The facility where they are placing him specializes in involuntary commitments, which most certainly means the worst of the worst and I shudder to think what might await him. These are assumptions, of course, based merely on the particular niche they fill. The reason I asked in the first place is because I'd already thoroughly researched a different facility, and the phone journey that led him to where he is actually began with that facility.

3) I made him aware that Andy doesn't have any memories of ANY of the events I described in the petition. None. Now, this could be manipulation on his part but there's one reason I think it isn't: when he was in the medical hospital - the first two days after his attempt - he was in a much better and clearer space than he is now. At that time he broke down and cried and told me he had no memory of the attempt but one. Doesn't remember getting out the needles. Doesn't remember how he got into the bathroom. He only remembers that he watched the sharps as he drove them in - a dozen sites - and didn't feel any pain. He remembers thinking how strange that was.

4) I've already gotten the number of the new facility and will try to call ahead and introduce myself, ask some general questions. I need to be certain that his direct care providers hear directly from me; when the first transfer (on the 3rd) took place, not everything got transferred to the new facility and things were missed. Don't ask me what things just now, I only have a vague memory of "that didn't come over from Banner" in response to some question I asked.

5) I have found a peer group meeting of NAMI (National Alliance for Mental Illness) tomorrow from 2:00 to 3:30, so I'm going to make sure that meeting's still running and head over there where I belong. Hopefully I'll luck into a good meeting like I did with my first Al-Anon and AA meetings.

6) After going to his job tomorrow at 10:00 AM to kiss his boss's fanny, I intend to head over to the bank and withdraw as much as I can, leaving enough to cover the bills that are still outstanding. I'm going to open an account in my name only at the same branch. I'm certain if he tries anything of that nature he'll think I took it to some other institution so he'd be sure not to find it, so it makes sense to me to just leave it where it is, but in an account he can't access. 'We' need our finances protected and 'I' need the finances protected no matter which way this goes, so it seems to me like a necessary step. My ex cleared out our account when I left him, and I have a longtime friend who is extremely bipolar (read: you can't bullsh!t a bullsh!tter) giving me some excellent advice. His opinion seems to be that Andy IS deliberately trying to drive me away so he can point to everything he's "lost" and justify his next attempt. I'd felt as much and he confirmed it. He suggested that Andy's next step could very well be to clear out the account and use it to self-medicate (drinking again), gambling or anything else. That it is - at least in bipolar world - very common to deliberately burn all your bridges so you can claim abandonment and justification. Thus let it be written, thus let it be done. (I always hear that in Yul Brenner's voice.)

7) I am utterly and thoroughly exhausted and it just hit me like a brick wall. It can never have the decency to just sneak up on me once in a while. I have GOT to get on the machine tonight (fourth day and will NOT go to a fifth again) and I'm not even quite finished with set up yet. I've got to get in there and concentrate because I've already made idiotic, air-headed mistakes tonight. Don't worry... I know that emotional upset ALWAYS results in me making dumb beginner's mistakes and I hit on a method to eliminate that just this very evening (other than just double-checking everything 8,00030).

When my mom came out last week she got to see me set up, cannulate, the whole works. I jokingly said to her that she was going to be my dry run, the first person to get a preview of the educational videos I'd love to record some day and post on YouTube. And I did, in fact, end up doing a running educational monologue the entire time - explaining exactly what I was doing and why, just as I would to anyone else who had never seen a dialysis machine work in their whole lives.

So the strategy I hit upon? Do the running monologue with myself. Pretend I have a newbie audience looking on (I usually pretend I have a team of Swedish efficiency experts watching me). Teach while you do, and any mistakes will be revealed and avoided immediately. It worked. I only have to run a little bit of saline through the lines for the second prime and still need to do my water tests and draw up my syringes.

So I must go. I've been charging my laptop all evening so I can still reach friends if I can't sleep and need to talk. At some point I must remember to eat; my dry weight has dropped at least 4 kilos and I haven't actually gone low enough to find my dry weight yet. Who the hell can remember something like that at a time like this?

I leave you with words from Winston Churchill: "If you're going through hell, KEEP GOING."

I do hope I made at least a little bit of sense.


« Last Edit: May 16, 2013, 11:40:21 AM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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« Reply #68 on: May 13, 2013, 11:50:49 PM »

DD, I'm thinking of and praying for you and Andy...

He's a really sick and delusional man right now....

Hope things go back on track soon...

And if by chance, this does signal the end of your relationship, I hope you can get back on an even keel very soon... Probably sounds heartless, but you were a strong, capable woman long before you met Andy, and you can certainly can be again... He is not the be all and end all, despite what he believes, and would like you to believe... And a life without, or even at a distance from Andy might be a good thing for you....

God bless...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
willowtreewren
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My two beautifull granddaughters

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« Reply #69 on: May 14, 2013, 04:16:44 AM »

 :grouphug; :grouphug; :grouphug;

All I can say is that I admire your fortitude and focus. Please lean on us as much as you need to.

You are in my heart.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Desert Dancer
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« Reply #70 on: May 14, 2013, 04:25:48 AM »

Henry P, please forgive my thoughtlessness in not expressing any gratitude to you in my last reply. I was lying here and it popped into my head that I had just recited personal history back at you (purely by way of showing understanding, not tit-for-tat) and had utterly forgotten to thank you for your words and the courage it took to share them.  Thank you from the bottom of my heart.

Darth, I have to admit your words cut very, very close to the bone. I suppose they wouldn't do that if I didn't recognize some truth there. I have recognized the problem of my extreme emotional entanglement from time to time through the years. But my god, I was co-dependent on my ex -a man I hated even before I married him. I LOVE Andy.

Everyone who sees us together sees it. It comes across in pictures. Neither of us have to say one word about how we feel about one another. And we've had that 13 of the last 16 years we've been together. We can sit in a room together for hours in silence, each perfectly happy and comfortable in the other's presence. We can have entire conversations just using facial expressions and tilts of the head.Now he hasn't looked me in the face in weeks and the few times he has all I see there is agony.

This is a man who drove home on his half-hour lunch EVERY. SINGLE. DAY. when I was down with my back through nearly the entirety of 2011, feeding me by hand and making sure I was situated. He washed my hair in the kitchen sink every other day when I had my permacath in.

This is the man who holds half of my memories, and I half of his. If I lose him half of my life is going to be ripped away, because he remembers different events than I do and/or sees them from a different perspective. I was banking on those memories for our old age.

This is a man who I watched carry two tiny little coffins to two tiny little graves and set them gently down. Don't tell me he is not strong. Because HE got ME through the second one. And I him. But in those first days and months... this has taken me right back to those times in a rather PTSD-esque way. (Not that I know more than surface facts about PTSD and maybe a little more).

I will not give up on him. I know he is in there somewhere. If this does mean the end of my marriage - either way - he will have to leave me. Because I promised him we would grow old together and I would always have his back. I still intend to do that.

I should correct any misconception that Andy has ever thought or implied he is the be-all and end-all. That would have been (is) my ex.

I am so sorry this has turned into another long, rambling missive. But I'm having a really bad night. Today is our wedding anniversary. 

I managed to get myself up and running on the machine with no problems. In on the first shot with both, go figure. But even though this is the third time I've done it alone this time is different. This is the first time I don't have anyone to call when I get on the machine. When I come off the machine in the morning, there won't be anyone to call. It really slaps me in the face every time it occurs to me.

I said to my mom last week I was born with the personality I'd need in life. Lying here just now I thought if she were here I'd say, "Mom, I don't want to get dragged back into the mental health system." Then the two thoughts merged and I had a - well, revelation might be a strong word - realization?  Every experience I had as a child trapped in that system... those are things you don't ever forget. Do you have any idea how I felt signing that petition knowing? Knowing? Combined with my personality it makes me tailor-made for the situation I find myself in here in middle age.

Or maybe I'm just talking out my  :sir ken; Who can say?


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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
MaryD
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« Reply #71 on: May 14, 2013, 05:05:50 AM »

You are a strong woman. Stay strong.  And keep posting.  I couldn't sleep last night till I got up and checked how things were going with you.     :grouphug;
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MaryJoe
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« Reply #72 on: May 14, 2013, 05:21:23 AM »

Your love for Andy is evident in all your posts. Your determination to fight through this situation for and with him comes through loud and clear. You are wise to have a "plan B" in place to care for yourself should the worst come to pass and Andy truly leave you, but I hope that you will not have to implement that plan. Your description of the love and life you and Andy share brought me to tears. My husband and I have had a similar relationship for 37 years, to lose that closeness would be devastating. I hope with every fiber of my being that Andy will come back to you soon, healthy and strong.
 
I'm glad you were able to get on the machine with no problems.  Now if you can just assure us that you are eating regularly as well...

I hope your meeting with Andy's boss goes well this morning.

My words seem weak and trivial, but I hope you can feel what my heart is saying.   :cuddle;

 
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
Darthvadar
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« Reply #73 on: May 14, 2013, 05:54:51 AM »

DD, I KNOW you love Andy... You would have just walked away by now if you didn't!... And his words and behavour wouldn't bother you if you didn't!... And I believe he loves you too... He's not in a frame of mind to show that he loves you at the moment... He's in a very dark place...

Trouble is, right now, he's FAR more than you can handle... You've got enough on your own plate trying to keep yourself alive... You love him, but unfortunately, you are not what he needs right now.. He needs professional care... And to keep your sanity, HE's not what YOU need right now...

I REALLY hope it all works out for you... And I hope it works out for Andy... However, YOU are my priority right now... He's in a place of safety, and is being well taken care of and supported, you however are not receiving that professional care and support, and have to take care of yourself....

Thinking of you, and praying for you both...

Love...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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Might as well smile

« Reply #74 on: May 14, 2013, 07:07:44 AM »

Thinking of you today and sending strength to bolster the incredible store that you already possess.  :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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