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MeandMyGiant
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« on: March 10, 2018, 04:26:23 AM »

Hello everyone here on ihatedialysis. My name is  Lauren. I am a 35 years old female. My husband (who I call 'Giant' or 'The Giant'- hence my forum handle) has ESRD.

We are almost a year into this reality that is kidney failure, but as it was a rapidly progressive glomular nephritis that brought on his renal failure, we still feel quite cluessness and new and lost trying to navigate this reality.

Well that and the fact no one ever told us what ESRD is, not once while my husband was in the hospital, was ESRD ever even explained to either of us. Nor was it ever even addressed directly.

It's not their fault my husband got Goodpastures Syndrome, but being that they knew he had end stage renal failure, it really kind of frosts my cookies they pussyfooted around the truth about it.

But I am not going to dwell on that. I think a little bit of bitterness in response to my loved one having ESRD is probably a healthy response.

In any case, I won't dwell on that.

So moving on, upon our return home from the hospital, and with researching, we are just now starting to get an idea as reality sets in.

What it means to be on dialysis. What ESRD means.

It's heartbreaking and devastating.

Perhaps some of you reading this, be it a dialysis patient yourself or a dialysis patient is a loved one of yours, might understand or relate to the sadness one feels regarding this devastating realization.

That my husband is on borrowed time. My heart is broken.

Broken.

I am bawling right now as I write this

...

I have been reading threads on this forum for a while since he became ill and it has been very helpful to me.

I am here to talk with learn from the insights of those with understanding and experience.

Thank you for your tolerating my sadness as the cold hard truths of ESRD solidify themselves to me.

I am not feeling a 'poor me' sadness. Just a sadness because I love him so much. It breaks my heart that his health, his life, has been taken from him like this.

Thank you for reading this. I am of course devastated by my husband's ESRD, but I look forward to getting to know everyone here that I have the good fortune to do so with.

~Lauren💔
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #1 on: March 10, 2018, 05:34:18 AM »

 :welcomesign;
Hello Lauren and Giant, welcome to the site.

my husband is on borrowed time.

Try not to think like this. Your husband is alive. I know little about Goodpastures Syndrome, but Google tells me that if treated quickly it has an 80% survival rate. As to kidney failure: Speak to people on this site who have lived on dialysis for decades. I know people in their nineties who are on dialysis. It is bad, but it is not the end. And treatment and medication improve all the time. As someone once said about life in general, which is true of people with any type of serious disease: "With medical science evolving all the time, every day alive is a day closer to immortality." Whereas I do not expect anyone to invent immortality in my lifetime, every day I am alive I expect medical science to improve so that (on average) I get an extra day's life expectancy per day, giving me (in total) a normal life span. Don't just hope for that, expect it. Life for you and the giant are bad enough without you worrying about the worst. Expect the best, and if you don't get it, worry about that when it happens. Don't ruin today by dwelling on the bad "might be".
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Charlie B53
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« Reply #2 on: March 10, 2018, 06:50:05 AM »


Hi Lauren, and Welcome to our IHD 'Family' of the afflicted.

I know nothing of Goodpastures only that I havee heard that name somewhere before.

For me, the most important thing was to learn eerything I could about Dialysis as a treatment to continue life.  I fouond that Kidney School a great place to learn and very highly recommend that both you and your 'Giant' spend the time to learn about what may be best for his treatment.  Because there are yet decisions to be made concerning his type of treatment, learning more now can make those far better decisions.

http://kidneyschool.org/

Learning to eat more responsibly, reducing the workload on his kidneys, can extend his time before needing to start dialysis. However once he does start dialysis depending on the type of treatment, fluid control can become a major issue. Many of us on Hemo are greatly limited in our daily fluid allowance.  Knowing much of this in advance, learning ahead of t ime methods to cope, can ease the transition into treatment.

Read lots, post questions and we will do our best to help you both understand.

Take Care,

Charlie B53
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Simon Dog
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« Reply #3 on: March 10, 2018, 07:54:02 AM »

www.nephrologynews.com is a great source of info, but it is more of "current events and research" than a source of general background information.   Still worth a read.   
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cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: March 14, 2018, 12:34:12 AM »

Welcome to the site Lauren and Giant


   :welcomesign;


Take care, 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
       still on waitinglist, still ok I think
iolaire
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« Reply #5 on: March 14, 2018, 05:25:16 AM »

Welcome to the group. I'm glad you found the site as it is a wealth of information and support.  The I Hate Dialysis name gives one the idea that dialysis is bad, but it's what we have to maintain our life and it does a fairly good job at that.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kickingandscreaming
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« Reply #6 on: March 14, 2018, 08:06:17 AM »

Welcome to both of you.  I am so sorry that you have to be here, but I'm glad that we are here to share knowledge and support with you.  I agree with what Paul and Charlie said.  I, myself, am a dialysis veteran of 3+ years, certainly not an old timer (even tho I'm old) but experienced enough to help out.  One thing I would say is to make sure you explore the 3 basic methods of dialysis: Hemodialysis ( in clinic or at home) and PD (peritoneal dialysis) which is done at home.  I do PD and find it quite satisfactory. And give yourself plenty of time to grieve.  The diagnosis of ESRD is a big deal and it can set off an emotional tailspin.  We've all been through that to one degree or another.  Take good care.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
justcoping
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« Reply #7 on: April 12, 2018, 04:41:29 AM »

Hi Lauren
I recognised many of your feelings. I feel them too. My partner was diagnosed with Goodpastures 2 1/2 months ago, and it feels like the reality only dawns slowly, I'm still not there in the space you're in, I feel so, so sad for you and for your husband. I'm still dealing with daily new crises. But of course there's no cure, no way back.
I've had to fight and fight and fight, though I'm exhausted, to get the hospital, doctors and GP surgery to pay attention and join up the dots. He has so many terrifying and inexplicable (tho I'm an expert now) symptoms, and when HE sees the medical staff he often plays them down (!) I'm the harridan who cuts though the Englishman minimising the awful truth, who rants - but tells it like it actually was. How can they treat or help you unless they know the truth?
So I'm Ms Angry to life, the world and everything! Some days. And some days I'm Ms Utter Helpless Despair.
You say you're a year on - I don't think you'd have written as you did if a transplant was an option. People say your body gets used to dialysis - is that true for your husband? C did get appalling headaches after dialysis - they've adjusted something in the machine, and yesterday for the first time he didn't have a headache. Feels like a huge achievement!
C has no appetite, and often feels sick and nauseous, at any time, not to do with dialysis - he desperately needs to put on weight - how do you deal with that Lauren?
C has had severe shortness of breath for 2 weeks now - I'm making a big fuss all round as usual. They brought forward our appointment with the consultant to yesterday who said it was to do with a heart condition, not his kidneys (lack of) - I googled the phrase the Echocardiogram used - 'severely impaired LV systolic function' and am in a new trough of despair!
Did your husband have catastrophically low haemoglobin too initially Lauren? I think that's what has caused his heart condition.
There's a wonderful warning sign you see in France on ungated railway crossings: Un train peut casher un autre. This means : You think you've been careful and avoided a disaster, but it simply concealed another!
Do please keep communicating Lauren, you're not alone.
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MeandMyGiant
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« Reply #8 on: June 11, 2018, 09:45:28 PM »

Hello again,

Thank you to everyone that welcomed me and wrote back. You have no idea how helpful your support in those messages has been!

Though I have not replied yet  and I am not individually replying to you (Not at this exact moment), I want you to know that I read and reread all of them,  I am so thankful to receive your replies!

I am still so heartbroken(there isn't a word to describe the feeling in the English language so 'heartbroken' will have to do) and there is no one in my daily life that I feel comfortable discussing these things with. People have offered support but hearing from others in similar situations or at least with the understanding of them is what I am most comforted by and comfortable with.

So thank you all so much. The tears are falling again as I type but I am so thankful to have found this forum and been allowed to come and join with everyone.

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Jean
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« Reply #9 on: June 12, 2018, 09:48:05 AM »

 :welcomesign;  We are always welcoming to our "new additions" . Kidney disease is not an immediate death sentence, so dont cry please. As you get " used " to it, it will not be such a challenge. I know nothing about GoodFellows disease, so I not able to even try to comfort you in regard to that. I wish you well and God bless you on your journey.  BTW, it is okay to cry, I spent many sleepless nights when I was first diagnosed, but that was 10 years ago and I am still not on dialysis, so chin up. As we have many here who have lived great lives on D, we also have many here just waiting for it.
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One day at a time, thats all I can do.
LorinnPKD
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« Reply #10 on: June 13, 2018, 02:00:29 PM »

It sounds like it's been a really difficult journey for you both, Lauren.

And it's OK to cry.  Or be angry.  Or numb.  It's also OK to feel joy that he's still around and that miraculously you're getting through this together.  It's a weird mix!

But there's really a lot of happiness to be had and I hope that the two of you are finding it more and more as you navigate your way through this trial.

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