Sixth call

[paris]

I'll let the discussion rest.  There are changes to be made.  It needs to be better for eveyone.  In the long run, the odds are still better here.  Regarding immigrants:  Doesn't everyone complain about the border and people crossing it to get dialysis from the US.   

We all look at life differently.  Move on, make changes happen, be a part of the change.    I have done tons of research from the first day on, but I research the positive results --- how long can I expect an ECD kidney last?  What can I do to over come the side effects of treatments, meds, etc?  So I know how much I have to get done on my bucket list! lol  And to prove their statistics wrong. 

So here is better treatments for all in the future          

[MooseMom]

Hear hear, Paris!   

[Zach]

So here is better treatments for all in the future          

I'll have what they're having!

 

[Mr. B 123]

  Keep up the good fight Moosemom.  I enjoy and support your views.  Just sayin'.

[paris]

@Mr. B 123, I hope you didn't think Moosemom and I were arguing.  We actually like each other and respect each others views.  We had the pleasure of meeting last year at Las Vegas and she is so much fun to be around.   I think because we respect each other, we can freely say how we feel and still be friends.  It really is a family here -- we disagree but we love each other through thick and thin!!   And if you ever need an answer or research done, she is the one to go to!!      

[Mr. B 123]

Paris,  I also got a chance to meet her this spring at the Chicago lunch and I agree with her.  From what I have read over the past 12 years the dialysis world has a few things that need to be improved and until we try to improve it things will just be the same and not get better.  She and I are at the same stage of kidney issues and are not looking forward to the future of our health care issues.  I have not been on the site too long but I respect everyone and am learning new things every day and really appreciate the dialog everyone adds to the discussion.  I have read many of your post and appreciate all the information and help all share.  Hang in there, God Bless.

[MooseMom]

Oh, I apologize for sounding so bolshie.  I've not been on dialysis yet, so what the hell do I know, really? 

I was in Madison last week for a pre-tx eval.  There was a couple who was also there for the same reason.  We ended up following each other around the hospital as he was getting the same tests as I was having to get...EKG, chest X-ray.  I took the opportunity to ask him about his dialysis (me?  Nosey?), and his wife explained that he had been on dialysis 7 years and was now on PD as his hemo accesses had all failed.  We talked about NxStage and various other things.  This whole exchange really upset me because this man, after 7 years on D, was in a wheelchair, and he was grey.  I mean, he had NO color in his skin; he was literally grey.  I was so shaken by my short conversation with him.  Now, I know that he might have other problems other than ESRD, but I wasn't going to ask about his whole medical history.  But I couldn't escape the fact that this man had turned grey.  And dry...like the wind could turn him into dust.

The same day, I spoke at length with the tx nephrologist.  She is originally from the Sudan which is neither here nor there but was still of interest to me.  Anyway, I was talking to her about my fear of dialysis and told her that I had watched my mother suffer through it, and she told me that she had spent some years as a neph in a dialysis clinic.  She said that it was such a depressing experience that she went into tx nephrologist because she preferred "working with patients who have some hope."  And that's a direct quote...devastating honesty.

So now, a week later, I still am feeling the after effects of these two occurrences; they left me rattled and probably overly sensitive and horrified.  It makes me mad at this disease and the toll it takes, and then I hear these stories from people I have come to care about here on IHD who have suffered at the hands of "the system".  If I am not careful, I fall victim to anger and resentment and general frustration.  Fortunately for me, Paris is always there with her optimism and with her different way of looking at things.  I relish posts from people who have different views from mine because I live with my views every day, and I get bored.  LOL!  There is always something that others here can teach me, especially lessons about improving my general attitude which can be truly dim all too often.

But it is true to say that there are professionals out there who are questioning the status quo and who are working to improve things.  We have wonderful advocates right here on IHD and, say, Home Dialyzors United who are all doing great work at the local and at the federal level to improve the lives of renal patients. 

[AguynamedKim]

First off, I'm really glad to hear about you getting another call.  That's just wonderful.

Secondly, thank you so much for sharing information on the "cardiac" event kidney versus other types.  The double kidney transplant from a baby was something I had not heard of either.

Finally, while I know an experience like seeing the gray man can be really upsetting, please remember that you're not him in so many ways.  I don't know what the fates will bring you but I sure as hell know you have a massively higher chance of being infinity healthier after 7 years on dialysis should you end up doing that.  You're education, self-advocacy, determination, health and community, are all huge factors you have in your favor.  I know dialysis can be extremely tough, but you are so much tougher.

[natnnnat]

  You're education, self-advocacy, determination, health and community, are all huge factors you have in your favor.  I know dialysis can be extremely tough, but you are so much tougher.

Hear hear.

[paris]

Now I am spending all my time helping my husband be positive and look on the brightside and he hasn't even started any chemo treatments.  I have to stay up most of the time.     Just a peak inside my life ---  last week (seriously all in one week) , my 38 yr old son emails (really? an email?) to say they are expecting baby #5  (they live 10 minutes from us).   Next day he says his life is full and he doesn't need the stress of surrounding family, so he won't be communicating for awhile.  He has done this before, so now it is hard to ever trust when he comes back.   Second thing --- my 35 yr old daughter and her two children moved in with us after her husband left her and cleaned out all the money.   Then, Barry was diagnosed with Lymphoma on Monday.  The world has stood still while we are processing this info.  If I let go and get down, there may be no going up again.   For me, looking ahead with dread doesn't help me. I can get through this.  And the kidney stuff has been an interesting time period. So many times I got kicked in the teeth and then I would do more research to learn what was the next new thing.   Sometimes here, I get down, but I can leave it here.

Moosemom, you can handle any thing that comes along.  Look what you have lived through so far.  And you are so close to getting the right transplant. You know this game inside out already.  Remember that things are better since your Mom was on dialysis (Bless her heart).  I know you will be in charge of your care and nobody better mess with you.  lol     I'm patiently waiting for your call -- the one where everything is perfect.    There will be some celebrating around here that day!     Enjoy your weekend.  Hope you have a nice one.

[eeyore31573]

okay by no means am I an expert but I do want to say 1 thing....our training nurse told us that even though the hubby's prescription for HHD is 5 days a week....if he feels he needs to do a treatment on an off day by all means do it because the patient ALWAYS knows their body better than anyone else...even if we do not need to remove fluids and just need a cleaning.....that is why I like HHD.....WE are in control of hubby's health care

[MooseMom]

Aguynamedkim and natnnat, thanks for the encouraging words.  About the grey guy, well, my neph is in a group practice that includes my PCP and various other docs, so when I go see him, there is always a pretty full waiting room of patients.  I try to pick out which ones are there to see my neph so that I can get an idea of how long I'm going to have to wait for my turn.  The last time I saw my neph, I was being escorted by his nurse from the waiting room to one of the examining rooms, and I passed a gray man.  I was appalled to learn that he had just finished seeing my neph and that he was a dialysis patient (why he was seeing the neph at the office and not at the clinic, I have no idea).  And then when I saw the gray man at Madison, I just got very despondent.  I'm constantly being told by medical staff how well I look, and it makes me realize that I'm expected to turn gray, too.

I know I am a different patient from the gray men, but it's still a sobering experience.

Paris, I really don't know where you find the sheer force of will to be "up" all the time.  I will flatly admit that I couldn't, wouldn't do it.  I would find it utterly exhausting.  I don't know how your son can live with himself...what is this bs about him not "communicating for a while"?  I'm gobsmacked, which is rare.  I confess to not even knowing you had a son.  I knew about your daughter who has had to move in with you.  Is her presence of any comfort to you at this time, or is it just one more thing you are having to cope with?

I sometimes wonder if having to be "up" all the time has one advantage, that being the possibility if you pretend long enough that a bright side exists, you eventually believe that it is true.  I wouldn't want to have to find out, though.

You are a better person than I am because I strongly suspect that if I'd been through CKD and transplant (especially in such emotionally fraught circumstances as you and your 100% PRA!), only to have my husband struck with lymphoma, I'd be so bitter and twisted I'd be unrecognizable as human.  I think you are wise not to look too far into the future because no matter how hard you look, the future still will remain shrouded in mist.

eeyore, you have been blessed with a training nurse who trusts your intelligence enough to let your hubby tailor his dialysis needs as he sees fit.  You ARE an expert when it comes to his unique needs.  There is a lot of complaining about "cookie cutter treatment", and what you are doing is the very antithesis of that.  Good for you!

[Zach]

If you attend the annual AAKP Conference, you won't see too many "gray" people there.

The American Association of Kidney Patients is pleased to announce its 2012 Annual Patient Meeting: Kidney Care - Innovations for a Changing Enviroment, will be held Aug. 9-11, 2012 in Atlanta, Georgia.
http://www.aakp.org/events/convention/2012-convention/
http://www.flickr.com/photos/kidneypatients/page6/

With better dialysis filters and more treatment time, most people on dialysis look "normal."
The only way you might be able to tell they are on dialysis is if you catch a glimpse of their fistula.

 

[MooseMom]

Zach, when I met everyone at the IHD meetup last year and also at our little Chicagoland meetup a few months ago, no one was gray!  LOL!  In fact, everyone looked really vital and healthy.  So I DO know that good dialysis doesn't make you gray, but on a more primal level, the gray that I did see made me feel apprehensive.  I can't claim to be always logical. haha

[Chris]

"Surely you can't be serious?"
"Yes I'm serious and don't call me Shirley!"
 
This seemed appropriate for last sentence MooseMom