Wish I'd found this board 6 months ago!

[GeezerHippie]

In October 2011 I sat with my partner in life and love, Chuck, at the New Mexico VA hospital while an intern, in the most casual almost cruel way, told him he needed to go on dialysis.  It was a total shock. It had only been a few months before that the VA told him he needed to have renal "continuity"  care, meaning supposedly he'd be followed by one renal doctor on a monthly basis.

Chuck is a Vietnam vet who was exposed to Agent Orange. It causes difficult to treat, aggressive diabetes, and destroyed the mitral valve in his heart. Until that fateful day in October with that awful intern Chuck had no idea how badly his kidneys were damaged. Part of the damage was actually caused by a botched bladder biopsy in August 2010 when a urologist managed to puncture his kidney that put him in renal failure, necessitating the placement of ureter stents. It was all down hill after that....except nobody told him until October 2011. Even though his GFR was 10 it would be another 5 months before the VA actual got it together to implant a peritoneal catheter.  After we got the diagnosis on that terrible October day I tried to find out everything I could about dialysis.  We felt really lost and alone.  I found the DaVita discussion board but didn't like that it was associated with a company. So, we decided to start a blog.
http://www.esrd-living.org
I've been doing most of the writing because Chuck was just too sick. It's a journal of what we've been going through since the diagnosis.  But it's also about the terrible care veterans receive at the New Mexico VA hospital. There's a section of the blog called "Prevention Denied" that relates how Chuck was repeatedly turned down for a Continuous Glucose Monitor that could have helped him deal with his diabetes better.
Chuck finally got his catheter inserted Feb. 16 and it was one hassle after another as the VA continued to botch things. It's not so much that the people are incompetent (although there are some) it's just that the system is so overloaded they can't provide adequate care. Surely our brave vets deserve better...at least that's what the politicians tell us.  But, if you read our blog you'll see how our representative did NOTHING to help us.
Now that we're finally settling into the dialysis routine and Chuck is feeling better I hope I'll have more time to participate on this board. I have LOTS of questions. But since I don't get to ask until I introduce....I'm here to say, glad I found this.

[willowtreewren]

I'm so sorry that Chuck has had to deal with this (and you, too). It helps that he is feeling some better now that he is on dialysis.

There is so much to learn here that can help, and many supportive folks.

 

Aleta

[WishIKnew]

Glad you found us, too.  Welcome to you both!  This board has been a Godsend to me through pd and hemo and now transplant.  Ask anything you need to, there are very helpful and knowledgeable people here.  And if we can't answer, we can at least relate!

[cassandra]

wellcome Geezerhippie, lots to love, laugh and learn here.

[looneytunes]

Hello GH and Chuck too.  Welcome!   

[GeezerHippie]

Thanks so much for the welcome.  It's good to know that we're not alone in this and we hope that our blog can provide sort of a day by day (when we're not too exhausted) journal for other folks that are approaching this journey and wonder what to expect.

So, now that I've made an introductory post, do I get to ask questions?

[lmunchkin]

Welcome GH. Yes you can ask away.  Sorry you both are going through all this. It aint easy!

God Bless,
lmunchkin

[iketchum]

Welcome to the site. I am having dialysis at a VA hospital in Maine and have had great care, So sorry you folks have had such a rough time of it. You will find so many smart and well educated people here who will answer questions you haven't thought of asking yet, believe me. Best of luck to you both.

[conchman]

Welcome, to the both of you.



 

[Traveller1947]

Hi, GeezerHippie, and welcome!  Chuck's story is a very sad one.  He's lucky to have you to give him support.  But now that you've found IHD, the good people here will give support to both of you, and lots of information and some laughs too.  All the best to both of you.

[Joe]

Hi there GeezedrHippie, and 
Hope you find answers to your questions here. There are a bunch of us on PD and we love to answer questions.