Joined just in time for the holidays, due to the 'Free Kidney' Promo!

[justjen321]

My name is Jen, and I've been reading voraciously for a few weeks. My husband is the patient, and I am his caretaker. We live in Indiana.  Our story...

January 29th, 2011 - Husband (44) has a TIA, very minor, no lasting damage, but in the ER we learn his kidneys are barely functioning. We were out of state, so we spent a week in a hospital there before being able to come home.
Neph visits us in ICU, wants to run tests and take some time to determine if we are chronic or acute.
Neph determines they likely won't recover, and he is taken in for an IJ chesh cath. While he is gone, the dialysis nurse comes to his ICU room to dialyze him as soon as he returns, and I fire a billion questions at her. ( She was incredibly short, and not very informative) Hubby gets dialyzed for the first time, and tells me he isn't sure how much of this he can take.
I battle with the doctors who have allowed him to be at blood sugars of 400+ for 48 hours while trying to 'gently' lower it so they don't bottom him out. I finally explain they have a few hours to get it down, or I'll take the insulin in my purse and do it myself. Doctor:  'Hospital policy dictates that only out staff can inject a patient in the hospital.' Me: 'My policy dictates that my husband does not run blood sugars this high, and I assure you, my policy will ALWAYS win.'. Blood sugars back to normal shortly thereafter.
Hubby gets dialyzed a second time, and is again unsure if he can maintain dialysis long term.
We are finally released to go home, the day before the Super Bowl. (His Packers were playing, so he really wanted to be home to see it)
We are so exhausted we stop and spend the night half way home (4 hour drive only). Close to home, I stop and try to shop, with no good grasp on how to manage phos, potassium, and such.
He spends the Super Bowl alternating between puking, sleeping, and being miserable. The next day, we are scheduled to meet with his new Neph. In the interim, I have been reading everything I can find on the internet, learning that there is such a thing as home dialysis, and trying to gather a list of questions I have for the Neph.
We see the Neph, and I like him mostly, and we talk some about home dialysis. He is VERY enthusiastic about it. He also decides hubby needs a dialysis session right now, so while he dialyzes, the Neph calls Wellbound, says 'I'm sending over the wife of the guy I talked to you about. Yeah, the one who was out of state. Great' and away I go.
Our relationship with Wellbound begins with me, alone there, and feeling incredibly overwhelmed. That visit ends with me leaving, confident, planning much more reading, and thinking 'We got this.'
I was almost desperate to get him out of the center. It was a Fresenius, and it was likely a good unit, but I hated the overall aspect of a dialysis unit period. Hated it. I also do not like not being in control of his healthcare. And, it was an hour each way.
To date, we've had a PD cath inserted, and being doing PD since May. Fistula surgery. Angiogram to check the heart due to abnormality in transplant testing (all clear), angio to check the lower extremities (all clear) and we are planning in a few months to switch to Home Hemo - Nocturnal. I'm terribly excited about it, as it seems like the very best method outside of a brand new kidney.

And now, I am off to once more make use of the boards.

Jen

[willowtreewren]

Welcome, Jen.

It sounds like you had a rather sudden introduction to dialysis. We knew for many years that it was coming our way and it was STILL a shock. 

Looking forward to getting to know you better.

Aleta

[Poppylicious]

  Jen!

[kevinswife]

 

[justjen321]

Thanks kids. I'd say I was excited to be here but, yanno, I'd kinda rather we not have the reason to be here.

All things considered, I'm excited these forums are here. How bout that.

[boswife]

  and what a great informative intro....  Yea, sorry ya had the need to find your way here, but sure glad ya did since ya needed to    We're a couple on home D with nxStage since jan 6,2011 so we were both going through some stuff this jan huh...  Were so glad we did and if ya got the determination, i think you'll be really happy with it too... all the best to you both 

[kporter85db]

Hi Jen. Sorry you have to be here, but glad you found us. Your husband is fortunate to have you managing his care.

[Desert Dancer]

Hi, Jen!  to IHD! Sorry we have to meet under these circumstances.

I like you and I like your style! I'd have done EXACTLY the same thing re: the insulin. You sound like someone who doesn't take crap off anyone and I think that bodes well for your hubby's health.

I think you're really going to love nocturnal! I went into training for it last year (on a Fresenius Baby K and its attendant RO system) and my husband and I have been doing nocturnal at home since November 11 of last year. I wouldn't have it any other way. I've got privacy, control and - most of all - my health. I've been able to discontinue almost all my meds, have virtually zero diet restrictions and I feel GREAT! It takes some work, some space and a lot of organization but it is well worth it.

I hope we see a lot more of you around here. It can get awfully lonely in nocturnal land... most people seem to choose the NXstage for home hemo so there aren't a lot of us out there (or in here).

[jbeany]

Welcome, Jen.

Yes, it's not a club we want anyone to have to join, but we welcome those who need to be here with open arms.  It's a good crew on here.  Meaning of course, we're all slightly crazy, a little odd, but there when you need us for questions, information and general moral support.

jbeany, Moderator

[justjen321]

Hi, Jen!  to IHD! Sorry we have to meet under these circumstances.

I like you and I like your style! I'd have done EXACTLY the same thing re: the insulin. You sound like someone who doesn't take crap off anyone and I think that bodes well for your hubby's health.

I think you're really going to love nocturnal! I went into training for it last year (on a Fresenius Baby K and its attendant RO system) and my husband and I have been doing nocturnal at home since November 11 of last year. I wouldn't have it any other way. I've got privacy, control and - most of all - my health. I've been able to discontinue almost all my meds, have virtually zero diet restrictions and I feel GREAT! It takes some work, some space and a lot of organization but it is well worth it.

I hope we see a lot more of you around here. It can get awfully lonely in nocturnal land... most people seem to choose the NXstage for home hemo so there aren't a lot of us out there (or in here).

@Desert Dancer - I'm actually quite excited about doing hemo at home, and more so nocturnal. From all I can read and tell, I think that he will feel a lot better.

His doctor, early on, really pushed for PD, in a way that led us to feel like it was just 'the way to go.' However, it also took me some time to get his doctor USED to me, and to get him to treat my husbands failed kidneys, versus giving me textbook answers. I adore him now. In fact, we are blessed with an incredible team, and for that, I'm really, really grateful.

As far as not taking crap, I was a very young mother years ago, and after a particularly crappy doctors appointment with my two toddlers, I snapped a bit, realized I was PAYING this doctor for a SERVICE, and decided they would never, ever talk down to me again. From that point on, healthcare for anyone I've had responsibility for has been ever so much easier. I'm an incredibly rational person, and I'm ALWAYS eager to hear as much information as I can, but I demand doctors slow down, listen to me, and work WITH me to solve a problem. My kids (and now my husband) are my ONLY patients, so I KNOW what's changed, happening, unusual, abnormal.  Bless his Wellbound team, they preach that mantra to ALL their patients, and for that, I love them. When we go to clinic once a month, his nurse listens, and his doctor now listens, and they work with me to figure out what's up. We could NOT have a better care team.

It's not always easy to 'take charge' of your healthcare, it requires a whole lot of patience, learning, and listening, but in every instance in my life, it's been REALLY worth it. The minute we left the dialysis clinic and went home, I no longer felt like ESRD was controlling our lives. And that, my friend, is an incredibly freeing feeling.

Jen

[Whamo]

Your husband is lucky to have such a good woman standing behind her man.  I'm lucky, too, my wife is always there.   

[Ang]

 

[Rerun]

Jen, I'm so glad you've found us.  Lots of info here.  Sounds like you are on the right track.  I think a transplant is your best bet and maybe a pancreas too.  You just sound too active to be tied down.  I had one that lasted 17 years so that was great.  Now I do incenter nocturnal.  I just go watch a movie or read my Nook and sleep through the rest.  You have options. 

Hang in there......

Rerun, Moderator   

[kyshiag]

All I can say is WOW and welcome.

K.