I Need Support

[jg]

I am a middle aged male living on my own in Western Canada. Originally diagnosed with kidney disease in 1990. Was  monitored for years and lived a very healthy lifestyle but never felt well. Suddenly in June 2006 ended up in emergency with end stage kidney failure. Was on in center hemo for 6 months with undercollarbone catheter. Did poorly. Switched to pd. Okay for a year. Since then Peritonitis   and several other problems.  Kidney doctor says transplant wait is estimated another 1 -2 years. He is strongly recommending I change to home nocturnal  hemo because my creatine and urea levels are "as high as a kidney patient NOT on dialysis".  I would need to be assessed, have a fistula, and then training.  My quality of life now is poor. He says is would make a world of difference. My fear level is high but I am committed to having a better life.  Need support and feedback.  I  also have a Skype account  and would like to talk to others.

[okarol]

  Hi jg,
My daughter may choose to do home hemo (her transplanted kidney is declining so she needs to think about her options.) We have a training center nearby and I would be her partner (which is going to be tough since I get queasy at the sight of needles.)  I know you'll hear from other members whose lives have improved being on noctunal hemo and they can give you good info and support.
Best wishes and welcome! 

okarol/admin

[MooseMom]

I have read many posts from people who say their lives have been transformed once they started nocturnal hemo.

Fear can be paralyzing.  It adds to your already poor quality of life.  I'm well acquainted with fear; it makes me feel physically worse than my kidney disease does.

I'm sure you've see the IHD forum devoted to nocturnal hemo; there are many people there who can give you plenty of informed support.

[galvo]

G'day jg and . I'm on in-centre HD, so I can't comment on home dialysis. But there are plenty of people here who can. You'll find this a caring , sharing community. So don't hesitate to post regularly and ask all the questions you want to. BTW, I was as scared as, before I went on Dialysis, but, boy, I feel much better since I started. Good luck on your journey.

[Jean]

  and read, read, read. Many people say they feel so much better on D. If you don't then you need to change your type of D I would think.[

[Yvonne]

  Jg from the  I am sure you will find all your questions answered by all these great people on this site and then not be scared of all your treatment. I was scared of all the things that were going on with my husband, but this site has helped me so much.

[peleroja]

Welcome to the group.  I'm sorry PD didn't work out for you.  I love it.  Hope you find all the answers you're looking for.

[looneytunes]

Hi jg...glad to see you joined our group.  Sorry you have had such a hard time so far.  My husband also did not do well on hemo in-center and was on PD for almost 2 years.  We are now back in-center but headed for training to do home hemo with the NxStage system.  I hope you get lots of support and info from the folks on this site and we get to know you a little better in the process. 

Welcome!   

[carla13]

 
xx
carla
xx

[monrein]

   to IHD.  I live in Toronto and have been dealing with ESRD for a very long time now.  I'm on my second transplant.  Nocturnal is a great form of dialysis as it should help you to feel much, much better and also help to protect your body from longer term damage that can occur if we are under-dialyzed.  It's also good because having control over your own treatment is a wonderful feeling and doing it at home can give you more flexibility.  It may seem daunting at first, but hopefully you'll eventually feel better physically and it will all seem worthwhile.

[Lisa]

    You will feel welcome and alot of questions answered here, of this I am sure, I just joined last week...

[Romona]

 

[jg]

Thank you to the " Committee" for your support.
To emphasize I need to change from pd to Hemo, I started draining out blood last weekend. I called the kidney unit at the local hospital late Friday night.
The nurse said to monitor the situation and go directly to emergency if 1. there was lots of blood or 2. I was dizzy, or 3. lots of pain. None of those happened and after draining
a big gob of red tinged fibrin, the bleeding stopped. I have an appointment with a surgeon March 10, 2010 about getting a fistula. The hemo nurse said they don't use NXStage
in Canada but use Bellco. Does anyone know about these machines?

jg

[monrein]

I think the main difference between Nxstage and the machines they use in Canada for home hemo is size and portability.  Nxstage is, ours aren't.  You will likely be required to have a plumber make some modifications to the plumbing (not a big deal really) and the storage space needed for supplies can be annoying but all in all home hemo will get you better clearances, more control and greater flexibility.

[paris]

    jg.   As you can already tell, you will find lots of support and answers here.  There are so many who have gone through the same situation and they will be a great help to you.   Glad you found this site.  We are looking forward to more of your posts.  We also have a "chat room".  Many of us go there in the evenings and it is a good way to get to know others.   Welcome to IHD.   




paris, Moderator

[jennyc]

Hi JG,

You'll get heaps of support here.
Jenny

[jg]

Thank you once again to everyone who responded.
My update is I am going to the hospital on Thursday March 25, 2010 to have a fistula made.
In the meantime, I stay on pd and rest a lot.
 
  again,
jg

[traceyls]

My thoughts will be with you on that day.

[Mimi]

Welcome JG, make yourself at home.  I am not on D yet but NXStage
nocturnal is my choice when I do.  Good luck to you.

[natnnnat]

Hi JG, don't know if its still timely to reply here but in terms of being single and managing NxStage, it occurs to me you might get something out of Bill Peckham's biographical writing, e.g.
http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/how-dialysis-fits-into-my-daily-routine.html
http://www.billpeckham.com/from_the_sharp_end_of_the/biography-project.html
he is also single and "on" NxStage.

So was Meinuk for awhile, her training diary is here.  Just thinking of people who have learned NxStage without a partner.
http://ihatedialysis.com/forum/index.php?topic=5229.0
I also know of other single people doing home nocturnal.

For completeness, Epoman's training diary is here:
http://ihatedialysis.com/forum/index.php?topic=813.0
Although he was not single, its important to know your history :-). 

hope this helps (I wonder if you will be inspired to keep a training diary too...)
n

[Quickfeet]