New for forum and need to vent

[quiltlover27]

HI, I am new to the forum. My husband of almost 25 years has 3rd stage kidney disease, at his last test in Nov/11 his GFR was 24%. He does not sleep well during the night, mostly waking up. He has congestive heart failure, diabetes, heart attack, stroke, triple bypass, pacemaker/defibulator, and gout.
Most nights are spent sleeping in a recliner or arm chair. During the day he does lots of moaning because he is not feeling well (he says he feels like he is going to be sick). He sleeps all the time. The nurses at the renal clinic tell me he will have good days and bad days.
It is so hard just having to sit back and watch.
We live in Manitoba, Canada, do I am not sure which programs are available.
He has changed his diet for the renal program. When the time comes, we will be doing peritonal dialysis at home.
How do you just sit back and watch, this is the worst. I have no control and cannot help in any way.
Any suggestions would be greatly appreciated. I do my best to not show my bad days.

[Jacel]

Re: New for forum and need to vent

Hi Quiltlover,

I'm relatively new here too, but I can relate. My husband was diagnosed with CRF on 11/31/11 and since then he's been able to go without any type of treatment until now. Now his symptoms have worsened and he is starting dialysis.

His day consists of sitting on the couch, playing a game on his computer that helps keep his mind off things, helping out with our three young children (when he can) and then going to bed. He rarely leaves the house unless there is a doctor's appointment or other necessity. It is very difficult to adjust to this sort of lifestyle. We've all had to adjust.

I don't have any concrete answers to your questions but I wanted to offer you my support. You are not alone.

Coming here is a way to help you get the support you need.

[wife of ddd]

Re: New for forum and need to vent

My husband as well has all of these issues. Stage 4 gfr of 20. His body hurts all the time he is always tired. We just went for Transplant evaluation this week, and that was scary as well. We just made an app. with the Vascular Surgeon to have his fistula put in to get ready for Dialyisis.. He was on Prednisone from age 5 to 12 to supress his disease. But that made his bones very brittle. He is 33 and broke his back 2 years ago. and Broke his heal in Nov. He also has Macular Degeneration from his kidney disease.. He is trying though very hard to come to terms with all of this. All of this is very hard, especially with 3 active boys Just feels good to vent, I think this forum is awesome.

[quiltlover27]

Re: New for forum and need to vent

HI, thank you so much. Just writing down how I felt helped. And reading your post, helped me to understand how things do. His kidneys have been holding at 24% for the past 4 months, we will know more the end of January when he goes back to the renal clinic.

Thanks again so much.

[Titanic1912]

Re: New for forum and need to vent

My husband as well has all of these issues. Stage 4 gfr of 20. His body hurts all the time he is always tired. We just went for Transplant evaluation this week, and that was scary as well. We just made an app. with the Vascular Surgeon to have his fistula put in to get ready for Dialyisis.. He was on Prednisone from age 5 to 12 to supress his disease. But that made his bones very brittle. He is 33 and broke his back 2 years ago. and Broke his heal in Nov. He also has Macular Degeneration from his kidney disease.. He is trying though very hard to come to terms with all of this. All of this is very hard, especially with 3 active boys Just feels good to vent, I think this forum is awesome.

I just started on this forum today and I too think its great. We need a place to vent and also to get advice from others who are going through or watching a loved on go through this everyday. My husband is 40 and has been on dialysis since 2010.

[frustrated]

Re: New for forum and need to vent

Will either a patient or a cagegiver please, please tell me if there is hearing loss? Honestly there are so many things but perhaps it's good that I can "spread out" my frustration!