Newbie training 4 home hemo fistula-1 year w/new&old fistula & old carotid cath

[dldt]

Dee, Newbie, history of PKD in Family (brother-had transplant, mother going to have transplant, niece in clinical trials) what do I do?  Did not know until 2011 what was going on. Hubby had fistula 4-11 started dialysis 9-11 below elbow, it quit working, veins too small; new fistula at wrist in 2011; now trying for home hemo, levels I try to keep good-had some ups and downs, but still within range, training going well and I am catching on well, but, hubby is vomitting, his kidneys are extremely large and are hurting nads, any help would be greatly appreciated.

[Sydnee]

Hi Dee,

So your Hubby has PKD? Wish I could help with advise on kidney pain I only started feeling it occasionally a few weeks ages even though I have known about my PKD for 24 years now.

Has your hubby been evaluated for transplant?
So great to can help him with dialysis at home. Hopefully things will start getting better for the two of you. Is it just you two at home? (any animals or kids)

 

[lmunchkin]

Welcome Dee from another spouse who is helping with Dialysis on her husband.  I can't help with the Kidney pain, as my husband did not have any pain in that area.  He lost his function due to Diabeties & High BP.  No warning what so ever.  Was hit with a load of bricks!

Been dialysising him at home for almost 9 years, with the exception of In-center almost a year.  Im so glad you are doing home hemo?  Are you Nxstage or Baby K?  Both are offered at our clinic.  Baby K was not offered when we trained for NxStage, but it is offered now.

I hope all goes well for you both.  You may not think so now, but it can get better.  Just stick with it and make D work for you and not the other way around.  Ask any questions you want.  We are here for you and We understand!

Again welcome & God Bless,
lmunchkin

[Angiepkd]

Hi Dee! I have PKD and also have some serious bouts of pain. I find that a heating pad can help.  My pain tends to come and go, sometimes weeks will pass with nothing and then it will hit me like a ton of bricks. My theory on the pain is that it is caused by cysts rupturing.  When it gets really bad, I take pain meds so I can sleep.  Sorry not to have a better answer. My kidneys have hurt less since removing some of my excess fluid, also.  I think I have taken about 15 pounds off since starting D.  Hope this helps your hubby!  Care partners have a tough job, but we patients do appreciate them!  I love doing home hemo so far (just finishing my first full week alone).  Good luck!

[Poppylicious]

  Dee! Sorry I can't help with any of your questions, but wanted to say 'Hi'!

[dldt]

To all that responded thank you so much!!

Good news, it took a month and a half for training and then we were home, we had a few hiccups when we got home, like power outage for seven hours, we were at the last half hour of dio, had to do emergency rinse back in the dark, not fun, hubby had to hold flashlight in mouth while trying to disconnect so I could connect to machine, all went well, thank GOD. The end of July he had both kidneys removed 8 1/2 hours, and 30 lbs lighter. Hand assisted laproscopic small sutures, now we are experiencing no appetite, stomach cramps and hypo-postural alot, and chest pain, we removed the surgical tape on the 5th of this month and that is when the stomach pains started, met with neph doc today and his potass and phos are at high levels, they were good prior, now I'm just so tired and don't know what to do, I feel as if I am failing my husband, am I at the beginning of burn out?