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ginwolf
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« on: May 07, 2020, 04:54:23 PM »

My husband is a disabled vet and has been on dialysis for almost 3 years. It is stressing me out because he misses a lot of sessions. In March he had only two full sessions. Missed several more and when he did go, he would only stay about 1 hour of his needed 3.5 hours. He stopped taking his meds. The toxins built up and he had a psychotic episode, but he says that he didn't. He said that our house was talking to him. He became verbally and mentally abusive. I started legal separation. His adult children fed, and still do, into his psychosis. He also has PTSD. I am at my wit's end. At the end of March, I was diagnosed with Covid 19 which added to my stress.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: May 08, 2020, 07:17:56 AM »

Hi ginwof, welcome to the site


 :welcomesign;    I’m very sorry and sad to read about your and your husband’s situation. Does he get any mental or emotional support from his nephrologist, or clinic?


All the best, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Michael Murphy
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« Reply #2 on: May 08, 2020, 06:56:43 PM »

There is a old proverb you can lead a horse to water but you can’t make him drink.  In my 7 years on dialysis I have seen this several times the endings have been absolutely predicable.  Dialysis is not a perfect replacement for kidneys but if done regularly the patient can possibly have a long life.  But the stress of missed treatments does damage to a lot of organs but the one I’d worry about is the heart. However you can not fix him he needs to realize that complete compliance is the best way to continue living.  Currently you are a passenger on the titanic and the iceberg is in site.  Take care of your self, 
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SooMK
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« Reply #3 on: May 09, 2020, 12:28:56 PM »

Welcome Ginwolf. I am so sorry for your burdens. I think Michael Murphy has expressed it well. To accept what you can control and what you can't and protect yourself--what more can anyone do? Hope you recover from the virus soon so you will have the strength to continue this rocky path.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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