ktgrok Posted July 8, 2018 Share Posted July 8, 2018 I’ve spoken of him before. He is back in the hospital, in total kidney failure and in heart failure. And that they believe pancreatitis as well, caused by the kidney failure. He has already had one kidney transplant. They will not put them back on the transplant list for a kidney until they work out the heart issues. He was diagnosed with idiopathic cardiomyopathy a very long time ago in his 20s. But now his sister has had cardio myopathy as well, so there is a question as to what is causing it. They also need to rule out any normal arterial changes just from being in his 40s now.My son is too young to lose his father. Please pray they figure out how best to help my ex and that he is released from the hospital with a plan.And pray for my son as well, Michael, that he handles all of this as best as can be expected. He has his own issues with depression and anxiety. 2 1 23 Quote Link to comment Share on other sites More sharing options...
Selkie Posted July 8, 2018 Share Posted July 8, 2018 Oh no, I'm so sorry to hear that. I hope he'll be okay. Quote Link to comment Share on other sites More sharing options...
Annie G Posted July 8, 2018 Share Posted July 8, 2018 I’m so sorry! Quote Link to comment Share on other sites More sharing options...
Kassia Posted July 8, 2018 Share Posted July 8, 2018 How awful! I am so very sorry. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted July 8, 2018 Share Posted July 8, 2018 I will say a prayer for him and your son. Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted July 8, 2018 Share Posted July 8, 2018 Hugs to you all. Quote Link to comment Share on other sites More sharing options...
EMS83 Posted July 8, 2018 Share Posted July 8, 2018 Praying! Quote Link to comment Share on other sites More sharing options...
umsami Posted July 8, 2018 Share Posted July 8, 2018 Praying! Quote Link to comment Share on other sites More sharing options...
Guest Posted July 8, 2018 Share Posted July 8, 2018 So sorry to hear this. Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted July 8, 2018 Share Posted July 8, 2018 I am so sorry to hear this. I am praying for him and hope the doctors can come up with a plan to let him lead a normal life. Sending some good thoughts to your son too. Quote Link to comment Share on other sites More sharing options...
Innisfree Posted July 8, 2018 Share Posted July 8, 2018 I'm so sorry. I'll be thinking of all of you. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted July 8, 2018 Share Posted July 8, 2018 Praying. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 8, 2018 Share Posted July 8, 2018 Praying here, Katie. I’m very sorry to hear this news. Quote Link to comment Share on other sites More sharing options...
Katy Posted July 9, 2018 Share Posted July 9, 2018 Praying Quote Link to comment Share on other sites More sharing options...
Kareni Posted July 9, 2018 Share Posted July 9, 2018 Sending positive thoughts for him and for your son, Ktgrok. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
scholastica Posted July 9, 2018 Share Posted July 9, 2018 Praying! Quote Link to comment Share on other sites More sharing options...
Splash1 Posted July 9, 2018 Share Posted July 9, 2018 I'm so sorry. I will pray for you all. Just an idea, my daughter ended up in hospital with kidney failure, pancreatitis, as well as other organs beginning to fail and she was diagnosed with atypical hemolytic uremic syndrome. It is ultra rare so took a bit to get diagnosed but now on her medication she's doing well. https://www.ahus.org/diagnosis/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5056489/ Quote Link to comment Share on other sites More sharing options...
ktgrok Posted July 9, 2018 Author Share Posted July 9, 2018 42 minutes ago, Splash1 said: I'm so sorry. I will pray for you all. Just an idea, my daughter ended up in hospital with kidney failure, pancreatitis, as well as other organs beginning to fail and she was diagnosed with atypical hemolytic uremic syndrome. It is ultra rare so took a bit to get diagnosed but now on her medication she's doing well. https://www.ahus.org/diagnosis/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5056489/ I'll pass that on, but he was diagnosed with IGA Nephropathy when he was a teenager, via biopsy. Then in his twenties developed cardiomyopathy suddenly, and almost needed a transplant. The heart got better, but when his kidneys failed a few years ago the heart got worse again. Then he had a kidney transplant. But that one has been failing for a while, and here we are again. Complicating things is that his sister had cardiomyopathy and heart failure about a year or so ago, totally out of the blue, and had a heart transplant. And yet somehow the cardiologist my ex has been seeing doesn't think that is linked. I don't think they've done any genetic testing. It's weird. I did take my DS to a cardiologist for screening, and everything was good at that time (echo, EKG, etc). Just in case. Quote Link to comment Share on other sites More sharing options...
readinmom Posted July 9, 2018 Share Posted July 9, 2018 Praying... Quote Link to comment Share on other sites More sharing options...
ktgrok Posted July 9, 2018 Author Share Posted July 9, 2018 1 hour ago, Ktgrok said: I'll pass that on, but he was diagnosed with IGA Nephropathy when he was a teenager, via biopsy. Then in his twenties developed cardiomyopathy suddenly, and almost needed a transplant. The heart got better, but when his kidneys failed a few years ago the heart got worse again. Then he had a kidney transplant. But that one has been failing for a while, and here we are again. Complicating things is that his sister had cardiomyopathy and heart failure about a year or so ago, totally out of the blue, and had a heart transplant. And yet somehow the cardiologist my ex has been seeing doesn't think that is linked. I don't think they've done any genetic testing. It's weird. I did take my DS to a cardiologist for screening, and everything was good at that time (echo, EKG, etc). Just in case. Read more on it, and printed out a bunch of PDFs of studies and info for my son to take to his dad when he visits today. Not sure they have tested for this at all, but it DOES fit a lot of stuff with him. Honestly, I REALLY wish they would get a genetics team working with him. He has so much going on, plus the sister, and I cannot believe there is not some genetic syndrome or something more at play here. He has a history of GI issues that SCREAMED celiac but isn't (I think they did biopsies at one point), skin issues, chronic headaches that are not quite typical migraines, pectus-excavatum severe enough to require surgery as a child but that reoccurred, keloid scarring, cardiomyopathy, and kidney failure diagnosed as IGA Nephropathy but that progressed much more seriously than most cases. Plus depression/anxiety. Quote Link to comment Share on other sites More sharing options...
Kimberly in IN Posted July 9, 2018 Share Posted July 9, 2018 Praying. Quote Link to comment Share on other sites More sharing options...
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