June 2008 Weddings
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*naylon* kidney related for your DH

FIL is switching from peritoneal dialysis to hemodialysis next week.  He's getting admitted to the hospital on Monday to get the valve or whatever he needs put in.  He'll be there for a few days to do some other tests as well because of his other health issues.

Anyway, this is motivated by the fact that the peritoneal just isn't removing enough anymore... not filtering enough I guess.  They increased the amount of fluid he was using, then they increased the amount of time he was hooked up (actually he started doing a manual transfer after dinner, then hooking up to the machine while he sleeps).  Did that for about 4-6 weeks and just continued to feel worse instead of better.

DH is all worked up tonight about it, and actually said to me "I don't know if he'll be around in March to meet my child."  UGH.  Tears, just typing that, no matter what I think of the man.

Does your DH have any insight into what this means for FILs prognosis?  We don't go to the doctor appts. so we don't really get the whole truth/anything first hand.

Until now, it was always my understanding that his lungs would be what kills him (he has pulminary fibrosis and is on oxygen full time)... like if he got pneumonia or something.  But now I'm not sure...

Anyway-just thought your DH may know a little more than what we are getting from MIL.  No hurry or anything.  I'm going to soothe him with homemade kettle corn tonight and try to get his mind off of it.

imageimage

Re: *naylon* kidney related for your DH

  • FWIW, DH's bff was on hemodialysis for years while awaiting his kidney transplant. He actually had the port/valve thing removed earlier this year. GL to your FIL and thoughts of peace and comfort for your DH.
  • I just asked him.  He said that net-net moving from PD to HD isn't in-and-of-itself a bad prognosis thing (people who are healthier than your FIL can kind of even choose to go back and forth throughout the course of their lives).  Jim said that FIL may actually feel *better* since HD should offer him cleaner blood.  The downside is that it'll be a big lifestyle change for him because the PD he was able to do at home on his time, he'll now have to go 3x/week someplace out of the house to get HD.

    Jim also said that he's happy to speak to you or Ryan if you want.  Do you still have my number?  He's happy to answer questions or whatever.  Let me know.

  • imageTaylorNShannon:
    FWIW, DH's bff was on hemodialysis for years while awaiting his kidney transplant. He actually had the port/valve thing removed earlier this year. GL to your FIL and thoughts of peace and comfort for your DH.

     I hope he's doing well now!   FIL has never been a transplant candidate because he would need double lung and kidney, and his overall health is too poor.

    imageimage
  • imagenaylon511:

    I just asked him.  He said that net-net moving from PD to HD isn't in-and-of-itself a bad prognosis thing (people who are healthier than your FIL can kind of even choose to go back and forth throughout the course of their lives).  Jim said that FIL may actually feel *better* since HD should offer him cleaner blood.  The downside is that it'll be a big lifestyle change for him because the PD he was able to do at home on his time, he'll now have to go 3x/week someplace out of the house to get HD.

    Jim also said that he's happy to speak to you or Ryan if you want.  Do you still have my number?  He's happy to answer questions or whatever.  Let me know.

    I have your #.  Told Ryan and he said he would let me know if he has any questions (because MIL doesn't really give us many answers!).

    I'm concerned that the lifestyle issue will be the bigger issue.  He cannot walk from the handicapped spot at Walmart to the front door without sitting inside on the bench for 10 minutes when he gets there.  He only gets up to go to the bathroom, and only leaves the house for the doctor.  I think the travel is going to be a much bigger deal.  They live 30+ minutes from the doctor/hospital, so it's a BIG trip 3x week. 

    imageimage
  • T&P for your FIL and family.

    FWIW, I had a student (adult student) who has had 2 kidney transplants that failed. She does HD 4x a week (sleeps at the center while they do the HD). She has a a relatively normal life for several years this way.

  • People can live for years on HemoDialysis.  

    How often is he going to go into a dialysis clinic? From the research I have done and have heard - just to prepare you - he will feel horrible for a day, go in for a treatment, feel horrible that day, then the next day feel great, then start to dwindle in ickyness till the next day. 

    Where does he live (for clinical studies)?

    What I am working on, and hope to get it out so he can use it!

    http://www.baxter.com/press_room/press_releases/2010/11_18_10_home_hd.html 

  • imagemorrigan08:

    People can live for years on HemoDialysis.  

    How often is he going to go into a dialysis clinic? From the research I have done and have heard - just to prepare you - he will feel horrible for a day, go in for a treatment, feel horrible that day, then the next day feel great, then start to dwindle in ickyness till the next day. 

    Where does he live (for clinical studies)?

    What I am working on, and hope to get it out so he can use it!

    http://www.baxter.com/press_room/press_releases/2010/11_18_10_home_hd.html 

    3x week for 4 hours at a time.

    I know they can sustain his kidneys this way, but he has a lot of other health issues and I think the fact that the peritoneal is no longer working well enough is a sign of body failure in other ways (his lungs don't work, last year he had a psuedo-tumor on his brain that left him with stroke-like symptoms, etc).  So I think going to a clinic is going to be what takes its toll, if that makes sense.

     

    He lives in SW Virginia.

    imageimage
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