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Author Topic: how bad is it?  (Read 156 times)
Notadork
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« on: January 14, 2021, 02:48:49 PM »

my mom had goodpasture's about a year and a half ago, been on dialysis a year last october. never felt like anybody explained very well what any of this was gonna be like. it has seemed like every thing that was supposed to be "better " actually turned out being kinda worse and there's no going back mostly.... so right now she's on the pd cycler at home at night with dry days. her appetite is much better now, as well as the nausea. she still doesn't seem like she wants to get out of bed to do anything, but I have a feeling that's more emotional than physical. she doesn't have to take phosphorus binders... in fact she eats a lot of phosphorus, (pancake mix, ice cream,  lunch meats, etc) doesn't watch her salt intakes, takes a potassium suplement but I don't think it really makes a difference...  and also doesn't have to monitor her fluid intake, except that I tell her to drink extra because she has been dehydrated by dialysis before.. she.doesn't get edema and she gets really really sick if we try to use a higher solute diasylate. sometimes she's a little anemic and needs an iron shot, rarely micera anymore... just a minor amounts of drain pain on the first and last drain but that can't be helped much.... her last adequacy was over 4.... and she has a high urine output.

 so... I have two questions for u guys.... we r just starting the transplant introduction appointments, my aunt is gonna donate if it all goes thru.... what I'm wondering is if transplant might actually end up being worse than what she's doing now? presnizone is aweful, and a compromised immune system seems pretty cappy and I've also read about groin pain that can go along with the transplant also, not to mention just recovering from such a major surgery, oh and I remember her not enjoying biopsies either which I think they do often to check for rejection.
my next question is about whether she needs dialysis at all.... I know that with AKI repaired kidney function is much more likely to occur even after a year of dialysis it's possible. I think the dialysis place is much more focused on maintaining people on dialysis and haven't paid as much attention to the situation because my mom's is such a rare one. Ive heard that creatnin levels can be miscalculated especially when people are sick and losing muscle mass and weight so rapidly. I read a lot online but there isn't that much on dialysis overdose, like what are symptoms of too much dialysis? low blood pressure? dehydration....? yep... but... I lack very much on the self confidence section of life and have trouble trying to ask the dismissive nurses, let alone the nephrologist.  so, maybe I'm stupid, but that's a shitty reason for my mom to be going thru this stuff cuz I'm too afraid to ask a couple questions!?  and I know it's not a fun situation for anyone, but from what I can tell about dialysis in general, and how it's been for her in the begining... what she's got going on right now doesn't really seem that bad... yea, she's tethered for 8 hrs while she's sleeping anyways... not that she gets out of bed during the day anyhow.... I'm just worried she's waiting for the transplant like everything is gonna be all better after that.. but what if it's actually worse? I guess she could always go back on dialysis!
wow! ok, thanks guys ! that actually kinda helps a little already!
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MooseMom
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« Reply #1 on: January 14, 2021, 04:04:13 PM »

I can only relate my own experiences with transplant, which I am happy to do.  But, mind you, other people will have their own story to tell.

I am extraordinarily grateful for my transplant and for the fact that I have had no complications.  I did not have a living donor.  I got the call late on a Saturday night, and I was transplanted Sunday morning and was home by Wednesday afternoon.  My surgery was textbook.  I've had more problems following certain day surgeries than with my transplant operation.  I was up and about quite quickly.

I was started on 30mg prednisone and was down to 5mg within a month.  The only ongoing problem I had with it is that it has screwed up my inner thermometer in that I run really hot.  I love the winter!

I know I have a compromised immune system, but I have labs done every other month with a full wbc, and all of my "cytes" have been within normal range.  However, a few months after my transplant, I had a pretty severe case of neutropenia that landed me in the hospital for a few days while they figured out what exactly was going on.  I was treated with two shots of Neupogen, and that was that.  I caught a bad cold two years ago that turned into bronchitis, mainly because I got really busy with some projects and didn't take care of myself, and this past summer I got some kind of really awful stomach flu, but that's been it.

It is entirely normal to wonder if transplant will just make life worse because it really is a whole different kettle of those proverbial fish.  There are different things to worry about.  I got a transplant just months before I probably would have had to go on dialysis, so I can't really speak to that, but my mother was on dialysis for the last 5 years of her life, and her struggles made me really paranoid and frightened of dialysis.  So, for me personally, a kidney transplant has saved my life and my sanity.  I just never questioned it.

Oh, and I've never had a biopsy on my transplanted kidney.  My clinic does not do the one year post tx thing!  They would do a biopsy only if there were signs of rejection or possibly some other problem.

I am hoping other members will come by and address your questions.  At least, I am sure that we can help you draw up a list of questions that are not so easily dismissed by your mom's dialysis team, and I would like to know the answers myself!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Notadork
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« Reply #2 on: January 17, 2021, 02:09:35 AM »

Thank you for your response.. I'm guessing u must be in the uk based on the fact u skipped dialysis and got a transplant.... either way, I am very appreciative for the insight you have provided me. It's so hard to find real life perspectives sometimes and I feel like I'm already on my way to a well rounded and informed opinion on all this! Thank you again so much for taking the time for me!!
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MooseMom
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« Reply #3 on: January 17, 2021, 08:25:52 AM »

Thank you for your response.. I'm guessing u must be in the uk based on the fact u skipped dialysis and got a transplant.... either way, I am very appreciative for the insight you have provided me. It's so hard to find real life perspectives sometimes and I feel like I'm already on my way to a well rounded and informed opinion on all this! Thank you again so much for taking the time for me!!

Oh, you are most welcome!  I'm sure some other members will come along and answer your questions, too!  If you mother wants to ask anything specific, please relay those queries to us!  We'll do our best.

No, actually I'm in Chicagoland.  I had been on the waitlist at Rush University for almost two years.  I had a working fistula and was expecting to go on dialysis at any time.  My neph suggested I list also at UW-Madison, so I went up there to speak with them.  I'd just completed my second round of pre-transplant testing, so I took my results to Madison, and they put me on their list.  I got "the call" just a week later.  It was pure luck.  There is no rule here in the US that stipulates one must be on dialysis to "qualify" for a pre-emptive transplant.  I waited my turn just like everyone else.  The bit of luck I had was in where I live.

I'd like to say one more thing about the immunosuppressant drugs.  They are the one vital thing that makes this all work.  Having a kidney transplant sounds dramatic, and I guess it is, but the real work comes afterwards.  This sort of surgery has been done for decades and is really quite common in the grand scheme of things.  But keeping that kidney going is almost entirely up to the recipient.  At first I felt overwhelmed from the drug regimen.  Consistency is the key.  Before you know it, it becomes just another thing to do each day.  My transplant coordinator often tells me that she has too many patients who just can't be bothered with the pills, or they just take them when they remember.  Taking your pills correctly and consistency is the one thing over which you have control, and this is of great comfort to me.

Please let us know how your mother is doing and how things are progressing.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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