Scared in Minnesota

[maryanne86]

Hi there.

My name is MaryAnne and I am the daughter of an amazing woman who is currently in the ICU. I've been her primary caregiver since I was 18, (I just turned 25 Saturday) and she's now undergoing the minor surgery to insert whatever that little thing is (stent?) in her chest to start up dialysis as I speak.

I'm overwhelmed with worry and fear. I'm uneducated when it comes to dialysis, but I knew this was inevitable. She's a 18-year Diabetic that didn't take a great amount of concern to her health and wellbeing. She has CHF, is legally blind, already had one toe amputation, and is now going to start up dialysis. I'm relieved to find some place like this where I can voice my concerns, frustrations and find support. It's just my mom and I. While I have family, they're completely removed or uninvolved..

I'm glad to have found this.

 

[okarol]

  Here's a hug maryanne - you're so young to have this caregiver responsibility (my daughter is the kidney patient in our family and she is your age.) I am glad you found us and I hope you'll take advantage of all the experience and strength from other forum members.
 

okarol/admin

[paris]

Hi MaryAnne, I am so glad you found us, especially today. I'm already praying for your Mom while she begins this journey.   We understand the scared part.  My life changed when I found this site. People here truly know how you feel and will give you so much support.   I got more information here than from all my doctors (and I had good doctors).   You will make some good friends here.  And we are always here,night or day and someone will help you.    You have a lot of responsibilities and I wish I could ease your burdon.  Looking forward to reading more of your posts and getting to know you better.   Let us know how your Mom is doing.   Welcome to IHD   



paris, Moderator

[boswife]

im so glad yu found your way here.  I was terrified when this same sort of  sanario happened to hubby.  It all smooths out, and this here place will make your life with it so much better.  REALLY i think most of us would have 'lost it' without our friends here helping us every step of the way..  Bless you, and ask and read away. 

[looneytunes]

MaryAnne...first..WELCOME to IHD!     You will find lots of wonderful folks on here that own a wealth of knowledge about dialysis and are willing to share.  You will also find a good place to gain support and learn that you are not alone in this. 

Secondly, bless you for being there for your mom.  It's not an easy thing to do and she is so lucky to have a daughter such as you.  I will keep both you and you mother in my prayers.   

[galvo]

G'day, MaryAnne, and  .

[RichardMEL]

G'day MaryAnne and welcome to IHD!!

First of all, happy birthday for last Saturday!! Aaaahhh 25... I remember those years... no wait, no I don't I just wish!!  Damn I'm getting old...

Anywhoo here's a hug from me for you!  (aaaah now I know what it's like to feel 25 again.... just kidding!)

It's great you have found your way here. Well not great given the circumstances, but hopefully we can help you help your mom with dialysis as she transitions into this level of support. btw it would be a catheter(permacath?) in her chest rather than a stent. At some point they may/should investigate placing a fistula or graft access on her arm for doing dialysis with needles which is a much better access method.

It must be dificult watching someone you love so much have had such little regard for their own health over the years despite the mounting consequences - I hope this is a bit of a wake up call and she can take more interest in her treatments and doing stuff like looking after her diabetes more, following the renal diet and any other restrictions (eg: fluids) she may need to follow. Hopefully as you become more au fait with the dialysis routine and what's required you can help with this.

It is a big task you've taken on, looking after her, but a wonderfully supportive one. We admire your efforts and concern.

Again welcome, and feel free to ask anything here. I am sure our members can help with their experiences and suggestions! In the meantime be sure to ask as many questions as you need from your mom's treatment team so that you feel comfortable with what is happening and why.

 

RichardMEL, Moderator

[peleroja]

Hi, MaryAnne, and welcome to the group.  I think it's great that you want to get more information for your mom.  There's a ton of good information and friends here.  Glad you found us!

[lola]

  and BIG my husband Otto and I are also from Mn.............

[maryanne86]

Thank you for such kind words.  As you all know, they can mean so much when times are scary and rough. They've postponed putting in the catheter (thank you RichardMEL for the proper wording) until today to allow some more healing time between her surgery to debris her foot (that took place Wednesday) to today where she had the catheter put in at 9:30a. It appears to have gone smoothly with the insertion of that, and she just started up the actual dialysis a half hour ago.

She's been very loopy lately and incredibly fatigued and they've been worried about septicemia, too. I don't know the wonders that dialysis can do, but hopefully this does give her that extra boost at getting better. It's been a very long week fraught with more worry than I can comprehend.

Any advice on how to try and get some sleep? I've been struck with severe insomnia since this started, and I'm a full time biochem student trying to fight to stay on top of class, while keeping my mother as the main priority.

Also, is it possible for the kidneys to kind of... snap out of this? Im sorry I don't have better wording or a handle on the medical terms, but this all started last Wednesday with that nasty Norovirus. Prior to that she was still having regular output with functioning kidneys, albeit not necessarily at a functioning level to avoid concern. She got over the virus within 48 hours, but started something new with severe body pains (joints) and then became very loopy, with her oxygen going to 79, etc. Monday she was put in the ICU with total kidney failure... it happened so fast. Could something like dialysis for a certain amount of time, reboot it to a functioning level where she doesn't need this for the rest of her life?

So many questions... 

 

[Rerun]

Hello Maryanne and welcome to IHD.  There is acute kidney failure where they do return to function but without dialysis the person would likely die before they had a chance to return.  So, let them do dialyssi to take some stress off her system and maybe they will have a chance to come back.  Let's hope for that.  If not there is still long term dialysis.....  One day at a time.

Rerun, Moderator       

[RichardMEL]

Yes MaryAnne, in situations where acute kidney failure are caused by things like extreme dehydration the kidneys can recover - sometimes with the aid of dialysis - sometimes without. However I wouldn't count on it for your mom (sorry). It could happen of course, but it sounds like they don't expect it to.

One positive is that I am sure with a few D sessions it should improve your mom's "loopy" state as toxins are removed from her system, and the fatigue also (of course she's also going through a lot physically and emotionally in the hospital so I'm sure it's no wonder she's extra tired even without kidney issues/dialysis).

As for you sleeping. I think you should get a  script for some sleeping pills or something - just to help in the short term. You're trying to juggle a few important things and it's obviously so difficult for you - because you want your study to work out, you want your mom to be OK and you want to be there for her. One thing seems certain if you keep going like this you'll fall in a heap and will be of no use to anyone, so I would see the GPO and explain the situation and ask for something. Either that or try meditation and calming drinks like herbal tea etc, but I suspect that sort of thing won't be enough to help with all that is on your mind and maybe drug therapy may be all that can help at this poiint.

[monrein]

  to IHD.

[carol1987]

  welcome Maryanne... you have so much on your plate    glad you found IHD it is a wonderful place for support...

[carol1987]

Hi Maryanne,

I'm a nephrologist. It's strange for a nephrologist to be on this site--I'm sure I'm the only one. I get to take the heat that everybody here feels towards nephrologists. But I truly feel like my place is here, and not with my professional brethren. I think dialysis is a living hell, and my goal is to make the world dialysis-free by 2020. I can prevent 90% of dialysis. If everybody knew this, there'd be enough cadaver kidneys left for all the remaining kidney patients. Living donors wouldn't be necessary. (see http://tinyurl.com/healthcrime for details).

I'm writing now because my company was granted a patent for treating acute kidney failure without dialysis. I'd be happy to get involved iwth your person's care. Just say the word.

Best regards, and best of luck,
Dave Moskowitz MD FACP
CEO, GenoMed (www.genomed.com)

Dr. Moscowitz... I don't know what your motives are  but you are relatively new here  and I LOVE MY NEPHROLOGIST!!!
Any heat I have seen you get on IHD was from people questioning your motives here and your lack of  sharing detailed information!!

[willowtreewren]

Hi, Maryanne.

I want to assure you that folks DO recover from acute kidney failure. My father has gone through AKF four times and has recovered fully each time. I'm hoping that your mom does the same.

 

Aleta