I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: GrammasGirl on July 05, 2010, 05:44:47 AM
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Hi there. My name is Melissa and I am here on behalf of my Gramma.
Gramma's name is Mary, she turned 80 2 weeks ago while in the hospital.
In mid May, Gramma went into the hospital with 2 functioning kidneys ( one slightly weakened) for surgery to bypass an abdominal aortic aneurysm. There were complication during the surgery and several follow up checks- all of which she had to drink that dye for the digital images. We are pretty sure that is what shot her kidneys all to hell.
Still not knowing what was happening to her, the doctors tried throwing a billion medications, procedures and tests at her. Within 2 days time, she gained 34 pounds of water weight. It was 2 full weeks before they realized they had failed kidneys in Gramma, and she began dialysis.
I believe we are on week 5 of dialysis now- at first in ICU she was dialized ( is that a word?) daily, then to every other day. She is on Tues/Thurs/Sat schedule now and is on the machine aprox 3-4 hours each time.
Gramma has continued to sprial downhill due to a tremendous unbearable nausea that has taken her over.
Zofran caused terrible reactions on her, so now she takes phenergan- double dose, every 6 hours. Gramma says it does not help her at all. I sit in the hospital room with her daily and I see that the phen. makes her nod off and mumble like a heroine addict, but other than being asleep, it seems to not have any effect at all.
Gramma is not eating b/c of the nausea, in turn not healing b/c of lack of protein, in turn feeling sicker for taking meds on empty stomach, in turn making her too nauseaous to eat.
We tried nepro and for awhiloe it worked, but now she cannot even drink that without gagging or waves of nausea.
She cannot have the IV nutirnets b/c of dialysis ( comes in HUGE bag of fluids) and we have not discussed feeding tube yet.
At 80, we understand if she is ready to give up and we ( the family) support any decison to stop diaylsis an therefore herself. HOWEVER, she insists on plugging forward- which we also support- but she is suffering so much and so miserable and I have exhausted all efforts I know to do.
We've had her medications cut to the bear essentials to minimize chemical residuals ( Gramma is EXTREMELY sensitive to EVERYTHING- medication, materials, situations), we've tried every drink known to us- even if it was not on the approved diet list- just to get something in her...we've tried every food- I mean EVERY food! Nothing is anything she can eat enough of to matter...one bite here, one sip there...broth, creme of wheat...ginger ale.
We've tried ginger candies, peppermint...really- EVERYTHING!
I have hired a massage therapist to do some reflexology in hopes of releasing the nausea- she comes Weds eve.
We are at a total loss...I don't know how to help Gramma any further...I simply CANNOT allow her to suffer so....what else is there to do to help?
Please feel free to be blunt and straightforward in your replies...if I take offense I will try to ask to clarify, otherwise we've no time for diplomacy....Gramma has suffered too long and it needs to stop- what can we do to help here PLEASE!
Thank you so much for having this board available and for your responses and time.
I hope the best for all of you!
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So sorry to hear of your Grams suffering. She can get IV nutrients (TPN) they adjust the fluids content. She would have to adjust the oral fluid intake as sips or ice chips. My husband has been on TPN for 9 weeks & has been dializing for 3 weeks. Welcome to IHD, read, read & read. Best wishes
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Welcome to the group on behalf of your gramma. I've never had nausea due to dialysis, so I'm not much help there. The only thing that comes to mind is a smoothie made of milk and protein powder. I use an excellent protein powder made of egg whites made by Jay Robb. It comes in vanilla, strawberry and chocolate. Since nausea stems from the stomach, what about papaya pills. The papain enzyme is suppose to settle the stomach. That's as much as I can come up with. Hope someone else has some good advice.
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thank you for your reply.
She had IV nutrients early on and her lungs and heart became surrounded by fluid making it uber difficult for her to breath. That situation put her in a cardiac crisis by way of a nasty panic attack that elevated her heart rate to a ridiculous level. That happened 3 times oover several weeks.
The Bi-Pap machine ( blows cool air into nose and mouth by force) brought her out of the last one so I arranged ot leave one in her room for now to keep her from having to transfer to CCU and loose her rehab bed and all the chaos that comes with moving form place to place.
However, I mentioned the Zofran reaction in my first post...looking back now, we feel that the side effect of Zofran causing breathing difficulties may have been the culprit behind the panic attack/breathing things, SO- maybe it wasn't the IV fluids after all?
The situation is so precarious that any progress we make it is very hard to change things that may result in loss of our foothold- does that make sense?
I am hoping to meet with the Palliative Care team here at the hospital tomorrow to see if they think requesting her to take ONE bite of something each hour would be a good thing or torture- the idea being to get her stomach coated for the oral meds and stem any nausea resulting from that.
Aside from Zofran and Phenrgan, what do you all use to help with the nausea?
Does the nausea ever stop or slow? when and how? Can we help or can gramma do anything different to help with slowing the dialysis nausea?
Gosh- I hope my ramblings make sense....this is all so difficult to watch gramma suffer so much....I'd wish it away for her if I could.
Thank you again for your replies.
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Thank you for the idea of papya enzyme...I will look for a powder form that we might add to a nepro or protein shake.
We have tried all the shakes...gramma says they are to thick or too thin, too sweet or too sour, too chunky or not enough body to them...nothing pleases her- I can't sort out if it is her being stubborn and unpleasable as she always has been in the 40 yrs I have known her or if it is the nausea and cascade of issues weighing on her that does that.
I thank you for the idea and maybe we need to start the offerings over again...we have 13 types of powders and drink right her in the cupboard in her room, I have 3 more at my house and we have 2 we took back to her house- so we have plenty of choices! ::)
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Hate to hear about the nausea - it's the thing I hate the most. The only other thing I can think of is if she is still in the hospital maybe they can dialyzes her more days a week for shorter times. I know it sounds like that might make it worse, but dialysis for 4 hours makes your body work as much as running a marathon.
Also - I might try bringing in homemade scrambled eggs and toast. Hospital food can make an upset stomach worse. At her age, I'm sure she is used to homemade everything and not mass produced powered eggs. Or maybe oatmeal or grits .... something plain and simple but homemade.
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Oh dear mate
I feel for you :flower; :flower;
It reminds me of my Dad and his experiences with HD - lots of ups and downs
:boxing;
I can truely appreciate how you are feeling! Being a caregiver of a loved one can be heart renching. :banghead;
I agree with fox - maybe some thing home made, but make sure you speak with the Dr or dietician
Dad lost his appetite but always managed to eat his favourite cooked the way he loved it - egg and bacon pie (I'm not recommending that for your Gramma though)
We spoke to Dad's diatician a lot and kept track of his blood stats - might give you a bit more insight
I'm sorry I don't have much advice but to say hang in there , be positive
dialysis sucks
Take care and ask lots of questions not only here but also at the hospital - don't think for one minute that they know it all.
The more you are in their face asking questions or just having dialogue is important
Cheers
:beer1;
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When my nana was really feeble in hospital she wouldn't eat anything either. I remember sitting with her, feeding her yogurt by the teaspoon. I fed her a bit every now and again. She had become very very very grumpy and wouldn't co-operate with anyone, and was very weak also. But for some reason she agreed to eat this yogurt. A lot depended on how we approached her as she was so very tired and sick of being that way.
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Welcome to our community! I must confess that this was a very difficult thread to reply to. That is because I really feel your pain.
This cannot be easy. I can just assure you of my caring thoughts and prayers. I hope that things work out for you as soon as possible.
Bajanne, Moderator
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Hello and welcome to IHD. I'm so sorry that Grandma got a taste of "The Best Health Care System In The World" :sarcasm;
THEY Should know by now that contrast dye kills kidneys! How many people have been thrown on dialysis because of contrast dye. God help us!
:banghead;
Pour Nepro into a cup or bowl and freeze it. Like ice cream. She may like little bites of it. To drink it I have to have it cold. I like the butter pecan.
You sound desperate. Stick with us and we will answer your questions. :cuddle;
Rerun, Moderator :welcomesign;
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thanks once again for all your replies- so very helpful!
My Aunt is planning on making scrambled eggs at home and bringing them in for her- I advised low expectations so she is not crushed if gramma refuses them after Aunts high hopes and efforts.
I do like the idea of nepro-cicles! I will bring the berry and the pecan home and make some for her...probably ice cubes size to start and then some 4 oz size, maybe?
Also- sorry your Nanna was so terribly grumpy natnnnat, but it is comforting to see we are not alone in that!
I have questions about the contrast dye, about finding members here that are 75+ females that Gramma can relate to and about working with Gramma being the Granddaughter 40 yrs her junior without making things worse....
Am I in the right forum for that? Should I start a new thread?
Thank you again!
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Go to Dialysis - General Discussion to start a new thread on that.
Rerun, Moderator :waving;