They say everything is shutting down

[Roxanne610]

Dad is sore he is home we are all feeling bad that he had to go through this and he had to endure pain on top of being so sick..Its sad..

Thanks everyone...
xoxoxo

[RichardMEL]

it's good that he's home around people who love him and care about him rather than at hospital which I am sure you all are well and truly sick of!!!!

I will have a (small) toast to you and your dad tomorrow night (NYE) with best wishes for a much improved 2009!!!!   

[adairpete]

Hi Roxeanne, My thoughts are with you and your family as your dad goes through this difficult time.  I wish him and your family nothing but a smooth recovery and much happiness in the new year and beyond!  One thing I can tell is that he is very fortunate to have such a loving and caring daughter.  It's been a struggle and ordeal for you but he has beniffited from your attention and hell-raising at the hospital.  I hope things are getting better.   

[pelagia]

Hope things are looking up a bit.  Hope to hear some news soon. 

[2_DallasCowboys]

Roxanne,

Please know I am thinking and praying for your Dad and all of you.
I hope he is doing better - 

Anne and Les

[Chris]

Wish there was someway that someone or something could help your dad. An old phrase comes to mind, but people like us know that there is another side to it, "It can only get better". I wish that was 100% true.

[paddbear0000]

I hope your Dad is doing better! He's in my thoughts and prayers.   

[Sluff]

Hope the new year is better for your dad and your family.

[paris]

I hope being home is good for all of you and you all can get some rest.  Sending good wishes to you. 

[Roxanne610]

Hello Everyone,,,,
Havent been on been in the dumps since New Years,,,New Years Eve really depressed me... He missed dialysis today he was too sore from the fall.  The drs said no pain pills but my mom gave him one percocet he never takes pills never ever..but hes in pain hes sore..I ran around for him to get him a comfy pillow for dialysis dont know if this theraputic pillow will help it molds to you but it seems a little hard, just in case im gonna go get him a feather pillow will help.... Any suggestions to help him get comfy when he sits in the dialysis chair???

His spine bone ends up hurting after sitting in that chair cause there is no fat padding on his back since he is so skinny      I ran today got him Linguini Bolognese he didnt like it,,but then I ran and got him gravy fries and he ate them with pink lemonade,,,he has a thing for pink lemonade.   Its soooooooo sad makes me sick to my stomach when I get home,,I stay so strong around him then it hits me always on my way home...he said to my mom last night cause he had a bad nite up and down up and down restless,,,and he said to my mom I dont think Im gonna make it,,and my mom says noooooooooo this is the way your gonna feel,,Roxanne talks to everyone and its the same with all the people she is talking to who started dialysis...I dont know guys I wish this hep C would go into remission we might have a shot but i dont know whats gonna happen..

[aharris2]

I ran around for him to get him a comfy pillow for dialysis dont know if this theraputic pillow will help it molds to you but it seems a little hard, just in case im gonna go get him a feather pillow will help.... Any suggestions to help him get comfy when he sits in the dialysis chair???

His spine bone ends up hurting after sitting in that chair cause there is no fat padding on his back since he is so skinny     

Rolando has had great success with a Waffle Cushion from EHOB for his wheelchair. It is an air cushion - there are other similar things but nothing else has been so effective. They make a full size cushion for chairs like a dialysis chair. You can search EHOB online and call them to place the order. The best day is a Monday. You should receive your order by week's end. PM me if you would like more info.

(We tried pillows, gel pads, a very expensive therapeutic pillow which also seemed hard. Nothing has been so effective as this EHOB Waffle Cushion)

Your dad (and you) is having such a hard time. I hope you can find a way to soften the edges.

[pelagia]

Hang in there Roxanne.  He's eating and that's good. 

Have the docs given him diet recommendations?  He probably needs some protein if he is on dialysis.  I think that would be important for helping him to keep up his muscles.  Ask about eggs or beef, or maybe get one of the special protein drinks made for those on dialysis (the dialysis clinic can give you the brand, or someone here can chime in as I've forgotten the names).

I think you need a hug  because you have been through a lot.  Here are some for your mom and dad, too 

[RichardMEL]

Gee Roxanne if someone could come up with a way to make those damn Dialysis chairs comfy they'd be on a bloody goldmine!!!! I'm 38 and relatively healthy and non-sore and find them a pain in the... everything to sit in!! Even when they get new chairs in they still suck - so I totally sympathise with your dad and the problems he is going through.

One thing I really must stress here that I think is vitally important for your dad's health... you said he missed Dialysis because he was so sore... really this is not good for him (I am sure you know this). The more he misses the more toxins will accrue in his blood and the more stres it will put on his body's systems which are already overstressed with the liver and hep C stuff. I'm sure the unit and whatever have told you guys this but really even if he feels horrible he should not miss Dialysis if at all possible. I've not missed one session in 2.5 years because I know how important it is to keep regular dialysis going. Heck we get so little in comparision to what our kidneys need every little bit counts (and that's what I tell myself when I enter hour 4 of 5 and I so want out!!)

I hope people's pillow suggestions help. I take in 2 pillows in addition to the supplied pillow (and I take a blanket too). I use a firmish one for my pack, and I use a softer one for my backside so I sit on the pillow rather than the hard chair. I seems to help a little. It's quite funny the nurses see me bring all my stuff in and one time they said "Are you all set to go Camping?" 

Thinking of you and sending hugs 

[Roxanne610]

hey richard u up wanna calll me

[circleNthedrain]

Hi Roxanne...I'm so sorry your dad is having such a rough time.  You are such a sweetheart, it makes me cry.  I have found just sitting on a thick foam pad really help the d chair.  Like Richard said, protein is really important for d patients.  Ask the neph or nurses at the unit about Nepro.  It is a protein drink especially for dialysis patients.  It really helped me when I first started d and I still drink a can a day..  You and your Dad are in my thoughts and prayers.

[Roxanne610]

Hello,,
as you see im still awake,,,he is on that and protinex in a tablet...we are getting his teeth fixed Monday he says maybe he can eat more,,I hope and pray he can this is sooooooooooooooooooooooooooooooooooooooooooooooooooo sad there is no words,,im so sorry for all of you that have to suffer like this it is so unfair....

love you all
xooxo

[okarol]

Hi Roxanne,
I am sorry it's been so hard. I remember my mother-in-law could barely eat, but she seemed to enjoy tapioca pudding so we got her as much as she wanted! I'm not sure that's on the renal diet, but sounds like he needs some tasty, fattening stuff. Best wishes for better days.
 

[RichardMEL]

Sorry Roxanne I had to log off and walk home from where I was lol.

I just had a thought that karol reminded me of. When my mother was in hospital and was barely eating also and they had her on these icky Enlive (I think that's how it was spelled) drinks full of nutrients... what we did was make a few dishes that she liked... my brother does a Penne she loved and her partner made these potato things she loved... so we'd take those in and she'd eat that. Maybe if your dad has some favourite dishes that you or your mother or someone else makrs, or you can buy, it might induce him to eat a little more.. Say if there's two or three things he really likes you could maybe take turns (so there is some variety)... also be mindful of course of the renal diet so not too much potassium etc (maybe a word with a dietician might help) but I guess at this point anything to get him to eat a little more would be a bonus I think.

Hope that helps a little. 

[monrein]

How about Suplena protein shake (for renal patients), ice cold, sipped through a straw.    Roxanne.

[nursewratchet]

Protein is the BIGGY for dialysis patients, and especially with HepC.  The Hep has a tendancy to delete the protein.  There is a liquid protein you can add to anything he will eat or drink.  You can put it in the lemondaid that he likes, or anything else for that matter.  He should have about 75 grams of protein per day.  Talk to the dietician, should be able to get you a liquid. 

[Roxanne610]

Hello,
Thanks everyone,,,my mom has the suplena I dont know why he isnt drinking it though..He is on a protein pill Protinex... Just got off the phone with my mom he doesnt wanna go to dialysis again,,he says he is in pain,,his side hurts  probably broke a rib from the fall for him to complain he is hurting badly..

[Roxanne610]

Thanks for the hugs I need them....   Now my dad is still peeing my mom called the dialysis center and they said to watch out for shortness of breath,,if any go to the hospital...He told my mom you dont know how I feel..   What happens when you miss dialysis I mean say just for an example someone is sick with the flu cant get out of bed what do they do?  Just curious..

[okarol]

Here's a thread about missing dialysis http://ihatedialysis.com/forum/index.php?topic=4847.0
I hope your dad is getting some pain meds. Be careful of constipation if he is.
 

[nursewratchet]

If he HAS to miss, be careful with his fluids.   Give him whatever he wants to eat, though he may just not feel like eating anything at all, and that is ok too.  Food is a "nurturer", it is our nature to feed when someone is not feeling well.  His body will take in food when he can tolerate it.  This is a hard time for you all, but you are doing a great job.   

[nursewratchet]

Roxanne,  PLEASE don't take this in a bad way, but here goes.  Since your Dad has HepC, as well as renal Failure, he could go on Hospice Care.  He could still go to Dialysis.  It doesn't mean he "is about to die".  It means he would have access to either by phone call, or by home visits, RN care, assistance with personal care, as well as Social Workers.  It is exceptional care and extra help for you and your family.  They would be a wealth of info and care for you all.  I used to be a Hospice Nurse, and MANY times took care of someone through a rough patch, only to discharge them after they were better.  It is not always for terminal care.  Hospice is the best resource for caring for , and educating for symptoms.  Either way, I know you are taking THE BEST care of him.