My Dad is very very sick kidney failure please help

[Roxanne610]

1996, at present he now needs a kidney transplant.  My family is devastated he is bones 5'11 131 lbs with clothes and so sick I just cant stop crying seeing him so sick. We are a very close family and my dad is the world to me, it didn't take me long to persued him to accept my kidney if I matched because he knows how neurotic I am with him that he had no choice from either myself or my bro.  Me and my brother have the same blood type, we also have to O positive universal donors who are willing to get tested.  Today he just had is fistula put in, so far he just is in a little pain. His 24 urine is at 18% I mean he is sicker with the kidney that liver its amazing and so scary...

I have so many questions and would appreciate it if I can talk to someone.  I'm crippled from this,,,I am getting comments like well you had for him an extra 13 years and you have to just accept it...Well excuse my language but F**** those people who say that THIS IS MY DAD MY FLESH AND BLOOD and I want him here as long as possible he has suffered so much and deserves to have some healthier years.  Anyone would like to talk so i can get educated cause I have million of questions besides some support emotionally...

Thanks Roxanne

[Joe Paul]

Welcome Roxanne, good to have you aboard.

[napala turki]

Hi Roxanne610,

Sympathy with your story... stay with us as a family..the IHD...

[Bajanne]

Welcome to our community, Roxanne!  I was nearly in tears as I read your intro.  I know EXACTLY what you are going through.  I lost my dad to kidney failure.  Because he was 88 they didn't even allow him to have dialysis.  And he was such an alive, alert person who still had things he wanted to say to our family and to our country.  I am glad you decided to join us.  We are a family here  and that is not just words.  You will discover.  Here you can have information and great support - lots of cyber shoulders and cyberhugs to get you through this challenge.  So keep reading and keep posting.  Let us know how your dad is doing.


Bajanne, Moderator

[Sluff]

  Roxanne to ihatedialysis.com,

You have come to the right place if you are looking for answers. Ask away and someone will help you.We all have one main common interest and that is ESRD ( end stage renal disease).  All your answers are here on this site somewhere. You can use the search feature just below your Picture, just type the word or words that you are looking for and click on search and your subject should come up.

Good luck and I hope we can help you through this difficult time.   

Sluff/Admin

[lola]

  ask away

[willieandwinnie]

Roxanne. You found the perfect place for information and support. Glad you found us and bless your heart. 

[monrein]

Roxanne, your love for your Dad is very touching, especially to those of us who know exactly what he is facing.  We are here for you and your family and we welcome you to this community.  You will learn a lot by reading through some past threads but please ask specific questions about your Dad's situation and we'll do our best to answer you.  Together we have an incredible store of experience with ESRD, both the physical and the emotional components, both of which are so very difficult with this illness.

I also want to say that kidney disease, like any chronic illness can really take a toll on caregivers, and people who care, as they watch their loved ones struggle.  Dialysis can help your Dad to feel better though and many of us here can speak to that for sure.  From incredible bleakness, the sun can shine again and this is what I'm holding on to as hope for your Dad and your family.

Hang in there Roxanne and we're here to help support you in this effort.
Gail

[Roxanne610]

Thanks everyone.... ....Yesterday he got his fistula in his arm so far so good a little pain but I think he is relieved its over.  They say it takes two months to heal and unfortunately we cant wait that long he cant go on suffering like this and not eating.  They might have to do the tubes in the neck to start the dialysis but are afraid due to infection he is a little more susceptible to infection.

I'm not sure if I posted this cause I dint see it in my original message... See we have a bit of complications my dad had a liver transplant from Hepatitis C  Feb 22, 1996, he had some set backs with that like 4 years after lymphoma,,BEAT THAT...then bone eating disease where two ribs had to be removed BEAT THAT..  Now this kidney shit excuse my language but cant the guy get a break he has been going through so much since then and until recently he was doing great.  My dad never was a complainer (like some men) my ex-boyfriend used to say you never give me any sympathy, I said well I say my dad go through a liver transplant with no complaints and when I lived home unless you had a limb hanging off there was no sympathy. 

Right now though he is so sick and I hope the dialysis will help him feel better...
Does anyone have any recipes that you could eat when you were at his stage not even on dialysis.  Also what are the odds that my brother or myself are a match?  I read on Plasmaphersis and Also also pair matching.....Is that a long process?

Thanks again guys for being so nice...this is heartbreaking...

[Romona]

  So many of us know what your Dad is going through. But not all of us have someone as caring and compassionate as you are.
As far as what to eat, that is rough. When you don't have an appetite, it is hard to eat. Then to have restrictions on top of it.

People drive me nuts when they try to point out the "bright side". I really try hard not to do that. Nothing people said to me made me feel brighter!
You and your brother are wonderful offering to donate! 

[kellyt]

Roxanne, I'm on the same journey as your Dad, but I'm not on the same boat.  I know for sure that you will get your answers on this site!  The people here are amazingly smart!
I had my fistula placed 1 year ago Oct 31st.  Luckily, I have not had to use it.  However, I met a man at my transplant evaluation who had his fistula placed and while they were waiting for it to "mature" he was given a chest catheter and he went to dialysis three days a week.  So I'm sure something will be done in the mean time while you wait for his fistula to "mature".

There is a section here called "Diet and Recipes".  Check that out and talk to his physician.  Maybe you could find something he can tolerate or wants.  I, myself, am pre-dialysis and I never lost my appetite.  It's changed for sure.  But I didn't lose it all together.

Hang in there.  Come here often and ask all the questions you want.  When you have time go through the Forum and read, read, read.  Many of your questions I'm sure have already been asked and you can get answers right away!

God Bless you and your Father.  You're a wonderful Daughter!!!!       

[boxman55]

Welcome to the site. Please go to the transplant forum to get some idea of the process. Also you can PM me anytime if you want to chat one on one. post your dialysis questions in the "General discussion " forum. There is a wealth of knowledge from our members just ask

Boxman, Moderator

[jessup]

G'day and 

 
You will find this website an absolute life line - lots of knowledge - I spend a lot of time reading previous threads

 

[graftgurl]

Roxanne 

I only began dialysis 2 months ago. My appetite was almost nill and I still have trouble trying to eat as much as I need to. My protein level is especially low. If his albumin (protein) level is low, this can actually cause his appetite to be very poor. Have you seen the pictures on TV of the starving children all over the world. They look anorexic except for their big bellies. This is due to the extremely low protein intake those children have. Ask your father's doctor or dietician about how much protein he is allowed to eat since he's at 18%. Some kidney patients need to take in lower amounts of protein, while others need more protein. There may not be much to do about it until he starts dialysis, but there is a medication they can give him to stimulate his appetite. It's called Megace and it was originally prescribed to chemo patients and AIDS patients to help them get an appetite so they can take in the proper amount of nutrition. Ask his doctor about it.

I can understand why you would be so upset when people try to tell you that you should be happy to have had him as long as you did. Don't they understand that you want to have him always? That children should not have to watch their parents go thru all this suffering? You are so emotional and crippled by all of this because you truly love and care for your father. That does not make it any easier to deal with though. We're here when you need us - come for support and answers whenever you need help.   

[RichardMEL]

Dear Roxanne... welcome...

I want to say to you that in all likelihood your dad will start to feel better after a few weeks/month or so on dialysis - it will NOT be instant so please don't think things aren't happening if initially he feels worse (sorry) when D starts - it is a shock to the body to have this procedure introduced and it needs to get used to it but I'm almost 100% positive that as/when he stabalises he will start to improve generally and feel better.

Yes the fistula will require 6 or so weeks to mature before use - any sooner and you risk blowing it and that's not good, so they will likely use a cathether initially.

I know it's scary for you and he's gone through so much but sounds like he's a tough guy and can take it. It will mean some changes, but hopefully for the better while you and your brother get tested. If your brother is the same blood type that's a great start and hopefully he can be a decent antigen match to make it happen. It could be a little more complicated with you but potentially still do-able.

It is beautiful you both want to help so much and stepping up - even if live donation for some reason is not an option from either of you - that you are stepping up selflessly is the most ANYONE could ask (I had the same issue with my two siblings). You clearly care so much but try and look on dialysis as helping to stablise your father in the longer term and make him feel better which I'm sure you all want to see.

Hang in there and welcome to IHD!!!

 

[pelagia]

Welcome to IHD.  There is a wealth of experience to be shared by the folks here based on first hand experience.  Some of us are spouses and caregivers and we have that perspective, too.  You are a wonderful daughter to be helping your dad on this journey.

Does anyone have any recipes that you could eat when you were at his stage not even on dialysis.  

The American Association of Kidney Patients (AAKP) website discusses pre-dialysis diet:

http://www.aakp.org/aakp-library/Diet-and-the-Predialysis-Patient/ (pre-dialysis diets for diabetics and non-diabetics)
http://www.aakp.org/aakp-library/eat-well-live-well/ (lists of foods to enjoy and avoid)

You should check with your father's doctor about details.  My husband was told to limit protein and reduce intake of foods high in sodium and phosphorus.  He was not told to limit potassium, but that may also be a consideration.  Taking Tums or binders (by prescription) helps with phosphorus control.  The side effects of having too much phosphorus, sodium (salt) and potassium in the body can be significant.

The National Kidney Foundation site also has useful information.  For example:

http://www.kidney.org/atoz/atozitem.cfm?id=101

Hope this helps.
 
 

[RichardMEL]

By the way Roxanne I forgot to say in my first post... those idiots talking like this is the end for your dad are uninformed about dialysis! Take no notice of them. Folks can and do survive for years and years on dialysis - and we have more than a few long time folks on this site. There's a guy in my unit who's been going for 19 years (he tells everyone every session - going a bit senile I think ) .... so any talk like that is definitely premature... so hang in there and I'm sure you will have plenty more quality times with your dad!!

[Ang]

 

[Mimi]

I am sorry you are so upset about your Father, but I can understand, I was very close to
my Father also.  There is much info on this site and the more you read and the more questions you ask, the more you will come to realize that ESRD is not the end.  It is a real
inconveniece however and it's not for sissies and your Father sounds like he can take it.  We
will all be watching out for your posts and questions.  In the meantime I will be saying prayers
for you and all of your family.

Love, Mimi

[Roxanne610]

  THANKS AGAIN FOR YOUR KIND COMMENTS AND THOUGHTS..XOXOXOXO

My dad's phosphorus levels are fine.  The doctor has not limited him on any diet restrictions due to the fact he cant eat but only mouthfulls.  I researched this product called Intramax and for those who need nutrients and vitamins this product is AMAZING.  In my research for my dad due to his liver transplant and now kidney disease I had to be very careful on what is good for him.  This product doesn't have to be broken down by the body, you swish it in your mouth and then swallow it.  it goes directly into you bloodstream unlike other vitamins that have to be broken down and by the time they get to your bloodstream you have hardly any benefit from the vitamin.  Intramax has 98% absorption and has 415 nutrients all that I researched and talked to my dads Dr about.  He thinks its OK for him to take providing him with some great nutrients that he is not receiving from eating.  if anyone is interested read Drucker labs and if you want you also can talk to Dr. Roth on-line he is so helpful. if you mention my name Roxanne he will know me by heart cause I have been terrorizing him with questions about my dad.


   
Roxane

[idahospud]

   glad to have you  us. Sorry about your dad.

[Lori1851]

Roxann,
((()))) to you. I was a caregiver to my son Dustin who we lost July 13th , 2008. I watched him go through dialysis. It is not and easy journey as a lot of wonderful ppl on here can tell you better than I. Your dad or you can talk to the dietician . They can tell you what foods  to avoid and what to drink and not to drink and how much. Everyone is different. I will be thinking about you and  your dad!

Lori/Indiana

[Roxanne610]

Thanks.....


My dads results are in for the 24 hr uriine test...My mom didnt tell me what exactly the numbers are but she said hardly anythere...He was 18% two weeks ago...THIS IS SOOOOOOOOOOOO HORRIBLE GUYS YOU DO YOU THINK HE WILL MAKE DIALYSIS.

[pelagia]

might be GFR?  see this thread or go to the home page and search GFR.
http://ihatedialysis.com/forum/index.php?topic=9606.0

[graftgurl]

Roxanne, my prayers are with you and your father. It sounds like everyone is doing what they can at the moment. Check out the weblinks that others have posted. There are some really good suggestions for you to try. Hang in there - we're thinking of you.