Help pls, Just told I need dialysis

[ctorrez]

Well I just got the bad news and I need help. I think I am getting depressed. I run some apartments for my family and since I have been told I have done about 5 mins. of work. I didn't get out of bed until noon today. I live with my fiance and her son, so I did get up and take him to school and acted like I was going to get some work done, but once she left for work I found my way back to bed. I just don't have the drive now. It hasn't been a week yet and they are still doing tests but the doctor says I am in stage 5. whatever that means, and that I will need dialysis in 4 months. He referred me to a transplant doctor so we can get started making plans to try to find a suitable donor since I don't have time to wait on a list. I just feel like everything stopped. Did any of you feel the same? I am only 32 for gods sake! Besides a few extra pounds I am healthy, I am sure it will help my body cope with all of this, but I just feel mentally drained. It has been on my mind all day every day since I was told.

[YLGuy]

Hey Chris.  I am in the OC as well and have been on dialysis for 3 1/2 years.  I am wondering if your neph put you on a renal diet?  It is a lot to take in.  I am still learning a lot about my disease.  This is a great place to get good information.  If this continues I would talk to my doctor about depression. 
Take care,
Marc

[ctorrez]

Hey yl guy. As of now no diet. Im sure I will be put on one soon. Since I found out I have only been eating lentel soup, and salads. Oatmeal for breakfast. I am being sent to a vascular doctor next month and also to a transplant guy sometime soin. I think the dialysis center will have a dietion, not sure

[drgirlfriend]

Welcome to IHD! This is a great place to get answers.
Sorry to read about your bad news. Kidney failure was a surprise to my boyfriend almost 2 years ago. He's only 27! Once the shock wears off, you will find out what you need to know from your doctors. If you feel overwhelmed, I'd suggest taking your fiance or someone else you trust with you to the Dr. I went to all the appointments with the boyfriend to make sure we were both hearing the same things. Being freaked out messes with your ears! The boyfriend has been on peritoneal dialysis for just over a year and been on the transplant list for a year. I know a living donor is preferable, but what else is going on that you can't be on the list?

[ctorrez]

Hello drgirlfriend. Love the screen name. Ya I will yake my fiance from now on. I really wast expecting this type of news. She was at home when I was told. Wish she would have been with me. How does he like that type if dialysis? The doctor says they will recomend nocturnal dialysis for me. I dont think I want the machines in the house as a constant reminder, so I think I will try to go in a center for it.

[drgirlfriend]

Thanks! The boyfriend immediately opted for pd because he still needs to work. (I'm glad he did cause I'm a little creeped out by blood!) His body does very well on pd. After a few months doing manual exchanges, he got on the cycler. Nocturnal (hemo & pd) is best if you can't be interrupted to do exchanges during the day. It would be really inconvenient for him to do daytime exchanges right now, so the cycler is great.

[Sydnee]

sorry your in this boat too.
I think it's normal to get depressed after you get this kind of news.

Get all your options before choosing which dialysis is best for you. Talking to the vascular dr and getting vein mapping may help you make your choice.
ask any questions you want.

[Rerun]

Hi, and welcome to IHD.  I'm so glad you found us.  As for stage 5.... there is not a stage 6.  Too bad you didn't know about stage 2 ,3,4 hua?  Kind of a shocker.

You have a few weeks and there is a pre dialysis diet and a post dialysis diet so maybe you could give your kidneys a break if you were eating the right things for pre dialysis.  I think low on the protein .  After you start dialysis it is high on the protein. 

We have a predilaysis section.  You could look through that.

It is awful news but dialysis does keep us alive.  Lots of postings here on transplants too.

Rerun, Moderator    

[MommyChick]

 
I know being told you need to start planning for dialysis is a lot to take in, but were all here to help & we have all been through one thing or another with CKD. So feel free to ask as many questions as you like & someone where will have the answer. Good Luck & God Bless!
 

[Mr Pink]

Hi there. Welcome to the forum. I have a few points for you;

1 - Dialysis is not the worst thing in the world, although it is time consuming... but it's not the worst thing in the world!
2 - You have four months left. Go out and get hammered!
3 - The fourth month will suck b@lls. You'll feel sick, your appetite will go out the window, and you'll want to sleep a lot.
4 - You'll feel a range of emotions about anything and everything.
5 - You'll feel much better after a week on dialysis, and will continue to improve with further treatments. It want make your kidneys better, though... unfortunately.
6 - Because you are so young, you'll be transplant listed, and will receive a transplant at some point, so there is light at the end of the tunnel, even if that light seems a bit dim right now.
7 - You'll learn things about you body and health in general that you never knew before.
8 - You'll meet some amazing people, patients and carers alike.
9 - You'll lose weight. Excess fluid is removed during dialysis. In the first month, 10 kgs was removed from me, and they're still deciding on my dry weight.
10 - You'll be able to have contact with us, to vent or ask questions about what is happening to you.

The most important thing to remember is point number 1! Dialysis is not the worst thing in the world. Good luck.

[billybags]

Welcome to the world of dialysis, ctorrez.         Yes it is scary when you first learn that you will need dialysis, especially when you are young. There are so many things to learn about. My advise is learn as much as you can about it. We are all here to help you. Feel free to ask any questions. Take your time to sort out what kind of dialysis would suit your life style best. You have choices, do not be pressed into some thing you do not want. You are young so you stand a good chance of a transplant. It is a shock to your system, so deep breaths, one day at a time.

[lmunchkin]

Hello Torrez.  When my husband was diagnosed Stage 5 ESRD, we had no clue.  It hit us like a Ton of bricks.  As time went on we learned alot about his disease.  We rely heavily on our Faith in Jesus.  Now after all this, we have settled with D. at home.  Its no picnic, but it has gotten so much better over time.  You just learn to live with it and it becomes part of your life.

Its not the end of the world for sure.  Hang in there, Torrez, you will get through this.  Come here to vent, comment or ask questions.  All here know what you are going through.  We hope to help in some way, to make this an easier life for you.  Many young people dealing with this Crap.  It is sad, but Mr. Pink says it best.  He knows all too well what this disease has done to him.

Will be praying for you.  God Bless,
lmunchkin

[Alex C.]

" Since I found out I have only been eating lentel soup, and salads. "

Stop the lentils. They are high in protein, potassium and phosphorus. If you really are stage 5, you need to get your protein intake down NOW. Probably below 30g/day (which will require you to take amino acid supplements). You'll also need to avoid foods high in potassium and phosphorus, which means no beans, no nuts, no tomatoes, no potatoes, etc. This MIGHT get you a few months more before dialysis, hopefully enough time for an AV fistula to heal, so you don't end up with a heart catheter. You need to talk with a renal dietician NOW.

[Simon Dog]

I had over a decade to get ready, and knew I was heading to dialysis for many years before my neph had "the talk" with me, and I've been on PD for 6 months now.

My suggestions:

- Learn as much as you can about the various options.  Your neph's job is to explain which one will work for you, but be careful not to let his/her personal preferences guide you in a direction you don't want unless it is clearly for medical reasons.    My original neph told me hemo was the way to go since "other people do stuff for you and you only have to attend to it 3 days a week", but he retired and the neph who put me on dialysis thought PD was a great option - and it has worked out very well for me.

- Consider PD.    Even if it only last for a few years, that's a few years less wear and tear on a fistula.   I am extremely happy with my decision to choose PD over HD.

- If you are going to PD, ask you neph if starting a bit sooner is advisable in your case to preserve residual function a bit longer.   

- If you go Hemo, consider home treatment.  But, this is not common with all centers and is something you may have to advocate to get.

I'm on PD, and I still work, travel, and do most things I did before dialysis.  Sure, there are some limitations, and international travel is out for me (possible, but I've decided not worth the risk/hassle), but life is still good.

If you can accept what is happening, and embrace a machine in your home as something that keeps you alive rather than a curse, you will find it increases your options.   Also, home hemo (with a cooperating neph) opens up the options to things like "short daily" or "every other day" rather than "3 times a week" which is a cost driven compromise in the level of care.  This is one area of medicine where the squeaky wheel gets the grease, and you need to learn to become your own advocate since you are going do have to deal with the machine (and by this I mean the dialysis industry, not the dialysis machine).

[CebuShan]

   

Glad you found us early! I didn't find this place until after I had been on D for a year! Such a relief to find out I was not alone in what I was feeling.
I did "in-center" for a little over a year and have been doing home hemo since September. Given the choice, I would have done home hemo sooner!
So much to learn. Don't get freaked out by "4 months". I was told I was Stage4 and borderline but held out for a year before going on D.
The diet isn't as restrictive as it seems at first. Especially if you or your girlfriend like to cook!
Hang in there and come back often with any and all questions!
Best of luck to you!

[Alex C.]

BTW, your bloodwork is often inaccurate. I went from 'nearly stage 5' to 'barely stage 4' in 3 months. Last time I saw my nephrologist, he told me that my numbers have improved across the board from where I was over 1 year ago, and that is due solely to diet. He says I've probably bought myself at least 2 more years before dialysis.