HELP!

[carol1987]

I am scheduled to begin dialysis on 9/14 and I am really struggling mentally!  Even though I knew that this day was coming i can hardly keep my thoughts contained!

With out a machine i will die.... 

I am going to be the healtiest dialysis patient ever! and no one will know I am sick

No one cares.

Will it hurt

DH  loves me and is so supportive  Dh has no idea how I feel and his positive comments annoy me , he is in denial 

I am becomeing a crying, snapping bitch!!     

How do I get thru these next days???  How do I get thru these next years???

[Red from Canada]

Take it easy!  The worry beforehand is usually much worse than the reality.  Which type of dialysis do you intend to do? Hemo in centre, or PD, or maybe home Hemo?

[carol1987]

hemo in center.... to start with... open to switch to home after i get used to the process....

I am thinking way too much.... 
going away for a couple of days... maybe the distraction will be good....

Thanks red... i know many have gone before me.... but  I am on a rollercoaster of emotions right now....

[del]

Carol , I am not on dialysis but my husband has been for the past 13 years.  I think he felt the same way - I know I did.  It is mostly the fear of the unknown. Hubby is a healthy dialysis patient as well. Home dialysis is better than incenter whether it be PD or hemo. Hubby for the past 4 years has been doing nocturnal home hemo and has found it to be the best type of dialysis he has done (he's done PD and in center hemo).    Going away for a few days will help tpo take your mind off of it for a little while.  Take care. 

[okarol]

It can be scary when you think of it in terms of YEARS! I know Jenna felt overwhelmed at first, ever a day at a time. But your fear and dread and imagination are much worse than the actual experience will be. You can do this, and people do care. We care. It changes your life, but it doesn't have to BE your life.  Please try to enjoy your time away, and come back and rant anytime!! 

[Stoday]

Carol, you're lucky insofar as you will start dialysis in good time. I should have started earlier but because I didn't I finished up with 8 days in hospital. I got very ill, so the benefit I found after only one dialysis session was tremendous.

I still remember the first time I had dialysis though. I was wheeled from my hospital ward through the non-public areas of the hospital in semi darkness. Past the laundry with puffs of steam so I was feeling like I was being wheeled to the underworld. Then into the renal unit where the sessions were changing over, everyone was busy darting here, there and everywhere. Machines were creating a cacophony with sounding alarms to demand attention. What a welcome for my first dialysis!

There is a piece of music that recreates my journey through the bowels of the hospital to the renal unit. Click to listen & watch the first two minutes.

(The music is the Descent to Nibleheim from Wagner's opera Das Rheingold)

[sullidog]

After my first d session I felt loads better then I have in months. You can also get cream to num the sites where they will be putting in the needles. I think you will really see an improvement in your life when you start. Yes I think it is normal to feel the way you are feeling at first, but you will still have your moments while you are on dialysis, trust me.
I agree, people seem to judege the way we feel and I hate that, they aren't the ones in the chair.
Troy

[Phraxis]

Carol, I was 'lucky" I was fine and then I had no kidney function (there was the small matter of two years being extremely high BP but alas if you asked I would have said I was fine) so I did not go through the "waiting" to go on dialysis. But I will offer some advice that was given to me and help keep me healthy while I waited for my transplant.

learn the diet and stick to it;
limit liquids, it is harder to take it off than you can imagine;
learn what the blood test results mean;
try to come into the clinic "cheery", there is plenty enough already waiting there for you to get you down;
you will probably be cold, long underwear, a light fleece blanket, wearing more layers, and turn up the heat helps;
eating was difficult, watching FoodChannel, having some cook "smelly" food (barbcue hamburgers worked for me) seemed to help;
and most importantly focus on what you HAVE rather than dwell upon what you lost (that gem came from my sister along with a great new kidney)

And a shameless plug for Ihatedialysis, the people here are a great support network that can help with allot of your questions. COme back often it helped me allot.

Good luck and safe journey.

[Marina]

Dialysis  sounds  a whole lot  worse  than it  actually is.

If you  do your  part  (follow  diet  and  fluid  intake)  you  will  do  alot  better than, yes  it  can be hard  at times  to  follow  fluid  restrictions,  but  drinking  too  much  not only  will be  harder  on your  body  when  it's  pulled off,  but it  stresses  out your  heart  even more.

Like  the other members  mentioned ,  be  prepared  for  a cold unit,  wear  layers, and  bring  a blanket. 

Have you  looked  into  PD  (peritoneal  dialysis) ?   I've  been  doing it   very  successfully  for  over  6yrs.
If you've  decided  to  get  on the  transplant  list,  let your  Dr  know  A.S.A.P  the   sooner the  better!!

Take  care, and  don't  forget  we're  here  for you!!!

[galvo]

Carol, as the others have said, the anticipation is far worse than the D. I felt the same as you before I started D. Now I'm a (relatively) happy chappy. Keep us updated.

[tito]

Carol,

I can only agree with what others have written. Believe me, the time flies - I've already been doing PD for a year. I have found my nephrologist and the dialysis nurses to be the nicest, most supportive people. There are lots of people out there, and on this board, to support you in your journey. Best of luck.

Pete

[Pam]

Reading this board is the best thing you can do. The more you learn here, the more you know what to question. May attention to every thing they do and ask questions ! After awhile you will get to know what the alarms mean. Get a script for Emla cream, that will make the sticks painless. I have button holes and the same tech established them. There are 7 techs in my unit and they all can stick me with no problems.
The worst problem I had was being so wiped out and tired after a session. The Dietitian told me to eat something high in protein as soon as I was done. I drink a Boost as soon as I am done and that seems to help enough that I don't need a nap every time. May attention to what your body is telling you and you will soon be feeling better.
Pam

[peleroja]

Don't think of it in days (plural) or even years (plural).  Just think of it as today.  All you have to do is get through today.  Have you considered PD?  I love it, get to do my dialysis while I sleep.  Even when I was on manual I could watch TV.  Just a thought.

[staceyand joe92]

I was so nervous when i started dialysis. I would cry at every treatment even though it wasn't physically that difficult the emotional side of it nobody warned me about. The first time I walked into the unit for D I looked at all of the other patients sitting in recliners....everyone looked so sick. Then I started thinking OMG am i really that sick? Up to that point I hadn't really felt that bad but the doc insisted that it was time for Dialysis. You have to go in prepared for battle. You have to be positive and own the experience...don't let it own you.  Being a Dialysis patient doesn't define who you are it is just the circumstances you have to deal with right now. Take care of yourself, watch your diet and water intake. Dress warm! I was always freezing no matter what I wore...hats and gloves worked for me and a Snuggie.( the techs can get to your arms but you stay warm so don't laugh)

[RichardMEL]

G'day Carol!

I almost feel like I don't need to write anything - everyone else has summed things up pretty well I think. The fear of it is probably going to be worse than the experience... but I also know that no amount of us telling you that will make it any easier. You know it is coming, but it still does mark a change in your life and the start of a new chapter. The story doesn't have to be a horror one though. There's more truth in your line that nobody will know you're sick than you probably realise - and that will be when you're getting decent dialysis. I'm always getting the annnoying "You look so well!" thing (from those that know) and those that don't know.. well of course they don't say anything.

I don't think your husband making positive and supportive comments means he's in denial. Surely he's doing what every loving partner would do - support YOU and try, in what little way he can, to help boost you up and make it easier for you to cope with things.

In some ways dialysis is what you make of it. What I mean by that is that attitude wise you can think it will be the worst kind of hell and the end of the life as you know it etc, or you can remind yourself that you will be doing dialysis to keep you alive... or as I say :"I don't live for dialysis, I do dialysis to LIVE!" - don't make your focus about dialysis and stuff that happens with that, focus on your non-D days and what the extra energy will allow you to do - to lead a more normal and fufilling life.

 

[Des]

I have been through the exact same thing - I started the 5th April.

I can just say (without being negative) it sucks!!!
I hate every second of it. The physical act is relativily easy apart from the first few times when they "find" you fistula's sweet spot. That hurts like hell! That is no longer a problem now.

The biggest thing for me was the fact that I am no longer available to spend time with my 3 teenage kids. I am no longer able to go camping because there are no dialysis centres near any of our camping spots.  I miss my husband ecpecially on Friday nights when I sit in the unit and he sits at home!!!!

You husband is not denying the problem but he is just grasping at the silver lining. Mine did the same. He helps my stay positive. Love him to bits and use his positiveness !!!!! You are going to need it in the months to come. 

I have to actively concentrate on staying positive here. I am not going to lie.... I still hate it. Coming here to IHD helps me a ton and without them I would not have been able to get through this.

[Jean]

Believe it or not, you are not alone in this. I am not on D yet, but, I know its coming. Thank God for IHD and the wonderful help we get here. In everything we need or want to know. Believe these folks who have advised you and it wil all work out for you too, and hopefully for me. I know I get a horrific stomach ache whenever I think about it too long, so, I just dont think about it for too long. Best of luck to you.

[pdpatty]

Everything will be ok,believe me. Been on hemo  little over 4 years. You'll see,nothing to fear. (But I did cry during my first season of hemo) The worst thing to overcome is the butthurt. Sitting for over 3 hours can really hurt the butt.
Make sure you take your blanket,earphones and whatever on that first day. I didn't have ANYTHING,I was bored and COLD for 3 hours 45 mins.

[kamar55]

I was so sick when I first started hemo 5 years ago, I really don't remember much (had septicemia and was in coma 12 days) ---only feeling sick, sick, sick. But it does get easier...Not better or even good, but once you get into the routine, things will go smoother. This past winter, I actually missed 1 1/2 sessions due to a blizzard and I felt so sick due to the toxins in my blood that I thought "This is close to what I felt when I first got sick" and I was never happier to go to my hemo session. Once dialyzed, I felt so much better and swore never to miss another session, even if Mother Nature intervenes again.

[monrein]

  to IHD and I hope that by coming here and reading about how others manage kidney disease you will find things to help you cope a little bit easier too.

[FindingNeverland]

I didn't really have time to think about it, I was in the emergency room when I found out my kidney had rejected and was shipped to surgery asap to have a catheter placed to start dialysis immediately the next day. Its really not that bad, just take it one day at a time. It's always been my theory that a good attitude makes everything much easier.

[carol1987]

Thank you all so much for sharing!!  I had a great weekend away and my mind was off of the Dialysis for a bit.. though thoughts did still creep in.

All of your advice really does help.... I am winning the battle over my fear at the moment .

It is true that i need to focus on days at a time.... not think about weeks/months /years.

I have the script for the emla cream and I will be getting together other things... blanket/snuggie etc that you all have suggested!