It All Happened So Quickly!

[galvo]

I decided to have a go at dialysis on Monday. On Tuesday I was told to get to hospital in a hurry; this I did and was admitted and promptly put on a vascular catheter. This was a bit of a shock to the system!  I have been dialysed 3 times so far and am due to go back on Monday to have a chest catheter put in.

It's all happened so quickly that I am having trouble adjusting. I presume time will help. The catheter procedure and the actual dialysis have gone smoothly enough but I feel far more rotten than I did before. I am absolutely stuffed and and miserable. How long before things improve? My chemistry has shown marked improvement - urea 41.5 to 28.4, creatinine 898 to 679, GFR 5 to 7. Why do I feel so rotten???

I've had some bleeding from the catheter site to-day. I went to hospital and they said not to worry about it, unless it gets worse.

[Wallyz]

Welcome.  THe first few days are tough, especially if they are taking a lot of water off of you. This can cause you to have serious fluid shifts which are not pleasant.

I found that it took about three weeks (and some EPO) to start feeling human again.
Good luck, keep us informed.

[Rerun]

They call it "The Dirty Fishbowl Syndrome".  You have been slowly swimming in dirty toxin water and you got use to it.  Now that you are getting cleaned up it makes you sick. 

Just like when you take a fish from a dirty fishbowl and throw him in clean water.  He usually gets sick.

It takes awhile to adjust.  Even then, it is just like bowling.... Just when you think you have it down... you don't.

There is your dry weight which is always a moving target.  Basically, your dry weight is your true weight minus any extra fluid.  Well, guessing how much fluid to take off is an art.

Just keep reading this site when you feel up to it.  I bet you are having trouble concentrating which will improve. 

Hang in there.             

[lizabee]

It's a big adjustment, but it will get easier, welcome!

[dyann]

I am fairly new to the cath , dialysis thing to it does take time to get used to it is like a whirlwind  but in the last few weeks mt energy level has increased and instead of me telling the girls I need to go home and rest they r telling me to stop walking so fast  just keep positive

[billybags]

As you say it has all happened so fast. It is a shock to your system, not only have you got to accept you are on dialysis, but you also have joined what we call the "Journey" The start of some thing new.  It will get better, keep reading the posts, ask lots of questions, you will be fine. You will have good days and some not so good days as long as you remain positive you will be ok.

[Maker]

Hi Galvo,

I had bleeding from my catheder (actually a lot, it was running down my stomach) day after the surgery and about 2 hours after dialysis.  I ran back down to the center and they just changed the bandages and reassured me that sometimes this happens. 

Only problem I've had since is blood backing up in into the "tubes" where they put baby heparin.  I saw it but didn't get too concerned, but then when I went to dialysis the next day they said its dangerous because that heparin backed up into my system and they were concerned my catheder was going to clot.  Anyway, not sure what caused it but I am watching my tubes closely now and if it happens again I'll go for an immediate flush so they can fill them back up with heparin. 

Also I will tell you that after about 5-6 session I really started feeling better.  I think a lot of it is how toxic you are and how much fluid build-up you have when you start.  So stay positive and look forward to the day very soon when you will wake up some morning and think, "I actually feel human again!"   

[hurlock1]

I hated my catheter! I had one that came out in my sleep (I musta' put my elbow on it and rolled over) I was lucky I didn't bleed to death, Then they put in a "temporary" temporary catheter, that was just sticking out of my neck. They replaced it eventually. They all were painful. Sort of a dull ache. I was scared of using my fistula because of some of the people at the center had these twisty, huge, worm looking things on their arms that reminded me of an aneurysm. I had a friend die of an aneurysm right in front of his wife. I was thinking that I was going to have to just keep my catheter in for the rest of my life. But, I didn't. I'm using the fistula now with buttonholes. I've been on dialysis now for two years. I wouldn't say that I'm an old pro, but there are much fewer surprises these days. You seem to know all of these numbers (urea, creatinine and GFR) so at least you have the lingo down.
I didn't know I was feeling like crap until I'd been on dialysis for a couple of weeks. I still feel like crap right after dialysis, especially if I drink too much water between treatments. There are people at the center that I'm sure that drink beer and have to take off as many as 9 kilos of fluid a treatment. WOW! Just keep your fluid intake low and do what they tell you and you'll do fine. I get a pittance from the government in the form of disability. I just look at dialysis as going to work.
jmz

[Restorer]

I had the same problems. After 3 days of emergency dialysis in the hospital, it took me a week to recover. My body went all haywire - my feet swelled up even though I was okay on fluid, my feet went mostly numb, and I felt disconnected from my body. But after a week it went away.

[galvo]

Once again, thanks to all of you. I now accept that it's normal to feel lousy occasionally. To-day, Sunday, I feel absolutely great! What a roller coaster.

Yeah, hurlock, I am already starting to look at the regular dialysis as having a three day a week job. Not much cash in the paycheck, but at least I'll (hopefully) still be around.

Thanks again for the comments. I'll report back after the chest catheter is in.

[Maker]

I hated my catheter! I had one that came out in my sleep (I musta' put my elbow on it and rolled over) I was lucky I didn't bleed to death, Then they put in a "temporary" temporary catheter, that was just sticking out of my neck. They replaced it eventually. They all were painful. Sort of a dull ache. I was scared of using my fistula because of some of the people at the center had these twisty, huge, worm looking things on their arms that reminded me of an aneurysm. I had a friend die of an aneurysm right in front of his wife. I was thinking that I was going to have to just keep my catheter in for the rest of my life. But, I didn't. I'm using the fistula now with buttonholes. I've been on dialysis now for two years. I wouldn't say that I'm an old pro, but there are much fewer surprises these days. You seem to know all of these numbers (urea, creatinine and GFR) so at least you have the lingo down.
I didn't know I was feeling like crap until I'd been on dialysis for a couple of weeks. I still feel like crap right after dialysis, especially if I drink too much water between treatments. There are people at the center that I'm sure that drink beer and have to take off as many as 9 kilos of fluid a treatment. WOW! Just keep your fluid intake low and do what they tell you and you'll do fine. I get a pittance from the government in the form of disability. I just look at dialysis as going to work.
jmz

What's up with this??     You are scaring me...I don't want my catheder to come out!  Should I tape it down like crazy before I go to bed or what?  I read this post yesterday and dreamt about the thing coming out last night     

And I agree, dull ache...ALWAYS

[MissyKew]

Maker, you could tape it down.  I have never had any problem with mine getting pulled while i was sleeping.

[RichardMEL]

I agree - 2 to 3 weeks you should stabalise more and your body should become used to the way dialysis affects it, and you should see a more general feeling rather than the roller coaster thing - at least you're feeling much better for a change which seems positive to me!!!

Give it a few weeks till things are bedded down and it should become much more of a routine for you. Boring, but no surprises hopefully!