I hate my hemo catheter with a PASSION

[RightSide]

I hate my hemo catheter so much, you have no idea.

I hate how it itches terribly under the bandages.

I hate how they pull the hair off my chest when the bandages are removed, and it hurts like the dickens.

I hate the way the bandages loosen up, even with a sponge bath, to the point that water leaks under them and wets the catheter site.  So I dash out of the bathtub to find more Tegaderm bandages to fasten it down some more--until those start coming off, at which point I repeat the cycle.

I hate the way it looks.

I hate the way it feels.

And after thirteen months of wearing this supposedly "temporary" hemo catheter, I'm freaking out.

I've had four operations to try to create a fistula.  The first three failed, one spectacularly (burst).  None lasted long enough for me to get even one day's use out of any of them.

I'm now trying out the fourth one.  I've had four treatments with it, one needle. 

If my nephs think that they are just going to leave this catheter in me indefinitely "just in case", they can forget it.

Win, lose, or draw:  On January 4 (if not sooner), I'm calling my vascular surgeon to set up an appointment to take the catheter out.

I'm not going through another year with it.

And I will never, never let them put another catheter in me.

Win, lose, or draw, this fourth fistula is likely to be my life's last stand.

[Rerun]

I hear ya Brother!  Hallelujah! I will never have one again!

                             

[YLGuy]

I can relate.  I bought self seal cling wrap and taped a big piece over my cath. I used plastic tape and made sure it was taped VERY well.   I then bought a hand held shower nozzle.   I was able to take showers.  You have to be very careful and lean and bend so you don't spray around your site.

[stopcomplainin]

trust me, i understand your issues having them time 3 and more but ...

HOW CAN YOU HATE SOMETHING THATS KEEPING YOU ALIVE???

[kimcanada]

Everyone walks their own path, what one person can put up with is impossible for someone else..

I am also sure that Rightside has thought about this ALOT... this fistula will work Rightside, thoughts and prayers going your way
 

[Rerun]

trust me, i understand your issues having them time 3 and more but ...

HOW CAN YOU HATE SOMETHING THATS KEEPING YOU ALIVE???

If you were locked in a freezing room and someone came in every other day and kicked the crap out of you and never let you shower and only threw you a carrot stick once a day.... but they let you live!!!

Would that be worth it?  At some point if you have so much trouble with dialysis and you are never well and you are just being tortured then IT IS NOT WORTH IT~

Rightside will be fine.  They will get your fistula working. 

I've had MANY DAYS where I don't think dialysis is worth it and I'd rather be in heaven.  LORD JUST TAKE ME!~   

[stopcomplainin]

heck yeah it would be worth it if you have a family and faith.

Listen I have had multiple failed fistulas, grafts and have had a catherter for almost a year.  I have had 8 catherter changes and actually need another one but my surgeon and drs think it isnt worth it becasue my body is fighting every attempt for dialysis.  My only hope is for a kidney ASAP. 
On top of that i am allergic to all tapes - tegaderm paper everything.  So I have been essentially itchy and uncomfortable for a year with welts, blisters etc. 
I feel his pain, I guess I just look to the bright side, even when there isnt a visible on on the horizon.

I refuse to let any of this get the best of me - I LOVE MY CATHETER and know i am blessed to still be here.

I know you guys come here to vent but , why the defeatist attutude?? 

[kimcanada]

I often wonder why putting up with whatever someone else decides is the right thing to do , with a smile is looking on the bright side.  Life is life and death is death, its what has been since the beginning of time. and just because someone made a machine that keeps you alive, I find it amazing that just because that machine is there that that is the only decision that is positive.

I have been on dialysis for 3 years, and basically i am one of the healthy ones... and I have thought about not doing dialysis.  Its just the way it is, everyone is different and everyone has different levels of quality of life, to paint us all with the same brush because we have no kidneys is extremely insensitive.

[stopcomplainin]

ok you are one of the healthy ones and have thought of stop dialysis.  Not only is that insensitive but irresponsible.

Life is Life and death is death, but once again I reiterate - why the defeatest attitude.

I think i ll sign off and contiinue to pray for those of you negative people, give strenght to the positive uplifting people oin here and thank God I have so much to live for that I dont have to have a terribel attitude.

Good Luck to all!!

[kimcanada]

happy praying!

[Savemeimdtba]

Aww come on guys... let the guy vent, the catheter IS horrible whether it's saving our lives or not, it sucks and there's no getting around that.  We all have our positive and negative days, that's life.

Anyways, rightside, I have a few suggestions for you that might make things a little better in the bathing area.  I always covered my bandage area with press n seal wrap when I took a bath, it sticks to your skin and is extra protection, also it doesn't hurt when it comes off.  When I wanted to wash my hair I would put a hair dressers cape on and use the removable shower head (usually someone would help me.. hard to do it yourself and not get completely soaked). 

I hope maybe that helps a little.. I know things are horrible for you right now, I remember... and I didn't have the catheter nearly as long as you have.  I can understand wanting to give up, but hang in there, things are bound to get better.

[Maker]

Rightside, 

Believe me, I am there with you!  If you read my past posts you will see that I have done a bit of complaining myself about this awful catheder.  And I haven't even begun the process to get my fistula yet, because my HMO is giving me trouble     

Here is what I tell myself every day:

1. I get to take a relaxing bubble bath instead of a rushed shower 

2. I can do anything I want during dialysis because I don't have to hold my arm still (I use my laptop almost the entire time.  Monday I wrote a research paper for my grad class).

3. If I would have waited to start dialysis until I had a functioning fistula I would probably be feeling really really bad right now!

4.  Every day, the catheder hurts (just the tiniest bit) less.

5.  I got to go shop and buy some new clothes that hide my catheder.

I know its hard to see the bright side when you have this painful ugly thing hanging out of your chest, but I complained nonstop for the first week and it didn't make things better.  I pray you and I both will soon have working fistulas.  For now we can look forward to that blessed day when the catheders come out 

And one more thing...have you thought about asking the nurses at dialysis to teach you the sterile methods to change your own dressing on non-dialysis days?  I was so fearful of infection (I sweat under the tegaderm when I exercise) that they showed me how to do it in front of the mirror and gave me all the supplies.  I know that wouldn't work for everyone, and obviously discuss it with your Neph first, but for me it has been great.  No more bandages peeling off all the time!!

[peleroja]

Now me, I'm just the opposite.  While I don't "love" either my hemo catheter (when I had one) or my PD catheter, I would much rather have one of those than a fistula (man, have I seen some ugly ones) and those two L-A-R-G-E needles!   I take it that PD is out of the question?  For me, at least, it is a lot gentler on the system, can be done at home, easier to travel with, etc.  I gotta be honest, I don't know how any of you put up with hemo year after year.  I hated every minute of the 6 months I was on it. 

[Rerun]

ok you are one of the healthy ones and have thought of stop dialysis.  Not only is that insensitive but irresponsible.

Life is Life and death is death, but once again I reiterate - why the defeatest attitude.

I think i ll sign off and contiinue to pray for those of you negative people, give strenght to the positive uplifting people oin here and thank God I have so much to live for that I dont have to have a terribel attitude.

Good Luck to all!!

Bu-Bye                 

[Maker]

Now me, I'm just the opposite.  While I don't "love" either my hemo catheter (when I had one) or my PD catheter, I would much rather have one of those than a fistula (man, have I seen some ugly ones) and those two L-A-R-G-E needles!   I take it that PD is out of the question?  For me, at least, it is a lot gentler on the system, can be done at home, easier to travel with, etc.  I gotta be honest, I don't know how any of you put up with hemo year after year.  I hated every minute of the 6 months I was on it. 

Oh ya Peleroja, I forgot that one...

Add #6 NO NEEDLES!  to my list

[Rerun]

OH yeah, and it is because of my FAITH that I know heaven is a better place so I'm not scared to go when the time comes.  I know I'm going to be PISSED when I get there and things are wonderful and I've been down here struggling and fighting to stay alive.

               

[Maker]

OH yeah, and it is because of my FAITH that I know heaven is a better place so I'm not scared to go when the time comes.  I know I'm going to be PISSED when I get there and things are wonderful and I've been down here struggling and fighting to stay alive.

               

Amen to that    I'm ready to go anytime the good Lord decides my work here is done!

[KICKSTART]

There are 2 issues here , 1) The catheter 2) Dialysis.

Is it that you have actually had enough of dialysis and so will stop ? If thats the case then thats your absolute right.

Is all this because of the catheter ? If it is then you need to change your mind set. Im walking round with 2 in at the moment , a pd cath and one in my neck , which shows/hurts etc and for a woman i think its harder to accept. Men if they have scars are tough , butch , women are not seen that way. Im presuming youre a man? re hairy chest !  On a practical note , firstly i was told not to shower while this line was in and i cant bathe while my pd one is in (no i dont pong) but i have to make do with strip down washes all the time. So maybe you just need to be more careful about getting it wet ? Secondly , while you are having your dressing changed , whip out your razor and shave that area , problem solved of ripping hairs out ! If it just the cath (not dialysis) WEAR your cath with pride ! I am not and never will be ashamed of it because it keeps me alive ! I will show my neck one to anyone and everyone who asks to see it , but i wont do the same with my pd one ..ONLY because im not in the habit of dropping my drawers in the middle of the street !    Every problem has a solution , you just need to think of it. If youve just had enough of hemo , fair enough . KS x

[paul.karen]

(no i dont pong)?  Whats that mean?
And a strip showerr huh     

I hope it all works out for you Rightside.
I totaly understand what your saying.

[Lillupie]

hi,
 I am with Peleroja on this. Have you thought about PD. I also agree with her, I dont like those big needles and i have seen some UGLY fistula arms.
 I feel for you having those failed fistula scars. I guess that is a reason why i refuse to go on hemo permantly.  I feel for those people who have multipe surgeries in their arm just get get an access. Geez. People talk about PD so much that you are going to get an infection, and blah, blah. I will deal with the infections if i have to and not go to surgery. That is my soap box.

Complain, vent all you want here. If not, I hate to say it because i really like this site, there are other kidney sites to go  to. When i first started dialysis, and i found Kidneyfun.com, I went on there, and had nothing positive or uplifting to say. I thought out stopping dialysis, i wanted to just die and get it over with. I just didnt know what to do. I was 24 at the time, didnt seem to have anything going for me, had a baby, not married, live in a lower income area that i hate, noone i knew even wanted to get tested (they still dont), dont have much of a support system.
 
 Overall it seems as though we all have gone through something being on this terrible dialysis. What i mean is I think there are so few people who get diagnosed, start dialysis and do PD or Hemo without a single complication, get a transpalnt and live the rest of their lives wtihout anymore health problems. I get a sense that the general population that doesnt know anything about dialysis will believe this, you go to a center, and then you are ok, and thats it. In reality that is not it!

Stopcomplain, people have different lives and circumstances. I am glad that you have such a positive attitude! Thats great. People who have a large support system, friends and family, which i do not have have a very concrete reason to push on and feel good. It sucks because I happen to know someone who is about  my age and who needed a kidney and she actually had about 16 people get tested, and i have not had a single one in 2 years of dialysis. But despite dialysis I am going to do whatever i can to try to make a differnce in others' lives because there are so many people out there who feel alone in this.

Lisa

[Slywalker]

Hi Rightside - I hear you about the hemo catheter.  I had one in my jugular vein for only five or six weeks and it was awful - and hemo was not kind to me at all.  Fortunately I was able to do PD but getting there was not fun or easy. 
And, I was able to cover it with a tegaderm bandage so I could shower - thank goodness.

And, someone said earlier you couldn't bath if you had a PD catheter.  That wasn't true in my case.  My doctors and nurse all advised it was okay to shower but you had to clean the exit site with antibiotic soap.  They said you couldn't take baths or go in swimming pools.  It all worked out for me, plus PD was way better on my system. 

Good luck Rightside - hang in there - I'm sure something will work out eventually.

[*kana*]

ok you are one of the healthy ones and have thought of stop dialysis.  Not only is that insensitive but irresponsible.

Life is Life and death is death, but once again I reiterate - why the defeatest attitude.

I think i ll sign off and contiinue to pray for those of you negative people, give strenght to the positive uplifting people oin here and thank God I have so much to live for that I dont have to have a terribel attitude.

Good Luck to all!!

Everyone has a right to make their own choices in life even if it goes against what you feel is right.     We all need to vent, we all get to the point where we don't think we can take anymore.  It it ok to hate something that keeps us alive.  We don't know what the OP is going through on top of a painful cath.  It all tends to add up.   

[hurlock1]

I don't blame you.

[RightSide]

ok you are one of the healthy ones and have thought of stop dialysis.  Not only is that insensitive but irresponsible.

Life is Life and death is death, but once again I reiterate - why the defeatest attitude.

I think i ll sign off and contiinue to pray for those of you negative people, give strenght to the positive uplifting people oin here and thank God I have so much to live for that I dont have to have a terribel attitude.

Good Luck to all!!

Everyone has a right to make their own choices in life even if it goes against what you feel is right.     We all need to vent, we all get to the point where we don't think we can take anymore.  It it ok to hate something that keeps us alive.  We don't know what the OP is going through on top of a painful cath.  It all tends to add up.

Yeah, I didn't mention I had 7 surgeries this past year, with at least two more expected this year.